Methimazole & itching

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?.

[graveswoman]

HI

the same happened to me, the welts are hives which usually means you are allergic to med? they started after i had been on methamazole for a couple of weeks. called doc and she switched me to PTU, still had itching for about 3 weeks PYU, but with benadryl i could manage, the itching finally went away on PTU. Call your doc, you do not have to wait, the med came with side effects and when you should call or stop med, i believe hives was one of them. My hives lasted for about 3-4 days after i was taken off of methimazole. did a lot of aveeno baths and tried to stay as cool as possible. heat seems to exacerbate the hives.

don't suffer, put in a call to doc

(I was on a higher does than that tsh was 0.00 and ft4 was over 15.)

Hope this helps

graveswoman

[Musela]

Thanks. I'll go in for my labwork tomorrow morning and ask to speak with the doctor. I'm afraid he's going to try and convince me to do an RAI or surgery. I don't want that. At least, not yet.  I have a feeling I'm going to have to get a 2nd opinion. He didn't seem very forthcoming when it came to answering my questions, and he was very quick to diagnose me with GD on the first visit (consultation).

[Marian50]

I took PTU for about 6 years with no side effects.  It worked great.  My doctor had originally told me that RAI was the best option and I said no way because it felt too permanent.  Your doctor can't force you to do anything you don't want to do.

My throid is now hypo and I'm on synthroid.

[graveswoman]

Did you have a thyroid uptake scan, that is the only way they can diagnose you with graves. I am going to give the PTU a shot, worth seeing if it can put me in remission. t3 and ft4 already better, goiter has not decreased in size and tsh hasn't moved yet, but doc says it is the last to get to normal. So more blood in september and hopefully that will start moving. takes awhile. once that comes up, they wean me off the PTU and see if I can go into remission. PTU has some side effects (like most meds) that need to be watched, so doc should order CBC every other blood draw to make sure all ok. good luck, your choice, but without a uptake scan you could have thyroiditis, or something else.
good luck!

[Musela]

I just saw my doctor and he went ahead and prescribed me PTU. Except he says that since I was allergic to methimazole I'll have a 50% chance of having an allergic reaction to PTU also, but I had to try cause he's seriously trying to push for RAI or surgery. :( I don't want any of those especially if I have Grave's. Thanks for you input.  I hope PTU will work for me :)

[Musela]

I just saw my doctor and he went ahead and prescribed me PTU. Except he says that since I was allergic to methimazole I'll have a 50% chance of having an allergic reaction to PTU also, but I had to try cause he's seriously trying to push for RAI or surgery. :( I don't want any of those especially if I have Grave's. Thanks for you input.  I hope PTU will work for me :)

[Musela]

No, he never did a thyroid uptake scan. He diagnosed me just seeing my TSH & FT4 results from another clinic, and that is why I don't trust him fully. He's prescribed me PTU also. Hopefully, it'll work. Good luck with your remission.
I may have to start researching another endo in my area, cause I'm definitely not getting the fuzzy feeling from the endo I have right now.

[graveswoman]

seeing the TSH and FT4 he could only dianose you with hyperthyroidism and that is it, you have to have a thyroid uptake scan to see how your body absorbs the iodine in your thyroid. that is done over a 2 day period, you drink some radioactive stuff (or take a pill) then go back the next day and see how your thyroid reacts, you have to stop all meds during this time and not eat anything like shellfish etc... they tell you what to avoid.
Is this guy an endo or a PCP? My PCP had no clue. Kinda scarry that I new this and he didn't.

Not in remission yet, but hope to be by next May/June (usually take a year, may when i was diagnosed and june is when i started taking PTU) some people take longer, some shorter, and some never. so we will see. I would see out another endo. remember i still itched on the PTU for 3-4 weeks after starting it, but that is gone. and no hives!! thank god that was horrible. So good luck, I believe these are the only 2 meds they can give. so let's hope it works. I have TED also another graves downfall. I think you said you didn't have that. I also have a goiter.

