[Ski]

#1061536

I’ve seen people here with allergic reactions to methimazole who have been able to subdue the symptoms with Benadryl and see them ultimately disappear. I’ve also seen people here who have experienced a steady "ramp up" of allergy symptoms that can escalate into something truly frightening ~ up to and including anaphylactic shock. So it is something to look at closely, discuss with the doctor, then make a decision about what to do next and what symptoms to look for that would indicate a need to abandon the course you’re on.

It’s true, PTU has a higher risk of liver damage, but (to be fair) methimazole has its own risk of liver damage, so if you’re faced with a dangerous allergic reaction to one, it would seem to make sense to move to the other, and see if that one works better for you. But again, this is a good discussion for you and the doctor to have ~ and please remember that while your doctor has a lot more experience with this, your doctor will never care about your health as much as you do, so listen carefully, ask questions, and make a decision FOR YOURSELF about how you’d like to proceed. Obviously you share your decision with your doctor so they can assist going forward, and if they have serious reservations about your choice, that’s something else for you to consider.

Try to always be aware of the potential pitfalls in your choice, and be very honest with your doctor about what is going on, so that the two of you can operate as a team (rather than a superior/inferior position in either direction).

I hope this helps! I wish you luck with your treatment, please let us know how it’s going for you!

[jewels1]

#1017899

Hello All,

I am new to this board and I am so happy there is a support group for those with Graves’ Disease!

I was diagnosed with GD back in early May. I started taking 20 mg of Methimazole on May 10. It’s been about a month now and I’ve started to develop a rash on my body (depending where I scratch) for about a week now. It’s just small bumps and it goes away from I stop scratching. Benadryl also seems to help relieve the itching. My endocronologist told me I’m having an allergic reaction and wants me to switch to PTU. The endocronologist also mentioned that there’s a higher risk of liver damage with PTU. I’m reluctant to change medication and I’m hoping it’ll go away. Has anyone experienced a rash from PTU? if so, what was your experience like? Did you change medication?

Thank you very much for your help.

[Kimberly]

#1061537

One other thought to throw in the mix…are you close to getting a new set of labs done? As your levels move towards the "normal" range, your doctor will adjust your dose of meds to keep you from going hypO. Many patients who have this side effect find that they get some relief when their dose of the meds is reduced.

[snelsen]

#1061538

Quick note. I took PTU, was great. The other one made me itch, I knew I had a choice, so I switched. Up to me. Ski’s comments pretty much sum it up, and beautifully. Thought you might like to know my experience. Ultimately had a thyroidectomy, also my choice.
This is a great board, and so glad you found it!
Shirley

[jewels1]

#1061539

After consulting with two different endocronologists, I decided to switch to PTU. Its 300 mg a day for PTU vs. 20 mg previously for Methimazole. 300 mg sure sounds like a lot!

Thank you all for your responses and advice. I hope PTU works! ” title=”Smile” />

[MrsGoly]

#1061540

I’m having the same problem; On week 3 of methimazole and started having weird bumps that itched and full blown hives. On 20 mg a day … Miserable at the moment, will call the endo tomorrow … When we talked, didnt sound like she prescribed PTU, so I’m not sure what the options are …

[melissa]

#1061541

Hello–I’m new to this board and not sure if I’m posting in the right place–I hope I am!

A little background first…I was diagnosed with Graves’ in June of this year. My middle daughter who is now 14 was diagnosed with Graves’ in 20008, was put on methimazole and developed an allergic reaction. She was then put on PTU, was on it for a year and went into remission. She’s still in remission now and doing really well.

I too was placed on methimazole after a sick visit to my GP revealed that I was hyperthyroid. I was on 10 mg from June 9th-June 29th, and when I got in to see the endo and my bloodwork came back positive for Graves’ my dose was upped to 20 mg/day since I was still quite out of breath and shaky. My bloodwork also showed elevated liver enzymes (ALT 96 normal 14-54, AST 51 normal 15-41). My endo said we’d keep an eye on this since hyperthyroidism can cause elevated liver enzymes and my liver enzymes were elevated in the bloodwork taken by my GP prior to my being on the methimazole. I’ve been doing really well on the methimazole and was starting to feel really good when I went in for a physical with my regular doctor last week. The bloodwork showed that my liver enzymes were still elevated. She called my endo who promptly called me and told me to stop taking the methimazole and that the safest thing to do would be rai–I asked her how elevated and she said the AST was basically the same but the ALT was 3x normal.

At this point I had been on methimazole for a total of 5 weeks– 3 on 10mg and 2 on the 20mg dose.

I am not convinced that the methimazole is causing the elevated liver enzymes. I found this study: http://www.ncbi.nlm.nih.gov/pubmed/18001177
that states that it is not conclusive that ATD’s cause liver issues in Graves’ patients. I was wondering if anyone on this board has had liver issues on methimazole and if so what did they do? Also, if it is the methimazole that is affecting my liver is PTU out of the question? I’m just not ready to do RAI–I’m still getting used to the fact that I have Graves. Any input would be very appreciated!

[Kimberly]

#1061542

Hi Melissa – Have you thought about visiting another endo to get a second opinion? As you mentioned, elevated liver enzymes definitely can be associated with hyperthyroidism – which is why doctors generally run a baseline test prior to prescribing Anti-Thyroid Drugs. Usually, the thought process is that if the levels haven’t gotten *worse* over time, the effect is due to the hyperthyroidism, and not the ATDs.

