[ChristinaDe]

#1059635

Hi everyone! First, I’d like to say that since being diagnosed several weeks ago…I’ve been all over the internet. A very depressing place most of the time. Until I got here. This site has actually given me a little bit of hope. And I’ve been so impressed with how rational people are here versus other places I’ve visited.

So I have a question. Realize that no one is a doctor…but just want to see if other people have received recommendations similar to mine? And I’ll apologize now…this post is a bit long (trying to set the background to my question).

I’ve had symptomatic subclinical hyperthyroidism for at least the past 4 years. Over the last year the symptoms have become progressively worse. My family doctor didn’t want to treat me since my TSH was only mildly suppressed. But I was so severely anxious, irritable & nervous, so fatigued, so HOT, and my heart was racing so badly that I had been worked up by a cardiologist and was now short of breath and weak a lot of the time. Plus the muscle wasting has become significant (and I’ve seen all this before in my father & grandmother who both had Graves’ w/ subclinical hyperthyroidism). So I finally self-referred to an endocrinologist who ran additional tests. End result…mildly low TSH, normal T3 and 4, positive for Graves’ antibodies, positive for goiter and multiple thyroid nodules (2 of which are about 1.6cm). Also severely low Vitamin D (for which I now take megadoses of prescription supplements).

Since my TSH has been mildly suppressed for several years, the endo says that I’m not a candidate for remission with tamazole. But she put me on it to do 2 things. One, to see if it removed symptoms. It did. Second, to calm my thyroid before any definitive treatments which she was already pretty sure I’d need. I was also started on atenolol for heart rates that reached 160. She then said that RAI is not a good option for me due to the nodules & since I may also have mild TED (referred to ophthalmologist to rule out, haven’t seen yet). So she said that I will most likely need TT. She also sent me to an ENT specializing in thyroid surgery for a biopsy of the nodules to rule out cancer. When I saw him he did not do the biopsy because he said that we already know that I need RAI or surgery…and that surgery was my best option since I had nodules and possible eye involvement. So he scheduled me for TT on February 1st & will get the biopsy then.

I then began to feel uncomfortable with moving straight to surgery, so I saw her again. At that visit she decided it may be a good idea to get a thyroid scan and so she took me off the tapazole (yikes!). I asked her if I should cancel the surgery for now & she said “no”, we have plenty of time to do additional testing before then. My worry here is that the surgeon said he needed me on tapazole for 6 weeks prior to surgery and now we’re taking a 2 week break from it. (This whole process has been fast & furious w/ less than perfect communication and w/ me often feeling like I’m managing my care and all its little details). Anyway, so I get the scan next Monday/Tuesday. And I feel like cr*p in the meantime.

Here’s my question? Has anyone else w/ a similar presentation been directed straight toward surgery? Has anyone who’s had subclinical hyperthyroidism for years ever experienced a remission through tapazole? Have others been told that Graves’ w/ nodules is better treated through surgery than RAI? I’m just trying to figure out this is a pretty typical standard of care in my scenario. (I’m a nurse…which probably isn’t good…makes me question EVERYTHING!).

Again, sorry the post is so long. I don’t know anyone w/ Graves’ (my father & grandmother would have been excellent resources, but they’ve both passed away).

Thanks!
Christina

[Bobbi]

#1176321

I don’t know if you can get back issues of The Bridge, which is the publication that used to come out from the ATF (American Thyroid Foundation). I used to keep them all, but I moved last year and….. well, let’s just say a lot of my “keep”sakes were foresaken. Anyway, I remember a doctor’s article in one of the issues, talking about subclinical hyperthyroidism. In that article the doctor wrote that it was becoming apparent that subclinical hyperthyroidism needed to be treated; that the bad stuff that happens with the rest of us who have clinically proven hyperthyroidism (bone and muscle loss, for example) also happens to those of you who are subclinical; and that, as a result, it needs to be treated. I don’t know if that is any comfort to you now, or any help in figuring out how to navigate the situation you are in. Also, it seemed to my reading of your post, that your doctor recommended TT because of your eyes, not because of the nodules. If I didn’t misread that, then you need to keep that rationale in mind. RAI does not cause the eye disease (at least that is the current state of knowledge about things), but it has been shown to aggravate the symptoms of the eye disease in a minority of patients. Having discernable TED usually steers folks in the direction of TT, unless they want RAI with a concurrent dose of prednisone for a few weeks.

[Kimberly]

#1176322

Hello – There is some additional info on Subclinical Hyperthyroidism in a link in the “Treatment Options” thread in the announcements section at the top of this forum.

Click on the second link, which is the latest medical guidance on the treatment of hyperthyroidism from the American Thyroid Association and American Association of Clinical Endocrinologists. The info on SH is on page 617 of the original journal article (or page 25 if you download it as a PDF document).

Treatment is generally recommended for SH if the patient is experiencing symptoms or if heart issues are a concern (for example, in elderly patients).

I have never heard of remission chances being decreased because TSH has been suppressed for several years. Statistically, the patients with the highest likelihood of remission are female, have low antibody levels, small goiters, and mild disease. You might ask your doctor for more info on this.

Take care!

[ChristinaDe]

#1176323

Thanks for your responses! Bolsters what I was already kind of thinking.
So now I’m thinking…OMG!…do I do this surgery now as recommended or postpone it and try to talk my doctor into trying for a remission first?

Man, my brain hurts!!

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