Zero weightloss after 8 years...

I was dx with cyclical exogenous cushings syndrome with hpa axis suppression in 2012.

Doubled in weight over the ten years it took to dx.

mine was from fluticasone steroid in seretide for asthma. had been on a different steroid inhaler for over 20 years without a problem but when changed to fluticasone in 2000 everything changed.

over the ten years before diagnosis, all the usual stuff, weight gain, insomnia, anxiety, psychosis to some extent, straie, moonface, depression and could not cope with any social gatherings. And if course the unbearable, embarrassing sweating.

once dx and the fluticasone stopped and changed to safer lower dose spray then the true damage of ten years excess steroid became apparent. have severe muscle damage and could not stand for more than 20 minutes and use a wheelchair if out.

Was on replacement steroid as hpa suppressed so the usual weaning was tried to force adrenals to work again but this failed. Constantly got very ill heading for crisis and heart would beat strangely.

Several endos over the years have said the weight won't come off because im on replacement as well as inhaler. There is nothing that has worked to get any weight off.

Now and again I come across endos with zero experience of cushings who accuse me of being on too much replacement and that's why Im so big still. My replacement dose is not too much, its the lowest we could get it without keep collapsing.

Three years ago my bp which was crazy high with cushings and left my heart enlarged, started to get very erratic and ended up with afib.

I now have permanent pacing after an av node ablation but am still in afib 50% of the time. This has now reduced my standing time to around 8 minutes, extreme weakness. Can no longer do a flight of stairs, just a couple like a 90 yr old.

Basically from what I've read on forums, those who go straight from cushings to living permently on replacement steroids don't lose weight and although the cushings is not active and zero weight gain, you live in a limbo situation where you stay looking pretty much cushingoid.

I now have zero life, I can barely shower as so weak now since heart stuff.

Any others out there in limbo on replacement? As whether from adrenal tumour, pituitary tumour or exogenous, if it takes ten years to dx then too much damage done.

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