However, there *are* reported cases of liver damage with Methimazole, and significantly more cases with PTU. Severe cases are quite rare – an average of less than one per year since the FDA started tracking “adverse events” with drugs – but this is still an issue to be aware of.

Getting another opinion from a third party might be helpful in sorting through the risks and benefits of your treatment options.

[melissa]

#1061543

Hi Kimberly,

Thanks so much for responding to my post– and so quickly too! Thank you also for this wonderful resource.

I did get some more information that doesn’t look good for my staying on the ATD’s or methimazole at least. I requested my labs from my GP and picked them up today. I found out that before methimazole my enzymes were: AST 41 (normal 0-40) ALT 70 (normal 0-40). My most recent labs on July 13 were a lot higher: AST 80, ALT 160. My endo also had me get some more bloodwork done at the lab today to have a record at her office. I guess I’m still wondering if PTU is out of the question for me because of this. I was feeling so much better on the meds–it just stinks that it was affecting my liver adversely. My endo wasn’t pushing rai initially and wanted to see if I would go into remission on the ATD. I asked her about the PTU when she called, but she sounded very ambivalent. I told her I needed some time to think about what to do and she agreed that it was a big decision. The only problem is that I feel like a ticking time bomb because now I’m not on anything (been off methamizole for 4 days now and going on vacation next week) and from everything I’ve read here I can’t do rai or a thyroidectomy if my levels are high…I just don’t want to rush into anything but don’t believe I have the time to think everything through as much as I’d like.

Does anyone know if PTU is out of the question because of my elevated liver enzymes? Does it affect the liver in the same way methamizole does? Any answers would be so appreciated!

[Kimberly]

#1061544

Hello – This is a decision that you and your doctor will have to make together. In general, methimazole is considered the *safer* drug when it comes to liver complications.

The preference is to do *any* type of surgery when the patient has normal thyroid hormone levels. However, potassium iodide drops used in conjunction with beta blockers can reduce the risk of thyroid storm if you aren’t able to normalize your levels prior to surgery.

As for RAI, some doctors do prefer to "pre-treat" with Anti-Thyroid Drugs, but not all docs utilize this approach.

[melissa]

#1061545

Thanks Kimberly–I appreciate the info and the advice. I might try to see another endo for a different perspective as you suggested.

Have a good night!

Melissa

[Bobbi]

#1061546

Another perspective, perhaps, Melissa. We can live well without our thyroids. Thyroid cancer patients, who have had every last vestige of thyroid tissue removed, live healthy full lives on replacement hormone. We typically still have "some" thyroid left (although not always) because we do not get as big a dose of RAI, or we only get a sub-total thyroidectomy to preserve the parathyroid glands, etc. On the other hand, people cannot live at all without a liver. It may "stink", as you say, that the option you have chosen as your first choice isn’t working the way you had hoped, but the other options can work to have you feeling well again, without the added strain on the liver.

[melissa]

#1061547

I’ve thougt of that too–why would I risk damaging my liver when I can live a healthy life without my thyroid? I guess it’s just a matter of readjusting my thinking. Since my daughter had such a successful outcome (for now, I know) with the ATD I assumed that my route would be just as simple. It is proving difficult for me to wrap my head around the fact that I am going to have to undergo a ‘definitive’ treatment. I’ve been very healthy all of my life and very active. I guess everyone on here has dealt with this feeling at some point—or will. So now it appears I have to decide between rai and a thyroidectomy. I am not thrilled with what I have read about rai, but think I’m crazy to even consider having surgery if I don’t need to. I’m 48, so I don’t have to worry about rai and pregnancy, but I just don’t like the thought of thought of rai and the uncertainty of constant messing around with meds to get the right dosage–I’ve read so much about people who feel bad years after the procedure and I don’t want that to happen to me. I also don’t want to deal with the TED problems that seem to crop up with rai–but reading Shirley’s posts, it seems she’s dealing with it now even though she chose the surgical route. I’m also very conscious that my daughter might have to face these same decisions in the not too distant future–I want to approach this in a sober, but not a ‘this is the end of the world’ manner so she knows that it’s nothing to be afraid of.

So, I’ll take the advice I’ve found here, make a list of pros and cons, talk to my endo, and make a decision—sounds easy, right? ” title=”Wink” />

[Bobbi]

#1061548

No, not easy, but it’s a really good thing to do, Melissa. It will help you to "own" your decision, and will help you to feel like you’ve thought things through.

Also, keep in mind that a lot of what you read online is skewed to illness. With whatever medical intervention you can name, there have been some adverse consequences at some point in time. (You are now one of those posting about an adverse consequence of the ATDs, if you think about it.) And people who have had problems are likely to be posting more than the folks who got well again and put whatever experience it was behind them. I can tell you that here, with Graves, if you check the archives, you will see the same problems being discussed over and over , but the names of the folks posting change every four to six months or so. Once we get well, we tend not to spend a lot of time on these boards.

The bottom line is that all of our treatment options are reasonably safe — and much, much safer than remaining hyperthyroid.

I do wish you good luck, and a good outcome.

[melissa]

#1061549

Thanks so much to you both for your advice and reassurance. I’ll keep you posted!

Melissa

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