Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: Andy Battaglia on April 11, 2009, 01:16:51 PM



Title: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on April 11, 2009, 01:16:51 PM
Finally, both an admission that thal minors had never been studied and that they do indeed show symptoms, even when they are unaware they are thalassemia carriers. I really would like to see this whole study but I can only find the abstract.

http://www.ncbi.nlm.nih.gov/pubmed/18341640

Quote
Is the beta thalassaemia trait of clinical importance?

Premawardhena A, Arambepola M, Katugaha N, Weatherall DJ.
Faculty of Medicine, University of Kelaniya, Colombo, Sri Lanka. anuja@mfac.kln.ac.lk
Although the beta thalassaemia trait affects millions of people worldwide, there have been no controlled studies to determine whether it is associated with any clinical disability or abnormal physical signs. To address this question, 402 individuals were studied: 217 with beta thalassaemia trait, of whom 154 were aware of the diagnosis and 63 were unaware until after the completion of the study; 89 normal controls; and 96 controls with mild hypochromic anaemia. There was a significant increase in symptoms ascribable to anaemia and episodes of pyrexia in those with the beta thalassaemia trait that were not influenced by prior knowledge that they had this condition. There was no difference in physical findings, notably splenomegaly, between those with beta thalassaemia trait and either control group.

Please, please show this to your doctors when they say it's all in your head or you only think you have symptoms because you know you're a carrier. It makes no difference whether you know or not. The symptoms are very real and it's time the medical profession acknowledges this fact.

The full document is now attached to this post as a pdf file.


3/2/12  Added.
This is an old study from 1982. Why are most of the thal orgs and the medical profession sticking to the story that thal minor is asymptomatic? 46% of the thal minors studied were symptomatic.

http://www.jpgmonline.com/article.asp?issn=0022-3859;year=1982;volume=28;issue=1;spage=4;epage=8;aulast=Agarwal

Quote

Year : 1982  |  Volume : 28  |  Issue : 1  |  Page : 4-8
Symptomatic beta thalassemia trait (A study of 143 cases).

Agarwal MB, Mehta BC

How to cite this article:
Agarwal MB, Mehta BC. Symptomatic beta thalassemia trait (A study of 143 cases). J Postgrad Med 1982;28:4-8

How to cite this URL:
Agarwal MB, Mehta BC. Symptomatic beta thalassemia trait (A study of 143 cases). J Postgrad Med [serial online] 1982 [cited 2012 Mar 2];28:4-8. Available from: http://www.jpgmonline.com/text.asp?1982/28/1/4/5608

  ::   Introduction       

Carriers of beta-thalassemia trait (BIT) can have varying degree of anemia.[6] Some of them have no symptoms and therefore can be detected only in a population survey or as a part of family study if other members are symptomatic or have thalassemia major. Others have symptoms for which medical help is sought. Anemia is not amenable to treatment. Therefore some of these persons are likely to present as cases of refractory anemia.[6] There are several haematological abnormalities in cases of BTT, e.g. raised Hb-A2, raised Hb-F, decreased osmotic fragility and abnormal red cell morphology. However each one of these may be normal in a significant proportion of BTT cases.[6] Here we report the clinical and haematological data of 143 symptomatic cases of BIT diagnosed on the basis of raised Hb-A2. Raised Hb-A2 has been accepted as a reliable criterion for the diagnosis of BTT.[6]

  ::   Material and methods       

Patients with anemia (Hb < 14.0 g% in males and < 12.0 g% in females) with no evidence of "nutritional deficiency", renal or hepatic derangement (normal urinary findings, blood urea, SGPT and serum protein electrophoresis) or chronic infection were taken up for study. Hemoglobin (cyanmethemoglobin method). Hb-F (Singer's method),[5] Hb-A2 (paper electrophoresis),[1] red cell morphology and osmotic red cell fragility[2] were determined in all cases. Patients were labelled as beta-thalassemia trait only if they had Hb-A2 > 3.5%. Hb-F of > 2.0%, Hb-A2 of 3.5% and hemolysis of < 55% at 0.4% buffered saline were considered abnormal.[2] Presence of hypochromia, anisopoikilocytosis, target cells, basophilic stippling and normoblasts in the peripheral smear, either singly or in any combination was considered abnormal.[2]
Cases of BTT usually have a mild disorder. The severity was said to be intermediate if they needed more than occasional blood transfusion (5 cases), they had splenomegaly beyond 10 cm (4 cases), non-healing ankle ulcers (3 cases) or haemochromatosis and its complications (2 cases). Other causes for severity of anemia, splenomegaly and ankle ulcers were carefully excluded.

  ::   Results       

Over the last 11 years, using the criteria described above, 143 cases were detected to have beta-thalassemia trait. Their community distribution [table - 1], frequency of symptoms and signs [table - 2] and [table - 3] and results of hematological investigations [table - 4] were studied. Frequency of abnormal diagnostic criteria is shown in [table - 5] while this data is compared with the data obtained from the asymptomatic beta-thalassemia trait (i.e. parents of patients suffering from proved Cooley's anemia) in [table 6.]

  ::   Discussion       

Over the last 11 years, 143 cases presenting for one or other symptoms were found to have beta thalassemia trait while during the same period, 171 asymptomatic persons were detected to have beta thalassemia trait during family studies of children with Cooley's anemia.[4] Majority of the cases belonged to Sindhi, Lohana, Maratha or backward communities.
Mean Hb level was significantly lower in symptomatic beta thalassemia group (9.66 ± 2.19 g%) than in asymptomatic group (11.3 ± 1.8 g%)4 (p < 0.05). Even in the symptomatic group, the hemoglobin level was lower in patients with palpable splenomegaly (8.92 ± 2.23 g%) compared to those who did not have palpable spleen (9.9 ± 2.13 g%.) (p = 0.05). Fifty eight patients had received hematinics [Iron] for long periods without significant benefit.
* Hb level and percentage of Hb-A2, were not compared as the first was the cause of referral in all the symptomatic cases and the second was considered as the only definite criteria for the diagnosis of BTT in symptomatic group.
Besides symptoms due to anemia, jaundice, pain in abdomen and hepatosplenomegaly seem to be common manifestations in symptomatic beta thalassemia trait, being present in 20-25% of cases. Abdominal pain and swelling were other common complaints. Clinical manifestations severe enough to label patients as thalassemia intermedia were present in 14 (9.9%) cases. Similar number of other patients had either more than one episode of jaundice or an episode of jaundice persisting for over 4 months. Leg ulcers were encountered in only 3 cases.
There does not seem to be significant difference in various diagnostic criteria in symptomatic and asymptomatic cases of BIT [table - 6].
Clinical varieties of heterozygous thalassemia are said to segregate in families.[6] However, all the 14 patients who had clinical picture of thalassemia intermedia had 1-3 relatives (parents, siblings) who had asymptomatic beta thalassemia trait. There is no satisfactory explanation for clinical variations in the families. Possibility of environmental factors and/or interactions with other genetic factors (nonthalassemia) cannot be ruled out. Variable penetrance of gene has also been postulated to explain such and other differences.[3]

  ::   Acknowledgements       

We thank Dr. C. K. Deshpande, Dean, K.E.M. Hospital for permission to publish the paper. The work was supported by grants from Seth G.S. Medical College and K.E.M. Hospital Research Society.
  ::   References       

1.   Black, M. B., Miller, H. and Wan, J.. Quantitative determination of haemoglobin A2 by filter paper electrophoresis. Tech. Bull. Registry & Med. Techn., 36: 221-223, 1966.     
2.   Dacie, J. V. and Lewis, S. M.: "Practical Hematology". English, Language Book Society and Churchill Livingstone, London, 1975, p. 202.     
3.   Hammond, D., Sturgeon, P., Bergren, W. and Caviles, A.: Definition of Cooley's trait or thalassemia minor; Classical, clinical and laboratory hematology. Ann. New York Acad. Sci., 119: 372-389, 1964.       
4.   Mehta, B. C., Agarwal, M. B., Kurlekar, N. and Varandani, D. G.: Diagnostic criteria of beta thalassemia trait. Study of 171 parents of patients with Cooley's anemia (In Press).       
5.   Singer, K., Chernoff, A. Z. and Singer, L. Studies on abnormal hemoglobin; their demonstration in sickle cell anemia and other hematology disorders by means of alkali denaturation. Blood: 6: 413-428, 1951.     
6.   Weatherall, D. J. and Clegg, J. E.: "The Thalassemia Syndrome". 2nd Edition, Blackwell Scientific Publications, Oxford, 1972, p. 109. 


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on April 11, 2009, 02:46:34 PM
Thanks a lot Andy,for finding this research,finally its official now that we as thal minors do face problems due to it,i hope this knowledge will reach and be accepted by the doctors soon.
I also recommend showing this to our docs.

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Sharmin on April 11, 2009, 03:11:31 PM
Thanks Andy,

Many people will benefit as a result of this study.  Thal minors need to be taking supplements to alleviate symptoms caused by thal trait - hopefully doctors and patients will realize that now. 

Sharmin


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on April 13, 2009, 10:10:43 AM
The full study report is now attached to this post.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jade on May 08, 2009, 09:44:51 AM
Thank you Andy.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mariaf on May 10, 2009, 03:55:59 AM
hi guys,thank god I not just imagin thinks  were can I find this artikel I want to print it out and show it to my dokter,
My father got a check up and they found he had it to
gr Maria


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mommyofizzie on May 12, 2009, 02:44:53 PM
i didn't find out that i was a carrier until i was in my ninth month of pregnancy with my daughter.  my doctors said that i had not shown outward signs of being a beta thal carrier so they never tested me for it.  my husband knew he was and now our beautiful baby girl is a beta thal inter.  she's been doing wonderful and has been receiving transfusions every six to 8 weeks since she turned one.  she is now 17 months old.  i thank God everyday that she is the way she is.... happy, beautiful, healthy, and the joy of my life but i can't help but think if i had only known i was a carrier before i had got pregnant.....


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on May 13, 2009, 02:35:32 AM
Hi mommyoffizie,

Welcome on the forum,glad to have you with us,and i am really happy to see your attitude towards thal,i know it can be hard to accept and it takes time,but positive attitude is all what you need,it will help your child grow healthy ,both mentally and physically.

How do you know your baby is thal inter? Did you do DNA testing?

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mommyofizzie on May 13, 2009, 11:01:09 AM
Zaini,

Thank you for the welcome.  Yes, we did genetic testing on myself, my husband, and our daughter and that is how we found out Izzie is beta thal inter.  Like I said she is doing wonderful and the absolute joy of my life.  We have a great team of medical professionals following her (We go to the Tomorrow Fund Clinic at Hasbro Children's Hospital) and they really have set up all the resources we could possibly ever want.  More importantly, they have helped us, thus far, to raise a totally beautiful child.  I have high hopes for my girl and you are right.  A positive attitude goes a long way.  It was a hard pill to swallow in the beginning.  A lot of tears and a lot of guilt but I'm at that place now that I have to be strong for Izzie.  She is what is most important.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: dahlia on May 23, 2009, 08:09:50 PM
Hello all,

I am very interested in this report.

I am sorry. I clicked on the link and only got the abstract.

How can I find the full article?

thanks!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 23, 2009, 08:15:58 PM
The file is attached to the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26797#msg26797 and titled
"Is the b thalassaemia trait of clinical importance.pdf"


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: dahlia on May 23, 2009, 08:22:58 PM
Thank you!

I didn't see it there for some reason!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Moik on July 11, 2009, 12:50:17 PM
Awesome info!

It has always been one of 2 things the doc says to me when I get blood work done


"I don't know if I need to admit you or treat  you for this"
or
"*Shrug your just mildly anemic due to your...thal a ssema was it?" "Ok how do you spell that"

This will be good to circulate


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: DoctorDani on September 24, 2009, 01:02:39 PM
What do I click to get the full-text article? I can't seem to figure it out.  ???


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: DoctorDani on September 24, 2009, 01:08:07 PM
Nevermind, I figured it out!

I'm a thal minor who is CONSTANTLY exhausted. I take a two hour "nap" around 4 pm each day and then am ready to go to bed for the night at 10 pm.

I am not currently taking ANY supplements. I see folic acid and B12 are recommended. Should I get some updated blood testing? What should I ask for?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on September 25, 2009, 12:20:35 AM
Hi,

Vitamin D is another thing to get checked if you feel constantly fatigued,low vitamin D can contribute to tiredness and muscle cramps.

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Manal on September 25, 2009, 05:23:12 AM
Hi Doctor Dani and welcome to the site

Please check the link below
http://www.thalassemiapatientsandfriends.com/index.php?topic=3005.0

manal


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: thalfriend on October 05, 2009, 08:04:15 PM
Dear Andy, you are not the only one having the sentiment, "all we are saying...give thals a chance..."!!!      thanks so much for sharing this info. --

 


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: lmjmajsdj on October 06, 2009, 10:38:18 AM
This is a topic of interest to me because I have been diagnosed as Intermediate my whole life (i am 36), but in reality I have minor with symptoms.  I had a DNA test done 7 years ago that showed I was only a carrier.  I even went to Children's Memorial in Chicago and they like all the hematologist I have ever seen said "you don't have Thalassemia."  But after their tests they agree that I am only minor but because i have symptoms i am considered Intermediate.  My father is minor and my mother is not a carrier. 

My symptoms come and go.  I have yet to find someone who has shared the same medical history as me.  As of now I am treating my self with many vitamins and feel better than I have in years. 

My son is also minor and has a slight anemia.  He is healthier than I was at his age (he is 6) which is good news.  He does get sick more often than most kids, but bounces back quickly.   

thanks for posting the article. 


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kathysask on October 10, 2009, 08:10:40 PM
This is nice to hear.  As I was saying in another post, my doctor poo-pood my questions about thal symptoms a couple of years ago.  He told me by adulthood, my body would have adjusted to the low levels of oxygen in my blood and I shouldn't have any symptoms.  But like another poster, I could have a 2 hour nap after work and still go to bed at 10:00 with no troubles.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on October 13, 2009, 06:57:35 AM
I still get the usual response from most doctors i meet - they look at me like I'm crazy. But I'm used to it now - and don't waste any more time where I know I wont get proper guidance or treatment. :-)


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: thalfriend on October 15, 2009, 05:54:44 PM
Dear MorelliLisa,
Regarding your previously diagnosed thal-intermedia -- have your hemoglobin levels always been within the normal range, given that you think it is thal-minor rather than intermedia?  Just curious, as the feedback from some doctors at a thalassemia center suggested alpha and beta globin testing to start out with to be sure whether one has thal minor or intermedia.

Thanks so much!

