Should I have just stopped my methimizole because I was heading to hypO? 6-7 weeks ago very hyper thyroid my last test showed going hypo

[lisbriamy]

Dr had me stop my methimizole for 2 weeks and then retest because my test show me going hypo. Been off for about 6 days and feel very hyper again. Should I just start my medicine back until I can talk to dr? Do not want to go back into Afib!

[helvella Administrator Thyroid UK]

There are two standard approaches to using methimazole (or carbimazole).

First, take a high dose until the thyroid hormone levels drop. Then reduce the dose hopefully finding where you are taking just enough to keep thyroid hormone levels acceptable.

Second, take a high dose until the thyroid hormone levels drop. Then take levothyroxine as well and adjust dose of the levothyroxine so that thyroid hormone levels are acceptable.

Stopping for two weeks is way out of order and very non-standard. It will simply allow you to become hyperthyroid again. Does your doctor know what he is doing?

[purple64]

I thought the same as Helvella. I would have thought he would have reduced your dose rather than stop it. Seems a bit odd. Maybe see another GP

[LoveFrozenGrapes]

I agree with the others, sounds odd to first start then too low total cut off... typically as said initial dosage too high for you, typical would have been to back down dosage until normal then slow gradual decreases until finding the lowest dose possible.

Heres how my cycle started:

For me at start was super hyper.. first round of methimazole was:

10mg 2x per day... test in 3 weeks... still high

Adjusted to 3x per day then come back test in 4 weeks then was almost non existent super hypo... felt like a huge slug, slurring words horrible symptoms... they then started to decrease dose... to

10 mg 2x per day....3 week wait & test... still low..

decreased dose again to 10 mg 1x per day.. wait 3 weeks-test... still low...

moved to 5mg 1x per day... wa la balanced levels...

waited through 2 test cycles of every 6 weeks... was still stable...

reduced to 1/2 of a 5mg tablet 1x per day... again 2 test cycles of every 6 weeks.... still normal...

they then decreased med again to 1/2 of a 5mg every other day... did the 2 cycle test phase was still normal range...

It was at this point they wanted me to stay on that level of med. for 2 years... aka to show pattern of normal... at that mark they started spreading out meds to every 3rd day, then 4th then off completely to see if remission was achieved.

[LAHs in reply to LoveFrozenGrapes]

You've got a good doc there! Most docs don't have that sort of patience nor tenacity which is why so many thyroid patients are suffering - except for a few of us who take things into our own hands and study and self medicate and generally DIY.

[LoveFrozenGrapes in reply to LAHs]

At that time through that cycle at the over medicated low point and horrible symptoms, I switched DR's it was me insisting on taper off till normal.(ie taking least possible to get to stable point). ... always have to advocate for self.

[Hmc449]

I'm sorry you're going through this lisbriamy . Hang in there. Would anyone be comfortable posting your levels? I'm curious what are considered low levels. LoveFrozenGrapes - were levels still in range when you were considered low, like borderline? Or were they out of range low? Thanks!

[LoveFrozenGrapes in reply to Hmc449]

Levels went from off the chart high (off chart low TSH & high others) to:

TSH 31.461 (high out of range)

FT3 1.61 (low well below ranges 2.3-4.2)

FT4 .23 ( low well below ranges .80 - 1.8)

Good thing I save all tests in a folder, this was back in 2010.

[Hmc449 in reply to LoveFrozenGrapes]

Thank you LoveFrozenGrapes - I really appreciate you taking the time to go back to your tests from 2010 to post this. 🙂. That’s really kind of you for going above and beyond. I’m going through a similar experience right now - so you’ve helped me a lot. I’m at the very bottom edge of the range and already feel really miserable. My Endo wanted to keep me on the same dose for another 6 weeks. I said no. I’ve tapered down by 5mg on my own after a private blood test, til I see another doctor. I can’t imagine what you experienced at those levels. I’m glad you took care of yourself and found a different doctor. Thank you again.

[LoveFrozenGrapes in reply to Hmc449]

Keep in mind that to take small steps in tapering and wait and test... it takes a while for meds in system to process.... so aka sneak up on low dose LOL take that ol thyroid!