Did he put you on beta blockers, for fast heart rate, that is another med that is a must if you indeed have graves, until the PTU starts bringing your levels back i check.

ok good luck.

check in once in awhile.

graveswoman

[Musela]

My doc is an endo, but he's so quick to say it's best if I got the RAI, but he did not question me when I told him I wanted to try the PTU first before making such a rash decision. I tried to call another endocrinologist in my area, but they aren't taking new patients unless I was referred. Now how stupid is that? but anway... I'll keep trying with this endo since he's actually being patient with me.

He just prescribed me metoprolol for my high blood pressure and fast heartrate. Course, I didn't start getting the fast heartrate until 4 days ago. I'd wake up breathing so heavily and shallow like I ran a marathon. I checked my pulse this morning and it was 113 bps. He's also told me that if I get hives or a rash with the PTU he wants me to call him so we can talk about the other options. I'm hoping PTU will work.

wow, 3-4 weeks after??? That would drive me nuts. Were there hives too or was it just the itching? I can handle the itching, but the hives have got to go. He's prescribed me a steroid for the inflammation, but he said only if I can't bear it. I told him benadryl has been working ok for me so he said to keep taking it.

[graveswoman]

NO, NO HIVES. I was going crazy, try an aveeno bath that helped me.

The itching slowly dissipated so that it was just at night after the first week, and got less and less and the 3-4 weeks went on. I am only on PTU for 5.5 weeks now. so only slightly ahead of you.

I could not get an endo appointment in  my area until october. so since heart rate was so high they sent me right to boston and got me in  with one there. thank god, i would have gone crazy by october.

I am weaning off the beta blockers now, since PTU has kicked in. and have gone from 4 baby aspirin a day until 1. I can now go back to exercising. (oh yeah stay away from anything that will raise your heart rate until it comes down). You should get the thyroid source book by M. Sara Rosenthal. great book with a lot of answers.

My doc said a lot of doctors are quick to say have RAI, but if you can get your graves (if that is indeed what you have???) under control and in remission, why not, then you do not have to take a synthetic drug for the rest of your life because your thyroid isn't working anymore?

Just a thought.

He works for you so if you are not comfortable with RAI, some people can stay on PTU for years. start another forum asking that, you will be surprised.

take care,
graveswoman

[HyperT77]

I was diagnosed with Graves Disease last October.  I did have some itching in the beginning but it went away.  The welps/hives are a side effect of the Methimazole.  Call you doctor.  The Endo initally started me out on 60 mg a day or Methimazole, then 30 mg a day, now I'm on 45 mg a week.  I go in every 4 weeks for lab work.  

This disease takes a while to get under control.  Not fun a times but this is a great website to come to for support and information!

[graveswoman]

Just saw this and thought of you…

by Mark Lupo, M.D., Jul 20, 2008 01:53PM
Documenting that there is uptake is preferred before exposing someone to RAI.  If there is low uptake, it won't likely work...

This means you should have the uptake scan to make sure it is graves. My friend has HYPO but is currently in a hyper stage while trying to get her medication adjusted. Do a lot of research.

[Musela]

I saw my doctor this morning and he has prescribed PTU now. He says that I was having an allergic reaction to the methimazole so I had to stop taking it. My itching was also accompanied by welts.

Thanks for you input. :)

[Musela]

I have another appointment on the 7th of Aug and I will try and convince the doctor to do an uptake to confirm if I have Grave's or not.

I've been trying to do a lot of research, but my husband now thinks I'm getting a little too possessed with my hyperactive thyroid diagnosis.

Having this problem sure does test a person's patience. And I can tell I don't have much of it.

Thanks for all your input.

[graveswoman]

You are sooo welcome got a lot of answers myself from generous people taking their time to help me.

glad you are asking about uptake

my husband thinks i am a nut too. but it helps when i see that others are going through the same things.

good luck on PTU I am praying it doesn't give you welts either.

also good luck with doc hope he listens. I am not a doctor but have ready many places about the diagnosis of graves with the uptake, i would hate for him to take out a healthy thyroid.