Thalfriend


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Audryna on October 23, 2009, 12:58:16 AM
What can I say? THANK YOU SO VERY MUCH for posting this! Very informative and helped to ease my concerns! :veil


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on November 17, 2009, 09:56:51 AM
Something I ran across recently. This study was done in 1993. The findings are clear and are basically the same as what common sense will tell you. The severity of the mutation (genotype) has much to do with the the physical manifestation (phenotype) in thal minor. The more severe mutations, such as beta zero, can cause more problems in minor, just as they do in major. This is part of the explanation of why some thal minors do so much better than others. There are other factors, such as co-existence of alpha thal, which can moderate these symptoms. A person with beta zero trait who also has alpha trait, will typically have fewer symptoms than a beta zero who does not carry alpha trait. Those with the milder thal mutations will be likely to have a higher hemoglobin level and fewer, if any, symptoms.

http://sciencestage.com/d/792564/heterozygous-beta-thalassemia-relationship-between-the-hematological-phenotype-and-the-type-of-beta-thalassemia-mutation-.html

Quote
#
Author:  Rosatelli C, Leoni GB, Tuveri T, Scalas MT, Mosca A, Galanello R, Gasperini D, Cao A.
#

Abstract:Comment in:
Am J Hematol. 1993 Apr;42(4):408.
Heterozygous beta-thalassemia: relationship between the hematological phenotype and the type of beta-thalassemia mutation.
Rosatelli C, Leoni GB, Tuveri T, Scalas MT, Mosca A, Galanello R, Gasperini D, Cao A.
Istituto di Clinica e Biologia dell'Et? Evolutiva, Universit? Studi Cagliari, Italy.
In this study we have correlated the severity of the hematological features to the type of the beta-thalassemia mutation [codon 39 (C----T), IVS-I nt 110 (G----A), IVS-I nt 1 (G----A), IVS-I nt 6 (T----C), IVS-II nt 745 (C----G), -87 (C----G) and beta 6 (-1 bp)], in a group of beta-thalassemia heterozygotes of Italian descent in whom we excluded the presence of iron deficiency or deletion alpha-thalassemia. The beta-thalassemia mutation was defined by dot blot analysis on amplified DNA with allelic specific oligonucleotide probes. We found that a) heterozygotes for beta+ IVS-I nt 6 and beta+ -87 mutations produce larger and better hemoglobinized red blood cells, and b) heterozygotes for beta+ IVS-I nt 6 and beta+ IVS-I nt 110 mutations have a less marked increase of Hb A2 levels as compared to heterozygotes for the other mutations investigated. These findings indicate that milder beta-thalassemia mutations such as the beta+ IVS-I nt 6 and beta+ -87, express also in the heterozygous state a milder phenotype as compared to beta o-thalassemia or severe beta+ thalassemia (beta+ IVS-I, nt 110). The Hb A2 levels, on the other hand, were not related to the severity of the mutation because of less marked increase was found in a mild (beta+ IVS-I nt 6) as well in a severe (beta+ IVS-I nt 110) mutation. From the practical point of view these findings should be adequately considered in carrier screening and genetic counselling.
PMID: 1536137 [PubMed - indexed for MEDLINE]

This is common sense that your phenotype would be related to your genotype, but most doctors on earth are not aware of this, which means, that you, the patient, have to try to inform the doctors.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Sharmin on November 17, 2009, 12:16:14 PM
My husband is beta zero with alpha trait and he does so much better than I.  His hg is usually around 13.5 whereas mine is around 10.4 - it makes a big difference.  This information explains why some thal minors do better than others.  If I think about it, my hg is close to my son's pretransfusion hg and my husband's hg is close to his post transfusion hg - it is a big difference.  There is a lot of variation between thal minors. 

Sharmin


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Manal on November 17, 2009, 04:49:48 PM
Yes Sharmin, my husband and me are the same like you and your husband in terms of HB, but with different mutations. He is HB knossos codon 27 and i am IVS 1-6

manal


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: deb on December 20, 2009, 11:16:12 PM
Hi Andy... and thank you. I stumbled upon this while googling before finding ThalPals. I told my Hemo-Onc doctor-friend about it (he is Greek, but escaped the gene), and he said he wished that clinicians perused these forums for valuable anecdotal info they provide to generate more studies and justify proper funding for them. Typically, a condition is not recognized if there is no pill to throw at it by pharmas—the backers of most med studies/clinical trials, as you know. Are there any nonprofits for rallying the med community to take charge and have symposia for these findings?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: nice friend on December 21, 2009, 04:30:18 AM
Hi Deb ,
 :welcome2 ..


Umair


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: minxie on December 30, 2009, 04:22:29 PM
Hi Guys,

I'm new to this. Completely new!!! I have had thal trait for as long as i can remember. I'm now 22. I have never looked it up online because i was convinced by dr's and parents that it "isn't that bad"!! But now i have got to the point that i'm just a little bit sick and tired of it. I have been on ferrous sulphate (Iron tabs) since i was a little child, and have blood tests quarterly. I used to be fine, and suffered mostly from tiredness. Just recently (i'd say over the past year) i have been unusaully WRECKED and suffering from mouth ulcers, like extreme amounts. To be honest, without sounding weird, i genuinely feel like im slowly getting worse. I have been assured that this cant be to do with my thal, and so it makes me think that surely then there must be something else i have!? I have no idea now what to do OR think!!

Any input from you guys would be most appreciated. All my doc says to me is "Try eating more red meat" or "Drink more guiness" (because of the high iron).

Anyway, now i have stopped ferrous sulphate as my system and it did not get on too well. I have started taking Iron Vital F, liquid form, its based on fruit, veg and herbs.
Please just inform me on anything i can do.

I seem to want to do nothing but sleep. I have no get up and go, mine has got up and left!

Hannah xx




Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 30, 2009, 05:11:21 PM
Hi Hannah,

You may have never needed the iron, as it has no effect on thalassemia minor. The anemia of thal minor cannot be corrected with iron, so the only reason you would need iron would be if you were also coincidentally iron deficient. Your doctor is uninformed about thal minor and frankly, giving you very bad advice. There is no value in eating lots of iron unless you need it. This can be determined through a group of tests all iron studies. This really should have been done as soon as it was apparent that iron wasn't changing anything. Long term iron use when not needed can actually lead to many physical problems, including organ damage. I would suggest asking for the iron studies to be done so you can determine your true iron load and whether or not iron is indicated. It would also tell you if your iron load has become high from the long term supplementation.

In 2008 the results of a study were finally released that showed that thal minors do have symptoms. This was really a ground breaking study, and one conclusion that was drawn was that more study of minors is needed. In this respect, our group is far ahead of the researchers in chronicling the problems associated with thal minor. You can see the study in an attachment to the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.msg26797#msg26797

You would be much better off taking B Complex, folic acid, vitamin E and probably vitamin D. Please look through posts in the thal minor section to get ideas on how people cope with the very real symptoms they do experience.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: minxie on January 01, 2010, 07:32:44 AM
Thanks Andy, very much appreciated. Just wondered if you know of anyone who suffers with tight chest breathing? Just wondered if it was just coincidental, or if it is actually associated with Thal?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on January 02, 2010, 04:36:16 AM
A lot of times I need to make an effort to breathe deeply, I'm not sure thats what you are referring too. I think i do that when i'm exhausted or unwell in any way.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Moik on January 02, 2010, 10:50:46 AM
I too feel like I am physically dead to the world...but the only thing ive been doing differently in the past few months is less exercise..because its wayyy to cold.. I am going to try and do some kind of cardio exercise in the house even though I feel as if I can sleep soon after I start them..but I think once they are done I feel a bit more awake.. I just have to stick with it to get back in shape!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on January 02, 2010, 09:41:46 PM
I think thal minor can contribute to breathing difficulty if the hemoglobin level is normally in the lower range, because it does cause some long term oxygen deprivation to the body because there is less oxygen-carrying hemoglobin circulating in the blood. I think learning to breathe deeply can help to counter this by increasing the efficiency of the lungs.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: minxie on January 04, 2010, 04:27:56 PM
Yeah, i usually only suffer with what i call a tight chest (which is what you guys are describing) when im shattered/tired, or if i'm stressed out. I agree though with the exercise thing, always do feel better once have exercised!! It's a bit of a vicious circle, the breathing thing makes you tired, but with out it, its tiring too!

Thannks guys for your help,

REALLY do appreciate it. Don't feel like it's all in my head any longer,

Hannah xx

p.s Hope you are all keeping well


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on January 05, 2010, 07:56:58 AM
I surely feel better with some light exercise, or a bit of physical activity throughout the day, else i start feeling really sluggish. Like I need to get my blood moving again!

I would like to know if there is a specific exercise that helps you, in terms of whole body fitness? I do some stretches, and spot jogging or leisurely walks. But I need to build up some strength, else I keep getting aches and pains.


One thing I was often told earlier - was that - I describe my symptoms unlike anyone else! So the people listening to me get the feeling i'm talking about some imaginary ailment they've never heard of!  :-)  Its a more polite way of saying that we imagine all our symptoms.     :-)


Luckily, after several years of an unimaginable number of doctors, I finally found a few who understand me and help me!

Once a problem is acknowledged, its only then we can start looking for solutions. 


God Bless Lisa,
and Andy,
and all of us here!

:-)


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Manal on January 05, 2010, 10:59:21 PM
Quote
i usually only suffer with what i call a tight chest (which is what you guys are describing)

In my expierence, i find that when i am on an alkaline diet and stopping any sodas, the feeling of shortness of breath and palpitation decreases to a big extent

manal


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: TKDgirl7 on January 17, 2010, 11:26:37 AM
Thanks for the article Andy, it is great to find a group like this!  I was diagnosed when I was 11 after being misdiagnosed with iron deficiency.  I have had problems with dizzyness and fatigue since I was a small child.  I started fainting when I was 5 which was what started all the testing.  I also get sick all the time.  My mother and grandmother also have thalassemia and have had the same issues so I knew my doctors just didn't know much about Thal.  My grandmother has had some transfusions and she gets B12 injections.  It is so validating for me to hear about this because when I used to get sick in school all the time, teachers would assume I was faking or I had mental health issues, it was so frustrating!  I have always wanted to do research on Thal minor, but I live in an area where it is very rare (North Dakota, USA).  Another struggle has been with endurance.  I am a martial arts instructor and I have struggled with running and anerobic exercise my entire life.  I have trained for months (running) and have watched my counterparts pass me up with much less effort.  I also find I get Delayed onset muscle soreness (DOMS) much more frequently (basically sore muscles after a workout) which makes sense because of less oxygen in my system.  I've been so sore I can hardly walk the next day! Anyone else have this experience?  I do find exercise helps my energy level a lot, but it is frustrating when competing to tire more easily than normal competitors. My Hb level has never reached 12, I usually sit in the 11 range or 10's if I have been sick or not eating properly.

Thanks Again, Crissy


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Bobby on January 18, 2010, 12:47:19 AM
Welcome Crissy,

I have experienced similar effects during sports and physical training. I have Beta Thal Intermedia and currently workout on a regular basis. I order for me to gain any weight or improvement in performance I have to work twice as hard it seems and it takes twice as long to show. However I am rarely sore anymore. Feel free to ask whatever and again WELCOME!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: TKDgirl7 on January 21, 2010, 08:27:25 PM
Thanks for the welcome and information Bobby!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jmarie on February 15, 2010, 10:37:03 PM
Just Awesome! Thank you so much!

I too have been told by doctors there are no symptoms of TM.
I was about 26 years old and pregnant with my son when I was told I have TM. That was in 2004. Since I was assured by the doctors I'll live a normal healthy life with it....I haven't paid much attention to it until just recently.
I am tired all the time, have a hard time exercising(out of breath), and have bouts of anxiety.

 My results came in Friday and my Hemoglobin is 8.8. My Hematocrit 27.1.RDW is    19.5. Red Blood Cell Count is 3.03. My iron is 89. Iron Binding 253 and IRON SATURATION 35.

My doctor tells me to take a multi-vitamin and a iron supplment every day. Why do I need to take the iron when my iron is ok?

It's so frustrating :rolleyes that so many doctors are not knowledgeable about TM! I hope soon that this condition will be brought out of the darkness and into the light so I won't feel so lost!

I've read some pretty good advice here. I actually just picked up some B-12 and Folic Acid. I hope it makes a different and gives me some very much needed energy. Everyday I have to force myself to get things done! Most days I don't have the energy to even complete them. I am trying my best to eat healthy and exercise. Exercise has become such a struggle as of late. I used to be able to exercise 3 to 4 times weekly. Now I'm lucky if I get even 2 in there....

But I am so glad that I was directed to this forum! & if anyone has any advice for me...please don't hesitate! Thank you  :hugfriend




Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on February 15, 2010, 11:16:58 PM
Hi jmarie,

Doctors almost automatically throw iron at anemia regardless of the cause, and when it isn't iron deficiency, it doesn't help and over the long term it can build up to a higher than healthy range. Your iron levels are normal as you said. A multivitamin without iron makes more sense. Your hemoglobin level is in the lower range for thal minors so an approach that includes the nutrients besides iron that are necessary for building red blood cells, antioxidants to help prevent the damage that your excess alpha globin chains do in your blood, and possibly trying some natural hemoglobin inducers like wheatgrass tabs and resveratrol, may reap more benefits than taking iron. Also, vitamin D deficiency is a major contributor to tiredness and fatigue. If you do not get year round exposure to the sun, it may be advised to take vitamin D supplements. Researchers are finding more and more benefits to vitamin D on an almost daily basis, which isn't so surprising considering that D is necessary for the proper function of dozens of other nutrients.

There is no easy method but thal minors can optimize their health with proper nutrition and mild to moderate exercise. A diet high in vitamins and minerals and antioxidants, while also avoiding empty calories, is an important choice.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jmarie on February 15, 2010, 11:47:20 PM

Thank you for responding so quickly Andy!  8.8 is pretty low. I was surprised to see that but not shocked because I've been feeling really lousy. My hemoglobin was an 8 when I was pregnant. I wonder why it dropped so low now? I am not even pregnant!?

I am definitely going to be diligent about taking your advice!

Thank you so much  :hugfriend
   


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on February 16, 2010, 12:53:26 AM
Hi Jmarie,

:welcomewagon on the forum,almost every thal minor who joins this forum is as happy as you are :yes i was too when i found this forum,never knew that my being tired all the time and low energy was related to it,but as Andy mentioned,vitamin D counts a lot as well,when i got my Vitamin D levels checked,they were really low,and a couple of Vitamin D shots and daily supplementation of Vitamin D made such a big difference for me,now i don't wish that my day should end at 12 noon rather then at 10 PM  :biggrin .

Hope this helps,

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jmarie on February 17, 2010, 03:29:32 PM


Hi and thank you for the welcome Zaini. I faxed this forum to my doctor, plus I faxed the study that Andy posted. She is referring me to a hematologist and she ordered the blood test to check out my Vitamin D levels.
She said that my hemoglobin levels were only 2 points lower than norm. The norm is considered 12-16 for women right? My hemoglobin was 8.8. Seems to me it's more than 2 pts. She also stated that I should come up with a better form of communication besides a fax. Is it me or does it seem that my doctor is annoyed?
Hmmm....curious. Just seems she wants to right it off as "no big deal."

Well...I hate to burst her bubble but it is a bid deal for me! I hate feeling tired and short of breath all the time!!
Another thing that I've learned from this looking on the internet is patients with thal can have an enlarged liver or spleen. When I read this I thought...well!! No wonder!
A couple years back I had abnormal results of a HEPATIC PANEL. My doc sent me to have a ultrasound of the liver. My results came back that my liver is larger than normal. She said no biggie....I just got a larger than normal liver than others is all.
 
She didn't mention the thal minor having a link to that. I figure she wouldn't of known that anyways since doctors have little knowledge of thal minor.

Maybe I might get more help when I see this hematologist. Whatever I find out...I'll share it here as well.

Thank you!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on February 18, 2010, 11:34:53 AM
Hi Jmarie,

I won't be surprised if your doctor is annoyed,because doctors who don't know much about thal minor themselves and go by the books,do get annoyed when patients try to contradict them,because for them thal minor is asymptomatic,of course this is a big deal,hb of 8-8 is not just two points low,its pretty low,and since its effecting your quality of life,it is a big deal,and chronic low hb can lead to more and more iron absorption through the gut,which in turn can get over loaded in organs in the long run.Do you have any records of your hb before you were actually diagnosed?

