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Methimazole & itching
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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?.
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558632_tn?1303474725
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
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567228_tn?1318359066
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).
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Avatar_n_tn
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.
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558632_tn?1303474725
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!

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567228_tn?1318359066
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 :)
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567228_tn?1318359066
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.
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558632_tn?1303474725
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
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567228_tn?1318359066
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.
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558632_tn?1303474725
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
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550622_tn?1247660320
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!
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558632_tn?1303474725
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.

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567228_tn?1318359066
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. :)
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567228_tn?1318359066
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.
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558632_tn?1303474725
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.


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567228_tn?1318359066
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
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Avatar_m_tn
The most reliable diagnosis of Grave's disease to check for TSI antibodies which are present at 80% of Grave's patients
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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.

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Avatar_n_tn
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
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567228_tn?1318359066
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.
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Avatar_n_tn
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.  
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Avatar_f_tn
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.
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567228_tn?1318359066
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
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Avatar_f_tn
I know that this forum is old, but for future refrence, I too have those same "rashes/welts" dang these things are annoying!  My boyfriend cant even tickle me without itching and pain and welts.... This stuff bites big ones...

But I will now know to call my endo tomorrow thanks to you all for this help.  Thank you so much for this info!

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2076811_tn?1331850052
I too have the itching, it is driving me crazy!!  I wanna roll around on a cat post it is so annoying!  Does everyone's rash look like hives, because mine looks more like I broke out (I never break out so it HAS to be the meds), there is no redness or anything until I start scratching them.  I have it all over my back and chest.  My doc is on vacation, but the lady filling in for her told me to stop the Methimazole and take some benadryl and she would call me in the morning to talk options.  I guess I am going to try out the PTU because I am not ready for the RAI at this point, I want it to solve itself.  I am hoping I don't get any eye problems from this though, it is scary.
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Avatar_m_tn
Stacee and Yousei
I just started the hives and welts, just under two weeks of starting the methmazole. Im so itchy and irritated. I was thinking I would have stomach issues, and when I didn't right away I figured I was good! but reading through this thread you can get the hives up to weeks after starting. bummed. I see everyone reference the PTU, what is that? I'm really new to this, diagnosis with Graves is only weeks old. I'm going to get that book, the Thyroid Source, and I do a lot of web searching also. I'm thinking PTU will be the alternet meds for the methmazole I'm taking now. I dont know any one personally who has it, this forum really helps. Thanks.
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Avatar_m_tn
I had a radio-iodine uptake 6 months ago.  My Doctor emphasized that he was going to order a  minimum dose.  Well, after 6 months, there was no improvement.  I was them put methimazole, and in a few days time developed the most awful rash and itching that you can imagine.  I've decide not to opt for a long protracted treatment with drugs.  I will ask my Endo. to give me a second RAI.  If it destroys my thyroid, that's fine with me.  I'll just have to take relatively safe hormones  for the resultant hypothyroidism.  Hypothyroidism is easier to treat than hyperthyroidism, and I won't be taking drugs that can destroy my liver or drive me up the wall with all kinds of side effects.  Another reason for not going on a long protracted regimine of drugs is that over time you can develop A-fib.  THe last thing I need is a heart problem as well.
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I got here researching the dreaded hives at week 3 on Methimazole.

First I want to thank all of you for your helpful post.

I'm a 30 year old male that was diagnosed with Graves 3 weeks ago. I've lost about 50lbs this past year and finally went to see a doctor. Stubborn I know. Prior to my first ENDO visit my heart rate was at 140bpm resting. Heat intolerant and all the other bad stuff you guys put down. I had it.

I too chose to try and level my thyroid with pills. I was under the impression I would only be on Methimazole for no more than 2yrs.

It's a bummer to learn that some of you have been on it longer. Has it worked? Should I just literally cut to the chase and have my thyroid taken out? I'd rather do the surgery than RAI. I'm so against anything that will kill a part of me. I can't help but think what else it can damage.

I have now been on 60mg of Propranolol per day. I'm also taking 30mg of Methimazole every morning.

