Graves Disease but Hypo TSH question

[Kev2867]

Hello,

I am in the USA. I have had Graves Disease (hyper) since 2017. I control it with Methimazole 5mg. I pop a pill in the morning. They wanted to radiate it back then but I said "no I will pass thanks".

Anyway I feel pretty good symptom wise and just float along working etc. I am 59 years old. My body has always been very sensitive to dosage changes so I track it very carefully. I had 2 endocrinologists. My T4 has been very very slightly below low range for about a year. No big.. The T3 is perfect for about a year. Dead center range. The weird thing is my TSH. It has been going up lately into Hypo range.

Well past year actually.. but the T4 is constant still. In the past ( and it makes sense) when T4 was slightly hypo then TSH would be slightly hypo. When T4 went up TSH would move down.

This is expected if you think about it (inverse relationship). But now T4 is constant (slightly hypo) , T# is perfect and constant and TSH goes up and then comes down close to the high end of normal and then bounces right back up to high hypo. Any ideas on why two markers are remaining constant and TSH has now gone rogue?

Thanks for your time!

[greygoose]

Perhaps because it takes time for the TSH to react. But if your FT4 is below range, you are more than 'slightly' hypo, you are very hypo. And an FT3 higher in range than the FT4 suggests that your thyroid is failing. So, it's really not surprising that your TSH is rising. The surprising thing is that it hasn't reacted faster.

[asiatic]

As someone who started my Graves journey the same time as you ( you can read my bio ) and who reads everything I can on Graves, I wish I could give you some answers but I can’t. Very little research has been done on people like us and what happens after long term treatment with ATM. We are all on our own personal journey and solving its ups and downs a challenge. My only comment on where you are at the moment would be that your results would suggest you are on the hypo side and that maybe your next step would be to experiment by halving your Methimazole to 2.5 and see what happens

[mary564]

It's understandable that you're concerned about your TSH levels behaving unexpectedly, especially given your history with Graves' disease and your careful monitoring. It's definitely a situation that warrants az-mvdnow.com further investigation with your endocrinologist. While I can't provide medical advice, I can offer some potential explanations and suggest questions to ask your doctor.

[pennyannie]

The TSH is a very unreliable of anything once taking any form of thyroid medication and we must be dosed and monitored on the Free T3 and Free T4 :

Especially with Graves as the antibodies ' weigh heavy ' in the blood stream and push down on the TSH Receptors - which are fine hair like structures - which in turn then push up your thyroid hormone production and why you had this health issue in the first place.

If anything Graves antibodies ' capture ' the TSH - and once your TSH starts responding in the ' normal manner ' it likely means this phase of Graves Disease is coming to an end.

The fact that your TSH is moving and not stuck down tends to mean your Graves antibodies are less than they were, and not as stuck down on the TSH Receptor sites as they were - and the TSH receptor sites recovering their ability to return to their normal function of moving in relation to your T3 and T4 levels.

though as we know. once with Graves, it is for life, with this poorly understood AI disease tending to wax and wane with stress and anxiety known to be common triggers.

You can also be hypothyroid when diagnosed as with Graves and have low - but inverted T3/T4 blood test results - not everybody has the typical hyper type reaction that is commonly written about.

For all things Graves Disease I found Elaine Moore's books and website the most well rounded - I had RAI back in 2005 - when I knew nothing and deeply regret this but my TSH remains 0.01 - if I m to be well - and has never responded in the perceived ' normal ' manner and needs to be ignored as it's use very questionable especially after definitive treatment.

Elaine is Stateside and currently we can only access her research through the archives :

web.archive.org/web/2024122...