[Helenh]

#1017986

Hi all. I’d love your advice. Every month I’m either extreme hyper or extreme hypo. Finally, last month I was just a little hypo and my doc changed my methimazole from 5mg to 2.5mg to get me closer to normal. With my latest test results she now wants me to go back to 5mg (TSH 0.06, Free T4 is 0.03 and Free T3 is 11.7). Are those results hyper?

I’m wondering if I should not keep changing my dosage every month, and see if my levels become more stable over time while taking 2.5mg? I feel like my body is in turmoil because I keep changing my methimazole dosages every few weeks.

My endo has not been very good at explaining things to me…if you have any insights I would appreciate them!

[Bobbi]

#1062044

You may know some of this info I’m about to give, but in case you don’t, I’m going to cover it all again, anyway, just to be on the safe side.

The methimazole acts as a chemical block to the production of thyroid hormone. We have to take enough of it so that our thyroid levels are "normal". If we take too much, we can become hypothyroid, and if we take too little we can remain hyperthyroid. But that’s all it does.

The reason that the thyroid is wonky in the first place is due to antibodies in the immune system against the thyroid. The methimazole doesn’t affect the levels of antibodies, and these can change for no well-understood reason. Some of us have antibodies that can make us hypothyroid as well as antibodies that can make us hyperthyroid, and that makes for potential swings between the two states. It would be nice if these two different antibodies simply would cancel one another out, but they don’t — at least not always. Whether that is what is happening to you, I have no idea. But because antibodies are the base cause, it is not unusual, especially at first, for someone to have to change their dose of the antithyroid meds from time to time. While you keep your thyroid, the dose of methimazole must be checked because how much you need WILL fluctuate. It probably shouldn’t be fluctuating quite as frequently as you are reporting right now, but it will fluctuate over time.

As to what specifically your test results are showing, we cannot tell. Different labs have different ranges for normal based on how they run their tests. So the best thing for you to do is to get copies of your blood work. EVERY time. On the test result sheet, the lab prints their range of normal, and they also print whether the specific results are out-of-range, high, or low. If you have your results in hand, you will see those normal or out-of-range marks and be able to tell more about what is going on. And, when you get them every time, you will be able to better track the course of your treatment.

I can understand your frustration. One thing I would do in your case would be to talk with my pharmacist about the methimazole. I don’t know much about this drug’s action or interactions with other drugs. But sometimes we can be doing something, unaware that we are interfering with the ability of a medication to do it’s best "work." I’ve never heard of having to be especially careful with how you take methimazole, but it wouldn’t hurt to ask the pharmacist, since the treatment doesn’t seem to be working optimally for you.

[Helenh]

#1062045

Thanks Bobbi for the information! Is it normal for someone to jump levels so much just because of a 2.5mg change in Methimazole?

[Bobbi]

#1062046

You are assuming that you were "extremely" hypo or hyper, but the doctor’s behavior — at least recently — does not suggest to me that you were. There are individuals who are on a much higher dose of methimazole than 5 mg. According to my drug info, 5 mg. every 8 hours is prescribed for "mild" hyperthyroidism. There are people who are on 10 mg. or even 20 mg. If you had gone "extremely" hypo on 5 mg of methimazole, your doctor would, most likely, have taken you off the drug completely. The fact that he/she didn’t suggests that while you WERE hypo, your doctor felt that only a small change in medication would handle things. Extreme hypo are numbers that we typically don’t see when we’re well-monitored by our physicians. Apparently minor adjustments in your meds are causing more than minor swings in thyroid levels. That is troublesome.

[Helenh]

#1062047

When I was extremely hypo I had a TSH of 30 and I was on 40 mg of Methimazole. After those results I changed my endo and she put me on 10 mg, then 5mg, then 2.5mg currently.

Thanks Bobbi for the information and replies.

[whatgives]

#1062048

I am in the same boat. In Dec. of 2010 I was told I was Hyperthyroid. My TSH didn’t even register on my blood work. Then I was also told that I had Graves’. I was sad to hear this, but it at least explained why my eyes were no longer even. My left eye was measured at 3mm out. My endo put me on 5mg of methimazole twice a day. This helped with some of my symptoms (anxiety, restlessness, and extreme heat sensitivity). I thought everything was going good until recently. I got my blood work done in June. My TSH came back at 17!!!!! I just found this out at my appointment today. My endo wanted me to take less of the methimazole (5mg once a day), but when he heard me still having the hyper symptoms he hesitated. He had them take a current TSH level for blood before changing my meds. My eye has gotten better, much less obvious, so that is good. Still having issues with ALWAYS being hot! Don’t have the heart issues others talk about, but I do feel anxious/nervous sometimes for no reason at all. I am not feeling sluggish, acutally the opposite. I feel like I go a mile a minute and anyone who knows me asks "how are you always go go go". My mind and body feel it. I just turned 29 and I consider myself to be healthy. I run 5 times a week, yoga, lift. I eat healhty too, but no weight will come off. I think that is the only side effect I don’t have. Instead of weight loss I feel like I have gained. Any suggestions or words of wisdom???

[Kimberly]

#1062049

Hello and welcome! It’s common to reduce the dose of methimazole as levels start moving in to the “normal” range in order to prevent hypOthyroidism. Are you having Free T3 and Free T4 tested as well? HypER/hypo symptoms can occasionally overlap, so the FT3/FT4 might give you and your doctor a better picture of what is going on.

As for the weight issues, many patients struggle with this after treatment. There are no easy answers, but here are a few tips from a nutritionist who presented at our 2009 conference:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to engage in activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week – but it sounds like you are already getting lots of activity in.

[Lina1]

#1062050

Helen,

I’m sort of in the same boat as you, only I’ve been taking PTU. My doctor and I keep switching between 1/2 a pill once a day for a month or 1/2 a pill twice a day for a month. Each time we do this, at the end of the month I’m either slightly hyper or slightly hypo…but seemingly never within normal range. Weird, right? Seems like my Graves just wants to be stubborn and difficult. Now we have a plan to take 1/2 a pill twice a day, then the next day just once. Twice, then once, alternating days. I’m hoping that this will help keep me in the normal range next time I have a blood test…although based on symptoms, I bet I’ll test hyper again! Sometimes…you’ve just got to laugh. At least you know you’re not alone with this issue. I’m looking into trying other things to go with the medicine to help my body heal itself. I’ve heard some good things about acupuncture or yoga/meditation classes to reduce stress. Perhaps I’ll try and add that into my regiment to give myself a better chance.

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