thalassemia trait and hypothyrodism

I am exhausted-please can anyone help me.

when I was a young girl I was back forth to hospital for tests for constant immune problems. Childhood illnesses affected immune system. EBV and scarlet Tina.

anyway the hospital diagnosed thalassemia trait. that was it! no one supported me with it about any symptoms or supplements.

I am so ill diagnosed under the blanket of M.E for 17 yrs but been ill since a young girl.

no doctor EVER has said about the issues of thalassemia with the thyroid.

anyone who can help would be very grateful especially those with thalassemia and hypothyroidism

9 Replies

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  • Hello!

    So nice to finally meet someone with thallassemia trait. Every doctor bar one has always told me that having the trait causes no symptoms, but I beg to differ. In a logical mind I don't see how that is even possible. My hemoglobin count is always always low under 100.

    I haven't been diagnosed with any thyroid problems but I do feel it is just a matter of time for me. I have various issues, including low cortisol, b12 injections (for deficiency), low progesterone and I had a hemithyroidectomy 3 years ago due to a benign tumour. I'm just plodding along without treatment for any of it right now.

    I will be really interested to see if there is a link.

    Sorry I can't help but thought I would share my experience so far.

  • hello :)

    thank you for sharing....I found this on thyroid UK...

    "The Broda Barnes Foundation tell us "Dr Barnes found that the primary reason for the inaccuracy of the blood tests for thyroid function is that the thyroid hormones are not utilized in the blood, but are utilized intracellularly. Therefore a patient can have enough thyroid hormones circulating in the blood to give a "normal" reading, but if the hormones are not getting into the cells, the patient will be hypothyroid.

    Also, there is a problem of low blood volume in hypothyroid patients. This means that any blood test value will appear higher than it actually is because the patient has a lower than normal blood volume. In many patients with "normal" or "high" thyroid blood levels, but many clinical symptoms, the patient's blood levels actually drop lower once the patient is given thyroid hormones simply because their blood volume increases".

    so if our blood volume is lower and cells smaller then surely -not really rocket science- that we are going to have issues? its so ridiculous that we are just left to get on with things..

    I would suggest that you treat your body holistically.

    I've had a horrific journey and absolutely fed up with it...

    I am going to email broda barnes foundation and will let you know...

  • I also have thalassemia trait and was told the same thing - it means that you're a carrier and has no impact on health whatsoever. I got a second opinion on this and was told the same thing. My blood cells are smaller than they should be but I was told that this is nothing to worry about. However, should I get married to a man with thalassemia trait, then our children will have thalassemia and that's something to be avoided apparently!!!

  • yes was told that as long as I dont have a baby with another carrier its all fine as baby would have thalessemia or wouldn't survive...presently not well to carry me let alone a baby ;)

    ...however I feel that the blood volume could be the reason I am having blood work saying I am normal range but my hypo symptoms are still very much present. not saying this is the total reason however it could be significant.

    are you hypothyroid?

  • Yes, indeed I am! I take iron supplements but not sure what else to do for blood volume. I don't think that my symptoms can be down to thalassemia trait as they started a few years ago and I've obviously been thalassemia trait since birth! Are your iron levels optimal? Also, breathing exercises are good for getting oxygen into your blood if you're concerned about that?

  • And drink lots of water!

  • hi I dont know if my iron is OK or not? do you know how to read the blood work then? I dont take supplements...My Gp just says my illness is M.E I am so very ill.

    water..yes I do my best...does water help then? should I take iron?

    thank you must rest now...

  • i take supplements but not iron...

  • I've read briefly the replies but just wanted to say please please do not take iron supplements, it can be very dangerous and cause iron overload, I was always warned off taking iron supplements unless they checked the iron reserves (ferritin and folate).

    If you feel you need to take a something then take folic acid as this will increase the quality and quantity of your red blood cell production.

    I have made some dietary changes and it has helped somewhat, I use coconut oil for cooking, also use turmeric whenever I can and eating dates and nuts helps me feel less tired.

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