I was overactive for 6 months, then Endo persuaded me into RAI treatment. This was approx 2years ago went under very quickly and been on Levo ever since.

My question is that at no time was Graves or Hashimoto's mentioned to me.

I assume that because I have no thyroid now ( I assume ) that it's not Graves,so how do I know about Hashi's?

I have never been well on Levo but Endo is the "you are in range, so you should be feeling well".

When asked about alternative to Levo he said there was nothing.

If I had found this site then, I could have fought my corner so to speak!

Incidentally he is on Louise's list of Endos as having prescribed T3, so maybe my face didn't fit :·(

Cheers Mary

10 Replies

  • Mary, You can be hyperthyroid without having Graves autoimmune disease but Graves is usually the reason one becomes hyperthyroid. You can ask your GP or endo whether you were ever tested for Graves antibodies. Graves antibodies don't go away after thyroidectomy or RAI and can go on to to attack other organs especially the eyes. Hashimoto's is more usually associated with hypothyroidism and the antibodies usually go dormant after thyroidectomy or RAI.

  • Thanks Clutter, I will do this.

    Cheers Mary

  • It makes me very angry when Endocrinologists especially, as well as doctors say "you are in range, so you should be feeling well". They condemn their patients to lifelong illhealth because they are treating according to the results on a computer print-out rather than making sure that their patient feels well. That's the main factor - listening and knowing what clinical symptoms consist of. They are very ignorant and are unprofessional by keeping patients unwell. He is also being untruthful about alternatives, although he is following the guidelines of the BTA which again, are inhumane. Vets treat animals better I think. We are individuals and we all take different doses of medication. It's not one size fits all. Maybe he has been told not to prescribe T3 as the BTA isn't keen. Never mind that there have been scientific studies which say that T4/T3 combinations are better for many than T4 alone. Of course, they have to have sufficient to remove their symptoms regardless of where the dot on a piece of paper landed.

    Email louise and let her know that he said there are no alternatives. It is very disappointing for you when you have built up your hopes for at least some T3.

    This is a link of one of our members' experience and no-one is forewarned of what the future holds when your thyroid gland is failing/removed.

  • Thank you for reply.

    I read the link and was really moved at what she had to put up with.

    I simply cannot get my head around the fact that the medical profession are so blinkered that they are prepared to let thousands of people suffer, when it is within their power to help.

    I thank heaven every day for finding this site and the wonderful people who give advice. If only I had found it sooner I would have had the courage to challenge what I was being told.


  • We were all in the dark before being diagnosed. I, like many, didn't know where the thyroid gland is situated and I doubt millions are aware of its function. I definitely know now that neither do those who are supposed to be medically trained in its dysfunction. We now know and understand more because our bodies react when we have an optimum level that makes us feel well, and if that particular one isn't working for us we know there is an alternative even though the guidelines difffer.

    I hope you feel better soon.

  • Thanks shaws.

    I will see what transpires.

    Mary x

  • The original hyper symptoms may have been your thyroid speeding up when being attacked. This can happen with hashimotos and is sort of the thyroidS last gasp before it is overwhelmed.

    If you have no thyroid, hashimotos antibodies seem to dissapear, but Graves' disease stays with you. I would ask for antibody testing, so you at least have some idea if what you can expect.

    You could write to him, explain you feel awful and say you believe liothyrone (t3) may be of some help. It is listed in the British national formulary so is available for home to prescribe.

    Have you had yourvfree t3 tested? If not, get it done... Privately if the docs will not help..... You can deal directly with the lab yourself, price around £100.

    G x

  • Thanks for your reply galathea , I am going to e-mail endo on Monday to ask what I was originally diagnosed with, and if I have anti-bodies now.

    It's strange that each time I have seen him in these last two years he never passes results to my GP unless it is for a change of medication, so the doctor is basic in the dark.

    In June my free T3 was 4.0 range (3·5-6·5) pmol/L)

    Thanks again


  • So. The t3 is the bottom end of the range? Ha..... Plenty of room to let you have some Liothyronine, Or at any rate more levothyroxine.... It doesn't matter too much if tour free t4 goes over range, and more levo might convert into the t3 your body needs. Selenium might help with converting t4 you do have, into t3 . (200 mg per day. - 1 tablet)

    G x

  • Good tip on the selenium Galathea, I will get some soonest.

    Cheers Mary


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