[emmtee]

#1059537

I’ve had some issues with my methimazole over the last few months and had to go completely off of it for a while. After it cleared out of my system and I went hyperthyroid again, my endo started me back on the methimazole at a lower dose – 10mg. (I had been on 20, 40, and 60mg before.) A couple of weeks after I started back on it, I started noticing one of the symptoms that had concerned me when I’d had the problems before. I track my blood pressure pretty closely, and my monitor was reporting that my heartbeat was irregular. When this happened before, it was accompanied by weight gain, fatigue, muscle cramps, and back pain. The scariest thing, though, was the blood tests. They were showing signs of kidney failure.

So when, 2 weeks after starting the methimazole again, I was starting to see the irregular heartbeat indicator flashing on my BP monitor, I became concerned. I waited a few days to see if it was pretty consistent, and it was. I wasn’t due for a blood test for another 2-4 weeks, and I had a vacation coming up in just one week. On vacation, I would have no medical care available, and I really needed all my energy for vacation activities. I couldn’t afford to be tired and achy. So I decided to cut my pills in half and see what happened. There was no change for several days, but then the day before I left, the monitor showed consistently no irregular heartbeat.

I continued my half dose on vacation. I took my BP monitor on vacation with me, and had no irregularities for the entire 10 days. Upon my return home, I switched back to the full dose. The irregular HB started right up again, not consistently at first, but for the last week it has been consistent.

So my question is, when should I go back for my blood test? I’m a little overdue by the doctor’s records, but I want to make sure that the test reflects what’s going on since I returned from vacation. Would next week be okay? My next endo appointment is mid January, so I’ll probably have another test right before that and want to plan 4-6 weeks between tests.

[Bobbi]

#1175485

It is a terrible idea to mess with the meds yourself. We cannot tell what the medication is doing without tests, and if we’re not taking a consistent dose of the meds, the tests will not reveal what is going on. When something like an irregular heart beat occurs, you should call your doctor. We patients often make assumptions that are not quite valid. Sometimes we do, a lot of times we don’t.
You need to talk with a medical professional when you have concerns like these.

I have no idea how long you should wait. Or if you should wait. I think you need to start working better WITH your doctor. Part of that will involve fessing up to tinkering, on you own, with the meds. He/she cannot give you valid and good advice without knowing precisely what is going on.

[catstuart7]

#1175486

Hi Emmtee, I find that a methimazole dose change hits me in 5-6 days, a PTU change in 3-4 days. The FT3 and FT4 should reflect right where you are at on a given day but because thyroid hormones have a few days half-life you wouldn’t want to be tested for at least a week after a change, but the TSH can lag behind as much as six weeks. So I’d say like Bobbi, that you need to tell your doctor you’ve made changes if you are getting blood work done within six weeks (or at least 4 weeks) of a dosage change so they can make the right conclusions. Still I get the bind you are in…I am in a similar one that in the past (pre-Graves) I’ve always calibrated what dosage of meds works for me pretty accurately and then shared that with my doctor. But with anti-thyroid drugs and all the frequent monitoring and high-stakes we aren’t free to be the lone ranger anymore. I personally feel I can tell when a dosage is too much or too little based on my symptoms but it still can get dicey when you have a mix of hypo and hyper symptoms at the same time. So ultimately best to have a doctor you’ve got good communication with.

[Carito71]

#1175487

Hello emmtee,

I’m currently on a 2.5mg/day and have been taking it for 2 weeks. I had labs yesterday and the changes are already showing.

I agree with the other comments, please call your Dr. and get a new set of labs but make sure you tell your Dr. exactly what dose you have been taking so that he/she can make the necessary adjustments.

Also, as for the irregular heartbeat, please let your Dr. know. This is very important. If you are having an irregular heartbeat, it can be anything from a mild irregularity to something life threatening such as (atrial fibrillation) A Fib. The medication changes might have nothing to do with it. If I understand it correctly, you were on vacation when your heartbeat started to become regular. Therefore, it could just be that you being relaxed made your heart be regular. The important thing is that it is irregular now that you are back to your daily activities. Your Dr. needs to listen to your heart and probably even get an EKG to make sure you know what is going on. I don’t want to scare you but with A Fib you will need other medications to prevent clots, stroke, heart attack.

Please talk to your Dr. and let him/her know what is going on as soon as possible.

I hope you get the answers/treatment you need soon so that you can start feeling well.

Caro

[emmtee]

#1175488

Catstuart – Thanks for answering my question. I’ve been back on the prescribed dosage for 2 weeks, so I think a blood test now should be indicative of what the methimazole is doing to me. I know all about TSH lagging. Mine didn’t change for over 4 months on methimazole, and then at my next test 2 months later, I was suddenly hypo. It was as if my pituitary gland wasn’t doing anything when I was hyper, so it went into hibernation or something. When it finally woke up, it went into overdrive.

