Study Finds Thal Minors do Have Symptoms

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Offline Zaini

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #60 on: February 21, 2011, 04:37:53 PM »
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.
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Re: Study Finds Thal Minors do Have Symptoms
« Reply #61 on: March 06, 2011, 02:44:40 AM »
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??

Re: Study Finds Thal Minors do Have Symptoms
« Reply #62 on: March 24, 2011, 10:36:29 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

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Offline Zaini

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #63 on: March 25, 2011, 03:24:34 AM »
Thanks for sharing :) .

Zaini.
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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #64 on: March 25, 2011, 06:17:44 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.
Andy

All we are saying is give thals a chance.

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Offline DAMHA

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Re: Study Finds Thal Minors do Have Symptoms(HELP)
« Reply #65 on: May 29, 2011, 07:21:16 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.
LIFE IS SILLY, HOWEVER TAKE IT SERIUOSLY.

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #66 on: May 29, 2011, 07:52:14 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.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #67 on: May 29, 2011, 11:15:12 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?

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Offline Zaini

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #68 on: May 30, 2011, 06:18:36 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.
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Offline DAMHA

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #69 on: May 31, 2011, 09:01:33 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.
LIFE IS SILLY, HOWEVER TAKE IT SERIUOSLY.

Re: Study Finds Thal Minors do Have Symptoms
« Reply #70 on: August 02, 2011, 02:41:55 PM »
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

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #71 on: August 03, 2011, 01:38:00 AM »
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.
Andy

All we are saying is give thals a chance.

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Offline CatherineM

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #72 on: August 26, 2011, 01:07:01 AM »
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

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Offline Slade

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #73 on: September 13, 2011, 11:25:50 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
Hb Lepore variant

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Offline Andy Battaglia

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Re: Study Finds Thal Minors do Have Symptoms
« Reply #74 on: September 14, 2011, 04:22:20 AM »
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.
Andy

All we are saying is give thals a chance.

 

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