Does anyone know the long-term effects of minor?

Now that I've entered middle age, and my dad (from whom I inherited this disease) is in his late 70s, I'm beginning to wonder what the long-term effects of this disease are.  Is it damaging my heart?  Weakening my liver?  Am I more susceptible to strokes or heart attacks than other "normal" people?  I haven't been able to find any information on this.  There's only ever information on thal-major.

When I asked my GP, he just told me that by my age, my body has "adjusted" to the disease and I should have little effects, if any.

Hi Kathy,

Many thalassemia minors report no symptoms, but from the hundreds of minors who have joined this group, we also have to conclude that many minors do have symptoms. The severity of the symptoms seems to be related to how low the long term hemoglobin level is. The long term effects of low hemoglobin and the resulting hypoxia (low oxygen) have never been studied, as most doctors and researchers have believed that there are no symptoms in thal minor. I feel that this is a direct result of doctors not compiling the information given to them by patients, and also just outright rejection of the idea that any symptoms a person may have are related to being a minor. We know that this thinking is not valid because so many minors have come to this group with very similar stories and sets of symptoms.

With that said and based on these many posts and talks with minors and an understanding of what to expect in more serious thalassemia conditions, I will say what I suspect the long term effects of thal minor are. First, thal minor does seem to have a positive effect on the heart in terms of protection against heart disease. This has been noted in studies, so not everything about it is a negative. However, long term oxygen deficiency can lead to pulmonary hypertension (PHT or PAH) which is high blood pressure in the artery between the heart and lungs. This is not related to your regular blood pressure. With the long term lack of oxygen comes a reduction in the amount of nitric oxide (NO) found in the artery and the heart. This causes a loss of flexibility of the artery and a reduction in its effectiveness in moving blood to the heart. PHT is common in non-transfused thalassemia intermedias and I suspect that mild PHT is common in thal minors, but this has never been studied. Even mild PHT can cause problems, so prevention should be a goal. The supplement, L-carnitine helps to fix NO in the body, so it is often recommended to thals and I think thal minors can also benefit from its use. I would also highly recommend natural vitamin E. Many minors report problems that are related to poor circulation, and again this may be a result of mild PHT, as the veins and arteries lose flexibility, thereby impairing circulation. I don't think liver damage is a concern unless you have had long periods of iron overload, which can happen with long term iron supplementation and excess iron absorption from the diet, with the latter being related to Hb level. The lower the Hb, the more likely that excess iron absorption from diet will occur.

That is interesting.  My dad, who is 76 years old and has thal minor, was recently told he has the heart of a 20 year-old man.  Given his poor eating and exercise habits, we are all quite surprised at this, but what you are saying explains why. 

Thanks for the advice on nitrous oxide.  I'll have to read up on that.

Nitric oxide. Nitrous is not the same thing.

Long-term effect would be also vitamin exhaustion to the levels that low that it might be harmful. Your demand for some vitamins is higher than recommended daily allowance, so in the long term you will finally get there - you will be deficient. What are the consequences of such deficiences (often so-called sub-clinical, where I would define it as a deficiency that the body can deal with it, but it has to re-utilize and use the deficient compound very sparingly), it is still unknown, but rather not good.
What are the consequences of being tired all the time (as thals experience it)? Rather not good.
I have for example blood iron out of normal range (2-3 times out of range) and what are the consequences of this? Unknown.

But on the bright side: if you know that thalassemia minor has symptoms, then it should be treated, and you will be able to avoid many of these pretty, pretty, pretty bad consequences. Better yet - your health status will be better than this of normal person who does not care about health and may have deficiences for no good reason. Many "healthy" people have vitamin D, B12 deficiency, magnesium deficiency, microelements deficiency, etc.

Andy,

I have often wondered if a long term affect of thalassemia minor can result in myocardial fibrillation.  If so, I wonder if taking supplements can protect against this condition.

Sharmin

Darn, I was just reading that L-carnitine can't be sold as a health product in Canada, and can't be imported.  And I live in Canada.  Any suggestions on what I should do to get this supplement, short of living on a diet of red meat?

Any suggestions on what I should do to get this supplement, short of living on a diet of red meat?

One thing is for sure - you should not turn to meat, as it is not the healthiest food ever, rather just the opposite.

If it's any consolation for you - similar nonsense happens in my country even more frequently than in Canada - you can be sure of that.

And what I did when I faced a similar problem?
I tricked my doctor into prescribing the drug. He didn't mind, because there was no refund for this drug anyway.

Another option is just driving to the US and buying it there. But you'd probably have to do it by yourself, as probably nobody would risk being fined or something... What is the penalty anyway?

Sharmin,

I cant speculate on whether minors would be more likely to have a sudden, fatal heart event, but it seems far less likely than it does in major and intermedia. I do think all thals from minor to major can benefit from a heart health supplement program that includes calcium and magnesium, and vitamins D & E. This will help regulate heart function. L-carntine plays an important role in maintaining NO levels, which helps maintain elasticity of the blood vessels, and should also be part of the program.

Kathy,

L-carntine has become a victim by association in some countries because bodybuilders use it along with steroids to build muscle mass. It's a foolish policy that deprives people of an important nutrient that is already found in the body. If you can get it from the US, do so. Otherwise you must get a prescription and deal with the outrageous cost in Canada.