Try to read through the forum as much as you can,this will help you in asking questions when you go see your hemo,good luck :) .

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: SFTYGAL on February 21, 2010, 09:00:13 AM
Its so nice to get this info and yes thal minors have symptoms!!!  My daughter is thal minor she definitely has symptoms, bouts of fatigue, enlarged spleen, etc.  From this forum I have her taking Folic Acid, Vitamin D and Wheatgrass. 

She is working hard right now trying to get a basketball scholarship but goes through episodes where she is really fatigued seems that growth spurt or illness triggers issues.  After reading posts have doctor checking her B12 levels as well.

Should a thal minor take iron??  :huh


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on February 21, 2010, 11:50:42 AM
Hi.

Welcome on the forum, thal minors should not take iron unless it is confirmed that they have iron deficiency,and it can be confirmed by a panel of tests called iron studies.

Hope this helps,

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: cshells on February 24, 2010, 10:48:00 PM
I have a Dr appt on March 12 for my new-to-me daughter with her ped doc.
First, is there any (and I quote) accredited site stating that B Thal minors have symptoms beside the one paragraph at PubMed? Even the blood doc we saw in Portland at the Children's Hospital told the ped doc that she wouldn't have any symptoms. She feels that they're wrong and I would like to have any info possible before we walk in.
Second, is there specific tests I should request done?  or request results already done?
Thank you so much for what I already know. Problem is I know so little :)


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on February 25, 2010, 11:36:54 AM
There has been very little study of thal minors and what there has been has been inadequate. The conclusion of this study was that more study is needed. I really think thal minors need to be studied but differentiation between minors by Hb level and other factors is necessary.

I doubt there is anywhere you will find more information about thal minors than at this site, but doctors will consider this anecdotal. This shows how important it is to be proactive and help yourself, because you will find very few doctors who know anything at all about thal minor. It's sad, but I know far more bout thalassemia minor than 99% of the doctors on earth. What is even sadder is the fact that most doctors become arrogant and assume they know better, simply because they are doctors. I don't care how good a doctor is in general, because if they have no training or experience with a subject, they really don't know anything more than anyone else about that subject.

Ask for the full results of the various iron tests. It is difficult to say if she needs iron supplements without the complete information. (Fe sat end TIBC hi).

The best you can do is to learn as much as you can and use trial and error to see what helps your child.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Sharmin on February 25, 2010, 12:45:17 PM
Lack of information about thal minor is always such a problem.  Because thal major is so severe, people often downplay the effects of thal minor.  When my son's hemoglobin drops to a level where he is ready to be transfused I often feel for him, and begin to think that he must be exhausted.  I rarely stop to think that my hemoglobin is that low all of the time, his hg is that low only for a matter of days, most of the month he is far higher.  Definitely, constant low hemoglobin affects the body and ones mood.  During my second pregnancy I was barely able to cope with my fatigue as my hg decreased to 7.  My spleen also increased in size during that time.  Most of the time I do quite well fortunately, but I feel for people who have constant low hemoglobins due to thal minor when they are met with apathy from the medical community. 



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: KShep on March 02, 2010, 06:19:43 PM
Hi. I'm 22 years old and was diagnosed with thal minor 2 years ago. I also have a lot of the same symptoms talked about here. I am often very tired and rely on energy drinks to get through a day at work, which i know isn't healthy. I get migraines,tightness in the chest, agitated very easily (my doctor had me on anti-depressants for a while), and i also get sick very easily. my biggest problem is the energy though, and constantly being tired. I try to explain it to people so they don't think i'm just being lazy, but i think some believe i'm making it up. I too, have had no luck with doctors. My doctor at the time told me I had thal minor, then she said for me to come back in a week because she needed to research it more. When I went back to her office, I had to wait 3 hours, only for her to go in, print off a sheet from wikipedia about thal and then pass it to me and tell me to read it...then she left. That was about a year and a half ago and I haven't been to a doctor since, all of my information about thalassemia came from wikipedia and sites like these, this one being the most informative that i've found.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 02, 2010, 06:52:39 PM
Hi Keisha and welcome,

It is very frustrating that most doctors will give no respect to thal minor as a real problem. Everything you mentioned are things that thal minors regularly report to their doctors, but for the most part their problems are ignored. I am beginning to believe that doctors will be the last to know when it comes to thal minor. This leaves patients pretty much to themselves to try to find any relief. I do think that a good diet and supplements can help, and because once again I see anti-depressants being prescribed to a minor I want to emphasize something that can help many people including thal minors. Vitamin D deficiency is extremely common and it also leads to many health problems, but also is a direct cause of depression, and is overlooked by most doctors. I have been dealing with Seasonal Affective Disorder (SAD) for many years. This happens during the winter when the days are short and sunlight is never intense. Living in upstate New York and being of Italian descent, I need a lot more sunshine than I can possibly get. A few years ago I started taking what was then considered a high daily dose of D (1000 IU) during the winter months. It did help a bit with the winter depression, as I no longer felt the desperation I usually felt in the winter, but I still didn't feel great and felt like I was holding my breath all winter, waiting for spring to arrive. Last June I asked my doctor to test me for D. Even though I was taking a daily supplement and was also making an effort to get sun, my level was only 19. Normal is a minimum of 30. I was stunned. I had been taking D for 5 years and had not gotten anywhere close to normal! I bumped my dose to 2000 IU daily and I did feel a little better, but still I knew it wasn't right. Finally, I found 5000 IU caps and started them. For 3 weeks I took 2 daily. I was getting at least 60,000 IU weekly. At last I could feel a difference. After a few weeks, I felt like the dose had done the job and dropped back to 5000 IU 5-6 days per week. For the first year in so many years, I have gone through winter feeling normal. I haven't had that desperate feeling all winter and my spirits are noticeably improved.

It's a simple blood test and it can reveal a problem that afflicts many people. If your level is not at least 30, try supplementing your vitamin D. Even if it is over 30, it may be of benefit to supplement. I was reading an article this past weekend that suggested the recommended levels are far lower than they should be. Vitamin D is responsible for the proper absorption of many other nutrients, especially minerals and when the D level is low, it leads to many health issues.




Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on March 24, 2010, 09:44:40 AM
Hi,

If i'm physically active a few days in a row, I seem to 'empty' completely. Then I need complete rest for a few days before I get better again. Otherwise my body health acts up in many ways. (Regardless of what my mood is).

Most people tend to get tired at the end of the days work, Eat and sleep well, and they're fully recharged the next morning.

This has happened yet again, and I am in bed for the most part. The IBS is acting up again and I ended up with terrible pain and I couldn't eat for days. Even my body temperature goes upto 100 sometimes if i don't rest. But as soon as i lie down and keep myself comfortable, the temperature will come back down to 98.3 which is my normal level.

Initially we fear infections, but I also cannot take antibiotics past the first 1-2 days. I react to them badly and we have decided to stick to IV doses if ever needed henceforth.

I am wondering if any symptomatic thal minor here - has a medical solution to this?  A simple case of exhaustion turns into many more problems and I end up feeling miserable only because I have to be tired ALL THE TIME and bed rest.


The only way i know to escape this issue is to turn lazy and do nothing in life.   :-)   Which I personally hate and avoid, and its not practical either.

Any thoughts on this? I take all my supplements and eat healthy gluten free. I manage light exercise too.



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: tigerlily on April 02, 2010, 09:06:50 AM
Hey everyone,

just yesterday I discovered this community! And I'm totally shocked. I have Thal minor, just as half of my family does, and of course we've always been told that it doesn't matter at all. However, my brother and I always have a strong lack of concentration as well as quite a need for sleep, and my father gets some kind of dizziness/vertigo nearly on a daily basis. He's been having this since his early teens, and the doctors tried every test possible on him. Concerning his blood, they always said that Thal minor is just a different-looking sort of blood. He's always wondered about his vertigo and fatigue. I think it's incredible that doctors keep saying we don't have symptoms when we all have them! I just told my father about this community, and he was fascinated. Do you know anything about vertigo?

@ Preety: That really sounds bad! Unfortunately I am new to the whole subject and don't know much...

I'm very glad to have found this community. Finally we understand what our fatigue/dizziness/lack of concentration is about... Thank you all so much for writing here, it's really a great inspiration!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on April 29, 2010, 12:08:55 PM
@ tigerlily,

about vertigo, it could be an inner ear problem - an ENT specialist may be of help. I think they have exercises for it, if it is really something to do with the ear. What about low BP/Low blood Sugar? Eye problems?



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Imken on May 21, 2010, 02:28:16 AM
Hi, thanx for the report Andy, I will use it to inform our Dutch patiënts.
My GP thinks he knows more of thal then I do, but I know he doesn't. So he wasn't very interested in helping me when I came to him in the beginning of my pregnancy. But I know how to speak for myself and don't take no for an answer.
I know a lot of people don't speak up to their physicians, what results in bad treatment. So I hope with this article more minors are going to speak up and ask for the treatments they deserve!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: shirmh on June 16, 2010, 12:21:37 PM
Here is the direct link to the study:

http://www3.interscience.wiley.com/cgi-bin/fulltext/119388776/PDFSTART


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: PixieDust on July 22, 2010, 05:33:13 AM
The full study report is now attached to this post.

Thanks Andy,

Happy that three doctors are from Sri Lanka, at the same time unhappy because If you go to a hospital and say your a trait and feeling lethargic all the time... they pay no attention  :-\


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: bcsides2000 on February 20, 2011, 11:11:29 PM
This is my first post on this site.  I've know about my Thal Minor since late 2002.  I found out because my first 2 daughters who were born in 2000 and 2001 were on WIC and the lady at the WIC office kept accusing us of not feeding our kids food with iron in it.  I let the pediatrician now about this and he ran some blood tests and gave them some iron supplements in the mean time.  After the tests came back he told us he wanted to test my wife and I, along with my two daughters for some more stuff.  So, it came back that I and my two girls had Thal Minor.  Of course he stopped the iron supplements immediately.  He did a lot research on it, but was able to find too much about it.  I was just glad I had something to tell the lady at the WIC office.  LOL. 

Anyways...here I am now...12 years in the Air Force.  Probably the only thing until recenlty that the my Thal Minor has made problematic for me was I had to get a waiver (which took many tests and many months to get) to switch from an air traffic controller to be a navigator.  My doctor then didn't know much more than any other doctor before knew.  So, now I'm at another bumb in the road that hopefully I can get some help from my doctor here to get over.

I'm a horrible runner, but I've always blamed it on technique and not running enough.  Well, I've spent the last 5 months training to improve my 1.5 mile run time for my fitness test.  I had been doing my run fine during training, but when it came to the test I could not keep up.  I'd have to say my biggest problem is I get really short of breath after the first half of a mile.  I also get headaches about an hour or so after everytime I run.  Of course I get other symptoms, but I don't know if they have anything to do with running. (i.e. fatigue, slight jaundice, etc...)  I will say that supplements do help, but of course I haven't been taking any in a while.


I'm just mainly happy I found this site.  It is great to know there are others out there that have the same issues that I have.  I'm really excited that there was a study done on our condition.  I hope this can lead to more intensive studies to help us all out.  I look forward to learning more from reading on this site and even chatting with you all.

Ben


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on February 21, 2011, 10:37:53 AM
Hi Ben,

:welcomewagon on the forum,i am glad that this site is helping you,of course supplements will also help you,like folic acid,i am no doctor,but since you said you get short of breath after running,i thought this thread might be helpful.

http://www.thalassemiapatientsandfriends.com/index.php/topic,3502.0/highlight,pht.html

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: SFTYGAL on March 05, 2011, 08:44:40 PM
My daughter has alpha thal minor, supposedly asymptomatic.  Boy are they wrong. !!!!!! While she has had bouts of fatigue, nosebleeds, spleen enlargement.  The last 6 months her world has turned upside down.

She has missed over 100 days since the beginning of the school year with fatigue (sometimes sleeping 16 hours a day or more) dizzy spells, low blood pressure, brain fog, headaches, nausea, spleen enlargement, ice cold hands and feet.

She can't hold down a job, doesn't know from one day to the next whether she will get out of bed because of fatigue, she can't drive dizzy spells are almost daily occurence, she will not graduate with her class because of all the school she has missed.

Does anyone know a doctor in the hamilton/Niagara are of Canada who knows alot about this disease??


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: debfab on March 24, 2011, 05:36:29 PM
I found this very informative research paper on the Outcome of Pregnancy in b Thal Minor patients, done in Iran in 2006-2008.

http://ijrm.ir/library/upload/article/af_23632262)%2088-51-1e.pdf


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on March 24, 2011, 10:24:34 PM
Thanks for sharing :) .

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 25, 2011, 01:17:44 AM
There was another study done some years ago that showed similar results. However, we have literally heard from hundreds of thal minor women through this group who have had miscarriages and often multiple miscarriages. I do not know why this isn't observed in studies, but this may give us a clue.

Quote
Patient with recurrent abortions (2 or more consecutive pregnancies resulting in spontaneous abortion), history of neural tube defect in previous pregnancies, history of infertility, history of any medical problem, undelivered in this center or mean follow-up visits less than three times were excluded.

Excluding women with more than one miscarriage excludes exactly the group that seems to have an unusual risk for miscarriage in thal minor moms. Excluding anyone with a history of any medical problem would also eliminate much of the group of those at risk. I find these exclusions puzzling because the very people who have more severe results and thal minors with ongoing symptoms (whether recognized as thal related or not) are excluded from the study.


Title: Re: Study Finds Thal Minors do Have Symptoms(HELP)
Post by: DAMHA on May 29, 2011, 02:21:16 PM
 ???  Good day dear Andy, I am Ahmed Abraham, every now and then I send you a messge asking you some questions about thal.  I`m sorry that I am not an active member.
Dear andy, yeah I`ve been convinced that thl minors do have symptoms even if they are not aware of, let me mark specifically cognitive dysfunction specifically at physically demanding moments.

I myself do have thal minor if you remember. I really got sick of being tired , having palpitations, dizziness and difficulties in clear thinking, easily caught common colds and flues.
I am sending this message to ask really full of hope if there`s anything new in improving fetal Hb. My Hb ranging around 11.

I am following your advice and I am on folic acid 5 mgs, fortified B-complex, vitamin D 5000 IUs, zinc 15 mg, wheatgrass juice twice daily, resveratrol 50 mg, and fresh fruit jiuce.

I`ve been reading about short chain fatty acids derivatives (SCFADs) like butyrate or thigs like that, in addition to Rapamycin and Angelicin and Histone Deacytelase Inhibitors or HQKs or thigs like that.

Is any of theses was released for clinical use in the markets. I am really willing to try anything new that might help, ANYTHING that might help.

Please Andy I would be thankfull if you can help me with anything new.

Thank you very much Andy and sorry for the long message.

Truly yours,
Ahmed Abraham.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 29, 2011, 02:52:14 PM
Hi Ahmed,

The research you mention is still in the development stage, although the short chain fatty acids trials have been going well from what I understand. This will probably be the first new therapy to hit the market.

I really wish we could get some progress on helping thal minors, but it's all trial and error. If anyone has anything to add to this discussion in terms of what helps you cope with the low Hb of thal minor, please reply.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Manal on May 29, 2011, 06:15:12 PM
Quote
  My Hb ranging around 11.
Hi Ahmed and welcome to the site. I was wondering, did any of the supplements helped in increasing your hb to 11 or it was always in this range?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Zaini on May 30, 2011, 01:18:36 AM
Hi Ahmed,

Along with taking these vitamins,working out has always helped me,not necessarily the heavy work out,but just a brisk walk or a short run would help a lot,it might not increase your hb,but it definitely reduces your tiredness,i guess it has something to do with the better circulation of blood which in result gives you better circulation of oxygen in the body.