[Hmc449 in reply to LoveFrozenGrapes]

Thanks! I will keep that in mind 😉

[Valarian]

Have you had your antibodies tested, or some other test to establish whether the cause of your hyperthyroidism is Graves’ ? Normally, if you have Graves’, they won’t take you off the meds completely unless they think your white blood count has dropped (you’d probably have a very sore throat and mouth ulcers.)

It is quite difficult to get the dose of antithyroids right for Graves’ because the Graves’ itself has periods of relapse and remission. I don’t have my numbers to hand right now, but I shot right through the range a few months in, so they reduced (but didn’t stop) the medication. Things went as well expected at the next 6 weekly test, then I had a bit of a relapse. My results are now coming down slowly, but at my last test, they didn’t reduce the medication at all .... as you can see from this and lovefrozengrapes& response, it takes a while to get it sorted.

In the U.K., we get at least one, sometimes two cycles of antithyroids before they start seriously suggesting getting rid of the thyroid, usually with radioactive iodine treatment. From the fact that you are on methimazole, I suspect you may be in the US, and they are sometimes less willing to go through full antithyroid cycles there. Whatever the approach, you do need to see an endocrinologist, and it sounds like the dr you mention is a gp?

[LoveFrozenGrapes in reply to Valarian]

In us to get to low dose that was roughly 3yrs. Here many want to jump straight to get you low then RAI.. or removal vs. see if you can go into remission. Up until recently they pushed big after 2yrs saying that its not recommenced XYZ reasons. Now if you can get to and be ok on low dose then fine... Note after anti-thyroid meds those with graves they highly avoid RAI as it can cause complications/trigger or advance the eye issues associated with graves.

[Valarian in reply to LoveFrozenGrapes]

Interesting. Our cycles are usually 12-18 months (apparently there is no evidence that taking antithyroids for longer than this is any more likely to lead to remission, although I’ve yet to see proof for or against this). They usually reckon on six months from the time you are stable within range, but no less than a year.

Because I appear to have had a relapse a few months in, I’ve been told I will be on antithyroids (Carbimazole) for the full 18 months. Every time they mention RAI, I say that I’m not keen on the idea, mainly because it’s a ‘one way street’. So far, they’ve been receptive.

However, I suspect for me, the question will be whether my thyroid levels could be controlled effectively in the long term on low dose Carbimazole. Fingers crossed !

[LoveFrozenGrapes in reply to Valarian]

Here they want a longer point of "level" before remission... if you do go into remission but down the road level up again then the cycle begins again or given surgical option if wanted.. also now dr.'s here are getting that if taken meds... then no RAI to decrease possible thyroid eye effects. From what I've read RAI can come with its own train of hope, wait, test and med balancing possibly even additional goes at it for some "graves" people.. So like you no thanks DR. Fingers crossed with you

[lisbriamy]

Yes, I have tested positive for Graves-about 10 years ago-and this is my third round with hyperthyroid and by far the worse. The first two times I was treated with methimizole (I'm in US) and my Dr had me stay on medicine for about 12-18 months. At that time when I went hypo during treatment he just cut my dosage back. I love that Dr, let me come in and have a blood test whenever I needed. Each time in remission about 5 years.

Fast forward about 10 years and I went hyper at the end of June. Went into AFib and ended up in the hospital. About 2 weeks ago my numbers changed to going hypo: TSH 4.38 (0.04-4.50), T4 free 0.5 (0.8-1.8), T3 total 59 (76-181). Dr told me to just stop Methimizole (on Tuesday) for 2 weeks and retest (I questioned the stopping because of the afib). By Friday I was starting to feel hyper again and on Sunday I decided on my own to start 5mg Methimizole back 2X a day. Felt much better and went to new Dr. Now waiting on new blood work (still feel a little hyper??) to come back. Hoping this new dr works out, she says she believes in how the patient feels more than the blood test. They are waiting for me to decide if I want RAI or Surgery. Told me because this is my third round I need to have it taken care of.

They checked my eyes yesterday and so far no graves there

I will not just stop my meds again and keeping fingers crossed everything levels out. Not sure what to do about RAI???