Thalassemia b minor and hypothyroidism

[Karen09]

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..

[PinkNinja]

That is outrageous treatment. What makes a GP think he knows more than a senior haematologist?

Personally I would be demanding a return to my previous treatment and a referral to a haematologist before even considering a change. Unfortunately I don't know whether haematologists in the UK would follow the protocol you clearly need but it may be worth a try.

[Karen09 in reply to PinkNinja]

Thanks for your response. To follow up about the folic acid, I raised such hell with my GP about saying that to me that she called a UK hematologist consultant and he called me on the phone. I spoke to him about the type of thal b minor that I have and he conceded that I it should be "alright" for me to continue to take the folic acid.

What burns me up is that these GP's don't seem to understand the connections between the thal, the hypothyroidism and the fact that people with thal b minor generally always have low cholesterol. And they seem to miss that people who are not given enough thyroxine end up getting high cholesterol..

And when you combine the physical effects of energy loss that comes with thal b minor especially under times of stress, with the energy loss and problems that come from not enough thyroxine, it is a double whammy.

What was this GP's advice to me, without thinking it was her lowered dosage of thyroxine that caused this mess I'm in, her first thought was to put me on statins.. Oh yeah, that will cure my problem.. I'll be a walking zombie if I went that route.

Scary that these things probably happen quite often to people who don't think about their own health and trust too much GP's advice when they are in long term treatment situations.

[helvella in reply to Karen09]

Thoughts of thalassaemia, sickle cell, and other disorders that affect critical blood parameters are always in my mind when people post their results. Not that I know anything significant - only that we must be careful not to interpret blood tests blindly.

Hopefully the majority of those who have these disorders actually know and will tell us.

[Karen09 in reply to helvella]

Well, you would be doing more than the GP's I know then..

Thanks for your concern about this and I wish that the GP's gave it a thought with me as well..

[greygoose]

Karen, it's well known that GPs in England (also in France where I am) know little about anything but think they know everything. It's a constant battle for most of us, whatever is wrong with us. They are painfully ignorant. But I'm not sure there's a lot we can do about it, except keep as far away from them as possible!

Hugs, Grey

[MDL990510]

Thanks for your post Karen. I am new here. Not been diagnosed with anything yet as having battles

With gp. I too have beta thalassemia minor. I suspect i either have b12 deficiency or hypothyroidism but according to my dr i'm just low in iron!! The haemo that i was referred to wouldnt even see me. I know they are looking for enlarged RBC with b12d but as you know with thals our rbc are smaller. This doesnt seem to sink in with my dr. Its interesting to learn from you about the thyroid side of things too. I really dont know where to turn next

[Karen09]

Hi

All I can say is read all you can on it and here's a link or 2 I kept:

ncbi.nlm.nih.gov/pubmed/151...

I take 5mg of folic acid a day. It was prescribed to me by hematologists in the US. Here's another link that may help too.

prezi.com/xw3mdcnfbbk8/thal...

Your ATP is reduced when you have T minor and this influences the way your system works also with the thyroid from my previous readings.

Good luck and keep in touch,

Karen

[MDL990510 in reply to Karen09]

Thanks for those links Karen. I have not really done much research into the thyroid side of things as i just took my drs word for it when i was told my results were normal but i think im beginning to learn

otherwise. Also my cholesterol was low too so i thought it wasnt worth pushing the matter. I didnt realise that thals generally have lower cholesterol. They really know nothing in this country about thalassemia do they?

Thanks again Karen, will keep in touch.

Regards Karen

[Karen09 in reply to MDL990510]

I had two GP's at the medical center I go to in Hammersmith, London tell me that I didn't need to take folic acid 5mg a day. I pointed out to them each time that I had thalassemia b minor and two hematologists in the US had told me that taking the folic acid was the best I could do for my condition.

They had never ever even done a blood profile on me and they were telling me this. It takes 17 years to become a hematologist in the US. These GPs didn't even know or recognise what my blood profile looked like and showed when I finally had it done this year because of an operation I had to have that was ordered privately. They were telling me this without even checking my blood profile which shows all the abnormal differences in our blood compared to normal people's readings.

Now, if you go to the West London Thalassemia Clinic which is RIGHT IN THE GROUND FLOOR of this surgery's building, they will tell you of course you have to take folic acid every day!

I mean... it boggles the mind..