[amosmcd]

#1059466

A few days ago I got my lab results which were drawn 6 weeks after starting Methimazole 10mg daily. I’ll start with my previous labs where I was diagnosed with Graves:

8/31/12:

Free T3: 6.4 (2.0-4.4 normal)
Free T4: 1.54 (0.93-1.70 normal)
TSH: <0.013 (0.270-4.20 normal)

10/18/12:

Free T3: 2.1
Free T4: 0.55
TSH: 0.730

My endo called me on the phone with the results. He cut my Methimazole dose in half, to 5mg daily. He wants to re-check my labs, and see me, in another 6 weeks. I told him about feeling cold, and he said with some irony that I seemed to need to be a little thyrotoxic to be able to stay warm. I do think I do better with a lower TSH. In November 2011 my TSH was 0.271 (just barely normal) and I felt great and it was the first winter I had felt warm without bundling myself up inside the house in 30 years. My free T4 back then was 1.35. For some reason my endo didn’t check my T3 much the past year, just the TSH and T4. But back in Nov 2011, I was on Levothyroxine for hypO.

In fact my TPO antibody for Hashimoto’s thyroiditis was 259 (normal 0-35) back in January of 2009.

My TSI for Graves was 210 (normal 0-139) this past June.

I still don’t have a solid grasp on what the thyroid labs mean, but I just need to study them now that I have them all since 2009 when I first was tested. Next time I go in, I’m going to ask my endo for the dates of when I started Levothyroxine and each adjustment, plus his notes on how I was feeling (since I have no memory!) :rolleyes:

All I know is that I despise the Methimazole and the way it makes me feel. I haven’t felt right since I started it. Yes, the elevated heart rate and palpitations are gone, but I feel generally worse. Fatigued, poor quality sleep, drowsiness, needing 10-11 hours of sleep a night. I can’t see staying on this drug for years in hopes of a remission. I told my endo I would rather have my thyroid out. He favors RAI, I favor surgery. He’s worried about damage to my vocal cords, etc., I’m worried about radiation. He did say, “well, show me a study that ties RAI to head and neck cancers, because I’ve never seen a correlation.” But I will do what I feel is right for me after I talk to an RAI specialist and and a thyroid surgeon–when the time for making a decision comes.

Meanwhile, I’m sitting here typing, in a sweater, with a blanket around me, thermostat at 69 and my hand are ice cold. It’s like that at work, too, without benefit of a blanket.

Thanks for listening. I know so many of you have had much worse struggles, my being cold and tired doesn’t seem like much, but it’s not a great quality of life for me, especially since the Seattle area is cold much of the year. Hard to avoid the cold, but most people here aren’t that bothered by it.

Amy

[Bobbi]

#1174835

Hi, Amy: I have a relative in Seattle, and I DO know what you mean about feeling cold there. I think that the coldest I’ve ever felt was one day in Seattle, when it was 47 degrees and raining, raining, raining. I couldn’t get the chill out of my bones.

Drugs have different side effect issues for different people, so it is possible that your body doesn’t “like” the methimazole — isn’t able to process the toxic by-products of the drug’s metabolization quickly enough. I don’t know how you effectively test that out, though, unless your doctor is willing to try PTU (which has fallen into some disfavor recently due to evidence that it is harder on the liver than methimazole is). Anyway, I do empathize because I didn’t tolerate PTU well, and hated the way I felt at “normal” labs. I was terrified of surgery, so I did RAI and have never, ever felt as bad as I did while “normal” on PTU. We don’t have a magic “feel good” pill available to us, but it is possible that you will tolerate the replacement hormone better than you do the ATD. REplacement hormone is chemically identical to the body’s own T4, so the side effect issues are pretty much limited to taking too much (hyper symptoms) or taking too little (hypo symptoms).

[amosmcd]

#1174836

Thanks, Bobbi!

Yeah, there’s something about cold and damp that really makes a person cold!

I would be reluctant to try the PTU after all the bad stuff I’ve heard about it, but I guess I could ask my endo if this keeps going on. Since my body wants to bounce between being hypo and hyper, I’d really rather just get my thyroid out. I’m just not sure how much time I should give all this. After 30 years of having almost every hypo symptom, to feeling so good on Levothroxine, and then suddenly having Graves Disease and now feeling so lousy on Methimazole, I am so impatient to get back to feeling good like I did for that year to 18 months before going hyper. I felt like I wasted 30 years of my life never feeling right, never understanding how people got anything done, how they had any motivation, feeling lazy–and now the Methimazole is making me feel even worse than that. Some treatment! Last night I slept 10 hours, woke up feeling so sleepy I could barely get out of bed, spent the first few hours at work trying to keep my eyes open. It’s ridiculous.

Anyway, thanks for listening to me rant. I really appreciate this supportive group of folks!

Amy

[catstuart7]

#1174837

Hi Amy, I know that cold feeling as my levels have gotten too low lately. Given that your FT4 is below the bottom of the range and your FT3 is barely in the range you are probably suffering from hypothyroid symptoms rather than direct side effects of methimazole. TSH remaining low can be due to Graves antibodies and can lead to getting overdosed on methimazole. There is a link that Kimberly posts sometimes to an official statement about this and how endos should dose by the FT’s and not TSH. I need to find it myself to bring to my own endo soon.

