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  • AmyG
    Participant
    Post count: 16

    Hi all…Was on methimazole for 7 weeks until a week ago. 1 day before an Endo appointment, luckily for me, I developed hives on my forearms. They were itchy and made my whole body start to itch – kind of like that feeling when you see an ant and it crawled on your leg; then you start to feel little ants on other parts of your body :P

    Called Endo and he advised to stop taking methimazole until I saw him the next day. He said 1 in 20 people have an allergic reaction. My options were 1.) let hives clear up and resume methimazole so we would know for sure it wasn’t some coincidence 2.) let hives clear up and begin PTU or 3.) RAI. I decided to go with PTU.

    The hives took about 6 days to completely clear. At that time, I’m sure my thryoid was going CRAZY. I’ve been on PTU for 3 days now (1 pill in the a.m. and 1 pill in the p.m.). The pill is extremely bitter – I made the mistake of not swallowing it fast enough on my very first dose. Now, it’s a game I play with myself to not be able to taste it at all.

    Today, I feel so sore (like I’ve been in a full body bar fight). I can barely keep my eyes open and I majorly cramped up around my ribcage. I’m trying to not let too many stresses bring me down, especially since my body balance is so messed up. I’m wondering if anyone has switched medications (ideally from methimazole to PTU) and how long it took to get “back on track” as far as feeling better? Just last week, before the hives issue, I was back to working out and having motivation to do things in life. I’m afraid this recent set back will do more harm to my emotional psyche versus my physical being.

    adenure
    Participant
    Post count: 491

    Hi!

    I’ve heard that PTU can cause muscle cramps/ spasms (like methimazole can cause hives). I had liver issues with methimazole, so I had to stop it as well. PTU wasn’t recommended to me bc of it being likely to have issues with PTU (liver wise) if one had them with methimazole. You can see on my siggy below that I opted for surgery. I have to tell you that I’m now 2 plus months post surgery and am starting to feel pretty darn good again! My Synthroid was upped to 112 mcg in the last 3 weeks, and I’m feeling better. Not perfect yet, but much, much better. If PTU ends up being the cause of your muscle cramps, I would suggest entertaining RAI or surgery. It feels good to be myself again (or close to it) and know that I don’t have to worry about being hyper anymore. Good luck!

    Kimberly
    Keymaster
    Post count: 4294

    Hi Amy – I would certainly report these symptoms to your doctor for further direction.

    As for the taste issue, certain people are actually genetically programmed to find PTU to be bitter tasting. There’s actually a name for this: “supertasters”. Others don’t notice the taste at all:

    http://www.ncbi.nlm.nih.gov/pubmed/9929686

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    Take care!

    gatorgirly
    Participant
    Post count: 326

    Hi Amy,

    I was on PTU for a year, and you’re right – it tastes awful! I took mine with milk or (once I was finally cleared for caffeine and exercise) coffee and would take a sip, put the pill in my mouth, swallow, and quickly take another sip. If I only had water, I would hold it between my upper and lower front teeth until I took a sip of water to swallow.

    My endo said my muscle cramps were caused by the PTU. I stopped taking it for a short period before RAI, and felt fine, but I went back on the PTU for a few months after RAI and the pain/cramps came back. It was a minor side effect for me, but for some it can be debilitating. Just try to think of it as a hoop to jump through in order to be healthy again.

    Do mention the cramping to your doctor. Are you supposed to be exercising? I know I could not for several months due to Graves affecting my heart. Feel better!

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