I was feeling better than I have felt for about a year. It took about a week to kick in. Now on week 3 I have developed hives all over my body. I had to go in to the ER and have them checked out. I was sure it was one of the pills that I have been drinking and I mentioned it, but they said it might have been some coconut water that I have been drinking. CAN YOU BELIEVE THAT?!? Coconut water.

I was prescribed prednisone 20mg 4x a day, Pepcid 20mg 2x per day and Benadryl 50mg per day.

I contacted my ENDO and was told to continue my Methimazole and Propranolol as usual. She mentioned that if I broke out again to just take Benadryl.

I grew up with asthma and allergic to the world. I know what it's like to take 1 pill for a a symptom that develops to 4 pills for 4 symptoms. That is what I've been trying to avoid :(

Has anyone had any alternatives to treating hyperthyroidism? I mean something that actually works.

I'm so scared of my eyes bulging. Lol.

Sorry if I've rambled  it's just that I have so much to ask an so little reliable feed back. I'm glad I found you guys :)
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558632_tn?1303474725
Hi just got your invite! To answer your question was diagnosed in may of 2008, they took me off of ptu may 2012! So far so good! I do have blood draws every three months and only have to see doc twice a year now, she is a couple of hours away so just as easy for her to check my blood draws and monitor me without me having to go in. She doesn't like to do RAI, she feel why kill an organ if u don't have too! I am glad I listened to her! after two years of ptu I was begging her to just get it over with and do it! Still don't feel like I use to before graves but I also have three other autoimmunes so I guess they all take a toll!

Hang in there will take more time than u want to try to go into remission but definitely worth a shot! Just get your liver function tested occasionally due to ptu is a killer on the liver! And report any fevers etc.. I am sure your doc advised u of this already!


Good luck!!!!
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Avatar_m_tn
Thank you for your promp response.

The only thing I was told about the Methimazole is that it might hurt my bone marrow. I had some concerns about that, but the doctor too me it wasn't that commen.

I'm so bummed out that its been 4 years for you. I'm also happy to hear you've got it under control now.

I don't know if I can wait that long. I have a Federal job where I'm required to be in top physical shape and I'm afraid I might lose my job do to not being able to perform :(

Did anyone have problems with bulging eyes? I haven't had these but the more I think about it the more they hurt. Lol. Does this just happen when you're not treating your Greaves/Hyper? Can it happen during treatment? Is it reversible?

Hope everyone beats this an feels better.
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567228_tn?1318359066
Hi, IBkool,
It's been awhile since I posted on here! I sympathize with your frustration with Grave's disease. I definitely have been going through those same unknowns. I never knew what Grave's disease was until I was diagnosed with it. How long has it been since they first diagnosed you with Grave's?

Don't know if this'll make you feel any better, but I was under the impression that I couldn't be on PTU for no more than 18 months, but it seems each year that changes. I have been on PTU for 4 years now. I saw my endo in July and was told that my results were all normal. I was told that 6 months before then that I was also in the normal range and each time, he lowers my dose. I'm on 25mg once a day now. That's 1/2 of a pill of one 50 mg of PTU. I started off on 300mg/day (100 in the morning, 100 in the afternoon, & 100 evening). I'm hoping my endo takes me off PTU completely when I see him in Jan 2013.

I've heard that the hives and itching is just a side effect of methimazole, and that taking Benadryl will ease it, but who wants to be on Benadryl for as long as you're on methimazole, right? :)  Definitely talk to your doctor about it. I got the hives when I was on methimazole... Welts and itching were so bad that it was unbearable. Plus, my endo told me that since methimazole contained an ingredient that was similar to sulfa (which I was allergic to) that I had a 50% chance of being allergic to methimazole. By this time, I was not very confident in my doctor (another story - long story).

Why would you lose your job? Do you have a hard time when exercising? I definitely would not want to be hypo. I heard it takes awhile to dial in the dosage for hypo active thyroids also.

