[emmtee]

#1058894

Around Thankgsgiving, I started on 20mg of Methimazole daily. After Christmas, I had my blood tested and my levels were improved, but still off, so my endo doubled my dose to 40mg daily. A few weeks ago, I had another blood test. My T4 is normal, but my T3 is still high, so my endo added another 20mg to my daily dose. I’m now taking 60mg a day. The pills are 10mg each, so that’s 6 pills I’m taking every day. It seems like an awfully high dose to me. Of course, I trust my endo and will follow her instructions, but I’m curious to know what dosage other people are taking.

[sarah]

#1170734

Hi emmtee!

I’m taking 40 mg per day at this point. That is my starting level. I redraw labs on the 16th. If I’m still “bad” then I will likely go up to 60mg too. I am curious if that is a high dose or not as well. I look forward to reading what others have to say.

Thank you for posting your question! I wish I could be more help.

You’re in my thoughts.

[RebeccaJT]

#1170735

Hi both

First of all let me begin with a caveat, I am NO WAY suggesting that you should not take your meds or that your doctor has your dose wrong. Being hyper is seriously dangerous and needs to be controlled.

However, here in the UK I was told that 40mg is usually the dose they use to totally shut down the thyroid. We have a treatment here that is less common in the States called block and replace – where they block the thyroid with one drug and artificially replace the missing thyroid hormones with synthetic hormones like levothyroxine. The dose normally required to shut the thyroid down entirely is 40mg.

At one time I was on 60mg of Carbimazole (the UK equivalent). This is a very high dose. I was very, very toxic indeed – my thyroid was really out of control.

I would suggest if you are on 40mg or 60mg and your T3 still is going out of range you ask your doctor to test for hashimotos disease as well as Graves. I had hashitoxicosis, which meant I had intermittant T3 toxicity. So my T4 dropped like a stone and my T3 was still swinging around. This could not be controlled with drugs.

Keep taking the meds but ask your doctor what the game plan is – in my case I wish I’d pushed harder for a really really clear diagnosis. Also I had a very seriously inflamed thyroid and thyroid cancer so a lot of my symptoms were not related to my blood levels – so even when hammered back into normal ranges by very high dose ATDs I still felt very, very unwell and indeed I WAS dangerously unwell.

If my endo had listened to my questions about Hashis (I’d worked it out myself way before he did) and done the tests I’d have been spared over a year of hell on a drug regime that had no chance of working for me. Again I’m not saying this is the case with you at all but there’s no harm in asking questions.

I hope that helps.

Rebecca
(Thyroid warrior! )

[Kimberly]

#1170736

Hello – My Graves’ was caught in a routine checkup before I became extremely symptomatic, so the highest dose I was ever on was 15 mg.

Here is a link to the latest guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists on dosing. The dosing info starts on page 11 of the PDF doc, which is page 603 of the original journal article.

[size 10](Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf

Keep in mind, though, that every patient is different. We had one presenter comments at our Boston conference that he’d never seen two cases of Graves’ that were exactly alike — even in identical twins!

The RAIU uptake & scan can generally distinguish Graves’ from Hashi’s or “hot” nodules. However, I agree with Rebecca that it would be good to have a discussion with your doctor as to her “game plan” going forward.

[emmtee]

#1170737

When I was first diagnosed with hyperthyroidism (the GD diagnosis came a couple of weeks later after the uptake and scan), my PCP said it was severe. My endo told me that, based on the large size of my thyroid, it’s unlikely I’ll that I’ll go into remission. My scan showed enlargement, but no nodules.

Here are my labs to give you an idea:

09/30/11
TSH: <0.006 (Normal 0.450 - 4.500)
Free T4: 4.31 (Normal 0.82 – 1.77)

10/25/11
Uptake at 4 Hours: 57% (Normal 5 to 15%)
Uptake at 24 Hours: 73.5% (Normal 10 to 30%)

11/28/11
Started 20mg Methimazole

12/30/11
TSH: <0.006
Free T4: 2.50
Free T3: 8.1 (Normal 2.0 – 4.4)

01/09/12
Started 40mg Methimazole

02/15/12
TSH: <0.006
Free T4: 1.76 (barely normal)
Free T3: 6.0

02/27/12
Started 60mg Methimazole

Next scheduled blood test is at 6 weeks, so about mid-April.

As far as my symptoms go, I felt a lot of improvement when I was on 20mg, and now I feel completely normal. My systolic BP is down from the 130’s to the 110’s. (I had been on 25 mg metoprolol for years, and my PCP increased it to 50mg when I was diagnosed.) My tremors are completely gone except when I’m particularly stressed, and my eyelid retraction is almost completely gone. My PCP noticed a few weeks ago that I’m a lot more relaxed now.

[snelsen]

#1170738

Hi emmtee,
Just a thought, but Kimberly’s post pretty much covers it very nicely.
There are so many variables regarding dosage of MMI, but it sounds to me like you have a very good endocrinologist, who is changing the dose based on your labs, and how you are feeling. And that is exactly what taking ATD’s is all about. To get your from that horrible to that “sweet spot.” Your heart rate is down, tremors gone or almost gone, you feel less anxious, etc. Wonderful!
When you feel better, the whole world is better, and you can think more rationally about life, and about further treatment options. I look forward to seeing your next post!
Shirley

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