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cortisol replacement questions



Hi Carolyn here I had a pituitary tumour removed 20 months ago and am now on cortisol replacement would love to here from somebody who is also doing this and how they manage it. Nobody around here has even heard of Cushings and the doctors are not a great deal of help either considering I had been to every doctor in our town over the 9 years from when I first started getting symptoms and they all palmed me off as a neurotic. I take 10mg in the morning 6 at lunch and 4 at around 6pm stressing with a 22 year old son at the moment and not doing too well do I take more do I take more if I do a really hard days work do I take more if I have a big night on the town any info will be appreciated.



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Carolyn, what are you taking to replace it? My daughter suffered with cushings since 2004 for sure, probably earlier, and wasn't diagnosed until about 5 months ago. She had a large tumor on her left adrenal gland and it was removed 3 weeks ago along with the gland.

Her right gland is still suppressed and she was on prednisone when in the hospital...she's been home for 5 days and she saw the endo today. It was not easy..she is weak and in pain and her incision was left open with a wound vac. The prednisone gives her hot flashes (common) and also causes bloating. I asked the dr. about cortisonacetate(cortef)because a guy I know had a kidney transplant and his adrenal glands removed and he is on cortef and it has no side affects. The doctor explained it was an older drug not used as much today, milder, and he decided to try it. She'll start it tomorrow and we are praying it will help the remaining gland to wake up and start producing cortisol.

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Hi Carolyn here, I am on hydrocortisone tables my pituitary does not tell the adrenal to produce cortisol evan thou they can. After the op they tried to stress the pituitary to function and I was only on small amounts. But after 10 months my levels were actually going down and I was getting pretty weak. As soon as I started full replacement I felt sooo much better actually only took a few days of corse I just gradually got stronger and stronger. I do get hot flushes but that would probably be the only side effect I can think of. Thats a small price to pay for such a change in my life. A couple of years ago my outlook was not too bright. Hope you get something to suit your daughter soon. Best of luck

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