[Anonymous October 22, 1996 at 11:21 pm Post count: 93172]

#1168396

Hi Sue!

I have the Opthalmopathy staring in Feb of ’93. By July it had gotten so bad (I was on 120mg prednisone) they decided to do orbital irradiation. I was almost blind and my Ophthalmologist considered it a last resort type of treatment.

The procedure itself was a piece of cake and by the end of the two weeks I was regaining some vision, mostly noticeable with the return of red color vision.

I can’t say for sure how much good it really did as I continued with up and down eyesight for another year and half, including bouts of 20/200 vision and of course yo-yoing up and down on that nasty prednisone. I also had a good dose of secondary glaucoma during this.

Now, almost four years later, my eyes have gone back in on their own quite well and my vision is pretty good. I do have double vision and am scheduled for surgery in a couple of weeks.

The eyes are still very dry and uncomfortable but don’t limit me too much now.

If you have any more questions, feel free to email me.

Bruce

[Anonymous June 18, 1997 at 7:54 am Post count: 93172]

#1168397

I just found this BB and am thrilled. Wish I found it sooner. I was diagnosed with Grave’s Disease 9-93 after a year of symptoms that would come ago. I went from being a marathoner to someone who could run only 2 minutes so I am interested in anyother G patients who exercise. I went to the ER with my chest pounding out of my chest assuming something was wrong with my heart. I think they thought I was having a panic attack and attributed all my many (the usual) symptoms to menopause even tho I had a baby not long before. Eventually I was correctedly diagnnosed tho looking back, not treated in the best manner. I was on PTU for a year and then had the RAI. Within 3 months I become hypo and began the long search for the perfect dose of synthroid. I am a fairly large and active woman and take `160ug daily. I’d be interested in what doses others take. I am probably overdosing myself somewhat as I can’t tolerate any hypo symptoms. A Grave’s friend underdoses himself because he rather deal with the hypo symptoms. Yes I get my TSH checked and its on the low side but cliniically I have such a slow heart rate(I still run-just not very well) the doctors figure I must be alright. Lurking through past posts I see weight gain is a big issue with many of you. With Grave’s,my appetite was incredible-I’d eat everything in sight. I was not able to exercise as much so of course I didn’t think this was a good combination and never got near a scale for fear what I would see. As it turned out, I lost20lbs but since some of it was muscle, I didn’t look so good(I am now 44 ) I had been puzzled because I would notice that I could run faster and longer when I weighed more(my Grave’s symptoms would come and go for 2 years before I got really bad) On PTU, I gained 10 lbs almost instantly despite cutting back on food and starting to exercise more. Since RAI, I gained another ten pounds and seem to be stable tho’ I would look better ten pounds lighter. I have questions about the RAI-Are the thyroid C cells destroyed and what about the parathyroids? Do RAI patients have trouble with osteoporosis down the road from lack of calcatin(sp?)? Do Grave’s patients in general have decreased life spans even if they were treated?From what I read, every cell in your body is programmed for so many cell divisions before dying out-Graves increases the cell turnover-does this mean our cells die out before ‘regular’ people. I know Grave’s is associated with premature graying(got that). The doctors told me I had Grave’s skin(unsuually fine) I resisted the RAI for along time uncomfortable with losing a gland that might have more than one obvious function. Any thoughts on this and any other of my ramblings would be appreciated. I am a research chemist, a mom of two teenagers and a 6 yr old and run for fun and exercise.
Sue

[Anonymous June 18, 1997 at 2:18 pm Post count: 93172]

#1168398

Hi, Sue, and welcome to the board. I can answer some of your questions.

Re: the parathyroids. This is one advantage of RAI over surgery. RAI leaves the parathyroids alone and functioning.

Re: osteoporosis. Loss of bone density/osteoporosis is associated with being HYPERthyroid. Therefore, if your replacement dose is too high, or if you are deliberately taking more to keep yourself on the hyper end of things, you could be increasing your chances of losing bone mass and incurring osteoporosis.

Re: premature greying. According to The Thyroid Sourcebook, premature graying is one sign that there might be an increased risk of thyroid disorders . I.e., it’s not just Graves.

Re: your problems running. If you are keeping yourself on the hyper end of things, you may be draining your muscles of chemicals they need to sustain high levels of exercise. Luci and I have had a discussion about this (on the phone). She was given the information that being hyper drains the ATP (I think that was it). I have a friend who is a marathoner, and borrowed one of her books that talked about the biochemistry of this substance, but failed (utterly) to really understand what was going on. Needless to say, though, when I am on the hyper end of the “normal” TSH range, my muscles do NOT recover well from exercise.

Hope this helps.

Bobbi

[Anonymous June 18, 1997 at 11:32 pm Post count: 93172]

#1168399

Welcome to the BB Sue – being a research chemist I’m sure everyone is
delighted your about as you may be able to explain some things to us.
I am also 44 but I had surgery so most of your questions I can’t
answer but I’m sure one of the others will answer them for you.

But one of your questions I can definitely answer the one about
decreased life span. My aunty who has just turned 80 ( she looks
like she’ll be here for a while yet) had RAI for graves
about 20 years ago. Now if I get to 80 with her attitude to life I’ll
be more than happy.

Kathleen.

[Anonymous August 2, 2011 at 12:15 pm Post count: 93172]

#1058385

Hi-I’m 38 years old and have had Graves for about 12 years now.
I have been treated twice with RAI and am unfortunately now suffering
the eye problems many of you are having. Mine have been very dry
and not closing at night. I am very frustrated by the fact that
my body still seems to be producing what my Dr. tells me are
antibodies. I have been on Predisone for about 3 yrs now and I can
only do low doses because I am very sensitive to medications. I am
only taking 5mg every other day now. I was taking 10 every other day
but I was way to moody and puffy so my Dr. had me decrease. Since then
my antibodies have been going back up and I’ve been having more eye
symptoms. I wanted to see if any of you had radiation behind the eyes
and if so did it work? I am trying to decide what is the best course of
treatment for me and thank god I came upon this list. I like my Dr.
but sometimes feel he is to cautious and I’d like to get off the
steriods. He seems to feel that the radiation and some other new
treatment are to risky to do because there are no quarantees they
will work. I would appreciate any info from anyone as I go on Fri am.

I want to say I am VERY excited about this list. I have been looking
for support groups but their are none in my area. It is so comforting
to know that many of you are going through the same scary situations.
I hope eyou don’t mind my asking a few questions from time to time
I have alot of catching up to do. I am a member of the NGDF. Has
anyone on the list had a thyroid storm? Well I’ll sign off for now I
look forward to corresponding with all of you.

Sue

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