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?.

[Sedreaka]

Dec 28, 2016 i went to my local ER and found out I have Graves with a hyperactive thyroid! It landed me in ICU for 3 days because my blood pressure was so high and heart rate soared 220 beats p.m. I've been on methimazole 2 tablets 10 mg a day twice a day.. after being on the meds about 2 weeks I woke up one day with itching and hives so bad I went back to the ER and was given Benadryl and prednisone and Zantac. My Endo whom I met in icu I'm scheduled to see her for the 1st in office visit in 2 days but she has already expressed to me surgery is gonna be my only option because my thyroid was inflamed at my ER visit that it was somewhat blocking a little of my airway.... how long was your wait time until the dr did your surgery? Why was surgery your option? And do u still itch after the thyroid is removed? (I also take propranolol 60 mg tablet every 8 hrs) If anybody reads this I can tell u that rubbing Lemon juice on my skin helped with my itching I would cut a lemon rub it on the itchy spots let the juice dry and it did soothe it,  I also read that baking powder works in a tub of cool water to. The itching seems to move around also and be on the palms of my hands so Benadryl has been my friend sometimes it takes 2 tablets to work on the itching. I would love to communicate with u via phone or email ***@**** I have so many questions and would love to hear more of your story after having surgery completed and what's to expect exactly btw im a 34 yr old female wiTh 4 kids

[Rustytooth]

  I've been reading the past threads because of possible reactions to methimazole.   This is the 4th week .  Last week I was getting body   "pings" and a low grade fever every day in the afternoons.  My Dr.  was on vacation, so I was refered back to my regular physician to have my blood checked.  I was told that there could be issues with my immune system and I wanted to have the white count checked.   While waiting for results the fevers lessened each day and are one gone.   The blood was normal, but now in the afternoons I'm getting itching on my palms but no noticeable rash.   That has been for a few days now, but it seems to be tapering off.   My Endo comes back on Wed.  so I hope to run all this by him soon.   I'm hyper with Graves.   It was interesting to find my reactions are shared with some others here.  Has any one had mild reaction to the drug and just stayed with it rather than switching or going right into the other options of surgery or radiation?

[Talzberz]

Thank you so much for this thread and all of your experiences.  I too was diagnosed with Graves Disease without getting the Uptake exam.  

My lab workup:

TSH <0.005 Low uIU/mL  normal range: 0.450-4.500 01

T4,Free(Direct) 5.83 High ng/dL     normal range: 0.82-1.77 01

Thyrotropin Receptor Ab, Serum 21.11 High IU/L  normal range: 0.00-1.75 02

My doctor right away prescribed Methimazole and within three weeks of taking 10 mg 2x a day I broke out in hives.  I reached out to the my endo and asked him what the story was, he told me to stop the Methimazole, but the hives persisted the next two days.  When I reached out to him about the continued hives, he said "guess its not the methimazole you can go back on that". It was only after researching the web myself and finding YOUR thread that I realized that it can take several days after stopping the meds for the hives to dissipate.  Needless to say, I will no longer be working with this particular endo and have found another doctor.  My appt with the new endo isn't until May 7th (2.5 weeks from today).  I was on Propanolol as well (beta blocker) but my primary told me to discontinue because it could also be causing the hives.  My primary put me on Prednisone and I'm a bit concerned cause its warnings are against people with thyroid disorders (she knows I have graves disease). I have a BP and pulse machine so I've been monitoring everything (BP 110/73 and heart beat 79).  BUT if you have any suggestions re keeping calm until my appt on 5/7 I would greatly appreciate it...

Also if you think that I should insist on an uptake exam please let me know... the last endo seemed pretty sure of himself, and walking into my appt on 5/7 I want to be the most prepped and knowledgable about this disease and diagnosis.  I'm also curious as to how you feel about your surgery now... 3 months later.  I know that there is a chance that my only other solution besides PTU is surgery (the last endo though that i might have to see a specialist on TED).

Any supplement recommends are also appreciated!!

