Methimazole & itching

[Musela]

Hi, I was just recently diagnosed with Grave's disease on the 27th of June with only a TSH and FT4 results (I don't have the Grave's Opto), and was prescribed 15mg of methimazole twice a day (30mg total). I started taking it on the 2nd of July and it has been almost 3 weeks being on the ATD, but now I have itching w/welts that switch from one place to another on my body. It started about 2 days ago. It hasn't gotten to my face yet (and I hope it doesn't). Taking benadryl seems to reduce the itching.  My quesion is, is it possible that I'm on too high of a dose? my TSH was 0.010 and FT4 was 2.8. I'm scared that my Endo is going to tell me to stop taking the medicine and that I'm having an allergic reaction to it. I do not want RAI or surgery especially since he diagnosed me with Grave's so quickly without knowing my antibody count.

I do have an appointment for labwork tomorrow and a visit for the 23rd of July. I'm really scared and don't know what to do. Any info you can help me with would be greatly appreciated.


This discussion is related to Methimazole vs Tapazole vs PTU vs  Carbimazole which helps me hit remission faster and causes less side effects?.

[joyrrt]

Thanks so much for your input it really helps!! OMG the fresh tar smell that is perfect, I think my husband thought I was exagerating a bit. I will tell him that one lol! I felt so great for the first 2 1/2 weeks on the methamazole, until the itching that now seems very common. I too had all those symtoms and kept putting off a trip to the dr. ( my anxiety was so high I didnt want an appointment) until a co worker said either make an appointment or they were going to walk me down to ER! I think my hair was soaking wet from the sweating and I was so SOB but still thought it was caffeine or menopause...lol. So I did and dr. called me herself within a couple days and said no wonder I was so nervous and shaky my liver enzymes were elevated and my thyroid was out of control.

So glad that your eyes are ok, it gives me hope, I see a specialist on TED on the 15th. red scratchy and tear up easy for quite awhile now, but so much pressure behind my right eye and it looks bigger than the other...
I called my endo and the nurse at his office seemed confused, like she never heard of such a thing, told me just to take it easy and apply ice?? I was thinking maybe I should be seen, at least look at me, I hear sometimes steroids can help for short term.
Wow I went from no meds to feeling like I need to take the whole drugstore lol!!

Just curious.... are you able to work out again yet? I wanted to ask my dr and I forgot, my BP and HR are good and I used to walk 4 or 5 miles a few times a week with my sister and really miss it.

Thanks so much everyone is so helpful!!! Joy

[yankeeRN]

To joyrrt and musela--I can so relate to all that you have said except for the wanting the thyroid out.  I am in hopes of keeping my thyroid.  I was diagnosed with hyperthyroidism on Sept 9, 2011---I remember that day all too well.  This was the day that I could no longer deny that whatever was making my body do weird things (spurts of rapid heart rate, POUNDING heart, heat intolerance, major sweating, weak arms and legs, incredible appetite and still hungry every 2 hours, anxiety, and shakey hands, etc).  I was in major denial till I ended up in the ER with rapid heart rate of 160's, high bp where it made me dizzy and it felt like my head wanted to explode, and feeling awful--even then I had planned on leaving work and just going home to lay down--good thing I didn't because I probably would have had a heart attack from the stress on my poor heart.  Anyways--to get to the point--I was started on a beta blocker then PTU (by my family md) when they confirmed it was hyperthyroidism.  I was switched to the methimazole by the endo  because of the lesser chance of the severe side effects.  After about 4 weeks or so I started with very itchy palms to the point where it felt like I had athletes foot on my hands--drove me crazy.  Shortly after I started with the hives---this was hard to ignore because of the itching--OMG--I took some benadryl hoping maybe it was my my new bathrobe????  A lot of denial here as you can see.  Well of course it ended up being the methimazole:(  My md said to stop the methimazole and wasn't going to restart me on the PTU---this was scarey to me because I had been sooooo sick when I was really hyperthyroid--I had to take a FMLA from work for 5 weeks---there was no way I could work I was so sick at my worst--there had been days I could barely walk across the room without my heart rate zooming to 160-170's and I got chest pressure along with shortness of breath--just prior to my diagnosis I had been kicking butt at the gym and was in pretty good shape.  So anyways I have been on the PTU for almost 2 years and though literally I have been up and down with doses and hypo and hyper symptoms I think I am finally set with my dose at 75mg twice a day. (I had been on 50 mg three times a day but that afternoon dose was hard to remember while I was working so it my endo ok'd it for me to try the 75mg twice a day--he had wanted me to take 100 mg twice a day because it was "twice" a day but I wasn't too keen on taking a higher dose  and if it meant that then I would stick with the 3 times a day dose of 50 mg--so far it has been good for about the last 6 months)  I don't think anyone can ever get use to the bitter taste--it's awful--my husband use to say "it can't be that bad."  It's worse than bad--I told him it tasted like what  fresh tar on the road smells like--if that makes any sense--lol. So anyways--tough decision for your guys "to keep the thyroid or not."  Apparently my eyes are ok though they did  get that scarey look when I was very hyperthyroid.  I told my husband they were gonna sign me up for the next Stephen King (writer of scarey books/movies) movie my eyes were so intense looking.  Since my hyperthyroid is under control my eyes look much better--thank you God!  Also when I was very hyperthyroid I know I felt my eyes were gritty feeling and they use to tear up a fair amount--so I do personally feel the need to be mindful of them and keep my regular eye appointments.  So anyways --see there are many of us out there belonging to the club that no one wants to belong to--but it could always be worse--at least it is treatable--not curable but manageable.  Have a great day :)

[joyrrt]

Well searching for a new endo now, still no call back.