Edited to add: Here’s a link from Thyroid Disease Manager http://www.thyroidmanager.org/2007/02/01/long-term-tsh-suppression-in-graves-hyperthyroidism/

[amosmcd]

#1174838

Hi, Catstuart–

Thank for the article. I don’t think my TSH is suppressed, though. It’s definitely gone up from being unreadable to in the normal range with the Methimazole. Aside from being cold, I can trace my feeling bad to the day I started the Methimazole. Even with the dose cut in half now, the symptoms are the same. Felt better being hyper, really, aside from the increased heart rate and palpatations, which didnt get troublesome until late this summer. I felt alive at least. Now I feel like the life has been sucked out of me. I see my endo at the end of November, unless I can’t stand it any longer and I’ll ask to come in sooner.

Amy

[Kimberly]

#1174839

@catstuart7 – The guidance about not using TSH to make dosing decisions is included in the “Treatment Options” link in the announcements section of this forum.

@Amy – Having T3/T4 at the bottom end of (or below) the normal range can absolutely result in symptoms of hypO. If you don’t start to see some relief on this new dose, I would definitely call your doctor’s office and ask for a new set of labs ASAP, even if you need to do this before your regularly scheduled appointment.

[amosmcd]

#1174840

Thanks, Kimberly!

I’ve been on the new 5mg dosage for 2 weeks and don’t feel any better in terms of the sleepiness, and fatigue. So I’m not sure if its hypo symptoms (I don’t remember having daily sleep quality issues when hypo) or that I’m not tolerating any dose of Methimazole.

I also thought I’d be on Methimazole for a lot longer than 6 weeks before going from hyper to hypo. I thought it took a lot longer. I think I’ll see how I feel the next couple if days and then get my labs drawn again. Would it help to get my Graves and Hashimoto’s antibodies drawn to see where I am with those?

I feel so frustrated and confused, but at lm in good company here at least.

Amy

[amosmcd]

#1174841

I forgot to add that Although I stopped losing weight now that I’m on Methimazole, I’ve only gain a few pounds back. I’m still a few pounds underweight (I’m talking my high school weight) and I’m now 54) but I’m also wearing a size 8 pants, which is pretty small for me. A 12 would be a better size. It’s sort of fun to be thin, but it’s not healthy for me to be this thin. I just bought the size 8 today because all my other pants just hang on me. Usually when I’m hypo I gain weight pretty easily, but I’m not. So I’m confused about that, too.
Amy

[Kimberly]

#1174842

Hello – Antibody testing is generally only recommended in specific cases: initial diagnosis, determining remission, and some docs use it to monitor the course of TED. It’s fairly expensive, and probably wouldn’t give you much useful information at this point.

Every patient is unique when it comes to responding to anti-thyroid drugs. I know patients who needed several months before T3/T4 started to drop, and others who moved into hypo territory within a matter of weeks. If you are still feeling poorly, it’s definitely worth a call to your doctor’s office. Although it takes several weeks to properly judge the reaction to thyroid hormone replacement, patients can respond *much* more quickly to ATDs.

Take care!

[amosmcd]

#1174843

Thanks, Kimberly!

I don’t see my doc til the 29th, so definitely calling him Wednesday. Will have no time tomorrow. I’m noticing heart palpitations off and on again on the reduced dose, although my resting pulse is not above 80, I feel a little anxious, too. But still sleepy and fatigued. Sheesh.

I definitely need to get this figured out. Thanks for letting me know about how quickly ATD’s work.

Amy

[Carito71]

#1174844

Hello Amy,

I’m the opposite. I was feeling very hot when I was first diagnosed. I did start feeling more normal few weeks ago but my TSH was 8 something … Hypo! I’m a little hyper again and one of my main complaints is that I feel hot even when everyone else is really cold

Anyway, you are not alone. Heat and cold intolerance seems to be a symptom some of us experience.

I haven’t experienced palpitations but my heart rate was very elevated when my symptoms first started. I recommend letting your Dr. know about the palpitations as soon as possible. Hope you find the answers you need soon.

Caro

[amosmcd]

#1174845

Hi, Caro–

Well, the palpitations went away on their own after a short while. Today I was so sleepy at work from the Methimazole, I broke down and had a cup of caffeinated tea. I’ve avoided caffeine the past few years. I was buzzing around work for a few hours, more agitated than anything else, but no palpitations.

Still feeling cold. I get my labs drawn next Friday and see the endo the next Thursday. I want to get off the Methimazole. My quality of life has gone downhill since I started it back in September. Sleepy all the time when awake, and sleep too much when asleep, but also don’t sleep well, and I’m only on 5mg/day! So might be looking at RAI or TT sooner than later. But I have lots of questions before that.

I guess patience is a necessity, but I’m not a very patient person!

Hope things get better for you, too.

Take care,
Amy

[Kimberly]

#1174846

@Amy – If you are really feeling poorly, you might see if you can bump up your labs/appointment to get these one a little more quickly. If your schedule d is flexible, asking to be placed on a cancellation list can also sometimes be helpful.

Some docs will actually recommend adding a small amount of replacement hormone if a patient ends up hypO on a small dose of methimazole…although this seems to be more common in children. Other docs will recommend splitting pills and taking less than the standard 5 mg. Dosing is definitely not “one size fits all”! Take care!

[amosmcd]

#1174847

Hi, Kimberly,

I went in and got my labs drawn today: TSH, Free T4 and CMP. I had called to see if it was okay to come in, but didnt get a reply, so just went in, since its near where I work. My endo’s office will see if he can squeeze me in Tues the 20th instead of the 30th. I hope so. But just getting the labs done was mentally a relief for me. I have been at the end of my rope with this.

Thanks for your reply. I’ll post when I find out anything more.

Amy

[amosmcd]

#1174848

That was fast! My endo can see me next Tuesday the 20th! What a relief!!! Can get through the next 4 days knowing I might be feeling better sooner than later. YAY!!

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