Best,
Tali

[Johnny1971]

Hi merrisa90,
I could not sleep last night because of the itching, no welts or hives, but the itching was out of control and I'm only on 15mg of methimazole a day going on my third week.  All my hyper symptoms were controlled by the second week and my Endro was surprised as my TSH was 0.006 and T4 was high.  The day before I started on methimazole my heart rate shot up to 200 ppm while playing soccer! I started taking Motherwart supplement drops at the same time a started my meds (1/5/14), and lemon balm tea at night.  I believe this has helped me with my symptoms. I told my Endro I was taking Motherwart drops and he told me to stop taking it. I asked him, "why" and he seemed bothered that I asked that.  He said that it might interfere with the meds. If it seems to work, I'm not going to listen to him. I finished the motherwart and bought Thryosoothe supplement from Amazon. It contains bugleweed, motherwart and lemon balm.  I just started taking this supplment last week along with vegi juicing.  I'm hoping this will speed up my recovery and put me on remission soon so I can be taken off the meds! You're not alone. Wishing you a fast recovery.
Johnny

[Musela]

Hi, merissa90,
When my thyroid started to become hyperactive again after being off PTU for a few months, I did start to get restless nights and hardly could get any sleep. I kept waking up in the middle of the night and I also started to get an irregular heartbeat. Pounding loud too.

Every hyperactive symptom I had when I was first diagnosed and then some came back. I lost a lot of weight, hot all the time, sweating, high blood pressure, trembling in the extremities, muscle weakness, irregular heartrate, dry hair, loose stools and going more often, etc.

Even though my thyroid is now gone, I still have Grave's. It'll never go away, but now it doesn't have a thyroid to mess with. I'm on Synthroid and I seem to be doing ok. I no longer have any of the hyperactive symptoms, but i noticed that my hair is falling out more than usual. Not sure if it's because of the synthroid or I'm still tryiing to get dialed in on my meds, but it's a little disturbing. Not sure why doctors only measure TSH after surgery, but before surgery it's every thyroid hormone in the book lol. All the other thyroid hormones are still important too. Anyway...

You're not alone. :)

[merissa90]

I was diagnosed with hyperthyroidism last october and also graves disease. Im 23. I have had all the test ur both talkung about. I was also on the highest dose of methimazole three times a day. I also have the itching of the skin that i hate, but thanx to yall i now know why. I also went into remission from feb untill about  two weeks ago. I hate this and i dont take it well, meaning this desease. My hair, attitude, eating habbits, blood pressure and many more problems are back. Also would like to no if anyones sleeping habits get affected by this. Im restless and just cant sleep anymore

[kiki201013]

Thank you all for sharing. I thought I was the only one having thyroid disorder. I have hyperthyroidism, so, I'm taking methimazole 1tablet/day since early September. I didn't have any side effects till two days ago that my skin starts playing on me, rash and itching. I've been taking hot shower to calm down the itchiness.
I called the doctor and he told me to stop taking it for two days and retake it and see what will happen, if the rash comes back, I will have to take different tablets.

I'm just wondering, do any of you have problem with your eye-sight? Mine is unstable, one day it'd be clear and another day it'd be so blur.

Kiki

[Musela]

Hi, Everyone!
I wanted to post an update on my TT (surgery). I'm sure I'm in the wrong thread, but I wanted to share since we have all been together for this roller coaster ride with being on methimazole or PTU.

I am now 5 days post op. I feel okay, neck's a little sore and the skin around the incision is taught so it makes swallowing a little uncomfortable. My surgery went well. It took 4 hours for the surgery and 2 hours in recovery. It was outpatient so I was home in the evening. My great surgeon did not damage my vocals cords and I have not had any problems with calcium levels even though my doctor/surgeon has placed me on 500 mg of calcium 3 times a day. I will be tapered off on my month follow up. I do have a slight mucous build up in my throat and have to clear it a few times, but I think it's from the breathing tube that was inserted.

He has me taking .88 mcg of Synthroid. Since my numbers were almost in the normal range two days before surgery, he had me start taking synthroid 3 days after surgery. My follow up was 2 days after surgery and my incision is healing nicely. I need to do some neck stretching excercises so I can swallow comfortably. LOL.