You mentioned difficulty in clear thinking,that might have something to do with your hydration levels,do you keep your self well hydrated,when i am nor well hydrated it becomes really hard for me to focus and think.

Hope this helps,

Zaini.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: DAMHA on May 31, 2011, 04:01:33 PM
 :-\ Thank you Andy, Manal and Zaini,

 In reply to your question Manal, My Hb has always been ranging around 11, but may be my energy levels have increased a little bit with these supplements.

 Yeah, Zaini, you`re right. I really feel slightly better  with mild excercise.

If you know anything that might help, pls let me know and thank you all for trying to help.

Ahmed abraham.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Janee71 on August 02, 2011, 09:41:55 AM
Hi there,

This site is really you are all giving me hope that I can finally get some help for myself and my family. My sister and i were diagnosed with Beta thal minor nearly 10 years ago and have been told by every dr that it is asymptomatic and I was told to stay on iron supplements permanently. The trait comes from my father's side of the family. Recently, we started talking about our symptoms and realised that we all have the left upper quadrant pain, my dad cannot gain weight, my sister and I are overweight and regardless of what we do we cant shift it. Many of our ancesters had the same trouble. I have elevated lipids, blood glucose  and had an ultrasound to find that my liver is enlarged, but spleen appears normal.  The doctors in Australa don't seem to understand this disorder. They often look at my sister and i like we have three heads. We have finally obtained a referral to a haematologist to investigate further. I am finding it so hard to focus on my work and my abdomen is so uncomfortable and painful. I try and get some treatment but they are starting to think that it's psychosomatic or just dismiss me and tell me that it is due to my weight or heartburn.

As thalesaemia is uncommon in Australia and the most recent pamphlet from Thalesaemia Aus states that Thalesaemia minor is asymptomatic and only of note when you are looking to reproduce.  I am concerned about approaching them for fear of more ignorance. Does anyone know of a specialist in Australia or New
Zealand?

Cheers
 :wink


Janee


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on August 02, 2011, 08:38:00 PM
Hi Janee,

Iron cannot help beta thalassemia since the problem is a defect in the beta globin gene and has nothing to do with the amount of iron available. Long term iron supplements can be harmful, especially when the hemoglobin level is lower, as with thal minor, because the body will absorb more iron than it needs. This information is found most anywhere regarding beta thalassemia and your doctor is being negligent by not further investigating this before prescribing iron. Hopefully, the hematologist will understand this.

I know of no thal association that will admit that minors can be symptomatic. I don't know if it's because they refuse to listen to minors or know they would be overwhelmed if they acknowledge that minors can have symptoms. many minors do have symptoms and this group is loaded with them. Ignoring them because many other minors are asymptomatic is foolish. Your liver is enlarged. This is caused by the high turnover of red blood cells and is the same reason spleens enlarge.

It is nearly impossible to find any doctor that will agree that symptoms are related to thalassemia.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: CatherineM on August 25, 2011, 08:07:01 PM
hi Janee

Have you tried contact one of the thalassemia clinics.

What state are in?

I am thinking the doctors at these centre would be more up to date with thalassemia.

Regards

Catherine


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Slade on September 13, 2011, 06:25:50 AM
Hi everyone,

I have beta-thal minor condition assumed to be Hb Lepore (heterozygote trait).
I've always had trouble with stamina and endurance when running long distances or with other aerobic activities. Back in school I was unable to cover the minimum for 400m running even though I was one of the best sprinters in 100m.
My skin is awlays pale or yellowish (the later because of high bilirubin) and I have periods of general fatigue and malaise combined with  irritability.
I can't smoke, drink or workout as hard as my friends do and sleep deprivation always takes its toll on me.
You say docs don't recognize any sympthoms due to thal minor? My doctors seem to be at the other extreme - as soon as they hear I have hemoglobinopathy they blame every sympthom or disease or whatever condition I may have on it...

Regards,
Mart


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on September 13, 2011, 11:22:20 PM
Mart,

This is interesting to read, especially since Hb Lepore is considered to be asymptomatic in carriers. The high bilirubin is direct evidence that hemolysis takes place. The common fatigue symptom is also present. The founder of this group and her father were both Hb Lepore beta thals. In theory, this should be intermedia but she was a major. I tend to believe that a sparsity of data about the various hemoglobinopathies and their effect on carriers has led to a lot of misinformation about the asymptomatic nature of being a carrier. The most important thing to remember is that carriers of Lepore can have thal major children if they have children with a beta minor. This information should be passed on to any relatives who may also be carriers.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Slade on September 14, 2011, 05:32:56 AM
Thanks Andy! I read about the possible combinations of Lepore with other traits which could lead to the major state.
My wife was tested (CBC, Hb electrophoresis) before we had children and results were negative for hemoglobinopathy. However my second child (will turn 12 months next week) has the same yellowish pallor and when we did the first bloodworks we found that he has lower Hb (~9 g/dL), lower MCV and MCH and other morph findings like hypochromia, anisomicrocytosis, dacryocytosis, ovalocytes and target cells. His iron is well within the reference limits.
Hopefully the baby looks and feels quite well and the hematologist said it's to early to do Hb electrophoresis. He said it should be done after he turns 2. I really hope he has nothing but Lepore trait as I do. I'll keep my fingers crossed...

Andy, I assume it matters how much of the total Hb is "bad" in various Hbpathies - as in my case it's around 8-9%. Hb A2 is 4,5 and  F is 2 or 2,5% (according to 2 methods). The bigger the % the worse the sympthoms? My total bilirubin levels are very high (70-80 μmol/L) which speaks of chronic hemolysis and I guess many of my sympthoms are related to it.

Edit: I made corrections in my lab results because I had them wrong the first time.

Regards,
Mart


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: theresainadelaide on September 19, 2011, 02:16:54 AM
Thankyou so much for this thread
Like Janee, I am in Australia. I have Thal Minor and both of my parents have Thal Minor. My brother has Thal Minor and so does my son and my brother's 2 daughters. My family has been telling doctors for years that Thal Minor has heaps of symptoms but doctors refuse to listen. I have a list of symptoms a mile long and the doctors can't (or won't) find the cause. I have been telling them the cause is in my blood but they think I am nuts. I am overweight, my mum is overweight and no amount of dieting or exercising shifts the weight. My doctor has recently told me that I have Chronic Fatigue Syndrome and she admitted that my Thal Minor may have something to do with it. Er excuse me: I think the Thal Minor is the cause of it entirely. I suffer from exessive sweating, chronic fatigue (I can sometimes sleep for up 3 days straight), I get brain fog, skin rashes, diziness, severe migranes, fluid in my ears, ringing in ears, severe thirst, the hot weather almost kills me. I suffer from sweats, chills, my skin burns and then my hands and feet freeze at the same time that my face and head is burning and I suffer from depression. These are just a few things I suffer from. My entire family suffer from these symptoms and the one thing we all have in common is Thal Minor. When are doctors going to listen to the people who live with this? I don't know of any doctor that actually Thal Minor so who are they to tell us that it is asymtomatic? I am on a care plan at present for the CFS. My doctor told me to take Mega B, vitamin D, fish oil, multivitamins, I take antidepressents, I have gastro eosphogeal reflux disease so I take meds for that. I take meds for the fluid in my ears and the nausea and pain killers for the migranes. I take so much medication that it is sending us broke and I am sure I rattle when I walk.
It sounds like a lot of you can relate to this.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on September 19, 2011, 07:09:21 PM
theresainadelaide,
Have you ever had your vitamin D level checked? I know you said you are taking D but many supplements contain low doses which are useless for deficiency. Deficiency of D is very common and since it is necessary for so many other nutrients to be absorbed, it can cause many problems when low, including depression. Also, do you have any blood work results? The results of a CBC (complete blood count) would be useful.

Slade,
Lepore may not show on electrophoresis. If it does, then you know. If it doesn't, you may at some point want to have a DNA analysis to confirm he isn't a carrier. We have a group member whose daughter was born beta thal Lepore even though he was cleared through 3 electrophoresis tests. DNA testing after the child's diagnosis confirmed he carries Lepore. Because of the possible silent nature of Lepore, it needs to be known once your child is old enough to have children of his own. Understanding that a partner should not be a thal carrier is essential in avoiding the surprise of a thal major child. And yes, the lower the Hb and the amount of unstable hemoglobin variants play a role in the hemolysis and the amount of symptoms. The HbF won't cause the problems. The percent is higher as the fetal hemoglobin gene tries to compensate for low Hb with HbF but it is not sufficient and HbF also holds oxygen more than normal HB, but this means it also doesn't give it up as easily in cells where it's needed. Your low Hb and the inefficient erythropoiesis which creates some bad red blood cells along with the good, are the main causes of problems like excess bilirubin and fatigue.

A problem patients have with doctors is that most minors won't have many if any symptoms. But many do have problems, and more often this is related to a lower than normal Hb level. I think it will be a long time before the medical profession accept that many thal carriers have thal related issues. In the end, there isn't much they can do anyway. Maybe at some point they will recognize the special importance of certain nutrients and antioxidants for thal carriers and will actually give their some advice instead of telling patients it's all in their heads. Read the hundreds and hundreds of reports from minors I have read and you will have no doubt that it's not in their heads. 


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: CatherineM on September 19, 2011, 10:05:58 PM
Hi Andy

What levels are consider mild or severe in the terms of anemia?

It would make sense to me Thal Minors with more severe anemia would have more symptoms.  Is this the case?

Surely doctors  should consider the standard amenia symptoms as being caused by being carrier, as this is direct cause of the amenia (when other causes of anemia have been rule out).

Hope this makes sense.

Catherine


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: theresainadelaide on September 20, 2011, 12:59:17 AM
Hi Andy
I did have a vitamin D deficiency but that was treated some time ago as part of my care plan. I also had all my blood levels checked (I have a complete blood work statement carried out) once again as part of my care plan. Thanks for your reply. I do realise that the doctors can't do much to help Thal Minors but it would be great if they acknowledged that our symptoms are real.
Thanks again for your reply
Cheers
Theresa


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: PixieDust on October 22, 2011, 08:25:52 AM
Something I ran across recently. This study was done in 1993. The findings are clear and are basically the same as what common sense will tell you. The severity of the mutation (genotype) has much to do with the the physical manifestation (phenotype) in thal minor. The more severe mutations, such as beta zero, can cause more problems in minor, just as they do in major. This is part of the explanation of why some thal minors do so much better than others. There are other factors, such as co-existence of alpha thal, which can moderate these symptoms. A person with beta zero trait who also has alpha trait, will typically have fewer symptoms than a beta zero who does not carry alpha trait. Those with the milder thal mutations will be likely to have a higher hemoglobin level and fewer, if any, symptoms.

http://sciencestage.com/d/792564/heterozygous-beta-thalassemia-relationship-between-the-hematological-phenotype-and-the-type-of-beta-thalassemia-mutation-.html

This is common sense that your phenotype would be related to your genotype, but most doctors on earth are not aware of this, which means, that you, the patient, have to try to inform the doctors.

Dear Andy,

I'm afraid how to find out these information.. I hope these are not found on blood tests ? Any specific test there for this?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on October 22, 2011, 03:40:52 PM
The only way to know the mutation is through a DNA analysis. If your insurance covers it, I would suggest getting the test.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jotembe on February 24, 2012, 04:36:30 AM

Many thanks for posting this information, Andy!

As Chairman of "Thalassämiehilfe ohne Grenzen e. V." (i.e. Thalassaemian Relief without Frontiers) in Germany I am struggeling every week again with doctors, who denie that Thal Minor could reallly show symptoms of attendant diseases. This study confirms the reports people with the ß-thal trait.

Kind regards

Juergen M. Beith

j.beith@thogde(.)org


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: foreverone87 on March 22, 2012, 10:07:46 AM
Hi all,

I'm new to this forum. I became interested in thalassemia because I am recently diagnosed with probably alpha thalassemia. I found it very interesting to understand on the condition. I only thought that blood could be sickled-shaped because of some problems, didn't know it was genetic. There are traces of it since my birth (jaundice, weakness and being asthmetic during 6-12months). Then came along more of anaemic. I have weakness and fatigue but overcame it with more exercise and outdoor activities. The sun helped in the sense that during the outdoor activities i became more healthy :D. I was enlisted in the navy (Compulsory national service in Singapore), and had many instances of weakness and fainting spells. But shrug it off as overexertion, until I had a more comprehensive blood test.

I would like to enquire more though on whether i could be carriers of both alpha and beta thalassemia because the test seems to give contradictory results. I had done 2 test, shall show you as follows

Haemoglobin Electrophoresis
HbA2                   2.5 (healthy reference range of 2.1 to 3.3
Haemoglobin F       0.3% (reference of <1.4)
Presence of HBH inclusion Bodies (less than 1%)
HbA present (Possible carrier of Alpha Thalassemia)

General Blood Test (of concern to Thalassemia)
Bilirubin lvl > 25 umol/L (reference of 3-24)
Red Cell Count > 6.8 (reference of 4.5-6.5)
Haemoglobin is normal range 14.9 (reference of 13.5-18)
Haemotocrit (PVC) 0.47 (reference range of 0.4-5.4)
MCV 69 FL (reference 78-98)
MCH 22 pg (reference 27-32)
MCHC 32 g/dL (reference 31-36)
RDW 16.7% (reference 11.0-15.5%)
Peripheral blood film > Dyserythropoietic changes present
suggestive iron deficiency and/or thalassemia trait


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 22, 2012, 10:09:36 PM
Your results are all indicative of alpha thal trait. The presence of HBH inclusion bodies helps to confirm this. The percentages of HbA2 and HbF are both consistent with alpha trait. If beta trait was also present, the HbA2 would be expected to be higher, while it is in the normal range for alpha carriers.  The HbF would be expected to be higher in beta minor.  All of your blood indices also suggest thal trait, but those alone don't necessarily discern between alpha and beta, but the electrophoresis results confirm alpha. There is nothing that suggests beta minor. If you have a specific question about the results and what it means, I should be able to answer it.
The slightly high bilirubin is found in both alpha and beta thal and is the cause of the jaundice. It is a byproduct of hemolysis, the early break down of red blood cells. This is normal in thalassemia, as some defectives red cells are produced and break down more quickly, causing higher activity in the spleen, sometimes also with an enlarged spleen, so there is a higher turnover of RBCs, which also is reflected in the red cell count being high, as the bone marrow reacts by producing more RBCs than is normal. Your hemoglobin count is normal, as it often is with alpha carriers. Although most medical texts will say that this doesn't happen in alpha minor, we have heard from some alpha thal minors who have suffered from sudden attacks of hemolysis, as is the case with HbH disease, which is a more severe form of alpha. If you have had periods when you believe your hemoglobin has suddenly dropped for up to two weeks, it may be a result of exposure to certain foods like broad beans, specifically fava beans, sulfa drugs or chemical fumes, like moth balls. We have a more complete list at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.0.html

Getting sunshine is very important, as vitamin D deficiency is prevalent in today's world. If there are periods during the year when you can't get sun, you should think about taking a vitamin D supplement during those months. I would also suggest folic acid. It is the one universal recommendation for alpha thals because it does help to build red blood cells, and since thals have a higher rate of red cell production than normal, they also need a higher dose of folic acid. 400-1000 mcg daily.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: foreverone87 on March 28, 2012, 07:45:13 AM
Hi Andy,

The reason why i brought this up was I thought RDW was supposed to be in the normal range for alpha thal. Maybe i should go for a iron deficiency test in case to confirm whether my HbA is actually in the normal range because of iron deficiency or not. Thanks a lot for the clarification :D


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 28, 2012, 10:26:02 PM
It's quite common for the RDW to be elevated in alpha thal trait.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: texas_thal on June 18, 2012, 02:08:09 PM
Hi Andy,

Would exposure to chemical fumes, sulfa drugs and fava beans have an effect for beta thal trait too, or is that seen mostly in alpha thal trait carriers ?