[Musela]

That is so true. If I have GD, why take out my thyroid, right? The thyroid is not the problem. It's my immune system. Though my thyroid is a little swollen, but not by much. I can't see with my neck straight, but I can see the outline when I tilt my head back. It doesn't look asymmetrical.  lol

Yes, I'm hoping PTU will work for me. I'm trying to keep a positive outlook. Though I will be very dissappointed if I am allergic to PTU also, because then, I only have 2 more options. T_T

I'm going to try not to worry so much between the time I see my doctor and now. It's definitely very tiring. :)

Thank you again <3

[898]

The most reliable diagnosis of Grave's disease to check for TSI antibodies which are present at 80% of Grave's patients

[898]

Article By E. Moore

L-carnitine for Graves' disease
An Effective Natural Treatment for Hyperthyroidism


Jan 20, 2007

L-carnitine effectively inhibits the activity of excess thyroid hormone and reduces symptoms of hyperthyroidism.

Studies dating back to the 60's in animals and recently in humans suggest that the amino acid L-carnitine blocks the effects of excess thyroid hormone in some of the body's tissues. L-carnitine does not affect the thyroid gland itself but effectively reduces symptoms of hyperthyroidism in the autoimmune hyperthyroid disorder Graves' disease. The primary effects of L-carnitine are on the activity of thyroid hormone. Specifically, L-carnitine blocks the entry of excess thyroid hormone into the cell nucleus of liver cells, neurons (cells of the brain and central nervous system), and theally associated with hyperthyroidism.

Overall, study results show that the addition of 1-3 grams of oral carnitine daily is an effective tool for reducing symptoms of nervousness, heat intolerance, insomnia, emotional instability, tremors, and excessive sweating in hyperthyroidism. Used alone or in conjunction with anti-thyroid drugs or alternative medicine, L-carnitine is a welcome addition to any program used for the management of hyperthyroidism.

Physiological Effects of L-Carnitine

L-Carnitine's effects are related to its ability to inhibit the entry of both thyroxine (T4) and triiodothyronne (T3) into the cell nucleus. This is important because entry into the cell nucleus is essential for thyroid hormone to cause the effects commonly associated with hyperthyroidism. In clinical observations, L-carnitine reduces effects in both mild hyperthyroidism and in the severe form of hyperthyroidism known as thyroid storm.

Studies showed benefits starting with the second week of treatment using 2-4 grams of L-carnitine daily including reduction of goiter size, I-131 uptake, liver enzyme levels, and an improvement in eye symptoms including ophthalmopathy. In addition L-carnitine has a beneficial effect on muscle function, strength, and bone mineralization.

Because hyperthyroidism depletes the body of L-carnitine and other nutrients, doses of L-carnitine as high as 4 grams daily are not associated with toxicity, teratogenicity (effects on offspring), contraindications or interactions with other drugs. A naturally occurring substance, L-carnitine is a known protector of mitochondrial function in the body's cells. Studies of patients with both hypothyroidism and hyperthyroidism show decreased levels of L-carnitine in muscles. These deficiencies are known to contribute to muscle fatigue in both conditions.

In one study involving 50 patients with hyperthyroidism, L-carnitine caused mild nausea in two patients during the first week of treatment. These symptoms did not require a discontinuation of treatment, and they subsided within a few days. L-carnitine caused no significant alterations in blood counts, serum proteins, bilirubin levels, blood sugar levels or urine chemistry levels.

L-carnitine is best absorbed when used as a supplement containing L-acetyl-carnitine. L-acetyl-carnitine is available at most health food stores, and is effective for treating hyperthyroidism related to Graves' disease, toxic multinodular goiter, and the excessive use of thyroid replacement hormone.

Resources:

Salvatore Benvenga, Rosaria Ruggeri, Antonia Russo, Daniela Lapa, Alfredo Campenni and Francesco Trimarchi, Usefulness of L-Carnitine, a Naturally Occurring Peripheral Antagonist of Thyroid Hormone Action, in Iatrogenic Hyperthyroidism: a Randomized, Double-Blind, Placebo-controlled Clinical Trial. The Journal of Clinical Endocrinology and Metabolism, 86(8); 201:3579-3594.

Salvatore Benvenga, Antonino Amato, Menotti Calvani, and Francesco Trimarchi, Effects of Carnitine on Thyroid Hormone Action, Annals of the New York Academy of Sciences, Nov 2004, 1033:158-167.

