[amosmcd]

#1059507

Here are my labs results:

TSH 4.760 (0.270-4.20) High
Free T4 0.60 (0.93-1.70) Low

On 10/18, my last TSH was 0.730 and my T4 was 0.55.

I explained how sleepy I’ve felt on the Methimazole. Well, sedated, actually. No energy, no brain, irritable. He said to stop it for 3 weeks then come in for another lab draw. He said my TSH is too high anyway. He expects my hyper symptoms and labs to return, but says with the Hashimoto’s and Graves both messing with my thyroid, it’s not surprising that ATDs would make my thyroid levels hard to control. Once they go up again he will do a radio-iodine uptake scan (my idea, thanks GDATF!) to absolutely verify it’s Graves (even though he’s sure with labs, TSI, and symptoms.) Is still pushing for RAI rather than TT. He’s just not thrilled about possible injuries vs radiation exposure. Gotta think this over more. No matter what he feels I would feel alot better with my thyroid gone and with my levels stable. And since I felt good on Levo before when hypo, he has an idea if what levels to aim for. But first wait 3 weeks. He’ll also repeat my TSI at that time. I talked with him for 45 mins, got my questions answered and felt like he really listened.

I feel so relieved. Too bad I took the Methimazole this morning, but none tonight–yay!!

Thanks to the support and info from this great group of folks who empowered me to ask good questions! I am so grateful!

Amy

Questions? Problems? Please contact us at info@ngdf.org or 877-643-3123.

[Kimberly]

#1175212

Hi Amy – Wow, a 45-minute appointment is a rarity these days! That’s great that your doc was willing to take the time to answer all your questions.

Sounds like the lab work definitely validated the symptoms you were experiencing…hopefully, things will be a little more stable the next time you go in.

Take care!

[amosmcd]

#1175213

Thanks, Kimberly!

He saw me on his lunch hour. Surprised he wasn’t crankier than I’ve been lately!

He also said that I could have Hashimoto’s thyrotoxicosis, but the treatment is the same. Out with my thyroid. I’ve probably forgotten some of what he told me what with my brain being half gone, but I posted as soon as I got out of his office.

Now to start my work day. Will get very sleepy in about an hour due to Methimazole, but I can handle it knowing I’ll be off it now. He said putting me on PTU (I remember something else! lol!) would most likely cause the same sedative effects of MMI, so he doesn’t think it’s worth trying. Me, either.

Amy

[Carito71]

#1175214

Hello Amy,

I’m so glad you had a positive experience at your visit. I just had my visit too. It sounds like we are playing the same round … lol. I came off Methimazole a month ago b/c I was very hypo … TSH 8. I saw my Dr. last week and he put me back on b/c now I’m a little bit hyper … TSH slightly low but fT4 normal. Anyway, I’m on a 2.5mg/day now but I’m not feeling well. I think the hyper symptoms are here again. I feel very tired but it comes and goes. My Dr. also wants my thyroid out. He has been wanting it out from the very beginning. He doesn’t like the medication it seems like. He looks for reasons to suggest RAI or TT. I finally told him last week that if my thyroid has to be removed from the equation that I don’t want RAI and that I want TT but that first I want to try the Rx. I’m worried about the TSI and one theory is that the Methimazole might lower it. You said you posted after your appt. I’ll go find your post next. I’m very interested to read about your experience. Any answered questions can be of help to all of us here.

I hope you feel better soon.

Caro

[Carito71]

#1175215

Ooops … I think I got confused. I was looking for a post with the questions and answers. I guess this is the post you were referring to (when you posted as soon as you left the Dr.’s) My brain is not all there today.

[catstuart7]

#1175216

One option for you guys to consider is “add back” or “block and replace” therapies where you take methimazole and thyroxine both. The methimazole keeps the thyroid in line and the small amount of thyroxine keeps you from hypo. There is a Japanese study about this leading many people to remission which I brought to my first endo. She dismissed it saying that it had not been replicated but I wasn’t at a point of needing very low anti-thyroid drugs anyway then so I didn’t push it. Still if I were in your position I’d be tempted to try it!

[Kimberly]

#1175217

Just a quick note that the Japanese study involved *full* “Block and Replace” which involved high doses of anti-thyroid drugs to completely shut down thyroid hormone production, and then giving the patient a full dose of thyroid hormone replacement.

This particular study resulted in a very high remission rate, but as Catstuart’s doc said, the success rate has not been replicated in the U.S. — and doctors here are concerned that the high dose of ATDs required could lead to an increased risk of serious side effects.

The process of adding a small amount of thyroid replacement to stabilize levels is actually quite commonly used in children with Graves’, and some docs are open to doing this with adults as well.

[amosmcd]

#1175218

@Caro– I can see how you got confused. I was so excited when I left the endo’s, I don’t think I worded things well!

@Catstuart–I simply can’t go back on Methimazole, due to the sedation side effect I had. It was intolerable. I would rather just get rid of my thyroid. I had no side effects at all from the Levothyroxine for the year or so I was on it before being diagnosed with Graves. I appreciate your input, though!

[catstuart7]

#1175219

Kimberly, glad you remembered because I can’t find my link to the study anymore. It seems to me too with them adding a small amount of thyroxine that it would be possible to stay on the methimazole longer increasing chance of remission. I read lots of individual accounts on the net of this strategy working, but I wish there was an official study I could bring to my endo!

