I was born with the type of thalassemia b minor that is such that two hematologists in the US, where I had lived up to 15 years ago, both advised me to take folic acid 5mg a day supplement. I've taken this amount of folic acid all of my life since that point many years ago.
I was also on 200 mcg of thyroxine. Here in the UK, several GP's at this large Hammersmith surgery told me I don't need to take this folic acid and decreased my dosage of thyroxine to 125 mcg of thyroxine.
As I said in an earlier post, I've found since then that my cholesterol level went up to the high range (5.8) and was advised to take statins. It had always been normal up to this point where they decreased my thyroxine.
So, I did my own research and found out that people with the type of thalassemia that I have usually have significant lower cholesterol levels and some heart protection from this kind of disease.
When I was told it was not necessary to take the folic acid by these GP's they also told me "they had never heard about giving folic acid to treat thalassemia b minor".
Well... hello? .... errr... sigh... A little research will find that this is considered a high standard of preventive care in the type of thal minor that I have.
And now I find out that because I don't carry and metabolise iron due to the thal I've got, this has an influence in the hypothyroidism I've got, it affects the conversion, I believe from what I've read, of T4 to T3. It also affects the amount of oxygen my cells carry as well as the ATP activity that cells need for energy. It is also quite common that people with thal also have hypothyroidism.
I'm putting this out here for others, who might also have this kind of situation.
I'm much happier now with the increased dosage of thyroxine that I told my doctor I want to take to see if it can reduce the cholesterol that increased since these geniuses (GP's) reduced it. So I'm taking 150 mcg a day of thyroxine.
When I have my tests coming up in about 4 weeks, I need to have my cholesterol down and hope it will be. I hope my TSH isn't too low and I expect to have a fight to have the ideal situation I used to have with my health and feeling of well-being before they stuck their two cents in changed everything on me.
I had to fight like a cat to get them to lay off trying to take away my folic acid. Who ever heard of such a thing? GP's over here in England, knowing nothing about blood conditions the way senior hematologists do, telling me to stop taking something I've taken all my life? And then advising me to take iron supplementation, which causes iron overload and even severe damage in people with the condition I've got.
And reducing my thyroxine to the level where the TSH was high normal and the T4 was low normal, and then telling me to take statins.. OMG.. unbelievable..
Taking someone who is fine on a stronger dose of thyroxine, never too subclinical if at all and turning them into a patient on a merry go round of never ending problems....
And the fight I had to go through about the folic acid, I can only imagine the fight I'm going to face going forward to keep my thyroxine at the level it is now and I bet my TSH is going to not come in too low, but a lot lower than it was at high normal, where these GP's thought everything is fine and dandy...
I wish, I really wish, we could get some GP's to be on this board to take in what I'm saying as well as the other posts and help contribute to understanding now only our thinking but also to help us understand their thinking..