My hyperactive symptoms were a heartbeat that sped up when I inhaled, trembling of hands & fingers (also had it on my legs and feet), sweating & excess perspiration, sweaty hands, intolerance to heat & frequent bowel movements. My weight fluctuated, and I was always hungry. I never had the bulging eyes. In fact, I don't think I ever will. Due to the fact that during my last visit, my endo's resident student (a doctor also) questioned my thyroxin uptake results. He kept telling that my results were "negative". I asked him what he meant by that and his answer was that my thyroxin uptake results meant that I did not have Grave's disease. *sarcasm* Hm, really? Anyway, I digress... LOL

Every doctor is different on how they help their patients. I would keep doing what your endo tells you, and ask him about the itching with the methimazole. If you're not comfortable with your current endo, get a second opinion (if you are able to). I couldn't get a second opinion because I had to be referred before I could see another endo.

Sorry this reply is so long. I could have made it a novel, but I didn't want to bore you. LOL.

I wish you the best and keep positive, because you're not alone.

~ Alma
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567228_tn?1318359066
That's awesome, graveswoman! I'm hoping that my endo will take me off of PTU next time I see him. And it seems you have a great doctor too.

~Alma
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Avatar_f_tn
PLEASE HELP ASAP!!!!
My name is Erin and I have Graves, methimazole and beta blockers were working great, but doc said my liver levels are way too high and I have to stop taking the meth, and RAI is only option. I dont want it, I know what it does and the risks. Not to mention, I cant be away from my children?!?!?!? I dont know what to do. I want to try some natural methods but doctors are very negative about it. I need help!!  Also when I dont take the Methimazole, I feel like Im going to have a nervous breakdown! Any comments would help, please hurry, I dont have much time:) Thank you!
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567228_tn?1318359066
Oh, no, I'm sorry to hear that. I'm not sure what you can do. I'm on propylthiouracil (PTU). My doctor always checks for my white blood cell count and checks my liver also. There are a couple different anti-thyroid drugs (ATD) that have different side effects. Ask your doctor about PTU.

Maybe someone else may have some suggestions on this thread, but I wouldn't rely on this thread for a fast response or professional advice. If you're dead set against RAI, you may want to get a second opinion.

Whatever you decide, I wish you luck.

~Alma
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I was diagnosed with Hyperthyroidism in March 2012 after a routine check up with a new doc.  I was sent for the Iodine Uptake scan which confirmed Graves Disease, as my thyroid was enlarged.  I was placed on 30mg Methimazole and 150mg Metoprolol (to reduce the heart palpitations and nervousness).  I wasn't sleeping properly and when I did sleep I wasn't waking up to go to the bathroom, so I started having accidents, and Depends became my friend.

After informing my doctor, my Metoprolol was reduced and I was able to go to the bathroom when I needed to, and stop with the Depends.

I have been on the medication for over a year, down to 10mg a day and no Metoprolol, and my levels have steadily been reducing, hopefully I can get off these drugs soon enough.  

I thought I was the only one getting the itching and the welts on my skin, I am glad to know that I am not the only one having that issue.  I have been using the Benadryl to control the itching, but I can only take it at night as I fall asleep after taking the pills.

I have gained 40lbs while on these drugs, so the side effects are many indeed.  I can't go out in the heat, or the itching gets worse, I now burn easily whilst out in the sun, never happened before.  My liver numbers are good and my opthamologist confirmed that I don't have the Graves Opthamology, so there are a few good points of note.

A friend of mine did the RAI and she regrets it.  Wherever possible I want to avoid any surgery as I have an allergic reaction to General Anesthesia. I will give the drugs my best effort and then see what happens.

In my case, I will suffer through the itching a few more months longer until I am off these drugs and the thyroid issue is stable again.
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Don't do the RAI! I refused my medical doctor and went off Tapazole. He pushed and pushed me to do the RAI.
I found a naturopath that does nero modulation techniques along with natural tinctures, supplements and other therapies (that I do at home)
It took about 6 weeks, twice a week of seeing him to feel like me again. I had lost all muscle strength in my body and lost over30 lbs. I am able to walk up stairs now and am beginning to like being skinny, just got to tone up.
BUT PLEASE DON'T DO THE RAI! AND DONT LET ANYONE PUSH YOU INTO ANYTHING THAT MAKES YOU FEEL UNCOMFORTABLE.

