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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229165 times)
plainmary123
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« Reply #150 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 !
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Andy Battaglia
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« Reply #151 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.
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Andy

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Andy Battaglia
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« Reply #152 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

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Andy

All we are saying is give thals a chance.
Nouna
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« Reply #153 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 ..  
« Last Edit: April 05, 2015, 12:23:09 PM by Nouna » Logged
Andy Battaglia
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« Reply #154 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.
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Andy

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Nouna
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« Reply #155 on: April 10, 2015, 02:26:42 PM »

Thx Andy
Hopefully soon i can do the dna test
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Danny.H
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« Reply #156 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 .
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Daniela
Andy Battaglia
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« Reply #157 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.
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Andy

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Danny.H
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« Reply #158 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 .
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Daniela
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« Reply #159 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 Huh?
thank you
« Last Edit: May 09, 2015, 09:48:24 AM by Nouna » Logged
Andy Battaglia
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« Reply #160 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.
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Andy

All we are saying is give thals a chance.
Lokkhi maa
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« Reply #161 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.....

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....

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Lokkhi Maa
Manal
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mother of thal intermedia child


« Reply #162 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
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Lokkhi maa
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« Reply #163 on: June 10, 2015, 10:03:31 PM »


Thanks Manal...I will follow 

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Lokkhi Maa
chalkydri77
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« Reply #164 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?
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