My head feels like when I've slept for too long, but I also have allergies going on at the same time so I don't know if it's even related to my thyroid being gone. I do get times when I feel hot so I'm not sure what's going on. I also still have a slight irregular heartbeat. Maybe more of a flutter. Not sure how long a person's natural thyroid hormones stays in your system.

Other than those things, I feel good or like I normally would with allergies going on. LOL. And I'm also able to sleep without waking up in the middle of the night 3-4 times. :)

joyrrt - how are you doing? Is the PTU still working out for you?

[yankeeRN]

Hi joyrtt and musela,
I was able to exercise once my heart rate was under control but I had to take baby steps because for me my activity tolerance went to zip and I had muscle wasting. Like I had said in my previous post--prior to all hitting me like a ton of bricks  I was kicking butt at the gym with lifting weights and also doing 1.5 hr of fairly intense aerobic activity 4 days a week.  That summer I started to notice that the weights I was lifting seemed harder to lift and I hadn't gone up on the weight I was lifting--I also noticed that after my aerobics I was exhausted where as before I had felt great.  Once I was diagnosed and stopped exercise for safety reasons with my heart I got progressively weaker---a gallon of milk took 2 hands to lift---walking down stairs my legs would sometimes buckle--it was crazy.  I would also get chest pressure where it felt like an elephant was sitting on my chest when I was just walking--I would get very rapid heart rate etc--I was a "shipwreck."   So that's how bad I got and that is why I needed to start back with babysteps.  Once my rapid heart rate was better controlled I went out and bought a pulse oximeter--it is a device that goes on your finger and tells your heart rate and oxygen level.  I used it to tell my heart rate because it was a pain to have to count it while I was walking--I could just tell at a glance what my heart rate was.  I started walking in my house and watched my heart rate.  Once my heart rate was ok with the short distance indoors I ventured outdoors with my husband .  I didn't dare walk by myself even a short distance just in case I couldn't make it back because of chest pressure or high heart rate plus it gave me anxiety with all I had been through.  I walked down the street and back and once I felt ok with that I did that 5 or so times a day by myself and then after a few days I increased with my husband at my side while continuing to monitor my heart rate.  The md didn't want it above 100 to 120 max.  I gradually increased my distance till I was at about 3 miles and not at sonic speed either.  At this point I was still out of work and could only return when my md ok'd it.  I do a lot of walking in my job so being able to walk  a little distance before I went back to work was essential.  My doctor also only would allow me to do half days--this I was not too pleased with but I went a long with it and I was glad because I was exhausted after only 6 hours for 2 weeks then after that I went back to my usual 12 + hour shifts--my coworkers were very understanding and easy on me while I was getting back into the swing of things.  I can now pretty much do anything for exercise and I tolerate it well.  One thing not related to exercise tolerance I wanted to tell you both is that while on the antithyroid med (PTU for me)  you still do need to be aware of symptoms of hyper and even hypothyroid.  At one point in my treatment I went towards the hypo side from the PTU and I felt like the life had been sucked right out of me--I didn't feel anything --sometimes I cried for no reason--so not like me--I could barely function.  I had to get my md to run more lab test and and my results were on the hypo side from the PTU  (but not per the tsh)--my md had me cut back on my PTU and it improved but took about a month.  So be watchful of changes in how you feel and speak up to your md.  Musela sounds like you don't have much choice except to have your thyroid out--gotta do what you gotta do.  There is hope in all that we all have gone through and  there are many more people in this world who are much sicker than us--at least we can be managed.  I have found this thyroid forum was my lifeline when I was at my sickest--no one else truly understood what I was going through.  I even got weird looks from some people when I tried to explain my symptoms and they would tell me that the thyroid doesn't do that--even my md didn't equate some of my symptoms to thyroid. I am here to tell you that the world is clueless to our thyroid issues--I plan of educating them--one person at a time!!