I got to my medical doctor for labs only because my insurance covers that. He is still pushing RAI. Stand your ground and just say NO!!
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Hi, Ive been diagnosed hyper last year about november, and just 2 weeks ago, my experience is after taking methimazole for about 6 months, thats the only time i develop hives, Im takinh claritin for 5 days now to clear my rashes,  but it seems not helping that much, maybe i will switch to ptu now,  but my rashes are I think somehiw different from those most of you have deadescribed, mine is before its gonna clear some of it are leaving scars and some are peeling leaving a flaky skin, does anybody experienced this? Best regards.
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I got diagnosed at 5 IM now 24 they removed some of my thyroid glands at 5 and put me on synthroids they told my mom that may or may not be enough I stop taking it and my levels go up everytime IM pregnant I take levelthyroxine 75McG which IM on now not sure of diff right now but since surgery I turned hypo instead of hyper
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Hello All,
There is some much wonderful feedback from you all. I was just recently diagnosed with Graves Disease a month ago.  I have been extremely sick for about 4 months. I have ALL the symptoms you could possibly have associated with this disease. This is my second week taking Methimazole and I'm begining to experiece the skin rashes and itching. I logged on to this site to find out the best way to treat the rash and I'm so glad I did.  

My Endocrinologist told me my only options are medication and/or surgery. She is not recommending RAI because I'm beginning to show signs of TED. She is concerned that the RAI will make the eye disease worse so she is against it.

I'm still really sick and all the tests I had we're all off the record high or abnormal. My condition has gotten to the point of effecting every aspect of my life. I had to take some time off of work because of the weakness, temors, exhaustion, lack of sleep, and overall feeling sick everyday. I feel helpless in my home. My husband and 3 children have really pitched in with everything, since the simplest activity/chore makes me feel like i just ran a marathon.

I pray my condition continues to get better and I will have success stories as well.  

~New to Graves
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Update:

It's been awhile since I've posted on here. Whenever I read other forums I never see what has happened to the person or what their final outcome is so I wanted to make an update.

I had been on PTU for about 5 years and was taken off of it this past January. It didn't last long though. I started to feel the symptoms of a hyperactive thyroid so I decided to start taking the PTU again. Well, it looks like my body no longer will accept PTU. I started to get fevers and achy joints. Of course, now my doctor wants me to make a decision RAI or surgery. I, of course, want none. He can't make me, but I also don't want to be hyperactive so I'm in a dilemma.

He has put me on atenolol for my fast heart rate, but my blood pressure is normal so I guess I need to keep an eye on my BP. I don't want to have low BP on top of my hyperactivity. LOL.

I have also started to take L-carnitine. I've read articles about it and someone posted a a few years ago on L-carnitine.

My next appointment is in Sept, but that was a follow-up after putting me back on PTU. My doctor had asked me to call him back in a couple days (after he had prescribed atenolol) to let him know how I was doing. I got busy and had forgotten to call. His words were, "Well, the medicine didn't work so you only have two choices left... RAI and surgery. You'll need to make your decision soon."  WTF is that? Sorry for the expletives, but I don't like ultimatums especially when it has something to do with my body.

This is where I stand. :/   I've been doing research, but now I'm just even more confused.
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Hi, Newtograves,

I'm sorry to hear what your are going through. It's always good to have the support of your family. It makes each day much easier to deal with.

If your itching/rash isn't too bad, try to stick with methimazole. Take some benadryl to see if it'll alleviate it for most of the day. I've heard that itching and rash is one of the side effects but it's also an allergic reaction. Go figure. If it's unbearable ask to switch to propylthriouracil (PTU). I was on methimazole, but I ended up getting really bad hives so was switched to PTU. My endo had told me that an ingredient that's in methimazole is similar to sulfa drugs, which I'm allergic to. Of course, I've only heard that out of his mouth. I'm no doctor and reading the chemical make-up of medicine is like reading hieroglyphics. lol.

I wish you luck in whatever decisions you make. Just remember you're not alone. :)
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Hi Musela,

Thank you for your comments, I greatly appreciate it. I will try to stick with the methimazole for as long as I can. I don't want to switch to PTU if I can help it.

