Hi! I haven't had my surgery yet but this is what I have chosen after having Graves' 3 times. The increased cancer risks with RAI scared me even though the risks are not large. I just couldn't bring myself to do RAI. I have heard it is not used much in Europe where surgery is the favored method of treatment.

Keep in Touch and let us know how it goes! xoxo

I would point out the part of kararoot's original post which said that while her thyroid levels had dropped, her liver values had “tripled.” I took this to mean that her liver function had been tested prior to the “tripling,” when she had been put on the drug in the first place. If that is true, then it does not suggest that hyperthyroidism caused the elevated liver enzymes.

Hi Bobbi - There's actually one specific liver function measure that the guidance from the ATA and AACE notes is not as much of a concern if thyroid hormone levels are dropping and other liver function tests are normalizing: “In patients with improving thyrotoxicosis, a rising alkaline phosphatase with normalization of other liver function does not indicate worsening hepatic toxicity.”

Potential liver issues, of course, should never be taken lightly…so that's why I suggested that kararoot take the ATA/AACE guidance to a doctor for further discussion.

Hi all - Thank you SO MUCH for your responses! It feels really good hearing from people who not only know the issues and lingo but know what it feels like to be, (as my husband calls it), “gravesy”, and weighing two not-great options.

Yesterday I got permission from my endo to drop the Methimazole from 10 mg to 5 mg (she probably would've given me permission to try an all-chocolate diet if I had asked- so sure she is that in four weeks we'll be back at the decision place between RAI and surgery no matter what we do), but I have decided to remain hopeful that the enzymes will go down.
(FYI - they were elevated when I began treatment, but have tripled since then).

I will check back in in 4 weeks, and in the meantime I wish a speedy recovery, and health to you all who are in process! Again - I am SO GRATEFUL for your stories!

Hi kararoot - Yes, definitely keep us posted. Hopefully, you will see things settle down, but in the meantime, do be aware of symptoms of potential liver complications, which can include fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes. Some resources also say that pain in the upper right side is a potential symptom as well. If you experience any of these, definitely let your doc's office know right away.

Take care!

I am in your situation too! I don't know if I should choose RAI or surgery. I saw my surgeon today.

Keep us posted and I hope whatever you chose goes well! xoxo

Thanks for this Kimberly! I will have a look too!

Hi all - so an update on me:
I took that month I was given and saw an integrative medicine MD, who took me off gluten and added supplements like Vitamin D and Omega-3 and multi-vitamin - the regular stuff. And I called my endo to see if I could drop the Methimazole to 5 mg - which she agreed to. The gluten-free thing was not a welcome suggestion (as I love to bake and LOVE bread!) but she assured me that we were experimenting and I was glad to be addressing the impact on the thyroid AS WELL as approaching Graves' as an autoimmune condition. Since so many people have gluten sensitivity that exacerbates autoimmune conditions, it was worth a shot. I also added more regular exercise and really working on saying “no” more- not to let myself get too stressed out and overwhelmed, with breathing and relaxation exercises to support this. I've also read about the stress connection with Graves' - as with many autoimmune responses.

Long story short- I went in a month later and my enzymes were normal. Not only that, but my T4 was in the normal range, so the meds were working at the lower dosage, and I have been given the go-ahead by my endo to continue this track - anti-thyroid meds for a year with complimentary approaches to maintaining health, in the hopes that I will be in the 30% that achieve remission. As this was what I was hoping for, I am thrilled. I also recognize that at some point I may face the decision between RAI and surgery again, but for now, I am happy to be where I am - not to mention feeling better than I have in over a year with the symptoms like insomnia, fatigue, palpitations, etc. GONE. (I even stopped atenolol!)

The other part of the update is I decided before switching endos to try to talk with mine about our relationship and the comment she made. I told her I needed to bring up something that was bothering me and then reminded her that as she left our previous appointment, she had said, “Since you know so much, why don't you come up with the treatment plan.” I told her that really bothered me, that I needed her to be the expert and I needed to have a voice about my own body and hoped that we could work together. I felt she heard me, and she said she supported her patients doing research and the truth was that she was mitigating risk when she was pushing RAI and that I, in fact, DID come up with the treatment plan and it was working, so that was good. I felt after we talked that there is a mutual respect (maybe born from that conversation itself) that allows me to say something again if I need to but also feel I can keep working with her.

(I'm also hoping - since noticing no difference one way or another- that the gluten thing is a fluke and while might be a problem for some, isn't MY problem, particularly. But, since things are so stable right now, I am continuing GF, for a little while at least).

Mostly- I read a TON and hunted down the support I needed, and have felt more empowered about my own health and wellness, and more aware of my body's needs -(learning to pay attention to symptoms and needs) - than I have in my whole life. I am grateful for the struggle the last 4 months have been because they've taught me to be proactive about my health and medical care, and to trust my instincts and take risks, speak up, and to pace myself. I learned I can be as healthy as I am able and work for my own well-being. What a lesson to learn!

All in all - happy update.

Hi K
I am on the same boat.

I started on Methimazole 30mg per day 5-weeks back.

Now last week my FT4 and FT3 were right at borderline elevated.
Very slightly above the upper range.

But my Liver Enzymes have gone very high. Results from Sept 14th are below:

AST 79 Range – 0 - 37
ALT 217 Range – 15 - 65

It was slightly elevated before starting on Methimazole.

Two weeks back my Lipase was also slightly elevated.

But I feel quite normal though.

My endo doctor thinks that I should stop Methimazole completely for a week.

I think I should be on 5 or 10mg and see how it goes. Any suggestions?

@kararoot – Thanks for sharing your story! This is a great illustration as to how vital the communication process is between doctors and patients…and that sometimes a little effort on the patient’s part can help erase misunderstandings and preserve an otherwise productive relationship.

@pdaz – Hello and welcome! We are fellow patients on this board, not doctors, so it's not appropriate for us to make dosing recommendations. If you are concerned, though, I would suggest going back to your doctor to ask questions. We’ve actually had cases reported here where a doctor changed his/her mind after a patient went back and asked for the reasons behind a specific dosing recommendation. However, it’s absolutely critical that this decision needs to be made in conjunction with your doctor.