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You mention that your heart rate and swelling are improving with treatment. Are you taking methimazole now? After I started on methimazole, I was starting to feel better after only a few weeks. I had several symptoms (tremors, weight loss, weakness, eyelid retraction, etc.) but the most challenging one for me was the anxiety and heightened emotions.
I was diagnosed almost five years ago after having experienced symptoms for about a year. Even though my symptoms cleared up relatively quickly, it took longer for me to become euthyroid. I was on methimazole for four years, and last year they found a large tumor. It had gone unnoticed because I’d gained back all the weight I’d lost while hyperthyroid (some of it in my neck) and the nodule was growing at the bottom of my left lobe and extended past my collar bone, so it was well hidden.
I had a total thyroidectomy nine months ago, and pathology determined that my tumor was benign – a Hurthle Cell Adenoma. I started on levothyroxine a week later. I’ve been on the same dose of levothyroxine until recently. Over the summer, I got a blood test that showed I had become hyperthyroid. I was starting to really feel the symptoms when I finally got in to see my endocrinologist, and she lowered my dose.
Here’s an excerpt from my post to facebook on the day of my endo appointment, explaining how and why I felt so bad. (Note – I also had a migraine that day).
“…Migraines can be triggered by the type of weather that we’ve had for the last three days. Also, hyperthyroidism can make you feel anxious and depressed, so even the smallest annoyances piss you off and big annoyances make you want to cry. Every obstacle seems insurmountable. For example, yesterday when the plumber was having trouble getting my drains unclogged (tree roots) it seemed to me that my best course of action would be to put all my belongings in storage and burn down my house.
“This was written just two weeks ago. Now I’m reading it, and it’s hard to believe I felt this way. I feel so much better now after just a little reduction in my medication. The idea of burning down my house is ridiculous now, but I felt so trapped and hopeless at the time.
I think that, with a little time, you’ll look back and won’t believe that you actually considered dropping out of school. Just hang on – things will get better soon.
Because of my near-cancer experience, I’ve done a lot of reading online about it. The first thing you need to keep in mind is that 95% of nodules are not cancer. I’ve read this statistic again and again, even though some of the other things I’ve read seem to contradict each other. (Some of the info may have been out of date). When I was first diagnosed, I had a thyroid uptake and scan, and there was definitely no nodule back then. I know that I must have had it for at least a year, though, because I found a photo that shows it. The photo was taken a year before my nodule was found, but it’s only visible because I was leaning over.
If you’re truly concerned about cancer, then thyroidectomy may be something you should consider after the methimazole has a chance to clear your head. I was very happy with mine. Recovery took a couple of weeks and I didn’t need to go into isolation (as is required with RAI). I think that one levothyroxine dosage adjustment in 9 months is pretty good. You would just need to make sure you find a really good surgeon.
If your surgeon prescribed this (and that’s the only reason you should be taking it), then their office should be able to help you find a pharmacy that carries it. Before my thyroidectomy, my surgeon prescribed “Lugol’s or SSKI.” She told me that she only prescribes this for her patients with Graves’. The first pharmacy they referred me to had stopped carrying it, but my surgeon’s assistant was able to find SSKI for me at the pharmacy of a different hospital. I live in a large metropolitan area, so I was surprised at how difficult it was to find. Because of the delay in getting my prescription filled, I was not able to take it for the full 10 days and I was frantic, thinking that my surgery might have to be postponed. I was able to get it 8 days before my surgery, though, and my surgeon said that was enough time. My surgery went well with no complications.
My insurance didn’t cover my prescription, but fortunately, it wasn’t terribly expensive – around $27. My SSKI was manufactured by Upsher-Smith Laboratories. If your surgeon’s office can’t help you find it, maybe you can contact Upsher-Smith on their website and ask if there are any pharmacies in your area that carry it.
Good luck with your surgery.
Tica – I think that your decision to get a thyroidectomy was a good one. I have a positive thyroidectomy account that I can share.
I had wanted a TT back when I was diagnosed in 2011 for many of the same reasons that you mentioned. (The only eye symptom I had was some eyelid retraction in one eye, though). I had some issues finding a surgeon, but I think the main reason I didn’t get a thyroidectomy back then was the long length of time it took for me to become euthyroid on methimazole. (My TSH never did get to normal). Eventually I got comfortable on my ATD and decided to just stick with it.
Last year I realized that my neck had been growing. I was also having feelings of choking when I tilted my head down. I had an ultrasound and a biopsy, and it came back as “suspicious” for cancer. (It was benign, though). It was so large that it needed to come out, in any case. Fortunately, I had a really good surgeon this time. I doubt that she’d had many patients like me – excited at the prospect of having a thyroidectomy.
My thyroidectomy was 8 1/2 months ago. It went really well – no complications and very little pain. In the first 4 months after the surgery, I did gain about 10 lbs, but I haven’t gained anything since then, and when I do exercise or choose a healthier diet, I see a dip in the number on the scale until I go back to my old habits.
That indicates to me that my weight gain isn’t completely beyond my control – I just need to get more serious about taking care of myself.When I was first diagnosed with Graves’, a well-meaning relative suggested that I take an iodine supplement. It didn’t make sense to me, but I asked my endo about it. She said that, for me, taking an iodine supplement would be like throwing gasoline on a fire. My high levels of T4 and T3 were evidence that I was getting plenty of iodine from my diet – even more than my body needed. Note that I don’t like fish (a high iodine food), and that at the time, the salt in my cupboard was non-iodized. Even so, I got plenty of iodine from other foods.
