Doctors and thalassemia minor

Hello everyone!
Yeah I've been enoying the page really...it's quite a relief to know there are people with thal min. out there who do have symptoms; as I said...I thought I was the crazy one.

Yeah I do have occasional low grade fever throughout a whole day sometimes or just an hour and constant malaise.

About my hb I have no idea where I'm at atm...havent had a CBC in about 2 months because truth be told, I was sick of doctors and feeling somewhat like a burden to everyone here. Doctors tell me it's nothing really, maybe just stress...my mother doesn't seem to be quite eager to hear me complain of whatever ache I have and the rest of my family always think that Im just being dramatic, have a hangover (I only drink wine when I go out for dinner..) and if I faint they say it's probably the hot weather (I live in Colombia)...So based on the lack of support I really just gave up and decided no more doctors unless I REALLY have to go and stop worrying and paying attention to the malaise or fever or..whatever may be the problem.

For the fever and malaise I take ibuprofen or tylenol and I feel just fine afterwards. As I mentioned earlier, I've had a few trips to the hospital and all they can come up with is "high inflammatory response" -but we dont know why.

I would like a doctor like Dr. House...haha

Hi Andy,

I don't think that iron studies were done with my blood test.  My ferritin is 29 and my hg is 11.2.  The doctor told me that she would like to see my ferritin above 40.  I think that I will try to have more iron rich food but I will avoid iron supplements unless of iron studies show that I am iron deficient.  What do you think? 

Thank you,
Sharmin

Sharmin,

You can improve with diet and supplements, other than iron. B-complex, folic acid and magnesium all play a role in building and maintaining red blood cells. Iron is the obvious but it is not the only cause for low hemoglobin levels in thal minors. In addition to iron rich foods, look for foods that also contain these other nutrients. You can overcome iron deficiency without taking supplements if you look for ways to include iron rich foods in your diet. I think it's a lot easier on the stomach if you can get your iron from food.

Thanks Andy, 

I will add iron rich food to my diet.  What dose of B-complex would be good for me I am 47kg (I have noticed enormous benefits in terms of energy in little A since you recommended B-complex for him, now I need to be able to keep up!).   I plan to add 1mg of folic acid to the 1000 mcg in my multivitamin. 

Thanks again Andy,

Sharmin

Hello,

I just got back from an appointment with a GP.  This is after a visit with my Hematologist.  I've got a lot of the symptoms you guys are describing.  My only real concern is my lack of ability to run well.  I had a bought with fatigue for a few months but that is thankfully going away now.

In any event, I'm getting the same story from the Hematologist and the GP.  Can't be Thal Minor.  My issue is that I just want to figure out why my running performance is bad.  It always has been.  My Hg levels are on the low end. (12). 

I started to think about this.  If athletes can positively impact their aerobic ability by training at high altitude to boost their Hg levels, then it seems obvious that low Hg levels would have a negative impact.  Where am I wrong here?

Has anyone ever run this by a sports medicine physician? 

Thanks all,

ML 

You aren't wrong. Hundreds of thal minors who are members of this group agree with you. For some reason, doctors want to lump all minors together, even though their Hb levels vary greatly and so do reported symptoms. Unfortunately, your doctor may only see a few cases of thal minor in his life, so he won't have enough experience to realize that what the text books say about thal minor, is not true for all minors. You are right about the altitude, too. After about 3 weeks at high altitude, your Hb level will rise, and runners and bicyclists both train at high altitudes for this reason. High oxygen level=better performance. So why don't doctors accept that low oxygen=lower performance? The chronically low Hb in many minors does cause problems over time and I suspect that over the years, it can also lead to pulmonary hypertension if the Hb is low enough.

Supplements can help. B-complex, vitamins D & E, folic acid and L-carntine can all help. I'm finding that minors who get serious about supplementing are seeing positive results. I cannot say that any thal minor can do everything physically that they wish, but I do think that all can improve their health by paying special attention to diet and nutrition.

The interesting thing is that I'm not actually looking for them to do anything about it.  I can accept the limitations.  I just want some validation. 

My father has similar issues, as well as other medical issues.  I feel the doctors end up chasing ghosts because the assume his thal symptoms are not from thal.  I think he has visited every office the Mayo clinic has while they try to figure out what is causing his issues.  Did I mention that it can't be thal minor because that is asymptomatic?

Hi  Mlangas ,
  , i hope you wil find this community realy helping, caring and ecnouraging, as it is  ... feel free to ask or share anything you want to share ...i hope you will get a good response and answer of our concerns/questions,  its your own forum so dont hesitate to ask wat ever you wana know about ...

Best Regards
TAke Care
Umair