Thanks.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on June 18, 2012, 02:11:25 PM
Sulfa drugs in particular should be avoided by beta thals. I only know of anecdotal evidence about fumes causing hemolysis in beta thal.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: texas_thal on June 19, 2012, 04:32:18 PM
Hi Andy,

A lot of the antibiotics are sulfa drugs.

Do doctors prescribe sulfa drugs for infants ? If so, what would be substitute antibiotic for thal minor infants ?

Thanks.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Prets on October 03, 2012, 07:27:34 AM
Doctors believe thal minor is asymptomatic. But a lot of us get tested/diagnosed only after we have long term symptoms. The medical books need to be updated before doctors will follow it.

Even if thal minor is supposed to be symptomatic, Anemia itself is full of symptoms based on common sense. Less hemoglobin, low oxygen, faster fatigue, etc.



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Slade on November 20, 2012, 03:13:25 AM
I wonder if anyone with thal minor has ever measured their oxygen saturation? I'd like to know how it correlates to our day to day symptoms like fatigue, memory problems, exercise intolerance, etc.
There are portable devices called pulse oximeters that can measure the O2 saturation by simply clamping on the forefinger. Some inexpensive models are sold over ebay and some of them are capable of logging the data (i.e. overnight).  I wonder if such device would be of any use in evaluating our condition.
I saw some videos with Everest climbers using such oximeters to monitor their O2 levels while ascending to the summit. With increasing altitude their saturation dropped significantly and they felt extremely fatigued. At some point they used portable hyperbaric chambers to fight high altitude sickness. I wonder if similar "treatment" could temporarily improve our symptoms.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 07, 2012, 01:36:06 PM
Hi andy my name is kalpak i am from india and i am 23 years old...
Idont know anything about exjade  is it a supplement?  I take folic acid on regular basis do i need to take exjade  my hb is 10.9 and i dnt feel any  difficulty in my daily routine but my digestive system is poor...  i lost too much weight since i sufferd from food poisoning 2 years ago tell me how shuld i gain weight  a have beta thal minor... waiting for ur reply andy... take care...


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 07, 2012, 03:20:26 PM
No, Exjade is an iron chelation medicine that is used to remove excess iron.  Minors do not need it. You need to concentrate on good nutrition through diet with some added supplements, like folic acid. Bananas are a good food for weight gain. Look for foods that are nutritious.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Pratik on December 07, 2012, 11:44:56 PM
No, Exjade is an iron chelation medicine that is used to remove excess iron.  Minors do not need it. You need to concentrate on good nutrition through diet with some added supplements, like folic acid. Bananas are a good food for weight gain. Look for foods that are nutritious.
I agree with bananas haha and that too with milk (bananas soaked in milk should be taken to gain weight) because my brother used to eat it and he gained nice sum of weight lol.

-P.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 08, 2012, 03:35:28 AM
Thanks andy!
I also have a question about gallstones i found to have gallstones a year ago when i suffered from serious stomach pain i felt like hell 3 continuous days during that pain. Doctors told me remove gall bladder  so that the stones never form again the size of  the biggest stone measure 1.3 cm in diameter. I want ur opinion on it. do i remove my bladder? Or is there any way to dissolve those stone? Cause i dont want to feel that pain again.
And if i need to remove the bladder is that surgery is major and hav some risk? Is there any diadvantages of removing gall bladder? One thing i forgot to tell you my billorobin is always high my skin looks yellow and eyes horribly yellow... total billorobin count is 16.43 and never really went below 13. And conjugated bilorobin is 1.43. What should i do? Thanks for the previous reply waiting for ur reply on this one... take care


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 09, 2012, 11:17:04 AM
Plz andy i request u to suggest me about above question... i hav gave u all info about my thal and gallsrones plz sugfest me what should i do? Waiting for ur reply... take care


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 09, 2012, 05:45:11 PM
Hi Kalpak,

It is unusual for a thal minor to have such severe gallbladder symptoms. It indicates that you have a high turnover of red blood cells. I always think surgery should be a last report but you have to be careful with the gallbladder because of the risk of rupture. But before suggesting removal, I have some questions.
1) Have you had any ongoing exposure to chemical fumes? This includes things like moth balls, gasoline fumes and synthetic perfumes and colognes.
2) Have you taken any medicines like antibiotics or painkillers like ibuprofen over a period of time?
3) Do you eat any type of broad bean?
4) Do you follow a good diet? Do you consume much red meat?
5) Do you get much sun? Has your vitamin D level been tested?



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 10, 2012, 01:06:19 AM
Hi Andy!
No i am not having any ongoing exposure to chemical fumes... secondly i have taken painkillers during that severe pain i mentioned but i dont know exactly if i had consumed the one you are mentioning.... i dont eat any kind of broad bean will u plz tell me which broad bean should i consume? You earlier mentioned that i need to take supplements along with folic acid pills will u plz tell me the names of those supplements? And i dont consume red meat as it is unavailable here... i dont know if my diet is good or not as nobody ever tell me what diet should i follow. here in my place i dont find much knowledgeble people who can suggest me about thal will u plz tell me what diet i should follow? I think i get enough sun but i havnt yet check my vitamin d levels...
U have mentioned about the risk of rupture what care i should take to avoid them and what do u mean by high turnover of red blood cells?
Is there any risk after removing gall bladder as a doctor once told me that after removing bladder If i will suffer from malaria then there is a risk is that true?
Thank you very,very much andy for All those suggestions you are really a god to all like me... waiting for your reply take care...


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 10, 2012, 09:29:07 PM
Actually, you should not eat broad beans as they can cause destruction of RBCs, just as certain chemicals and drugs can. It is the premature destruction of RBCs, hemolysis, that causes the excess bilirubin that causes skin and eyes to yellow and gallstones to form. We often hear from thal minors who have some yellowing and some gallbladder issues, but yours are worse than normal for a minor. However, some minors do get an enlarged spleen and gallstones from the high rate of hemolysis. If your doctor wants to remove your gallbladder for your safety, then it should be done. The surgery is very common and is usually done using 4 small holes, rather than a cut. Talk to your doctor. If the doctor thinks you could be in danger from the gallbladder, you should have it removed. It will not increase your chances of catching malaria. If it isn't urgent to remove the gallbladder, vitamin C and natural vitamin E can help to prevent gallstones. Eat a diet high in fiber with plenty of fruits and vegetables. A traditional Indian diet is very good because it contains many vegetables and herbs and spices with medicinal properties. You don't get much red met and that is good as fatty meats can also lead to gallstones.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 11, 2012, 05:18:02 AM
Thanks Andy! as you mentioned i also have enlarged spleen and during fever it almost occupies Half of my stomach.
The doctor told to me to wait till i complete my graduation and then to perform the surgery to remove gallbladder. Is there any complications that can occur after i remove my gallbladder? And what about spleen enlargement? Is there any way to keep it normal? Andy i have another important question will my skin and eyes look normal after removal of bladder? I have never saw them normal before? Waiting for your reply andy... your reply means a lot to me take care...


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 11, 2012, 11:10:58 PM
Kalpak,

Have your skin tone and eyes been yellowish and your spleen been enlarged all your life?  Thal minors often have enlarged spleens, but usually not severely. Yours sounds like it gets quite large. I want to make sure you understand why it happens. Thal minors produce a mixture of normal red blood cells and defective RBCs because one of the beta globin genes has some defect and doesn't work to help produce normal hemoglobin. The RBCs produced because of this tend to be small, pale and misshaped. These defective RBCs are filtered out by the spleen and don't live as long as normal RBCs. The spleen enlarges because it is filtering out RBCs at a faster than normal rate. When the rate of this hemolysis is high, as appears to be the case with you, the spleen enlarges even more. A by-product of hemolysis is increased bilirubin, leading to gallstones. The size of your spleen and the amount and size of your gallstones both indicate that you have a high rate of hemolysis. This might be related to the specific beta mutation you carry.

Your doctor is the best judge of whether your gallbladder poses a risk to your health. The gallbladder helps in digestion of fats, so if it is removed, a low fat and high fiber diet is necessary. To try to slow down the rate of hemolysis, I would suggest the following daily:
400 IU natural vitamin E.
2000 mcg (2 mg) Folic acid.
1000 mg vitamin C.
Get the vitamin D blood test as soon as you can.


There is a good article on the gallbladder at http://excelonhealth.com/ExConditions_Gallbladder.html


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 12, 2012, 02:03:51 AM
Andy!
No my skin tone and eyes are not yellowish since i born when i was 9mnths old i suffered with jaundice until then i wasnt detected with thal either during that treatment i was detected with thal minor i dont have any member in my family with thal but my grandparent had trait of thal so it came to me... so from that time my eyes look yellowish... thank you andy for all your suggestions and for those supplements you suggested and i will do the vitamin d test as soon as possible... by d way Andy what do u think about my health condition now? As i told you about my reports i mean i am 23 now do you think there the spleen condition that you mentioned as unusual may cause some problem in future? Or is there any kind of danger due to the current condition?
Andy one last question what about when i'll get married if my partner is not thal our child will be healthy? Doctors say that if i'll have boy child he will also have thal minor and if i will have gurl child she will be healthy... is it like that? You havnt told me about if my eyes look normal after i remove gall bladder or not? Thank you very much andy for all your replies.... take care


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 13, 2012, 01:29:43 AM
Hi Andy,
I take 5mg folic acid supplements is that ok? As you recommended to take 2mg?
Waiting for your reply andy... take care


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 13, 2012, 09:15:46 AM
5 is good. I use 2 for the minimum but 5 is a better dose.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Slade on December 13, 2012, 03:11:34 PM
Vitamin C is valuable antioxidant and could be an immune system booster but it is said to enhance iron absorbtion from food sources. http://ajcn.nutrition.org/content/73/1/93.long (http://ajcn.nutrition.org/content/73/1/93.long) .
Is it really necessary to take 1g Vit C daily if the recommended dose is somewhere below 100mg? Some studies suggest that along with antioxidant properties Vit C also has pro-oxidative potential by reducing ferric iron to ferrous iron. This process could generate reactive oxygen species.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 14, 2012, 02:37:32 AM
Thank you andy,
You haven't replied about my few doubts i have asked you in my previous question please have a look at the in your earliest convinience your suggestions means a lot to me... take care


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 15, 2012, 09:26:05 AM
Kalpak,

The belief that thal is carried by only one sex is based in ignorance, not science. There is absolutely no connection between thalassemia and the sex of a person. I have heard this before and wonder how doctors can believe such ludicrous nonsense. Your children have a 50% chance of being thal carriers, regardless of which sex they are.

I think you need try adding the supplements I have mentioned to see if the hemolysis can be slowed. I feel that unless the hemolysis is reduced, that you will lose both your gallbladder and spleen. You can live without either, but your immune system will be compromised as a result.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 15, 2012, 09:39:15 AM
Slade,

There is no reason for thal minors to be concerned about iron load, unless they are living with an abnormally low Hb for a minor. I feel that you can throw away the minimum daily requirements for most nutrients, as minimum is exactly that. The minimum. Are you trying to prevent scurvy or promote good health? Take the minimum to avoid scurvy. I prefer to address good health, not just to avoid the diseases that are caused by severe deficiencies. I have taken anywhere from 3 to 20 grams of vitamin C daily over the past 40 years. 20 can be difficult on the colon and I would not advise levels in that range for most people. 1 gram daily is not a large dose and we need to remember that C washes through the body quickly. Twice daily dosing is preferred because of this fact. Yes, C does help fix iron in the body, but unless your Hb is very low, your body's mechanisms will not become irregular and you will not absorb excess iron. One benefit of vitamin C that is not widely known is that vitamin C actually "recharges" vitamin E after it has already been used as an antioxidant, so that it can be used again by the body as an antioxidant. I wish I could recommend higher doses for majors, but because it can free up iron in the body to the point that the free iron can interfere with heart function, majors must limit their intake of C.

In this context with Kalpak, vitamin C is essential. He has what can only be considered a severe case of hemolysis. I have recommended the nutrients that may have some effect on slowing down this process by helping to create healthier red blood cells. Without efforts along this line, he will lose both gallbladder and spleen. I feel his gallbladder is so bad that he may soon lose it anyway, but this will not change things for his spleen, which is also greatly enlarged. 


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 16, 2012, 03:20:44 AM
Andy!
My spleen measures 9cm... is it too big for a thal minor? As u said that if this will continue i may loose my spleen too...
9 cm is too big for a thal minor? what should be the normal size for a thal minor?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Pratik on December 16, 2012, 04:56:42 AM
Andy!
My spleen measures 9cm... is it too big for a thal minor? As u said that if this will continue i may loose my spleen too...
9 cm is too big for a thal minor? what should be the normal size for a thal minor?
Kalpesh,

Your spleen looks absolutely fine and normal.

Quote
A normal spleen weighs 150 g and is approximately 11 cm in craniocaudal length.

http://emedicine.medscape.com/article/206208-overview

So your is even better being 9 cm.

-P.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 16, 2012, 12:39:49 PM
Kal,

I was going by what you said as far as spleen size.
Quote
i also have enlarged spleen and during fever it almost occupies Half of my stomach.

Half the stomach is quite large. 9 cm is no big deal, but it does become a big deal when your spleen gets so large. Have you ever had a blood transfusion?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: kalp3 on December 17, 2012, 01:09:15 AM
Yes andy i had blood transfusions in past and my spleen size measured 12cm when it gets enlarged do u think 12cm spleen size is too much in my case? After having meal and when my stomach is not empty its not that big... as i read some articles on spleen size they say that 11cm is normal spleen size and 12cm is also not a condition where you need to remove your spleen... what do you think andy? What should be the spleen size where someone have to perform surgery?
Spleen removal have many diadvantages do u really think that with 12cm spleen i need to remove it?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on December 17, 2012, 10:19:22 AM
Kal,

I think you may have had an antibody reaction to the transfused blood, as this is the only explanation that makes much sense. No, your spleen is not large enough to cause concern. I will be back with more later.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: martimoran on April 08, 2013, 03:43:09 PM
Hi Hannah, I also have the mouth sores like crazy.  Began in 1996 after I quit smoking and hasn't stopped.  Now taking viral meds every day, but still get them when I get tired and run down.  I also feel like my symptoms are getting worse.  Some days I barely have any energy.  have been taking b12 injections and that seems to help.  good luck with the sores, I don't think it ever stops. :wah


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: sidhi on May 13, 2013, 06:59:05 AM
Hi All

I am the father of a 5 yr B-Thal Major girl . She is doing wonderfully well. However i,being thal minor, is going thru certain problems with my health. Recently, i got my HB checked as off late i've been going thru extreme exhaustion and fatigue. To my utter surprise it came out as 11.5 which i feel is far below the normal male levels.

