Hi. I’ve had Graves’ disease and Toxic Multinodular Goiter for ten years and have been on both Methimazole and PTU at different points of time. I’ve been through five different endocrinologist and the last one I had is starting to push me to get off my meds to see if I can establish remission or get a thyroidectomy. She once said it was so I wouldn’t have to do annual thyroid ultrasounds and see her so often. My liver enzymes also were recently slightly elevated but back to normal now.
In general, I’ve always had a mild case so much so that one endo said I don’t need to be on anything. But I feel horrible even when TSH is in the “normal” range. I feel best when my TSH is around 1. Anyway, I’m only on a daily dose of 1/8 of a 5mg tab. I am in the states so not sure if the dosage makes sense but it’s a very low dose. My recent lab however was 2.1 TSH and the other ranges were normal. This is high for me so I went down to reducing my meds per my doctors orders to five days a week instead of seven but have been feeling horrible: weak and brain fog when I don’t eat enough, super tired and not wanting to do anything. Whenever I taper off I feel bad so wondering if that’s why I feel so horrible.
I have to say when I was pregnant I felt the best in my life. I had normal nausea and all the bad pregnancy symptoms but not everything else. I also could completely get off my medication and my levels were normal. That is until I gave birth and my TSH went to 0.
Anyway just wondering if these side effects will go away eventually when I body gets used to me taking less medicine a week.
Thank you and sorry this was so long!
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Beefull8
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Although Graves’ disease has the potential to go into remission the over producing nodules with Toxic Multinodular Goiter will not resolve.
Was Graves confirmed with TSI & or Trab positive antibodies?
Was toxic nodules confirmed with nuclear uptake scan? as an ultra sound scans are not able to determine function.
So it’s likely without treatment you’ll become hyper.
Specialist don’t like monitoring patients long term on antithyroid. They view hypothyroid easier to manage. There are risks with antithyroid but they tend to be over emphasised in favour of permanent treatments.
Most feel well with TSH around 1 & this is where a healthy TSH tends to lie, but it’s the FT4 & FT3 which are important & cause symptoms.
Doctors are TSH focused but it’s unreliable. It’s not a thyroid home, the TSH purpose is to signal the thyroid to increase or decrease function. Once the thyroid begins to function abnormally and medications are introduced it is not a reliable measure.
If your TSH has risen it usually means your FT4 & FT3 have dropped. So decreasing your antithyroid should allow your levels to rise to what your normal is.
Most feel well FT4 & FT3 in top 3rd of range.
In UK lowest carbimazole (pro drug to methimazole) is also a 5mg. I would have trouble splitting such tiny pills & you would be having a dose of 0.625.
The other option it to work up to skipping a days dose every 3rd day - rather than a weekend gap.
Do you have FT4 & FT3 result (and ranges)
Also important to test folate, ferritin, B12 & vitamin D.
Thank you for your thoughtful answer and feedback! I had a nuclear uptake scan plus TSI which was super high when it was first checked. This is my recent lab:
Anti-TPO microsomal 15 IU/mL ref range <34
TSH w/reflex to Free T4 2.06 uIU/mL ref range 0.27-4.20
TSH “w/reflex to Free T4” - is instructions to test TSH - and *only* test FT4 is out of range.
TSH can unreflective of ft4 & ft3, TSH is inadequate information, can you look at options such as a direct private lab to test TSH, FT4 & FT3 together & key nutrients. Antibodies don’t need as frequent testing.
Usually it’s recommended when doses are adjusted it’s tested 6 weeks later to see how an adjustments settles. Changing doses & tested quicker can be counter productive.
TSI & Trab fallen & no longer showing positive which is a sign Graves is in remission.
Uptake scan are used to diagnose cause of hyper, which is by the distinct pattern visible on image with toxic nodules showing patchy uptake but Graves showing entire thyroid with dense uptake.
Since you are Stateside you might find the Elaine Moore Graves Disease Foundation website a useful adjunct - elaine-moore.com
If only to ask on Elaine's forum for a recommended endocrinologist/specialist in Graves and thyroid disorders within your zip code / time zone :
Of all the research I undertook I believe Elaine's website to be the most well rounded of all and covers all aspects of this poorly understood and badly treated auto immune disease.
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