[ecl39]

#1060521

Hello everyone, I’m new here. I joined because I am in search of some answers related to my Grave’s disease. Basically, I have two main questions:
1. Do you have to be euthyroid in order to have radioactive iodine treatment done?
2. Is it possible for your thyroid to build up a resistance to Methimazole?

Here’s some background information: I’m 24 years old, female. I was diagnosed with Grave’s 2.5 years ago. It was pretty bad when I was first diagnosed. My ft4 exceeded what the test was able to measure (40). I was taking 90mg of Methimazole a day for a while until my symptoms became less severe. I gradually decreased it and eventually got down to 15mg. My TSH, while still in the normal range, became quite a bit higher, and my ft4 levels decreased to about 0.6. At that point I was feeling hypothyroid, so my endocrinologist decreased me to 10mg. Almost immediately, my hyperthyroidism symptoms reappeared, so she increased me back to 15mg. Over the course of about 2 or 3 months, I noticed my symptoms were reappearing again, even at the 15mg. My labwork confirmed that my thyroid was becoming overactive again; my ft4 was above 2, exceeding the normal range. So about a month ago, I increased my Methimazole yet again to 20mg. I am seeing a new endocrinologist this week to get a second opinion. Should I be worried that the 15mg of Methimazole (which had previously regulated my thyroid just fine) was no longer able to properly regulate my thyroid? Could my symptoms reappear even at 20mg? What would cause my ft4 to increase like that despite the 15mg of Methimazole? And do I have to wait for everything to stabalize before radioactive iodine is an option?

Any help is greatly appreciated. Thank you!!

[Kimberly]

#1183095

Hello and welcome!

1. There is actually some controversy over whether patients should be “pre-treated” with methimazole prior to RAI. The medical guidance from the ATA and AACE (which you can find in the “Treatment Options” thread in the announcements section of the forum) notes that methimazole and/or beta blockers should at least be considered in patients who have very high T4 or who are extremely symptomatic in order to reduce the risk of complications.

2. I have not heard of patients becoming resistant to methimazole, although certainly levels and symptoms can change over time, and it’s important to adjust meds accordingly. One issue you might discuss with your doc is whether splitting pills and/or alternating doses every other day might be a better alternative then jumping up and down between the standard 5 mg doses. For example, for a while, I was taking 5 mg of methimazole every other day alternating with 7.5 mg on the in between days.

Take care!

[Raspberry]

#1183096

Hi Ecl39, sorry you are having trouble! Did you already have an ultrasound and radioactive uptake test to rule out hot nodules? Hot nodules can require more methimazole and be more unpredictable. This potentially came up for me as I was initially diagnosed was Graves and a hot nodule both. Ultimately the docs decided the nodule wasn’t hot after all in part because low doses of methimazole worked. You could also ask you doctor about block and replace therapy (high dose of methimazole combined with thyroid replacement meds) – that would force some stabilization too. Good luck!

[JEH]

#1183097

I was first diagnosed in my 50’s in 1998. For a variety of reasons, my doc and I decided on anti-thyroid meds, which have been fairly successful for me. Your story demonstrates why treatment of Graves is more an art than a science. It’s not the gland that is at fault, it is your immune system, which I don’t believe the medical community has figured out how to control. Therefore, I don’t believe you can count on any regime for Graves being all that stable and reliable.

I track my progress or lack thereof with my bp and heart rate. If those are stable, I am happy. That means my circulatory system is safe for the moment. For me there have always been nagging other symptoms like weight gain, heat sensitivity and constipation. I buy larger clothes, run around nearly naked and use fiber caps to help.

I’m not trying to be flippant. Right now my doc has me on a low dose Synthroid because over the years I have slipped into a hypo state. It seems to be helping my other symptoms but I will know more when my labs are read again in the next week or so. I can’t comment on the RAI because I am not a medical professional. I chose not to do it because I didn’t want to risk my eyes. (You should talk to your endo about your risk before agreeing to take that on.) What I can tell you is that my doc is a nazi when it comes to brand name drugs. During the nearly 8 years I was on anti-thyroid medication, he insisted that I use Tapazole rather than the generic you are asking about. He and I both believe there is value in the branded drug that is missing in the generic. (I have tested it myself with Lipitor and the lipid #’s are different with the BN drug vs the generic.)

I don’t believe Graves is anything to self-diagnose or self-dose. The risk to your heart is too great. Keep working with a doc that you feel confident with and best of luck to you.

[ecl39]

#1183098

Thank you all very much for all of the helpful information and advice! I appreciate it. I have my first appointment with my new endocrinologist tomorrow, so you all have given me some great material/suggestions that I plan to discuss with him!

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