Graves‘ disease and now hypo

[Ink22]

Hello,

I’m new to this forum and very happy I found it 😊

I’m a 39 year old female, diagnosed with Graves’ last December. I’ve been on Thyrozol since then. I changed my diet and went gluten and dairy free from the start which I think helped a lot, maybe too much, because now I’m hypo. My TSH went from 0,006 to 20 within a month.. I’m feeling ok, just not really full of energy and sometimes a bit nervous.

Tomorrow I’m gonna see my endo, which I don’t really trust, but I will move to another country in 2 months where I can find more alternative doctors and treatments. I really believe and experienced myself that changing diet and taking care of some vitamin levels have improved my conditions a lot.

I read somewhere that the Trab levels can show if someone is on their way to remission. Is that the case?

Because I thought that maybe the fast improvement of TSH shows that I responded very well to the Thyrozol treatment and the diet changes.

So now I’m actually over medicated, as I’m still on 5 mg Thyrozol, which I think I should stop. Would you say I should also check my Trab again?

Thank you!

[greygoose]

What was your TRAB the first time it was tested? Going from a TSH of 0.006 to 20 on such a small dose of anti-thyroid medication would make me wonder if I ever had Grave's in the first place. Doctors often make mistakes about this.

TRAB is for diagnosing Grave's, I don't know about indicating remission. But, I would be more inclined to get my TPO antibodies tested, to see if I had Hashi's rather than Grave's.

[Ink22 in reply to greygoose]

Thank you for your reply 😊

TRAB was by 3,2 ( range till 1,75)

TPO antibodies >1000 ( range 0-35)

Sorry I didn’t explained the dosage of Thyrozol: end of February I changed the dosage from 30 mg daily to 20 mg, my TSH then was by 0,006.

End of March my TSH was by 20.

So the doctor said to stop Thyrozol for 1 week, then to continue with 5 mg daily.

The last blood results from this week shows TSH now by 21,5.

[greygoose in reply to Ink22]

OK, so you do have Hashi's, as well, it seems. And, now, you're very hypo. Hopefully, the endo will take you off Thyrozol tomorrow.

It might be a good idea to get your TRAB retested, if you can, see what it's doing. But, I don't know if endos use that as indication of remission.

Let us know how you get on.

[Ink22 in reply to greygoose]

Oh please no, don’t need no hashimoto too!

I thought the TPO antibodies are found in both autoimmune cases( Graves and Hashimoto), but with high TRAB it’s the confirmation for Graves’??? Is there another test which confirms only Hashimoto??

The endo said it’s rare but yeah that’s it, now I’m hypo, but I still have Graves’ . I don’t know if she just can’t admit that I was over medicated..

Took me now off Thyrozol, will repeat blood tests end of Mai, including TRAB..

[Greekchick]

Hello there,

Just my two cents here - both antibody tests can indicate Graves and Hashimotos in different percentages - there are medical reference articles about this- the Mayo Clinic and Endocrine Web have links to these antibody tests and what they measure - so do not assume you have both diseases just yet and wait for more definitive results - it’s too early for you to worry.

The medication you are on, if you are on too high a dosage, might make you hypo as it is designed to slow the production of thyroxine.

Before my TT 11 weeks ago, I was on half the normal dosage of Tapazole for hyperthyroidism and Graves, and I was controlled on that small dose for 2 years before I became resistant to it. Everybody is different. It may be that a dose adjustment is indicated.

I always recommend consulting with your physician - and if he/she is unresponsive or not helpful , try to get referred to another one (I know that’s not always easy, but worth they effort). I have been lucky that I have a good endo - but I know others on this forum have not had that experience, for which I feel sad. Also, I am in Canada, and our treatment options are different here , so I also do not wish to generalize. I am aware of how difficult it is in the UK based on what I have read on this forum.

I do think, however, it is worth discussing with your MD about a change in dose upward to see if that brings you back in line.

I wish you all the best and sending you positive thoughts today!

[Greekchick]

Forgot to add - you may want to ask for another thyroid uptake test to see how your thyroid is actually functioning and not rely just on the bloodwork. That would also give you a more definitive answer. All the best.

[Ink22 in reply to Greekchick]

Thank you for your insights 😊

I will look up on the tests at Mayo as you mentioned. Right now I agree with my endo here to stop taking Thyrozol and see how I react. I’m currently in Eastern Europe where it is really hard to find a trustworthy doctor. In about 2 months I’m moving back to Germany where I have more options.

Thank you for your good wishes, wish you also all the best!!