[joyrrt]

Thanks that is encouraging!!! I really want to walk and tone up.... after my weight loss lol. but it really has stopped now, I have stayed the same for the last couple weeks and my appetite has come down a bit too. I hope that that is a good sign. ;)

[Musela]

Joy,
I was able to work out once my thyroid started to slow down. Even before I got to euthyroid, I was able to start working out. Just take it easy at first. I was working out to Insanity and P90X before I knew it. LOL
It'll get better. I'm sure it will. Just keep taking the PTU and make sure to keep an out out on your lab results for your liver and white blood cell count.
Wishing you a speedy recovery and remission. :)

And dangit, why can't I keep the eat-what-I-want and lose-weight symptom? LOL

[Musela]

Hi yankeeRN,
Thanks for sharing what you're going through. I wasn't as bad as you when I was diagnosed, but I did have the shaky extremities. Even when I was driving, my leg would shake holding down the break. I had the profuse sweating, and a slight irregular heartbeat and also would go to the bathroom more often. My irregular heartbeat would speed up when I inhaled and slowed down when I exhaled. It wasn't very fast. It was about 65-70 bpm. And my blood pressure was normal. I also had weak arms and legs.

I was diagnosed in Jun of 2008 so it's been a while, but I was having the symptoms since I was in my late 20's. I'm 41 now. So that tells you how long I've been undiagnosed.

I was on methimazole for about 3 weeks and had to get off of it because of rashes and hives. Then the endo put me on PTU. I had been on PTU up until Jan 2013. I started to feel the symptoms of hyperactive thyroid around May 2013 so I started to take PTU again (under the suggestion of my endo). Well, I had to stop I kept having fevers every other day, and about 3-4 times a day. I stopped taking the PTU and the fevers stopped. So now my only choices were RAI and surgery. I thought about it for awhile. I even wanted to try going natural, but without the support or the means of finding a doctor who will try a natural way, I was left with those 2 options.

I refuse RAI, because if I don't have enough antibodies going through my thyroid, it would probably take more than one dose. You also cannot be around people or pets for a about a week, etc, etc. Not to mention, what other organs RAI could affect. I've heard of people who have problems with lymph nodes, taste buds and salivary glands due to RAI. Plus, having to wait 3-4 months before they find out if it has killed my thyroid completely would be hell. Can you imagine 3-4 months of up and down thyroid hormones until your thyroid dies? :O

I chose surgery. Thyroid out = hypothyroid. So now I will have to take a hormone thyroid for the rest of my life. There are risks with surgery too, but the benefits outweigh the risks. I hope that the synthroid I will be on will work and I also hope that the surgery will be a success. I want to be able to talk and absorb calcium normally. LOL

I heard remission is possible and I hope you are able to get there. Unfortunately for me, it wasn't possible. I could wait until my thyroid burns out? ... but I might burn out before it does. LOL

Good luck :)

[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.

[joyrrt]

Hi There,
Thanks so much for your reply, I hope everything goes well with you and your surgery! Ive had people tell me maybe I should just get the surgery and be done with it. But since this is just the beginning I feel I need to give the meds a try but sure feels like I will be to surgery in the end, it just seems like it is inevitable, at least from what Im reading so far.
Well Dr. didnt seemed thrilled when I asked what he thought about first trying to decrease the dose and take benadryl but when I told him that other than the itching I was really feeling better and my symptoms were going away he decided to lower it to 20mg methimazole once a day instead of 20mg twice a day to equal 40Mg. I read something that said you should take it 2 or three times a day so I asked about 10mg twice a day and the reply was "no". Also told me ptu was safer?? why try me on Methimazole if thats the case.
Well I took my 20mg and felt fine for most of the day but itchy and burning skin is back.... taking benadryl and it seems like I can handle it for now!!
I just don't know if Im being paranoid... maybe I should give ptu a try, I go for labs next wednesday. Gonna see if I can hold out till then.... meanwhile this bottle of PTU is on my desk staring me down....lol.
Thanks for the info it sounds like you have went through a lot I will pray that your surgery goes perfectly for you. Please keep me updated on your progress, it really helps!!! Take care, Joy

[Musela]

Hi, Joy,
Glad we were able to help. :)

It's funny how each doctor is different. My doctor told me when I first got diagnosed that I had a 15-20% of going into remission. Then when my numbers got down to where I needed to be, he told me I had a 50-60% of going into remission. I think he had it at 15-20%. LOL.