I request if anyone can guide me into this. I feel exhausted all throughout the day and this is hampering my work as well as personally.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Berlian on May 13, 2013, 08:46:11 AM
Check your feritin first, Sidhi.
Almost all people who have low hb or hct, usually their feritin (iron store) is low too.
And don't forget, low B12 or folic acid can make poor red blood cell production.
For the best answer, we can wait until Andy come.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 13, 2013, 09:55:55 PM
Sidhi,

Have you had your Hb checked previously? Your level isn't unusual for a thal minor. Also, have you had your vitamin D level checked?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: sidhi on May 18, 2013, 04:41:58 AM
Hi Andy

Yes, this is 1st time i've got my Hb checked. And i am about to get Vitamin D checked as well. But just for knowledge what is the ideal vitamin c count be.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Berlian on May 18, 2013, 05:53:21 AM
I think trouble in vitamin C is rare.
The most common vitamin that make trouble like deficiency, there are vitamin D and B12.
But vitamin D more common rather than B12.
Hope it helps.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 19, 2013, 11:17:09 AM
I wouldn't bother with a vitamin C test. C is water soluble and does not stay in the body for long, so it needs constant replenishing.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Sue B on September 09, 2013, 12:53:06 AM
Thanks for posting the article. I was diagnosed about 10 years ago and was told that the thing I had to watch was excess iron and that if I got sick it would take me longer to get over things. I found this group last year and have been so grateful to have an explanation for so many things that I feel everyday and now I have something to give my doctor.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Connie on September 10, 2013, 06:48:32 AM
Hi,
Being a Thalassaemia Minor I know that I have always suffered symptoms but I fear that if I show this study to my doctors they would just dismiss it because it has not been sent to them from the top. Medics and such always attend refresher courses where they are told about new findings and if they have not been presented with this research then we are fighting a loosing battle.
Thank you for the information, I have the Thalasaemia nurse coming to visit me on the 24th to take some bloods. I will show her this and hope she might look into it.
Regards Tina.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: vinayak on September 16, 2013, 03:03:51 PM
hi Andy this information is really very helpful thank you for posting this information


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Lavender on November 06, 2013, 05:07:31 AM
Hi,
I am new to the forum and have found it very interesting. I do though have one particular question.
My daughter (Amy) has beta thalassemia minor, diagnosed a couple of weeks ago and I am going through the same doctor's responses as posted elsewhere that she is an asymptomatic carrier when in fact she shows all the symptoms mentioned in this forum.
One complication is Amy is a profoundly mentally and physically handicapped little girl (23) and cannot hear or speak so cannot communicate what she is feeling. That something was wrong came to light about two months ago when she developed and has continue to develop very significant unexplained bruising mainly on her upper arms and often covering most of her upper arm.
I cannot find this mentioned in the forum and wondered had anyone suffered from this and were there any known causes or treatments that seemed to be beneficial.
Any help would be very much appreciated
John


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on November 06, 2013, 09:07:00 AM
Hi John,

Bruising easily is often a sign of vitamin C deficiency, as lack of C weakens the capillary walls. The simplest thing would be to try a supplement and see if it alleviates the bruising.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: redfrisby on January 24, 2014, 09:42:49 AM
Hi All...

Diagnosed as having Beta Thalassemia minor/trait years ago I am now 34 and have always managed ok - at times I have been very anaemic but always recovered.
The problem is that the last few months I have been getting severely fatigued - so much so that some morning my husband has been unable to wake me, I seem to have more energy at night.
My question is can this get worse? I live in the UK and my doctor like many think there are no symptons.

I could cry I feel so disorientated and tired at times. I have three young children but no other mothers seem to struggle the way I do, to do everyday things like taking the kids to school....

Any help appreciated

Leanne


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: ranajoychatterjee on January 26, 2014, 11:14:44 PM
Hello Everyone,

Thanks to Andy for approving my registration. I have a nine year old who has healthy growth and bit overweight. He was recently complaining of pains and tiredness, because of which we took him to the doctor treating my wife. She is having Ankolysing Spondylities and therefore we were worried on that account. Initial blood test reports showed that he has Vitamin D deficiency low haemoglobin, but no symptoms of Ankolysing Spondylities.The doctor did a repeat test with haemoglobin electrophoresis and the test reports are attached. I read somewhere that kids of 9-11 have HbA2 of upto 14, does this mean my son Rishit has Thalassemia Trait ?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on January 27, 2014, 06:23:03 PM
Leanne,

The first thing you should do is get your vitamin D level checked, as deficiency is extremely common and deficiency exacerbates the symptoms of thal minor. Your level should be a minimum of 30, with the understanding that optimal is at least 50. Your doctors will of course say thal minor has no symptoms, which is rather silly considering the thousands of thal minors who have reported similar symptoms here and at other thalassemia forums. Thal minor has real symptoms. There really isn't much doctors can do anyway. It results in an anemia that can't be treated with iron and there is no med that will raise Hb, and low Hb is only part of the problem. You have one beta globin gene that has a defect or deletion and it produces little to no beta globin, which along with alpha globin form hemoglobin, so without an adequate amount of beta globin, you can't produce a normal Hb level. Instead small, pale misshaped red cells are formed along with the good ones produced because you do have one normally working beta gene. The weak RBC's break down more quickly, leaking hemoglobin and cell parts into the blood. In addition, your body produces alpha globin normally, so you have an imbalance between the two globins, leaving excess alpha chains which combine together to form tetramers that like the bad RBC's cause oxidative damage throughout the body. This is the other, often ignored side of thalassemia, but it causes or contributes to many of the problems thals will have. I believe that the best thing a thal minor can do is change their diets and nutrition so that the components of blood cells are comsumed and plenty of antioxidants are also used to counter the damage being done by the constant oxidative processes at work. Please look over the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
You will learn much about what you can do to help yourself feel better and be in better health. When you look at food, think nutrition and antioxidants and include antioxidant supplements as part of your regimen. Folic acid and B complex are important components of RBC's. Thals have a higher than normal need for many nutrients and they need to be replenished. Minors who do follow a good supplement program and get at least some mild exercise regularly, do improve. There is nothing that will make you feel completely normal, but you can do much for yourself without the use of meds. This approach does take time, but the alternative is to do nothing. Some other basic tips are pace yourself and catch a nap whenever you can. You're dealing with chronic anemia and you don't have the same oxygen supply as non-thals. You have trouble keeping up because of a real health issue, so don't compare yourself to those who don't have this problem. We hear from so many people who express the same thoughts and it really does help knowing that it's a real thing that limits your physical activity.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on January 27, 2014, 06:32:20 PM
Ranajoy,

Do you know which parent is also a thal minor? Your son definitely has it, so one of the parents is also a thal carrier. The HbA2% will only be seen that high in thal minor and the other blood values also indicate thal minor.

What is his vitamin D level? This needs to be rectified, as D deficiency will make thal minor issues worse. Does he take any vitamins or supplements? Is he cooperative about eating nutritious foods like fruits and vegetables? Proper nutrition is important in thal minor. I will refer you to the thread on nutrition at  http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mommabull on February 07, 2014, 01:53:11 PM
This is my latest sets of blood work. What can I do to help with my symptoms. I am so tired and hurt all the time along with a whole host of other things. I also have liver disease and am a carrier for hemochromatosis on top of the beta thal minor and other things. Any help would be appreciated.

01/29/14 06:00RoutChems [Performed by Three Rivers Hospital Lab] Percent Iron Saturation: 50     

01/29/14 06:00BasicMetab [Performed by Three Rivers Hospital Lab] Sodium Blood: 140 mmol/L (136-145)    Potassium Blood: 3.7 mmol/L (3.5-5.1)    Carbon Dioxide Blood: 28 mmol/L (21-32)    Urea Nitrogen Blood: 11 mg/dL (7-18)    Creatinine Blood: .7 mg/dL (0.6-1.3)    Glucose Blood: 120 mg/dL (74-106)    Calcium Blood: 9.4 mg/dL (8.5-10.1)   

01/29/14 06:00CompMetab [Performed by Three Rivers Hospital Lab] PROTEIN TOTAL BLOOD: 7 g/dL (6.4-8.2)    ALBUMIN BLOOD: 3.7 g/dL (3.4-5.0)    BILIRUBIN TOTAL BLOOD: .7 mg/dL (0-1.0)    ALKALINE PHOSPHATASE BLD: 80 U/L (50-136)    AST: 34 U/L (15-39)    ALT: 76 U/L (12-78)   

01/29/14 06:00RoutChems [Performed by Three Rivers Hospital Lab] Iron Blood: 130     Total Iron Binding Capacity: 258     Ferritin Blood: 219     

12/12/13 12:36CBC [ Clinic #: 6153220128.] WBC: 5.7 x10(3)/mcL (3.9-10.7)    Hemoglobin Blood: 11.8 gm/dL (11.8-16.0)    PCV BLOOD: 38 % (36-43)    MEAN PLATELET VOLUME: Not Measured fL (9.3-12.8)    PLATELET COUNT: 192 x10(3)/mcL (135-371)    Red Blood Cells: 5.76* x10(6)/mcL (4.00-5.50)    MCV: 65* fL (81-98)    MCH: 20.5* pg (27.0-32.0)    Mean Corpuscle Hemoglobin Concentration: 31.4 gm/dL (31.0-35.0)    RDWSD: 37.4 fL (37.4-52.4)    Red Blood Cells Width Distribution: 16.5* % (11.1-14.3)   

12/12/13 12:36Differentl [ Clinic #: 6153220128.] NUCLEATED RBC: 0 /100_WBC     NUCLEATED RBC#: 0.00 x10(3)/mcL     

12/12/13 12:36Coag [ Clinic #: 6153220128.] PATIENT (PT): 13.1 seconds (11.0-14.6)    INR: 1.0     

12/12/13 12:36BasicMetab [ Clinic #: 6153220128.] Sodium Blood: 138 mmol/L (136-144)    Potassium Blood: 3.6 mmol/L (3.3-4.8)    Chloride Blood: 104 mmol/L (98-107)    Carbon Dioxide Blood: 27 mmol/L (21-29)    Urea Nitrogen Blood: 12 mg/dL (7-21)    Creatinine Blood: 0.77 mg/dL (0.57-1.11)    eGFR: > 60 ml/min/1.73m2     eGFRAA: > 60 ml/min/1.73m2     Glucose Blood: 84 mg/dL (70-99)    Calcium Blood: 9.1 mg/dL (8.4-10.5)    AN-GAP: 7     

12/12/13 12:36CompMetab [ Clinic #: 6153220128.] ALBUMIN BLOOD: 4.3 gm/dL (3.5-5.2)    BILIRUBIN TOTAL BLOOD: 0.8 mg/dL (0.2-1.2)    ALKALINE PHOSPHATASE BLD: 63 unit/L (40-150)    AST: 48* unit/L (5-40)    ALT: 77* unit/L (0-55)   

12/12/13 12:36RoutChems [ Clinic #: 6153220128.] Bilirubin Conjugated: 0.4 mg/dL (0.0-0.5)    Iron Blood: 71 mcg/dL (50-175)    Total Iron Binding Capacity: 267 mcg/mL (250-450)    Percent Iron Saturation: 27 %     Ferritin Blood: 239* ng/mL (15-204)   


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on February 08, 2014, 09:09:37 AM
Since you have hemochromatosis, would your insurance cover a liver MRI (Ferriscan) to check for iron in your liver? Your iron levels all do show high but it can build in the liver and not be revealed by the iron panel. Since there have been liver disease related deaths in your family, this is very important. An iron loaded liver will eventually cause liver failure, so if an iron load is present, it must be addressed.



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mommabull on February 14, 2014, 11:26:36 AM
I am sure it would if my liver specialist would show them that it is medically needed.   My liver specialist believes that it is caused by nash even with the family history hemochromatosis and beta thal and me telling her how I feel it all is combined. I am considering looking for another liver specialist but not sure if I should. Beta thal is not very common here and only a hanful of all the doctors I have seen know anything about it. My hematologist I was seeing said me and my grandmother where the only cases he had ever had. I will press the point with her it couldn't hurt anyway lol. Thanks for looking over my labs


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on February 15, 2014, 03:24:39 PM
I feel that it is very difficult for doctors to properly treat patients when they are reluctant to run the tests which can rule in or out various possibilities. Because you do have hemochromatosis, an investigation of liver iron concentration would be beneficial.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: mommabull on March 04, 2014, 10:11:15 AM
This is the response I got from my liver specialist when I asked them to do the ferriscan.  :mad


Ms. Bull: I am not sure if this imaging is done here at Vanderbilt. I discussed with Dr. Perri and it is felt that this imaging is not very reliable. I can check with our radiologist. Given that the test isn't that reliable it probably will not change your treatment course.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: HusbandOfThalBetaMinor on September 26, 2014, 04:16:01 AM
Just adding my voice that Thal Minors do have symptoms that actually impact daily life. Some it seems to impact lot severely than others but saying that they have no symptoms is load of rubbish from the medical profession.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Peter on December 15, 2014, 06:15:47 AM
Absolutely agree - I too am medically qualified ( ENT Surgeon ).  Hb around hovers 11, and exercise tolerance limited as a rsult - not major but most definitely not able to keep up with others of my age in a race.




Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Brickfielder on December 19, 2014, 08:32:04 AM
Generally speaking I would agree with the previous comment. However it is so difficult to have an objective assessment of the performance impact of Thal minor on prolonged physical activities / endurance sports. A large cohort would be needed to really take into account the normal variability wihin the population.
I have Thal minor, my HB hovers around 11, MCV is particularly low (56 I think). I joined a running club a few months ago and I find myself running with with some of the fast guys in the group (not the fastest!). Interestingly though I perform much better on shorter distances on track (up to 1k/1mile), even though I train specifically for mid distances on road (10 miles). I find it bizarre because the same people who run much faster than me during long runs cannot keep up with me on shorter runs. I think for me the 'sweet spot' is around 3k. I do wonder if thal plays a role, because no one else of my running mates experiences this.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: plainmary123 on March 17, 2015, 01:36:38 PM
I thank you for this site and letting me join.I am 43 and for as long as I can remember has been told that I had sickle cell trait,but last year I start seeing a hematology doctor who has not said much about Thalassemia just that she thinks I have it .She had me to take iron pills for 30 days and then she said I was not deficient in iron so stop. I was told since I didn't have symptoms she suspect it is alpha minor but my medical records just says unspecified anemia.My RBC-blood is 5.53 and my red cell distribution width is 16.2% ,is there other numbers I need to look at to see what is wrong? I was admitted Sunday into the hospital because I was having shortness of breath which started a few weeks back but the fatigue has been there a while now.They checked for blood clots and any heart issues but found nothing I did mention to them that I was told I had thalassemia so they said to see a hematologist .Go figure ,she does not put thalassemia in my records ,just in her notes ,of possible alpha minor is what the nurse said when I called.I am in need of understanding can someone help me make since of how to know if I have this and is it trait,minor ,major ,alpha,beta,how can I read my lab to get the picture?

 ??? I am really lost and cunfused


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 18, 2015, 07:42:24 PM
Hi plainmary123,

It would help to see the test results for hemoglobin or hematocrit, and values for MCV and MCH. If alpha thalassemia is involved, it may take a DNA analysis to confirm. A hemoglobin electrophoresis test would be able to detect beta thal minor. If you haven't had an electrophoresis test, it should be done. Your RBC is a bit high, which is common in thal minor but not in iron deficiency. Iron won't help, but folic acid in the form of L-methylfolate is advise to help build red blood cells. Your Hb level will tell me more if you can provide it.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: plainmary123 on March 21, 2015, 01:00:10 PM
I have this ,I hope you can tell me Andy what this means...I thank you so much for helping me and others with this site and all the information.


