Another Thyroid Thread.... (Redux)

[indysteel]

I'm having a hard time getting my head around your experience. I've found communicating with my own endo frustrating, too, and I've sometimes wondered what the heck they're teaching the about thyroid disease. One and two weeks seem like really short periods by which to assess how the drug is working. My testing is every six weeks at this point.

Consider finding a new doc or having your family doc treat you.

[redrhodie]

Jeez! So frustrating. Changing doses after a week sounds contrary to everything I've read. At least you got the script. I hope it helps.

I really get the sense we're on our own dealing with this.

[Blueberry]

Thanks And I agree we're mostly on our own.

This was the stand in for my primary care (she was booked and I couldn't get an appointment with her). I see my regular primary care in 2 weeks. If I don't feel like she has a great handle on it, I'll self refer to an endo and see what happens there. Of course, the doc yesterday said she wasn't giving me any refills, but actually called in 11 refills of 30. So - at least I have more time to get things worked out and find a doc who will listen.

[Red Rock]

Blueberry...gosh, what can I say. I feel for you. I have been on my own thyroid roller coaster now for two years. Only the last year dealing with an endo, who I seem to get a long with, which is nice. He has actually explained things to me so I understand, which is much better than what my regular doc does not do so well. When I say that you would be changing doses after a week, I was a bit shocked to say the least. All the reading I have done, no matter what your taking, seems to be about a month or more before you might "start feeling better." I hope your regualr doc can help you in the meantime while you look for someone else who will help you get better.

My story...I spoke with my docs office today and my recent results suggest, I'm boarderline Grave's so I'm going back to the endo this week. So does anyone have any input they can help me out with in what my next best options are. Is it safe to assume that I would be put on meds? Since I'm still boarderline can I request meds so I can feel better? Or should I just sit tight and wait to see what happens when I visit the endo?

Sending everyone postive energy...thoughts your way to help you all feel better.

Red Rock

[indysteel]

Red Rock, if my experience with subclinical/mild Graves is any guide, there are a few ways to approach it. You can just wait and see if it worsens but otherwise do nothing; you can go on a minimal dose of am antithyroid med; or you can on a beta blocker to control your symptoms. I was not a candidate for the latter because my bp is low. I went with the second option, and I did get better in the sense that my hyper symptoms lessened, but it also put me into a hypo state, despite repeated dose reductions. I'm no longer on them, and we're waiting to see if I'm in remission. For the first few months after going off them, I was still mildly hypo, so I started taking a small dose of synthroid. I feel hyper again to dome extent and it's unclear whether I just need to reduce my synthroid dose or if I'm not really in remission. Basically, whatever route you take will require repeated bloodwork. It's been a frustrating journey to say the least.

Do you have a definitive Graves' diagnosis? There are some diagnostics that I don't think you've had that you should arguably talk to your doc about. One is an ultrasound. That helps rule out cancer and nodules. Another is a radioactive uptake scan. For this test, they give you radioactive iodine and then take two different images of your thyroid and measure how much of the iodine the thyroid has used.

Finally, if it is Graves, I would consult with an opthamologist to see if the disease is affecting your eyes. This is another effect of the antibodies present with Graves. They can attack both the thyroid and the eyes.

[Red Rock]

Indy, thanks for your response. I have had the uptake scan earlier this year with the endo. The rest has been blood work. From what you say, it sounds like the antithyroid med would be the best option. The endo and I had previously talked about putting me on a low dose of a beta blocker. I came home and read about them and thought no, that looks scary. Really what is finally happening, I think, is that the right tests have been done so that there is a proper dx. I really don't want to be wandering around like I am, feeling like I do. I have been an insomniac this summer, as well as, beeing really nervous, anxious and things like that. I'll repost after I visit with the endo this coming week.

One other thing, has anyone with thyroid problems had other autoimmune problems too, like gluten/celiac disease?

[e3rdpower]

Yes, Hashimoto's and celiac. Autoimmune issues tend to travel in groups. unfortunately.