Stephen DeFelice, Carnitine for the Treatment of Hyperthyroidism and Carnitine and Thyroid Hormone, A Potential Treatment for Obesity, The Foundation for Innovation in Medicine, Nov 1, 2002.

[Swede88]

I was diagnosed with Graves 2 months ago.  The endo put me on methimazole  3 pills every morning. He told me that this should "cool down" my thyroid and then we would do the RAI.  that was fine with me .   After my next blood test and a month on the methimazole, he cut me down to 1 pill and felt we should try 2  more months of that.

This is affecting my quality of life and my job.  I am sleeping about 2-3 hours a night so I am constantly exhausted, I have gained about 30 pounds, and I have 0 tolorance for heat (this does not bode well since summer is upon us).

I want to have him simply do the RAI and get on with it.  I have no patience, am contantly irritable and have anxiety attacks frequently.  It doesn't help that my company laid off 150 employees in the last month.  

In reading the above comments it appears most are agains the RAI treatment..... why?  I have spoken to anumber of others I know that said this was the best thing they had done.......

new to GD

[Musela]

Hi, Swede88,
Sorry for the late reply... but in reply to your concern for RAI, I really don't have much experience with that because I am doing fine on PTU. Right now my doctor has me on 125mg (total) twice a day so RAI has not been considered due to the fact that my Thyroxine total is only 11 mcg/dL (mean is 5.0-10.8 mcg/dL). Fortunately, it has been steadily going down.

I've heard both bad and good things from people who have had RAI. Some say it worked well for them and some say that it it has been nothing but a big mistake. Most of the ones who say it has been a mistake is because they can't seem to dial in their synthroid meds to regulate their bodies. I suppose it just depends on how well your body reacts to the medication and/or treatments after RAI.  

I know what you are going through. I had the heat intolerance, but I never had problems sleeping or the fast heartbeats before I was placed on methimazole or PTU. After being placed on the anti-thyroid drugs, I could not sleep nor could I catch my breath when my heart would speed up in the middle of the night. Makes you wonder if the "cure" is worse than the disease. lol.

Good luck in whatever you decide.

[Diane582]

Glad to hear fellow "itchers".  I thought I was alone.  Was diagnosed with Graves during a thyroid storm.  Was placed in the hospital where they regulated my heart with propranalol and Methimazole.  Had a horrible 3 weeks on Methimazole with nausea, vomiting.  Then the 3rd week I broke out in the traveling itches and welts.  Now on the 6th day and most is out of my system.  Have started the PTU so hoping I am not allergic to it.  

I do not want the RAI so I am hoping this med works.  I have no other alternative.  My endo is very abrupt, non-sensitive and only want to do the RAI.  

Luckily I do not have any eye problems with the exception of scratchy, red eyes which dissipate with eye drops.  

[Lrod5233]

Hi,
I can't explain how much better it makes me feel when reading everyone's experiences. I was first diagnosed with hypo in 2009, hashimotos, and a few years later I was diagnosed with hyperthyroidism. I was out on tapazole and 2 weeks later had severe hives covering my body. This morning they moved to my hands and face, ugh. I am switching to PTU next week, but I'm nervous the same thing will happen :(
I'm getting a blood test today, but if anyone has any suggestions please send them my way!
Thank you.

[Musela]

Wow, seems a lot of people are allergic to either Tapazole or Methimazole. So, why are you waiting to switch to PTU? Is that when your appt is with your doctor?

I was nervous also when I was switched over to PTU, but I've been on it for almost 3 years now. Hopefully, you will get some relief from the hives and itching soon. Try some benadryl to help ease the itching since you're not able to see your doctor yet.

I get my blood work done tomorrow for my 6 month checkup and then I see my Endo next week for the results. I'm hoping that he will start me on a lower maintenance dose or take me off PTU completely. We'll see. My appts for the past year have been between 4-6 month intervals so he seems confident that the PTU is working. But then again, he still keeps bringing up the "other" options. LOL. Maybe he gets paid everytime he mentions it? He does smile when I tell him I'll keep taking PTU and he doesn't push it any further.

I hope you're able to get what you need and I hope everything works out for you. Good luck