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That’s really promising that your endo has a go-to surgeon for thyroidectomies. When I was first diagnosed and considered TT, my endo presented me with all the treatment options, but I got the impression that not many patients in their practice chose TT. The surgeon she referred me to told me he wouldn’t do a TT on a Graves’ patient because the enlarged thyroid made the surgery more difficult. Fast-forward four years and I had a nodule, suspicious for cancer, that was actually larger than my thyroid, so there was no question that I needed surgery. Fortunately, the hospital had recently hired a highly experienced and respected endocrine surgeon. My TT went off without a hitch and the tumor was benign.
With your labs, hopefully they’ll go by your T4 and T3 when they declare you euthyroid. Changes to TSH lag behind T4 and T3, and in some people (like me) they remain suppressed. Mine was still suppressed when I had my TT, as it had been for the last 3 years.
Any time you post lab results, you should post the normal ranges because every lab has a different range. Clearly “<" means that it's too low for the lab to measure. Do I understand you correctly that your labs were better on the methimazole, but you had to stop because of the hives? And now you have a rash on the PTU that they're treating with steroids? You poor girl!
I have read posts online of people who had some issues (rash, etc) when they first began taking anti-thyroid meds, but they stuck with the meds and the issues eventually went away. I think they were treated with benadryl in the meantime. It might be something to ask your endo about.
That’s interesting about your CT scan. Did your endo explain the reason for the delay? Is it because the iodine increased your hyperthyroidism? (I know they prefer you to be euthyroid before surgery). I’d never thought about the contrast containing iodine, but I actually had a few CT scans in the year before my Graves’ was diagnosed, and I was also experiencing symptoms in that year.
I actually know someone (she used to come to my Graves’ support group) who had allergies to both methimazole and PTU and needed to have a thyroidectomy even though she wasn’t euthyroid. It’s not ideal, but there are other things they can do to compensate. One thing that they prescribed for her (and my surgeon did for me as well – says she prescribes it for all her Graves’ patients) is potassium iodide drops (brand names SSKI or Lugol’s Solution) to be taken for only 10 days before the surgery. They decrease the vascularity of the thyroid. The last I heard, this woman was doing really well – maybe why she isn’t coming to meetings any more.
Have you been prescribed a beta blocker? That’s one thing that might help with the anxiety while you’re waiting for your new dose of PTU to take effect. I think propranol is most commonly prescribed to new Graves’ patients, but when I was diagnosed, I was already taking metoprolol so my doctor just increased my dose.
I don’t think it’s necessarily a bad thing that you have to wait 2-3 months for a definitive treatment. That will give you time to really consider both options. It’s a big decision. I only know about RAI from what I’ve read and heard from others. I can definitely answer your questions (from my experience) about thryoidectomy.
RAI is actually the only treatment I didn’t do, so can’t help you there, but maybe I can offer some insight from my experiences. I was on methimazole for four years and did pretty well on it. My only issue was a TSH that remained suppressed, but my T4 and T3 were pretty stable. My dose for the last 3 years went from 10 mg down to 5 mg daily, but for about 2 1/2 years in the middle I was alternating 10 and 5 mg. I would have been comfortable remaining on methimazole longer if I hadn’t developed a nodule.
My nodule was pretty big. It was a type of tumor that can’t be diagnosed without removing it, but the very size of it made it more likely to be cancer. If it had been malignant, I would have ended up having RAI several weeks after my surgery, but fortunately it was benign. I know you asked about RAI, but if you ever have questions about TT, I’d be happy to answer them. I had an excellent surgeon and my TT went perfectly with no complications in spite of the fact that it was extra challenging due to the size of my nodule (7cm) and location (growing down past my collar bone). I’ve had other surgeries and my TT was so easy in comparison!
Regarding life without a thyroid: It’s a little scary to know that I’m totally dependent on a pill for my thyroid hormone, so I try not to think about it.
