[Anonymous September 21, 1998 at 3:50 pm Post count: 93172]

#1148016

I am having a problem with #6 in regard to the prednisone. Prednisone was only mentioned to me as a last resort treatment because of its side effects. Since you took the time to consult with a thyroid specialist you might consider an Ophthalmologist specializing in GED if one is available in your area. My endo always referred my eye problems to the ophth.

[Anonymous September 21, 1998 at 4:47 pm Post count: 93172]

#1049881

2 weeks ago I went to a new doctor, whose practice is limited only to thyroids. I went (and paid a lot out of pocket) because I wanted an opinion from someone outside of the HMO as to what my situation really is, and what treatment would be recommended. I’d love to hear what anyone thinks of the things he said.

1. He said that he does not consider my case of Grave’s to be particularly mild, as the 2 other endocrinologists that I’ve seen suggested. His rationale for that is:

* My 24 hour uptake was 70%
* My ratio of T3 to FT4I was 20:1 (I think those are the 2
measures he compared — I’m sure about the ratio)
* I have eye symptoms
* I have pretibial myxedema

2. In addition to itchy swollen legs, he mentioned that a way to determine that a person has pretibial myx. is that you can’t pinch the skin on the front of the leg. He demonstrated that we could pinch the skin on my boyfriend’s leg, but not mine. Has anyone else ever tried this?

3. He did an ultrasound, and said that it indicates that I also have Hashimoto’s. He said that this is not uncommon. (In my mind, this would explain why I gained 50 pounds and was losing some hair in the couple of years before the Grave’s showed up.) He did some kind of antibody test to confirm this, but I was out of town all last week and haven’t had a chance to call and get the results yet.

4. He thinks that my chance of remission with ATD’s is pretty low (15-20%). His rationale is:

* The presence of Hashimoto’s with Grave’s actually improves my
chance of remission somewhat
* However, the fact that I have eye and leg symptoms makes
remission less likely.

5. He’s not a big fan of ATD’s. He said that the possible side effects, especially possible liver damage, are so serious that these drugs would not even be on the market if there was anything better.

6. He would recommend RAI for me. But, he would also put me on prednisone for 3 months, to minimize the chance of any eye problems. He will only do RAI during the time I have my period, and even then, I’d have to pass a pregnancy test.

7. He was kind of dismissive of my questions about how they know that I’m at the “right” level when taking either synthetic thyroid hormone or ATD’s. (i.e., I’ve been in the “normal” range, but felt horrible, and the doctors don’t seem to think this is related, or a big deal.)

[Anonymous September 21, 1998 at 10:44 pm Post count: 93172]

#1148017

Hi Kathleen,

First of all I want to thank you for sharing what you have been
told by your thyroid specialist doctor. From my experieces it
sounds like he did more investigative things for you than what
had been done for me.

It appears he is of the same thinking that my previous doctor
was regarding getting the RAI over the use of ADT’s. From all I
have read it seems in the US the doctors prefer doing the RAI.

I think I read on the pubmed the new thing about taking the
prednisone before getting the RAI as a preventative messure to
reduce the problems associated with the eye disease. This was
not done when I had the RAI. I got the eye disease a couple of
years later. I wonder what the dose of the prednisone would be.
I was on put on prednisone before getting the eye radiation
treatments and it was stopped a couple of weeks after it. So I
was on it for about 3 and 1/2 months. That medication had some
wild side effects for me!

All the doctors that I have seen say that if my thyroid levels
are in the normal range they are happy with that. In my case
my not feeling well or normal now is due to me having another
autoimmune disease, Fibromyalgia. I now have a new Rheumatoid
doctor for the problems associated with it and meds for it.

I think it took a my body time to get better after getting the
RAI. Like my hair is back to normal etc. My Fibromyalgia stuff
got bad last year and worse this year. I suspect stress might
trigger my Fibromyalgia symptoms.

So not to confuse you after I got the RAI I felt like I got
back to my old self. Then I got the eye disease and got some
treatment for that. However, after that is when my FMS got
bad and then worse this year. My fibro stuff makes me feel
bad. I get the fatigue and muscle pains.

You might want to keep a daily medical journal as to how
you are feeling. At least you will have some info to take
to the doctor or you can chart how you are progressing with
the treatment you are receiving.

Good Luck,
Michele B.

[Author]

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