Carito – Don’t worry, all my doctors – my GP, my Endo, and my latest specialist, my nephrologist, know all about my irregular heartbeat. It was just starting to appear when I went to the ER with food poisoning a while back, and I mentioned it to them. They did an EKG and didn’t find anything to be concerned about. I do notice that it seems to be closely related to my pulse rate, which is always in the 40’s and 50’s when irregular vs. the 50’s and 60’s when not. (And I’m definitely NOT and athlete, so that’s not a good thing. I do take BP meds, though.) I keep careful records of my daily weight and twice daily blood pressure, so I know that, in fact, the medication has everything to do with it. The irregular heartbeat indicator started being triggered at the same time that my hypo symptoms appeared last summer. My endo kept lowering my methimazole dosage, from 60, to 40, to 20, but my TSH was actually still going up. All the while, my weight continued to go up and I continued to have the ihb. Finally, when my TSH hit 65, my endo took me off the methimazole completely and the ihb stopped the next day. My heartbeat stayed regular almost all the time until 2 weeks after I started the methimazole again. I have clear documentation – my heartbeat is almost never irregular when I’m hyperthyroid or euthyroid and almost always irregular when I’m hypothyroid.

Bobbi – I may not have a recent blood test, but I have the blood pressure tests and the history of the blood pressure/irregular heartbeat tests and the blood tests that were taken during the same periods. My endo has seen my records. It’s really clear that my irregular heartbeat is an indicator that I’ve gone hypothyroid.

When I was hypo last summer, it was really bad. I had terrible pains – muscle cramps, backaches, headaches, and I was so tired that I spent a lot of days in bed sleeping. So when, 10 days before I was to leave on vacation, I saw that familiar irregular heartbeat indicator, I became concerned. This vacation was a cruise with my siblings; a gift from our mother and an occasion to remember our father who had passed away in April and our sister who had passed away 3 years before him. I had been working really hard learning about the various ports, and I needed every ounce of energy I had to explore them. Wasting the days away in the cabin was not an option.

When I had stopped taking methimazole last summer (on doctors’ orders), the ihb went away immediately, so I figured I could try something less drastic this time and just cut my 10 mg dose in half. That may sound like a lot, but I’ve changed doses in much larger increments before – from 20 to 40 to 60 to 40 to 20 to none. There wasn’t time to consult the doctor this time. She’s only in 3 days a week, and I was so busy getting ready for my trip. I waited a couple of days to make sure the ihb’s weren’t random and then a week before the trip I started halving the pills. The ihb indicator finally stopped triggering the day before the trip, and it never triggered during the entire 10-day trip. (I took the monitor with me to keep track.) After coming home and resuming my regular 10 mg dose, it took 5-6 days for the ihb to be consistent again.

I think I’ll get my labs done on Wednesday. I fully expect a call from the nurse next week telling me that I’m hypo and that the doctor is reducing my dosage to 5 mg. Then I’ll tell the nurse to tell the doctor that I took a 2 1/2 week detour. I’d tell the doctor myself, but I know she’s busy. We’ll go over everything at my next appointment in January. She’ll tell me I could have called her, but what’s done is done. She’s a really good doctor. I can tell her anything, and I’d always planned to.

[Kimberly]

#1175489

Hello – I’ve seen a fairly extreme shift in about 2 – 2 1/2 weeks with a change in anti-thyroid meds. My suggestion would be to try and get in ASAP for a set of labs and then let your doctor know about the dosage changes. Hopefully, you can get things stabilized going forward.

Take care!

[emmtee]

#1175490

Thanks, Kimberly. I knew you’d have an answer, and as my group leader, you know my history. I went ahead and took the blood test Tuesday afternoon. I’m pretty sure I waited long enough for it to reflect what the 10 mg dose is doing to me based not only on what the BP monitor is telling me, but how I’m feeling. The last few days, I’ve been headachy and lightheaded. My feet keep feeling like they’ve fallen asleep, and now my left pinky is feeling numb. I think it’s due to poor circulation from my heart rate being too low. I can’t wait to get the call from the endo’s office. Hopefully, I’m just a little hypo and she’ll just adjust my methimazole dose. The tests included the comprehensive metabolic panel, so she’ll be looking at my kidney function as well. It was good once the methimazole cleared out of my system before. Hopefully it will still be good at the lower, 10 mg dose and I can stay on the drug. I felt fine on 5 mg.

[Kimberly]

#1175491

Glad that you were able to get in for labs this week! By the way, I don’t know if you use Sonora Quest labs, but I was there last week, and they have info for a free mobile app that you can sign up for & have test results sent to your smartphone. Just got my first set of results, and it’s pretty slick!

For others who are interested, you can google “Gazelle App” to find info. The catch is that it’s not available in every state, depending on local medical regulations.

Also, saw your other post…hope that all is well with your aunt! You can have her come here and do a search for “Graves’ Rage” to see that this is something that many of us struggle with!

[Author]

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