On a better note I found an eye Dr that comes highly recommended and she will even see me in a couple days.....In afraid it is the eye disorder my right eye looks much bigger now, at least I can still close my eye lid. My  fear of the surgery is getting less and less by the day and I am a big baby about that stuff.

No thyroid issues at all in my family.... lots of stress of the last 8 years. We adopted children from Russia (older children) and things were very rough for a long time.... finally better,now this crap. Go figure.

I have a friend that is going through breast cancer and I y to be thankful for the good things I have right now. I think I will feel better after finding out what the eye doc can do for me. She is my age and a pretty lady so Im sure she understands how stressfull it is thinking about what I will look like. Very vain.... I hardly worry about the potential liver damage now that one is bugging out. I keep reading everything I can get my hands on and I think surgery wont be far off, not going to do RAI now because of the eye thing mostly....

and OMG that taste of the PTU is sooo bad you are right I plan out how I take it each time and try to swallow food right after. I had no idea and took that first dose right before seeing a patient and I thought I would throw up on them ...lol needless to say I had to run out of the room and looked like a freak running to the nearest water fauset.
Im going to ask to be put off work again until I get this eye pressure under control, plus if anyone says anything to me about it I cry like a great big baby!!!
Oh and about the heart pounding at night my cardioligist says to take half of my beta blocker when this happens, even though its not beating fast the hard pumping can cause a murmor and damage, not to mention who can sleep when you can even feel your heartbeat in your hair!!! lol
Thanks again for your reply :)

[Musela]

You're very welcome. :)

That is a bit more reassuring (about the co-worker who had her thyroid removed). I'm still scared though. LOL

Yes, they say stress makes it worse, but who wouldn't be? lol. I think stress is what started my Grave's, because no one in my family has thyroid problems. Of course, my mom never goes to the doctors so who knows. LOL.

Oh, no. I'm sorry to hear about your eye(s). Maybe it may just be allergies? When I was doing research on Grave's, I've heard that RAI would worsen the eyes thing and surgery would not make it worse.

PTU tastes reeeaaaalllly bitter and it'll stay in your mouth for a while. Even when eating. At least, it did for me. But after a while, I started to either get use to it or I would make sure that the PTU went down quick. I made a mistake when taking it the first time to let it sit on my tongue, and OMG! That was disgusting! I had to brush my tongue with toothpaste. haha!

I'm worried about my heart too. It's been skipping a beat for about 3 weeks now and the pounding is loud especially when I'm trying to sleep. That's been going on for longer than the skipping.

I can't believe your doctor hasn't called you back. You might want to find another one if you can. Your health is important to you, so it should be important to your doctor especially since you're paying for his/her services.

I will make sure to let you know how my surgery goes. :)

[joyrrt]

I work at a hospital and was talking to everyone from ICU docs to the pharmasists and I almost feel like just having the surgery myself, turns out a fellow co worker had the same thing and had her thyroid out (can barely even see a scare and you really have to look closely) and said she is perfect with her synthroid (just tired or losses hair if she forgets it). Im super scared of surgery but it would be nice to have the hyper part over with, my cardiolist said Im having some r sided heart fatigue?? Even though my hr is down now I may have damaged it from all the hard pumping and hitting hr's of 170.... I was perfectly healthy before and I would like to leave myself with functioning organs. I decided to not be so paranoid and take the ptu. Itching was worse with methimazole and worried my throat could close up, the taste was so awful about 15 minutes after ptu that I thought I would throw up... chewed lots of gum and seemed to help. took with food and seems ok tonight. I will try this for 6months maybe a little longer but I think thats my limit.
And another real treat.... lots of presure behind my right eye, bad headache and now I can tell that it is protruding, doc wont call me back....calling eye dr tommorow. Really worried about the eyes now, they say even with surgery you cant always stop this symtom.... all I can say is this *****!!
Im sure you will do wonderful with your surgery, I cant wait to hear that you feel better!!
They say stress makes this worse but really how is one not to stress out??
Thanks again for your insight and wisdom on this subject, Joy

[Musela]

If your body can tolerate the meds, I would try that out first.  I know I did. I was even tempted to go back to methimazole, but I had a bad reaction of itching and hives. It even went to my face. Anyway...

I wouldn't say PTU is safer, but they do use it for women who are pregnant, because it doesn't get passed through the milk (or something like that). I think methimazole probably works better, but it seems a lot of people are either allergic or get the itchies. LOL. The doctors still have to test for liver count and white blood cell count when on PTU also.

I can't remember what my dose was when I was on methimazole, but it wasn't very high.

Thanks! I'm getting anxious about my surgery. I keep asking myself, "Am I doing the right thing?"

My doctor has me on a powerful dose of iodine to help lower my thyroid count since I haven't been on any antithyroid drugs. And I thought us hyperactive people had to avoid iodine. haha! He doesn't want me to go into a thyroid storm during surgery. That's scary. :O

I'm taking 50,0000 IU of vitamin D (a week), 500mg of calcium a day, 1000mg of L-carnitine and 6 drops of iodine 3 times a day before surgery.