[shimself]

in reply to: Men With Graves’ and TED #1183993

Just kicking it off

My younger brother (who never smoked) got Graves and TED at age 50ish, it remitted quite quickly leaving him with proptosis and occasional diplopia (when tired or after a couple of beers).

I (who smoked from 15-53) got graves at 57yo, it hasn´t really remitted fully even now after 8 years in that the TRAb is still bubbling along at a very low level 2UI/L, so I´m still on block replace (5mg carbimazole, 88ug levo). It took 6+ years to get the TRAb down from a lowish 8~ UI/L. I´ve had diplopia all that time getting harder to control with the prism specs, but finally it was good enough that I undertook strabismus surgery, and now glory be, I can read withiut specs and am never seeing double, and I feel safe to drive (using the same prism specs as before) further than the supermarket because I´m not worried my vision will turn double.

I can´t understand why anyone would choose to get rid of their thyroid gland.

I can understand, now when I look in the mirror my eyes are as well aligned as anybody else´s, why it is that I need prisms.

I can´t understand why 5mg carbimazole is sufficient to block endogenous thyroid secretion.

Thanks forum for being there

[shimself]

in reply to: Double Vision #1183818

Liz1967 wrote:

I also had the press on Fresnel prism on my glasses but it does decrease your visual acuity. The ground in prisms are better but expensive and your eyes will be changing so I would not invest in them.

When after about a year I switched to proper ground in prisms it made all the difference; I didn’t feel able to drive with the stick on fresnel prisms, the day I got the proper ones I was up and away. It was so badly explained by the hospital that I didn’t realise that the proper prisms wouldn’t have the stripes!
So my advice is the moment you feel your eyes might have stabilised get some proper specs (online about $100 without the superthin photochrome big money options), and ok you might have to change them a few times, but you do get your life back in the meanwhile

[shimself]

in reply to: How many have had proptosis reverse naturally? #1181205

I’va had TED for six years. A few months ago I had a week long course of prednisone (for an arthritic problem), and one of my eyes went back to near normal, and the other retreated a lost as well.

The endo said it wasn’t supposed to happen, but agreed it definitely had.

[shimself]

in reply to: How many have had proptosis reverse naturally? #1181204

I’va had TED for six years. A few months ago I had a week long course of prednisone (for an arthritic problem), and one of my eyes went back to near normal, and the other retreated a lost as well.

The endo said it wasn’t supposed to happen, but agreed it definitely had.

[shimself]

in reply to: methimazole for ever? #1062720

Bobbi wrote:None of us here are going to be able to explain your doctor’s reasoning (for thyroidectomy) — that needs to be done by the doctor. ……

It was just what they generally do, not in any formal way "evidence based". I’ve said no and they’ve said OK.

I’ve done quite a lot of research, and what I’ve found is that it’s generally said that methimazole is a time limited treatment for a couple of years only, but I’ve not found an explanation why. All I have found is that if there are problems they are most likely to show up in the first few weeks of use. So, to put it another way, does anyone know why one shouldn’t stay on methimazole block/replace for ever?

Thanks

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