Component Name   Result   Normal Range      
Glucose - Blood (Random)   107 mg/dL   65.0 - 99.0   H   
Urea Nitrogen - Serum (BUN)   13 mg/dL   6.0 - 24.0   N   
Creatinine - Serum   0.77 mg/dL   0.57 - 1.0   N   
Creatinine Clearance (Est)   151.9200 mL/min   88.0 - 128.0   H   
BUN/Creatinine Ratio   17   9.0 - 23.0   N   
Sodium - Blood   142 mmol/L   134.0 - 144.0   N   
Potassium - Blood   4.2 mmol/L   3.3 - 5.1   N   
Chloride - Blood   104 mmol/L   97.0 - 108.0   N   
Carbon Dioxide (Total) - Serum   28 mmol/L   18.0 - 29.0   N   
Calcium - Serum   9.8 mg/dL   8.7 - 10.2   N   
Protein (Total) - Serum   7.2 g/dL   6.0 - 8.5   N   
Albumin - Serum   4.3 g/dL   3.5 - 5.5   N   
Globulin   2.9 g/dL   1.5 - 4.5   N   
A/G Ratio   1.5   1.1 - 2.5   N   
Bilirubin, Total   0.2 mg/dL   0.0 - 1.2   N   
Alkaline Phosphatase   111 IU/L   39.0 - 117.0   N   
AST (SGOT)   24 IU/L   0.0 - 40.0   N   
ALT (SGPT)   41 IU/L   0.0 - 32.0   H   
GFR Non-African-American   95 mL/min/1.73   59.0 -   N   
GFR African-American   109 mL/min/1.73   59.0 -   N   
Ferritin   108 ng/mL   15.0 - 150.0   N   
Iron - Saturation   14 %   15.0 - 55.0   L   
Iron Binding Capacity (TIBC)   384 ug/dL   250.0 - 450.0   N   
UIBC   330 ug/dL   150.0 - 375.0   N   
Transferrin, Soluable Receptor   25.9 nmol/L   12.2 - 27.3   N   
Iron - Serum   55 ug/dL   40.0 - 155.0   N   
Transferrin   346 mg/dL   200.0 - 370.0   N   
Transferrin Saturation   11 % Saturation   -   L   
Hematology - 01/14/2015

 
Component Name   Result   Normal Range      
WBC - Blood   6.3 x10E3/uL   3.4 - 10.8   N   
RBC Count - Blood   5.53 x10E6/uL   3.77 - 5.28   H   
Hgb - Blood   12.1 g/dL   11.1 - 15.9   N   
Hematrocrit   38.7 %   34.0 - 46.6   N   
MCV   70 fL   79.0 - 97.0   L   
MCH   21.9 pg   26.6 - 33.0   L   
MCHC   31.3 g/dL   31.5 - 35.7   L   
Red Cell Distribution Width   16.2 %   12.3 - 15.4   H   
Platelet Count   364 x10E3/uL   150.0 - 379.0   N   
Neutrophil %   45 %   -   N   
Lymphocyte %   45 %   -   N   
Monocyte %   7 %   -   N   
Eosinophil %   2 %   -   N   
Basophil %   1 %   -   N   
Granulocytes / Bands - Blood   3.0 x10E3/uL   1.4 - 7.0   N   
Lymphocytes - Blood   2.8 x10E3/uL   0.7 - 3.1   N   
Monocytes - Blood   0.4 x10E3/uL   0.1 - 0.9   N   
Eosinophils - Blood   0.1 x10E3/uL   0.0 - 0.4   N   
Basophils - Blood   0.0 x10E3/uL   0.0 - 0.2   N   


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on March 22, 2015, 11:17:56 AM
Hello,
2 years ago, dr. Said that i have thalassemia minor with symptoms, i was suffering from bones & articulations pain
The pain was very strong , i did rhumathoide analyses .. etc also rmi on by back .. all was good, so pain was refered to thalassemia .. few monthes later, i got a very bad circulation pulse & tension very low. My dr. Asked me to visit a cardio, in the eco i have mitral regurge but it's normal.
My dr. Said because of thalassemia plus my alergy from weather & pollution i have a lake of oxygen that's why bad circulation & pain
Pain become stronger specially back pain, i went to another hemologue, he said it's not thalassemia minor but it's a normal anemia, stoped folic acid & took iron
Didn't feel good at all, pulse 50 to 55 ... tension 90 / 47, can't see good .. etc
I repeated the test, hb f 0 & A2 3.9, got an angina & took a sublingual nitrate
actually i stopped iron & returned back to folic acid plus vitamin B 12 ... a litlle bit better .. my tension now is 100 /70 & my pulse within normal ... but don't understand do i have thalassemia minor or not .. in the first analyse A2 was 3.5 & the  hb F was present in the diagram .. my dr. Said that i'm thalassemia minor with major symptoms .. i'm lost & visited too mich drs. & All the time fatigue 2 years ago
Can anyone help me please


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 22, 2015, 07:32:44 PM
plainmary123,

The iron values don't indicate deficiency. The MCV, MCH and Hb all are within range for alpha thal trait. A hemoglobin electrophoresis test would shed more light, as the HbA2 percentage would be lower in alpha thal trait than in beta thal minor. Even with those results, it probably wouldn't be 100% conclusive that it's alpha thal, but it would be very likely.

There are not a lot of suggested treatments for alpha thal. Folate is needed to build red blood cells and with the lower Hb level and the higher RBC level, it shows that the overproduction of red blood cells typical in thal minors is present, which means there is a higher than normal need for components of red blood cells. I suggest 2000 mcg (2 mg) L-methylfolate daily. A B complex supplement and magnesium should also be considered.

If it is alpha thal and it is likely, avoidance of certain substances is recommended, as to avoid incidents of favism, where the Hb level suddenly drops on exposure to fava beans, other broad beans and various drugs and chemical fumes. Try to avoid chemical scents that are used in many household products, like detergents and perfumes. If you notice sudden bouts of tiredness, examine what you may have been exposed to. I have heard from several people recently who had bouts of anemia after exposure to cigarette smoke. For a list of some things to avoid, see http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830

And get your vitamin D level tested. Anything less than 35 isn't acceptable and a level of at least 50 should be the goal. Correcting deficiency does help with tiredness and fatigue and also improves the immune system.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 22, 2015, 07:35:16 PM
Nouna,

You need further testing. It does not look like beat thal minor but it may be alpha thal minor. Is it possible to have a DNA analysis for alpha thal?
And what is your hemoglobin level?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: plainmary123 on March 22, 2015, 09:41:04 PM
I thank you so much Andy you are a God sent,I am going to do all that you suggests so I can get this under control.I hope that the shortness of breath comes to an end as well.I will keep you posted...thanks again.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: ivancro on March 23, 2015, 06:43:29 AM
Andy,
is for thal beta minor KAL Folic acid a good way? It is only one available in my country and I'm reading mixed  reviews about health safety of the one I mentioned as pro-cancer and such?...

here is the link of the product I'm using (and it helped me so far battling fatigue and tiredness) http://www.vitacost.com/kal-folic-acid


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 23, 2015, 09:12:26 AM
ivancro,

It's a good product.



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on March 23, 2015, 11:08:14 AM
Andy .. thanks so much that you replied & thanks that you make me feeling not alone
The dr. Though also that i have alfa thalassemia but because he didn't find neither Hb H or S he said no
He though this because my parents never had symptoms like mine
But i have 4 second cousins (boys) that have favism
You are right concerning alergy , i can't support a strong perfume or cigaret's smoke or dust
First time that i got symptoms was after a walking camp for 6 days with lot of moutains, when i climbed moutains for the first time (2 years ago) i discovered that i can't breath & i lost conscience ( than i started analyses i was in france)
I don't know if there is dna test in my country , i'm in Egypt. But will ask
Here some numbers from analyses if can help
Hb 11.2
Haematocrit 36 %
red cell count 5.0 M/cmm
MCV 72
MCH 22.4
RDW 14.8
total leucocytic count 6600 / cmm
Serum iron 95 ug/dL
serum ferritin 26.7 ng/ml
serum total iron binding capacity 333 mg/ dl
Hb A 96.1
Hb A2 3.9
Hb F 0
by the way i was also tested for thyroid hormones & kindey functions & was good



Opps i think i replied concerning another case thinking u were asking me .. sorry :)


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on March 25, 2015, 02:34:16 PM
Andy,
Did i reply to your question ?? do you have any advise ??
My tension actually 90 /60 & pulse 55
& still have fatigue
thanks


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 27, 2015, 01:54:22 PM
Nouna,

Most adults will not shows any hemoglobin Barts, even when they do carry alpha thal, so electrophoresis is not always useful when alpha is present. If you are a thal carrier, and it is likely, you carry alpha thal. You have low Hb, low MCV and MCH, which all indicate thalassemia. Your iron levels are normal. The electrophoresis shows no HbF and low HbA2, so beta thal is ruled out, leaving alpha thal as the only real possibility. Putting that together with a family history of favism, makes alpha thal very likely. A DNA analysis can confirm this, but is probably not necessary.

Because of your symptoms, I recommend that you take 5 mg L-methyfolate daily. This is most important for alpha thalassemia. I also suggest B Complex, natural vitamin E and magnesium be taken daily. Also, get your vitamin D level tested and report back with the number. Vitamin D deficiency is very common and deficiency causes all sorts of issues, like fatigue, tiredness and a low immune system. It is extremely important that your level is in normal range.

You need to observe and look for any substance that may cause favism. If you notice sudden tiredness with no explanation, review what you have been exposed to. Avoid all broad beans and also avoid chemical fumes and scents as much possible. Avoid cigarette smoke as well.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: plainmary123 on March 28, 2015, 02:43:33 AM
Hello Andy,I found that  my Vitamin D 25-OH Total was 9 and I have Alpha Thalassemia Trait,is that the same as minor?I was also told to see a Rheumatologist due to some inflammation tests I had that was high,you wouldn't know about Lupus or Liver test ? Thanks again Andy for everything.


Thank you !


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 29, 2015, 11:07:45 AM
plainmary123,

Your D level is extremely low and needs correction. It should be above 35 with a goal of at least 50. Each person is different and skin tone is a factor, as light skinned people can correct D lower than dark skinned people. Being Italian, I fit into the dark skinned category and my D has been slow to rise. Once I did get above 35, I found I needed 5000-10,000 IU vitamin D daily to maintain my level. I take it in an easy to use liquid form.

There are 4 alpha globin genes. If one is deleted, it is silent trait. When two genes are deleted, it is called trait or carrier status. Both are considered to be thal minor.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on April 04, 2015, 12:42:41 PM
And here is another study about relieving some of the symptoms of thal minor. Ask yourself this question. If thal minor has no symptoms, why are they researching how to alleviate the symptoms?
Folate and carntine are both regularly recommended by me for thals.

http://informahealthcare.com/doi/abs/10.3109/08880018.2013.771388

Quote
Determining and Surveying the Role of Carnitine and Folic Acid to Decrease Fatigue in β-Thalassemia Minor Subjects
November 2013, Vol. 30, No. 8 , Pages 742-747 (doi:10.3109/08880018.2013.771388)

Seyed Mohammad Bagher Tabei, Maryam Mazloom, Mahdi Shahriari, Soheila Zareifar, Ali Azimi, Amirhossein Hadaegh, and Mehran Karimi
Department of Medical Genetics, Shiraz University of Medical Sciences, Shiraz, Iran
Hematology Research Center, Shiraz University of Medical Sciences, Shiraz, Iran
Address correspondence to Mehran Karimi, MD, Professor of Pediatric Hematology–Oncology, Hematology Research Center, Nemazee Hospital, Shiraz University of Medical Sciences, Shiraz, Iran. E-mail: karimim@sums.ac.ir; tabeismb@sums.ac.ir

Beta-thalassemia minor (BTM) patients usually experience fatigue, bone pain complaint, and muscle weakness. Carnitine is an essential protein for transportation of long-chain fatty acids to the matrix for beta-oxidation. BTM patients have abnormally low plasma carnitine concentrations, which results in deficient ATP production. Carnitine and folic acid together may have a role in preventing bone pain complaint and fatigue in these patients. The aim of this study is to determine the effect of carnitine and folic acid supplementation in subjects with BTM. Seventy three BTM (mean age 11.06 ± 5.46 years) and 23 healthy controls (mean age 8.48 ± 3.78 years) were enrolled in the study. Fasting blood was drawn to determine baseline free and total carnitine levels, red blood cell folate concentration, and hemoglobin level. BTM were divided into three groups and received different types of supplementation for 3 months: Group 1, 50 mg/kg/day carnitine; Group 2, 50 mg/kg/day carnitine plus 1 mg/day folic acid; and Group 3, 1 mg/day folic acid. Controls did not receive supplementation. Laboratory parameters were again evaluated after 3 months’ supplementation. A detailed quality of life questionnaire was designed to investigate muscle symptoms before and after supplementation. Free and total plasma carnitine concentration and hemoglobin levels in BTM subjects increased significantly after carnitine supplementation (P < .0001). Bone pain complaint and muscle weakness decreased with carnitine. Red blood cell folate level increased after folic acid supplementation. Carnitine and folic acid supplementation resulted in a decrease in bone pain complaint and muscle weakness in cases with β-thalassemia minor.


Title:

Determining and Surveying the Role of Carnitine and Folic Acid to Decrease Fatigue in β-Thalassemia Minor Subjects

Author:

Seyed Mohammad Bagher Tabei, Maryam Mazloom, Mahdi Shahriari, et al

Publication:

PEDIATRIC HEMATOLOGY AND ONCOLOGY

Publisher:

Informa Healthcare

Date:

Nov 1, 2013



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on April 05, 2015, 12:16:15 PM
Hi Andy .. sorry for my late reply
Thanks so much for ur efforts to help others
Happy easter to you & all thalassemia friends
Actually i don't understand because in my analyses it's written that i have an increase in my A2
normal range between 1.5 & 3.2 .. sometimes 3.5 .. & i'm 3.9 .. but i read more & i found normal even 4, i'm so confused
Also my A is less than normal cause normal from 96.8 to 98.5 & i'm 96.1 .. & also i found 96 is a normal starting
Even labs are different so what do you think ??
i searched in all my analyses if i have a vitamin D test .. didn't find but find calcium & ionized calcium .. maybe can help
Calcium 96 mg/l (86  to 100)
ionized calcium 1.03 mmol/l (1.03 to 1.25)
few days ago i ate chick pea , the day after didn't felt good, fatigue .. etc
Today i ate a lens soup & some vegetables & i'm.suffering , feeling very hot/ strong fatigue / can't move from bed/ strong pain in my knees / pain in my articulations, bones & muscles / feeling like can't think, lake of concentration/ sleepy
Don't know but i'm trying to focus on what i ate when i have some symptoms as you said fatigue with no explanation .. can you help.me in this so we can define exaclty what i have to avoid ?
About my immunity system i become weak i was sick & after few days i was sick again, this odd for me, actually i lost my voice several time in last few weeks.
i didn't understand what is methyfolate ??
Thanks so much ..  :happyyes


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on April 10, 2015, 12:48:24 PM
Try avoiding all legumes for a couple weeks. It may be that they are causing a drop in Hb and the best way to confirm that is to stop eating all beans, peas and lentils. If no symptoms after two weeks, try one of those foods again and see if you react.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on April 10, 2015, 02:26:42 PM
Thx Andy
Hopefully soon i can do the dna test


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on May 01, 2015, 12:56:10 AM
Hello Everyone
Little  White that I didn't show up here .
5 months ago I had my gallbladder taken. Due to inflammation etc.. Problems related to thallassemia minor .
Also I got a naturopath doctor to treat my thallassemia and balance my body . We are doing vitamin B, D, also I got an allergy test done I'm doing my best to not eat anything that causes me allergies. But my tiredness and joint pain are back. My naturopath is concern cause it seems to him my brain is starving for more oxygen .So IIts looks to me that our condition limits the amount of oxygen our brains receive causing a series of symptons that are difficult to cope .


