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I agree with the others: Get copies of your labs (I track mine on a spreadsheet) and find a new doctor. And don’t give up! It took me a year to find my correct dose of methimazole, but then I did well on it for three years. It took me so long because I actually started at 20 mg and worked my way up to 60, then became very hypo. I had to taper down and then go off of it for a while. When I became hyper again, I started over again at a much lower dose (10 mg) and eventually settled at alternating 5 and 10 mg (breaking the tablets in half). I never had my antibodies tested, but my best guess is that they’re the reason for my sudden switch to hypo.
Unless you develop an allergy or side effects or something, you should eventually find your way to your correct dose. Good luck!
Marci
As Kimberly said, every lab has a different “normal” range, so you’d have to refer to your lab results in order to see how far off of normal you are. Her suggestion of requesting hard copies of lab results was the best advice I got when I was first diagnosed. I used to have to request them from my endo, but these days you can get them online – much easier and faster. (I no longer have to wait for my appointment). I keep all my results in a spreadsheet so I have easy access to info on how my disease has progressed and medication dosage changes.
If you’ve only been taking the Tapazole for two days, it wouldn’t have had much time to take effect, and your disease has been continuing to progress. I wonder if the soreness you’re experiencing could be from your exercise routine. You should definitely talk to your doctor about it. Graves’ causes you to lose weight, and some of that weight is muscle. If you’re doing strenuous exercise, your body isn’t able to recover like it did before you developed Graves’, so you could be actually making yourself weaker. If your case is really mild, your doctor may give you the okay to continue, but general advice for new patients (while they’re still hyperthyroid) is to stick to mild exercise like walking.
In addition to stress, another thing that is theorized to contribute to the onset of Graves’ is low Vitamin D levels. I had tested low in the past and wasn’t taking my supplement when I first developed symptoms. I tested low again later, so I’m sure I was low at the onset of my disease. You and your sister might want to get your D levels tested. You don’t need to live in the frozen North to be deficient in D, either. I live in Phoenix.
I was diagnosed about seven years ago and was on methimazole for four years. It took me about a year to find the right dose, but after that I did quite well on it, other than the fact that my TSH remained suppressed even when my T4 and T3 were normal. I was considered euthyroid. My biggest complaint was that I had fatigue that never went away.
After four years, we discovered that I’d developed a rather large nodule and I required a thyroidectomy. I was fortunate to have an excellent surgeon and the procedure went well with no complications (and most importantly, no cancer!) Afterward, it took some doing to find my dose of levothyroxine. In the beginning, I was hyper in all the tests, but we lowered my dose and then it was just my TSH that was suppressed again. This time, my endo said that, without my thyroid, I was considered hyper. We kept lowering my dose, and it was 2 1/2 years before I finally got a normal TSH. During this entire journey, I continued having the same fatigue that I’d had on the methimazole.
I have other health issues as well, including chronic migraines, and about this time last year I realized that I couldn’t remember the last time I’d felt good. I wasn’t looking forward to the holidays (dreading them, actually). My mom was planning on taking me on a trip to Europe with her this year and I didn’t even want to go. So I talked to my endo and she had me make an appointment with my GP. He prescribed lexapro for me because I had used it successfully in the past.
When I first started taking it, there were a few days when I was so tired I could barely get out of bed, but after that I worked great. I feel so much better now. I’ve had some challenges this year, and I don’t know how I would have gotten through them without the help of my lexapro. I just got home from my vacation a month ago and had an amazing time.
The only problem I had with methimazole was that it took me a whole year to get stable on it. That was my body’s fault, though – not the drug. I’ve read several accounts of people who had allergic reactions. Some did fine on PTU and others had the same allergic reaction with PTU. Some had to take benadryl (per doctor’s orders) along with their methimazole and the allergic reaction eventually subsided, so they didn’t have to keep taking it.
You have a lot going on: upcoming vacation and potential insurance changes. FWIW, when I was choosing my treatment, I was concerned that I might lose my insurance, so I was considering medication cost as a factor. WalMart has levothyroxine for $4, so that’s a point in favor of RAI or TT.
The issue with TT is that, ideally, you need to be euthyroid before you can have the surgery, and since you’re having issues with the medication needed to get you euthyroid, you’re kind of at an impasse. When I was diagnosed, I was leaning toward TT, but it just took too long to get euthyroid and I got comfortable on the meds. (I eventually got my TT 4 years later after I developed a suspicious nodule).
I can see why you’re going with RAI because you can have it done now and don’t have to wait until you’re euthyroid. It’s just too bad that your vacation is coming up so soon. I doubt you’ll be feeling better in September if your RAI is on 8/13. Of course, there’s also the chance that you could become hypo on vacation and then how would you get labs done or medication?
I’m curious why you chose RAI over PTU. If the PTU worked, it might be your best bet for having an enjoyable vacation.
(BTW – If you check out the facebook group, I post there too. Marci Timothy is my actual name).