I had the same reaction to methimazole. It started happening around the 3rd week I was on it. My endo told me I was allergic so he switched me to PTU. Then he told me that I had a 50% chance of being allergic to that too. o_O But nope, I did not get sick or broke out in hives. Sometimes I think they like to make up stuff. But I did gain some weight once I started to slow my thyroid down. LOL

I hope it works out well for you. Have you tried taking some benadryl to help with the rash and hives? It was working for me, when I broke out in hives. I've heard that when you're on methimazole they also have to keep a watch on your liver too, but I could be wrong. I've been researching so much about Grave's that sometimes my information gets all jumbled up.

Best of luck to you too! :)

[Musela]

Sorry for not replying sooner. I've been busy and I now have a date set for my surgery. It's pretty sad when I'm more scared of getting fat after the surgery than I am of the surgery. LOL (nervous laugh).

If the methimazole is working, you should start to feel some relief soon depending on how hyperactive you were. Of course, if you're getting serious side effects from the methimazole, you may have to switch to PTU, but it will be up to you and the doctor to make that decision.

Surgery is set for the 14th of this month. I'm hoping everything goes well - Surgery and me adjusting to synthroid. :)

I hope you are feeling much better. Let me know how it's going.

[joyrrt]

This has been the most helpful website I have found and has really helped me. I have been taking the Methimazole 40mg for my newly diaganosed graves for three weeks now and broke out in itchy skin that turns red and develops welts when I scratch it, then goes away and moves to another spot. Called my Dr. and he wants to switch me to PTU. I am terrified of that drug my liver enzymes are already high due to the graves and the liver failure that can come wit PTU is very scary. The Methimazole has worked great in just 3 weeks I have cut down on my atenolol (beta-blocker) I had all the symptoms including hr of 170 at times now 68 and bp has come down from 200/98. so shaky and nervouse all the time, along with wanting to rip my clothing off because I was so hot. Thought it was early menopause since Im only 41, and yes the weight loss is the only good part. I had to be off work for 7 weeks while I waited to get into an endocrinoligist. I would like to try to stay on the methimazole if I can tolerate the itching. My doctor says 70% chance of remission within 6 months and he never brought up surgery. Im going to call him and see about staying on current treatment. Thanks so much everyone and best of luck to you all!! Joy

[Newtograves]

I'm sorry to hear that. It is very sad.

I understand completely about your decision and why you're tired of these symptoms.  Unfortunately, I have not received any relief from my symptoms while on methimazole. I have tremors, weakness, rapid heartbeat, exhaustion, insomnia, heat intolerance, anxiety, nervousness, shortness of breath, stomach pain, etc. The medication has added nausea, itching, and rash.  

I will have bloodwork done on Friday and I think my doctor will increase my dosage of the medication if my levels aren't better. Which I am afraid of because I don't want the side effects to get worse. I'm really tried of trying to fix one thing and here come more problems. It's been so frustrating just trying to get better.

I'm hoping that I just need to take the medicine longer to feel some relief. I'm only on my third week of taking it.

I wish all the best with your surgery.  I've heard that you will become hypothyroidism and you'll have to take Synthroid to replace the hormone. Sounds a lot better to take a supplement than these ATD's that cause a hosts of problems.  

I hope everything goes well. :)

[Musela]

I tried to get another endocrinologist, but no one was taking new patients unless I was referred. Pretty sad, isn't it?

I'll probably have surgery in about a month. Someone from the endocrine surgical office is suppose to call me within the next 2 weeks to set up an appointment to talk to someone about the surgery and then if I decide to get it done, they will schedule me.

I do hope that I'm doing the right thing. I'm so tired of all these hyperative symptoms, but I'm also afraid that I'll be going through some hypoactive symptoms once my thyroid's out. I've heard success stories and I've heard awful stories. Knowing my luck, it'll be the latter. LOL...

Thanks for the encouraging words :)

How are you doing with your symptoms? Are you still getting rashes/hives from the methimazole?