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 05, 2015, 09:39:33 PM
That's exactly it, Daniela. I encourage thals to learn deep breathing techniques to maximize their oxygen intake through the lungs. It is also important to to restore nitric oxide levels in the blood. Diet can help (fresh fruits are a good source), and an L-carnitine or L-arginine supplement should be considered.

I read recently about turmeric capsules being used for pain relief. I just started turmeric with black pepper caps a few days ago and have been able to cut down on how much ibuprofen I take for pain I've been having in my hip. It does seem to be helping.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on May 07, 2015, 12:42:33 AM
Hello Andy,
Good to type with you again.
It took me awhile but finally I understood the relationship  between my symptoms and lack of oxygen .
I'll search about breathing techniques .


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Nouna on May 09, 2015, 09:38:26 AM
Hello Andy
almost one month ago i stopped all kind of beans
I feel very well, breathing, pulse, tension, pain in my knee & in my back is very low
I feel healthy, not pale as before, even people arround noticed that
I did a complete blood picture
My hm became 12.5
But still MCV 68.7 (77 to 93)
MCH 22.6 (27 to 32)
RDW % 16.4 (11.6 to 14.5)
I still take cobal f (folic acid + vitamin D) but after seeing the result i didn't take everyday , like two days i take & one day no .. it depends, i mean not regular.. do you have an advise concerning this ?
do u still think it's alfa thalaasemia ??
what is the relation between thalassemia, favism, beans in general ???
thank you


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on May 09, 2015, 11:35:52 AM
The name, Favism comes from fava beans. It has long been observed that exposure to fava beans caused a sudden drop in Hb level in those with HbH disease, alpha thalassemia.

http://thalassemia.com/what-is-thal-alpha.aspx#gsc.tab=0
Quote
Individuals who have Hgb H generally have a persistent stable state of anemia, which may be accentuated by increased hemolysis during viral infections and by exposure to oxidant medications, chemicals and foods such as sulfa drugs, benzene, and fava beans (similar to individuals who have G6PD deficiency). As the red cells mature they loose their ability to withstand oxidant stress and Hgb H precipitates, leading to hemolysis. Therapy for individuals who have Hgb H disease includes folate, avoidance of oxidant drugs and foods, genetic counseling education and frequent medical care.

We have learned through thalpal that many carriers of both alpha and beta thal have discovered sensitivity to various substances, most often exposure to chemical fumes, even household scents like synthetic perfumes and scented laundry products. Some have sensitivity beyond fava beans that includes most beans and legumes. Observation and determination of what substances are the offenders and further avoidance is the best way to manage favism. Be aware of anything inhaled, even second hand cigarette smoke.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Lokkhi maa on June 08, 2015, 02:29:23 AM

Dear Andy,

I am beta thalassemia minor carrier and my husband hb is E.Both of we are always feel tired and if do a little hard work both of we are feel to much tired.My husband have no pain problem but always I feel pain in my leg muscles.It was highly increased  when I was pregnant.If I move from 1st floor to 2nd floor then also I feel tired and feeling pain in leg muscles.What do you think?

Please note as I am a job holder I have to stay in sit for 12 hrs in office.There is no movement opportunity in my office.No walk, no movement..... :dunno

Always my mother said to me as I am healthy and no exercise,no movement for that the pain occurs..My husband advice me to take folic acid but after my babies born I have not taking folic acid.....Please advice for us....



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Manal on June 09, 2015, 02:24:47 AM
Hi Lokkhi maa
have you ever checked your body minerals like magnesium, sodium,  potassium and calcium as their deficiency can cause fatigue, cramps and pain. Also defiency to vitamin D can contribute to fatigue  and muscles pain


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Lokkhi maa on June 10, 2015, 10:03:31 PM

Thanks Manal...I will follow  :smiley



Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: chalkydri77 on July 23, 2015, 04:23:17 PM
Hi. Im new here and i am so glad to see this topic. I have been seen by so many doctors but not many seem to view thalassemia as what it is even though I've been diagnosed twice with it smh. Most have tried to convince me that its just a little anemia and that my symptoms are just my opinion.
But every time i was told to google it, my diagnosis was still true.

I've seen hemotologists who have said they are well versed in thalassemia but ...smh i basically get prescribed huge high dose iron pills which one did tell me will harm me more than help. Can anyone please  let me know if you know of any doctors in Mississippi who specailize in thalassemia? Or close to mississippi?


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 02, 2015, 12:39:52 AM
Hey guys !!!!!!
Check it out this study made in 2013!!!!
 http://informahealthcare.com/doi/abs/10.3109/08880018.2013.771388 :wink


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 02, 2015, 02:25:08 AM
Another study 1975 by AB reign . Learning difficulty for children thalassemia carriers!!!
http://www.ncbi.nlm.nih.gov/pubmed/1206388


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on August 02, 2015, 10:12:36 AM
For those who can't get to the link, I had posted this article in its entirety previously in this thread. Just scroll up to April 4, 2015 and you can see the article and my comment.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: sofear on August 02, 2015, 10:33:57 AM
That post seems to include the same excerpt the link leads us to. Should there not be six pages? ("Pages 742-747")


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 02, 2015, 08:38:59 PM
One  of the links is about learning disability I hope this goes to the full text from A.B. Reign article from 1975

http://www.tandfonline.com/doi/abs/10.1080/00221325.1975.10533959?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: sofear on August 03, 2015, 02:09:41 PM
I does not. I'm not sure how you think it would. You simply have to click on the link to confirm whether it leads us to a full text or not.  :scared

We now basically have the same articles in a ton of topics and we can't even read them, lol.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on August 03, 2015, 06:29:32 PM
Sofear,

That is typical of online articles. We often see just the abstract or a preview. If you want more, it usually involves buying articles or subscriptions. The abstracts generally show the results and conclusions, which is quite pertinent information.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 06, 2015, 03:33:47 PM
I'm sorry sofear
I'm able to see the articles when in a class I'm doing on library research ,but while logged  on class I wasn't able to print it to share it ,I will try to do it as soon as possible ,but I still behind on my chores and joggling work school plus being a mon ,wife and having to deal with symptoms righ now.( doc visits)  so bear with me a little I sure want a copy of everything I found out and I will cause I want my doctors to know it too.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Kav79 on September 08, 2015, 01:40:07 AM
Dear all,

It's such a relief to read that others with Thal minor also report the same symptoms. I am 35 years, have two children and just this year was told that I am Thal minor. But yes all seem to say it's assymptomatic and don't reccomend any supplements. But I have severely bad memory and am easily fatigued. My levels for folic acid b12, iron etc are all fine. So the doctor reccomenda nothing. Does that mean this is me at max capacity. That is awfully daunting. I am often yelled at my friends and family for forgetting simple things. I have become very good at writing everything down but that's just not a way of living. I'm tired easily and get breathless easily. Don't get me wrong I'm active. I exercise three times a week. I'm currently training for running a 10k and I'm worried I won't be able to do it. I just completed my second masters in public health and work for the World Health Organization. But at times ( often) I get tired and cannot concentrate.

What can help? Should I take folic acid supplements eventhough my levels are ok?

Thank you for your help!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: lighthumor on September 23, 2015, 11:09:02 PM
Kav79,

Good luck on your running!  I'm a minor and I've done a couple full marathons and a dozen half marathons as well.  It can be done, I just think maybe it takes us a little more time and training than the average person :)  I too am scheduled for a 10K (mine's in a couple weeks).  You'll be fine :) Just have fun!  Also, make sure you focus on your pace... and when the race starts, stay on your pace.  If you go out too fast in the beginning it could backfire later in the race.  Best of luck! :biggrin


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: n on March 28, 2016, 05:36:58 PM
I've gathered a few of the articles mentioned here, and more. It is important for everyone to have access to this information.

Asthma and Allergic Rhinitis in Patients With BTM
https://mega.nz/#!AAIREaKb!I0g3ykzW74SZjuweB0uuXDUTaaGqZUOHJ_Qw9V93yk0 (https://mega.nz/#!AAIREaKb!I0g3ykzW74SZjuweB0uuXDUTaaGqZUOHJ_Qw9V93yk0)

Cognitive Dysfunction in BTM
https://mega.nz/#!EFhmVKKR!xWARe7pGpTVN6vdiLzXkwitXga4USIx70K4jlR3bCn4 (https://mega.nz/#!EFhmVKKR!xWARe7pGpTVN6vdiLzXkwitXga4USIx70K4jlR3bCn4)

Depression in Subjects With BTM
https://mega.nz/#!ZJBBDYQL!DbYyuQYTDZxSGzOSLyVAcUx5vACujqyrSB3q92PPjDs (https://mega.nz/#!ZJBBDYQL!DbYyuQYTDZxSGzOSLyVAcUx5vACujqyrSB3q92PPjDs)

Determining the Role of Carnitine and Folic Acid to Decrease Fatigue in BTM Subjects
https://mega.nz/#!9VpjiQrT!_qVOxG_Sp2XkFIQfGdJYwal8g-Jl_EnZsmx3II8HQlU (https://mega.nz/#!9VpjiQrT!_qVOxG_Sp2XkFIQfGdJYwal8g-Jl_EnZsmx3II8HQlU)

Is the Beta Thalassemia Trait of Clinical Importance?
https://mega.nz/#!EY5GlCoB!TgIFdQow4bgF96dUTkKkRSChsX_4VpCn56O083EaR7c (https://mega.nz/#!EY5GlCoB!TgIFdQow4bgF96dUTkKkRSChsX_4VpCn56O083EaR7c)

Prevalence of Metabolic Syndrome in Patients With BTM and its Related Factors
https://mega.nz/#!wMg3iZiJ!W0YUV-jAf0dNp7OGn3GzI36jbj6LEdOied4mTSw0a0w (https://mega.nz/#!wMg3iZiJ!W0YUV-jAf0dNp7OGn3GzI36jbj6LEdOied4mTSw0a0w)

These aren't all of them, but they are the ones I think people would be most interested in.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on March 28, 2016, 09:30:20 PM
Together, these articles do give patients something to back themselves up with when they talk to doctors. The information is also useful to patients who are trying to help themselves. All pertinent information.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 29, 2016, 04:05:16 PM
More articles about minors having symptoms.
Blackburn, C. (1953) On the clinical detection of enlargement of the spleen. Australasian Annals of Medicine, 2, 78–80. Karimi, M., Bagheri, M.H., Tahmtan, M., Shakibafard, A. & Rashid, M. (2007) Prevalence of hepatosplenomegaly in beta thalassemia minor subjects in Iran. European Journal of Radiology, doi: 10.1016/j.e jrad.2007.09.027 Premawardhena, A., Arambepola, M., Katugaha, N. & Weatherall, D.J. (2008) Is the beta thalassaemia trait of clinical importance? British Journal of Haematology, 141, 407–410.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Danny.H on August 29, 2016, 04:11:27 PM
Tassiopoulos, T., Rombos, Y., Konstantopoulos, K., Revenas, K., Tassiopoulos, S. & Aessopos, A. (1995) Spleen size in beta-thalassemia heterozygotes. Haematologia (Budapest), 26, 205–209. Weatherall, D.J. & Clegg, J.B. (2001) The Thalassaemia Syndromes. Blackwell Science, Oxford.

I'm sorry I can pass along just the references but there is a clause against copyingland pasting  the information  on sites so if somebody search those articles on databases I'm sure you are going to be able to find.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Tiffany093 on April 09, 2017, 07:49:53 AM
How do you combat the symptoms for Thal Minors? My 6 yo son was diagnosed with it, but he has some symptoms of the more severe cases (fatigue, headaches, irritability, pale skin, susceptibility to illness). The nurses at his pediatrician's office don't seem to know much and I'm hoping to avoid paying to see the doctor for a consultation when he might not know much either. I'm looking for any ways to help my baby boy feel better and have a more enjoyable childhood. He takes a daily vitamin, but I'm ok with him having additional supplements if necessary. Any advice or tips are welcomed!


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on April 13, 2017, 06:09:52 PM
A daily vitamin usually has insufficient amounts to do enough good. I have compiled suggestions at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
These are adult doses, so adjust for the child's age and weight, usually 1/4 to 1/2 of the adult dose. Most important are components of red blood cells, like folate and B vitamins and antioxidants, especially natural vitamin E. Avoid any supplement containing iron, unless iron deficiency is also present, as indicated by a full iron panel of tests.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jsbhavsar on October 13, 2017, 06:50:50 AM
In my very detailed evaluation with a Hematologist and Cardiologist together on 28th September, nothing much came out.

Reticulocyte count 7
Hb 9.9
HbF 6.3%
Hb A2 5.8%
MCV 60
Platelet count 319
WBC 11900
RBC 5.89

HEMATOLOGY REMARKS: THALASSEMIA INTERMEDIA

CARDIOLOGY REMARKS: 2D ECHO is Normal, repeat every 3 years.


Hematologist is of an opinion that all symptoms I explained in 45 minutes are of beta thal intermedia. Clinically and pathologically the case is Intermedia. Yet, the Hematologist recommended we should not start Hydroxyurea tablets for now.

The recommendation for next 1 year:
Daily Folic Acid 5mg lifelong
Monthly B12 shot as the case maybe
D3 supplement as the case maybe
Thyroxine as suggested by Endocrinologist

Repeat consultation after 1 year to reevaluate hematology parameters.

Chest pain (angina or myalgia type pain) in chest bones below throat till esophagus
At times hard breathing continues even now
Discomfort on left side due to spleen
Poor blood circulation in body, worst than last 4 months
Low energy levels after 5pm, these 10-12 days have been the worst
My Palms look more palish white than 4 months back


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: Andy Battaglia on October 14, 2017, 01:41:38 PM
I think most of the symptoms listed at the bottom of your post are related to the low oxygen that comes with low Hb and to the high turnover of RBC's which enlarge the spleen.


Title: Re: Study Finds Thal Minors do Have Symptoms
Post by: jsbhavsar on October 16, 2017, 03:33:24 AM
Lets see how the current homeopathy medicines work:
i) Arsenic Album 30c dilution 7 drops in water twice daily
ii) Crotalus Horr 30c dilution 7 drops in water twice daily
Above two are considered medicines for hemolytic anemia. Materia medica / repertory does not have thalassemia specific medicines.

iii) Reckeweg R7 combo 10-12 drops in water twice daily
for liver, gall bladder etc

iv) NL-4 gall b tone drops 10-12 drops in water twice daily

v) SBL Acidum Uric 30c 8-10 drops in water twice daily



My Next selection will be:

1) Arsenic Album 30c dilution
2) Nux Vomica 30c dilution
3) Ceanothus Americanus Q mother tincture
4) SBL Acidum uric 30c dilution

Will keep you posted.