Old Graves victim , new to this site. Advise needed!

Hi , I am thyroidless due to Graves, op 1999, rendered hypothyroid and been treated with 150mcg and 125mcg alternative days. I feel very stupid as ive only just linked the migraines ive suffered since 3 months after my op with thyroxine. I have managed of sorts on T4 but energy levels fluctuate all the time, have red spots on the lower third of both legs which come and go, dry hair , depression and recently developed acne. Oh and I have found I can only function when I take prozac along with T4. Never had any vitamin tests or T3. Do you think the migraines may be helped by using different meds? Thanks for listening! Wish id found this site years ago.

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  • I suggest getting tested so you have something to work from. T3, t4 and tsh. Nhs wont do t3 but you can get it done yourself. On synthetic t4 i felt worse than when unmedicated. All my problems started with that poison. Now on ndt and much better. It may be what you need. You also need good iron and b12 levels for thyroid function.

  • Thanks, can you get b12 and iron tested on NHS?

  • Thanks Blue daffodil , I have arranged a private endo but not sure what tests they will do. Can you get b12 and iron tested on NHS?

  • Your GP may well do a full thyroid check for you. Mine tested free T3 at my request two years ago and as I am now taking some T3 in my NDT they check it all. If yours turns out to be low, which may be the cause of your migraines, ask for T3 to be added to T4. They will need to refer you to an endo but do some research first to find out who will prescribe T3, before going. Alternatively buy your own NDT which is better for TT patients. Can pm you if you need a place to buy.

  • Thanks Hennerton, I will definitely be asking my gp. It will be very interesting to see what my t3 level is. I tried gluten free for a few months last year and felt a lot better but soo difficult to stick to especially when I have a passion for cakes. Just been reading on another site that gluten can interfere with t4 , t3 conversion. Ridiculous really that we have to do all the research ourselves. I would love to order all the tests privately but it seems very expensive! !

  • Graves Disease takes a massive toll on the body along with vitamins and minerals this is then compounded by surgury and becoming hypothyroid

    If you are properly tested i am very sure you will find very low levels of

    Ferritin

    Folate

    B12

    Vit D3

    Calcium

    Magnesium

    Vit B

    Vit C

    Zinc

    All of these contribute to a body unable to cope especially with synthetic meds like Thyroxine

    Many thyroid patients are also chemically sensitive and cannot tolerate minute traces of chemicals or the fumes from things like paint,turps,methylated spirits etc

    Add on the removal of the thyroid which used to produce T1 T2 T3 T4 and Calcitonin and you have a situation that thyroxine /T4 simply cannot replace

    Additionally there was a research paper done in Sweden many years ago which found that Graves patients bodies are sensitised to such high levels of thyroid hormones they can never again function on "normal doses or levels" hence cannot be managed on TSH or thyroid blood tests but must be treated on symptoms

    The only answer as my husband has found and is proof of is :-

    Correct the vitamin deficiences restore ferritin and folate back to midway in their ranges ( NHS response of in range is simply not enough )

    and take Natural Dessicated Thyroid instead of Thyroxine or T3

    The very last thing needed is prozac or antidepressants they simply make matters worse

  • Thanks for your help. This is all very interesting and im well impressed with your knowledge. Im assuming your husband had a thyroidectomy too, is he back to full health on dessicated thyroxine? Im seeing an endo privately tomorrow and just praying he will recognise the need to check my nutrition as well as t3, fingers crossed im not wasting my hard earned cash. I cannot find an endo in Glasgow that has a particular interest in thyroid probs so its pot luck ! Ill post tomorrow night with an update of how the consultation goes.

    Many thanks everyone for your support. X

  • Apologies for the delay, but if anyone is still out there and interested my private endo consultation went ok. I am going for lots of bloods next week to get a starting point and endo is happy to prescribe me t3 if required although did point out that he could not under any circumstances authorise NDT as it is unlicensed, interestingly, he didadd that a few of his patients are taking NDT and swear by it.. At least ive started the ball rolling to hopefully a better quality of life, just need to wait for the bloods. Im going to keep eating some gluten so the tests are not scewed. Any advise on whether to take my t4 before or after the blood test?

    Thanks. S.

  • Glad it went well , I am a Graves patient too.No exppert but everything I have read on here says take T4 after blood test, good luck

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