Amosmcd, are you sure that you felt sedated because of the methimazole OR because you were on too high a dose of methimazole and were hypothyroid? The question of what is a side effect of all of these things (methimazole, PTU, synthroid) seems to get blurred by whether the person is also hypo or hyper because of wrong dosage.

[amosmcd]

#1175220

Hi, Catstuart–

When I started on the Methimazole the first week of September, I was hyperthyroid, by labs and symptoms. From the very first day I started it, I felt in a complete fog and sedated. The fogginess got better over time, but not the sedation effect. Now that Im off it I feel a little better, but now I’m hypo. One of the listed side effects of Methimazole is drowsiness. I am very sensitive to anything that can cause drowsiness, like antihistamines. My endo said my body just doesn’t like Methimazole, even though it worked very quickly. And I was on a low dose.

He said that PTU would have the same effect. But since Im hypo, it’s a moot point.

Amy

[catstuart7]

#1175221

Amy, this is very interesting to me for my own situation too. Were you also starting a beta-blocker on the first day you started the methimazole or was it the only new thing? I’m interested because I’m now trying methimazole again for the second time right now and feel realllly sedated – trying to sort out if I’m going hypo or maybe reacting as you did.

[Carito71]

#1175222

I’m very sensitive to medications too Amy and make me feel sleep. For example, I take one 500mg Tylenol and it makes me feel sleepy.

I felt dizzy when I first started the Methimazole but I was also starting Propranolol. Once my Dr. changed me from Propranolol to Metoprolol, I started to feel better.

Elevated liver enzymes can make one feel tired and Methimazole can increase liver enzymes. Being hyperthyroid can also increase liver enzymes.

I think it is hard some times to know what makes us feel the way we do. My General Dr. told me that my body had gone and was going through a lot with the hyperthyroid and that once things were balanced that I would feel better.

I’m glad your numbers came down with a lower dose. If you are taking a beta blocker, you might also want to make sure it is now what is making you feel the way you are. Mine had to be lowered from 50mg/day to 25mg/day once my thyroid #s started to drop b/c it was lowering my heart too much and making me feel dizzy/tired.

[amosmcd]

#1175223

Hi, Caro and Catstuart–

I asked for a prescription for Metoprolol after reading about how so many forum members were on it, but never needed to take it. So I’ve never been on it. My liver enzymes have been monitored since I started Methimazole, and they have always been normal.

I really have thought of everything it could be, but since this sedation effect started the same day as I started Methimazole, I have to believe it is the cause. I think I’m just sensitive to it. It worked very fast with me, on a small dose. I wish I’d gone in sooner to have my labs checked to have prevented my drop into being so hypo now, but I did go in 10 days early at least.

Most people on the forum don’t seem to have a problem with it. Lucky me. :rolleyes:

Amy

[Carito71]

#1175224

Wow … it sounds like it is the Methimazole then. I’m on a 2.5mg/day right now. How low did you go? Maybe since it works so well for you as far as lowering the thyroid, why not try a very very low dose? Did it make you feel sleepy all of the time? Could you tell when you were euthyroid, right before going hypo? If so, did you feel sleepy then too. I’m thinking that maybe you require a very very low dose to stay euthyroid.

I’m so glad you did not have to go on a beta blocker. I can’t wait to come off of mine. I’m at a 25mg/day and planning on decreasing it if all goes well this month with the Methimazole.

[amosmcd]

#1175225

Hi, Caro–

I started at 10mg once a day, got slammed with the brain fog and sedation, so divided it into 5mg at noon and 5mg at midnight (good hours for me.) It didn’t make any difference. The brain fog mostly went away after 2 weeks, but not totally.

I got my labs checked 6 weeks later, and my labs were close to normal, so my endo dropped me to 5mg (which I split into 2.5mg twice a day.) No change in the drowsiness.

Then a month later the labs showed I was hypo. I haven’t been hypo in a long time, a few years. All I knew was I felt awful and couldn’t stand it anymore when I called his office and asked to come in early. And then he took me off the Methimazole. So going lower than 5mg wasn’t an option. I don’t know how low a dose I could take and still not get the side effect. I’m hoping I never have to find out.

How the sedation felt was that about 3 hours after I took the noon dose, I would get socked with feeling incredibly drowsy. Since that’s when I start work, it was very inconvenient! If I had a day off, I would take a nap. I’d be tired around midnight or so and fall asleep. I’d sleep fitfully, and felt like I could sleep for days. I slept between 11-12 hours a day. If I was woken up by anything (my cats especially) I would be SO irritated!! I’d get up around noon and start the whole cycle all over again. I just felt heavy with fatigue all the time.

Now that I’m off it, I notice I can wake up at an earlier time, and not feel like strangling my cats if they wake me up earlier. (I do love my kitties!) I’m alert at work and don’t drag so much through the day. I want to get back to waking up at 10 or 10:30am instead of an hour later. It really eats into my free time, and it makes me feel so lazy and useless.

It was especially frustrating to feel so sleepy and not be able to drink a cup of tea to wake me up (I’ve been off caffeine for almost 3 years.) I did drink a cup a couple weeks ago in desperation and I was so agitated at work it was horrible. At least I can eat chocolate.

I hope you feel better soon. This disease and its treatments affect everyone so differently. It’s really frustrating.

Amy

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