I hope the L-carnitine works for you and I'm sorry to hear the PTU is no longer working. Please let me know if it helps, I was thinking about giving it a try. I need all the help I can get.

I also wish you luck with your decisions. It's nice to know that I'm not alone but I wouldn't wish this illness on anyone.

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Thanks! And yes, you are right, I wouldn't want to wish this on anyone either. The only good benefit (for me) is the ability to eat anything and lose weight. LOL. If only I could have a fast metabolism without the Grave's part. :)

PTU is usually used for people who can't take methimazole and for women who plan to have a baby or are pregnant. Glad methimazole is working out for you. It's too bad I was allergic to it. I think it probably works better than PTU.

I have made a decision to have surgery. I will be calling my doctor tomorrow morning to discuss it with him.

I guess I won't know how L-carnitine will work out since I decided on the surgery. I did buy a bottle of it, but it's only 30 capsules and you have to take it four times a day. The downside... It cost $18.99 a bottle. Quite expensive. I am still taking it though. I'm guessing my doctor will take another blood test before surgery. I'll see if my numbers have changed for the better. If it does, surgery will not happen. :)
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That's a good way to look at it.  I'm losing wait too and that is a bonus. I agree losing wait without the graves would be great. :)

I wish you all the best with your blood work results. I know surgery is the last resort for me and probably you too. If it comes to surgery, I pray that everything goes well.

Wow! L-carnitine is expensive. I had no idea it costs so much and you have to take it so often. I may still give it a try.

Good luck with everything!


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Thanks!

My heart rate is skipping a beat even after taking a beta-blocker. It started yesterday. I noticed it as soon as I woke up.

I called my doctor's office this morning. It's pretty sad when I have to leave a message so he can call me back in 24-48 hours. You know a hospital is too big when a doctor can't even call within a couple hours.

I guess, whenever he decides to call, I will ask him all kinds of questions. I was hoping to go into remission being on PTU for so long, but when he lowered my dose, I noticed that my TSH was starting to lower. And then when he checked my numbers a month later, after stopping PTU, it even lowered more. Sad thing is I was doing fine before I was diagnosed. Yes, I had the tremors and I was hot (a lot), but I didn't have a skipping heartbeat, my blood pressure was normal and I was able to exercise. I had no other symptoms. Then when I was started on the anti-thyroid drugs, I started to wake up in the middle of the night with 140 bpm heart rate and my blood pressure shot through the roof. And now that I'm off PTU, I have a slight tremor and my heart skips a beat and it's pounding out of my chest (LOL). My muscles are also starting to get weak. sigh... Story of my life. haha!

I hope you are able to go into remission. I heard it's possible. I guess, I have no chance of going into remission now since I can't take either ATDs. Maybe I should have stayed on PTU a little longer instead of stopping it, but I was eager. Now my body doesn't want to cooperate with it. Oh, well. It's probably for the best. There's always a reason for the things that happen, right? lol. I'm going to keep a positive attitude. :)

Good luck with L-carnitine.
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Thanks!

You're doing the right thing with having a positive attitude. :). You have been through a lot for a long time and it seems like you've done everything right.  

I'm sorry to hear that you're having a difficult time right now.  

If I could give you a little piece of advice...if you had the same endocrinologist for all this time, I would recommend you see another endocrinologist. For a couple of reasons...to get a different perspective on your condition and possibly different treatment options. Also, you deserve someone who's more available to you when you need to speak with them. From what I'm learning about this disease is it can be dangerous and it should be monitored closely.

I know you have much more experience with this illness than me but I just believe in doing everything possible to conquer Graves Disease.

I wish you all the best :)
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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?
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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. :)
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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
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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.
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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! :)
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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
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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.
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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
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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. :)
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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 :)

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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 (shaky) 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 :)
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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 (symptoms) 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
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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 :)
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567228_tn?1318359066
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
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Avatar_f_tn
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. ;)
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Avatar_f_tn
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!!
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567228_tn?1318359066
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?
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Avatar_m_tn
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
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Avatar_f_tn
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
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567228_tn?1318359066
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. :)
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Avatar_n_tn
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
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Avatar_f_tn
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
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Avatar_m_tn
  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?
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