I’m actually better about taking my levothyroxine than I am my other meds. I take my other meds mid-morning whenever I think about it, but you have to take levothyroxine on an empty stomach, at least an hour before eating or taking other meds. Most people take their levo when they wake up in the morning. I tend to wake up very early (between 4:00 and 6:00) every morning and then fall back asleep, so I take mine then. When you take such a crucial medication at a time when you’re half asleep, you can’t afford to make mistakes so I think most people use a pill sorter for their levothyroxine even though it’s just one pill.Having RAI increases your odds of getting TED, but you can still get it even if you have a TT. My TT was 2 1/2 years ago, and I didn’t have a choice because I had a suspicious tumor that was choking me. Fortunately, it was benign and everything went perfectly – no complications. Since my TT, I’ve occasionally had some very minor TED symptoms. They aren’t obvious to anyone else. I’m in the very unusual situation of having a TSH that remained suppressed after my surgery, so I’ve actually been classified as hyperthyroid all this time. After 5 dosage reductions, my TSH is finally normal as of my recent labs.
If you’re already experiencing some asymmetry, I don’t think I’d take any chances with RAI. It really is important, though, to find an experienced surgeon for a TT.
You don’t need to fear PTU. I’ve met a few people who have been on it successfully. Even methimazole isn’t free of side effects – it’s just a little safer than PTU. Another reason that PTU is out of favor – something that you mentioned – is that you have to take it multiple times a day, while methimazole can be taken once a day. That alone would make methimazole the preferred drug, since patient compliance is really important for best results.
Good for you for taking steps to quit smoking.
I’m glad you’re aware of the increased risks of Thyroid Eye Disease for smokers. You should also be aware that it will improve your outcome if you’re able to have a thyroidectomy. Smoking constricts blood vessels and impairs healing from surgery. Good luck with those last two cigarettes. One thing I noticed that was different between Graves and menopause was that sometimes I’d be lying in bed and, while my feet tend to get cold when I’m lying down, they’d sometimes feel like they were burning up. That was from Graves’. On the other hand, when I felt heat that radiated from my head, that was from Menopause.
To answer your other questions…
When I was originally diagnosed hyperthyroid, I was already taking 25 mg of metoprolol twice a day. I wasn’t really having a lot of heart palpitations – maybe because I was already on medication. I had actually gone to see the doctor for a new prescription of my BP med and while I was there, asked about my tremors. When she got my lab results back, she doubled my dosage to 50 mg twice a day and said it would help with the tremors until I could get in to see an endo. I’ve been on a few different BP meds over the years. I’m currently taking Verapamil. (I was prescribed it years ago by a neurologist, and I asked to try it again hoping it would help with both my headaches and my BP. It hasn’t helped my headaches, though).I’ve never actually had my antibodies tested. I was diagnosed based my uptake & scan and my labs. I had all the classic symptoms, including some eyelid retraction, so it was pretty obvious that my hyperthyroidism was due to Graves’.
My symptoms got better pretty quickly on methimazole, except for some fatigue that has never quite gone away (and may be due to other health issues or even my BP medication). Even so, other than the first year, which was a roller coaster in which I was actually hypO for several months, I’ve only had one normal TSH test in over four years. The rest of the time, my TSH has been suppressed, even when my T4 and T3 are normal. Before my TT, my endo wasn’t concerned. Now that I no longer have a thyroid, she’s more focused on my TSH and she keeps lowering my levothyroxine dose to try to get it in range. After five reductions, I still have a long way to go.* I feel pretty good most of the time, but I’ve had some eye issues, so I’m eager to get my TSH back where it should be in hopes of nipping the TED in the bud.
* My latest labs: TSH 0.090 (normal 0.45-4.50), T4 1.50 (normal 0.80-1.70), T3 2.6 (normal 2.0-4.
. In this test, my TSH was actually down, and my T4 was actually up from my previous test. And this is with a reduction in my levo.