I had never heard of a skin test for iodine deficiency, so I Googled it. The first search result gave instructions, but stressed that they did not believe that it was accurate. I honestly don’t see how it could be. I think you should listen to what your body is telling you: When you increase your iodine, your symptoms get worse.
You mention that you recently increased your dose of methimazole. It can take a few weeks for the new dose to show any improvement. Be patient and keep going to your doctor. Good luck.
1. When I was initially diagnosed with Graves’ almost 5 years ago, I was leaning toward thyroidectomy because it would get me back to “normal” faster than RAI, and is a definitive treatment. At the time, my endo only knew one surgeon who did thyroidectomies, and when I consulted with him, he said he didn’t do them for Graves’. 😡 I got comfortable on methimazole and stayed on it for four years.
Last year, I finally got my thyroidectomy, but it wasn’t for the Graves’. I developed a large nodule that was pressing on my trachea and really needed to come out. It was suspicious for cancer, but it turned out to be benign.
Maybe if I hadn’t had Graves’ we would have considered a partial thyroidectomy, but I was really happy to be able to use the surgery to kill two birds with one stone. Fortunately, the hospital had just hired an awesome endocrine surgeon, so I was confident of a good outcome.When I first started on methimazole, it took about a year to really find the right dose, and then we had to lower it 6 months later. My thyroidectomy was 8 months ago, and I’m still on the same levothyroxine dose that I started with. I do need a slight adjustment, but compared to the rollercoaster I was on with methimazole, the levothyroxine has been smooth sailing.
2. I haven’t really experienced much eye involvement, so I’ll leave this question to others.
3. Ideally patients should be euthyroid before having any surgery. There’s a risk of thyroid storm if they’re hyperthyroid. That being said, I know someone who couldn’t tolerate either methimazole or PTU, and she was able to have a thyroidectomy. I think she said she had to take Iodine. She was probably referring to Potassium Iodide drops. My surgeon prescribed them before my surgery. She told me she only prescribes them for her Graves’ patients. I was supposed to take them for 10 days, but I could only get them 8 days before my surgery and I was fine.
4. Of course everyone is different, but my surgery and recovery were pretty easy. Mine took over 4 hours (closer to 5) because I had such a large nodule. It was actually bigger than the rest of my thyroid. I stayed one night in the hospital. I was told that this is in case patients have problems with bleeding. That night in the hospital, I was able to eat a regular meal. The next day when I checked out of the hospital, I was prescribed ibuprofen for the pain. I worried that it wouldn’t be enough, but it was fine. My surgeon also had me take Tums every few hours to supplement my calcium. This is done as a precaution because, even when the parathyroid glands aren’t damaged, they can be stunned for a while after surgery. I also had some chloraseptic spray, but I only used it once. The pain was much less than I expected.
My surgery was a week before Thanksgiving, and I enjoyed the holiday almost as much as any other year. I ate all my favorite dishes, and I even cooked a couple of them myself. The only thing different was that I got tired earlier than normal and had to cut the evening short. I was also still a bit hoarse. A couple of weeks after my surgery, though, my voice was back to normal.
My surgeon gave me some restrictions, but they only lasted two weeks. I live alone, so I was advised to stay with a family member for the first two nights after I got out of the hospital. I also couldn’t drive for a few days. I couldn’t lift anything very heavy or strain at all. I felt pretty good, but I got tired easily and had to rest frequently – especially the first week. I started on levothyroxine a week after my surgery.
My incision was closed with dissolving stitches on the inside and surgical glue holding the skin closed. The glue was covered with steri-strips. I was told I could get them wet in the shower but that I should only rinse them, not scrub. They were supposed to fall off within two weeks, but mine held on and my surgeon removed them for me when I had my two week post-op appointment. My scar looks pretty good. I have to keep it out of the sun for the first year, so I’ve just been using Mederma with 30 SPF.
My long term concerns are very few. I could take methimazole at any time of day, with or without food, but I have to be more careful with levothyroxine. It has to be taken on an empty stomach. This restriction isn’t really a problem – it just requires me to stick to a routine. I only need to see my endo every 6 months, now. Before, my thyroidectomy, I was seeing her every 2 – 4 months.
I haven’t been on the board in a while and just saw your post. Since no one else has responded, I’ll give you my 2 cents.
I’m on my first go around with Graves – I’ve never had a remission, and, according to my Endo, likely never will. My endo increased my methimazole dosage twice, but over a longer period of time, and my dosages were larger. I started at 20mg, then increased to 40mg after four weeks and increased again to 60mg six weeks after that. *
You mentioned that your doctor said your bloodwork was headed in the right direction, so I don’t think you have a problem with the drug not working. It’s hard to speculate without knowing the exact numbers, but based on what I went through and how closely your doctor is spacing your labs, I would guess that your doctor is just being very careful to monitor your levels closely while he determines your correct dose. Some people get the right dose the first time out, but for others it takes some trial and error. I asked my endo about it, and she said she usually needs to make one adjustment, but that I was a difficult case.
*BTW – After a period of being hypo, I’m down to 10mg now, and my labs finally seem to be stable and fairly normal. (Still waiting on the TSH to catch up.)
