Thursday, April 30, 2009

Lulu, pituitary bio

I was diagnosed with Cushing's disease September 2007. I've had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed.

I feel worse every day that passes by. I have all the typical symptoms. I've gained 80 lbs, moon face, central obesity, high blood pressure, migraines, blurred vision, prominent buffalo hump, osteoporosis, very fatigued, weak muscles, muscle pain, fast palpitations, I just feel terrible.

I'm afraid to go to sleep every night not knowing if im going to wake up. I just keep wondering how will I know when the time is near for me to go. What am I going to start feeling? Will my organs start to shut down?

I know im at a high risk for a stroke because im so overweight. My current cortisol is in the 200's. I took ketaconozole for a month and ended up in the hospital because the medication was affecting my liver.

So im currently not doing anything about Cushing's. I just feel the light at the end of my tunnel keeps getting dimmer. I just feel sooooo tired all the time, I feel like my life is being sucked out of me. My eyes are so tired it's hard to keep them focused.... Im so tired of Cushing's I don't know what to do anymore.

Email Lulu

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Wednesday, March 11, 2009

Maryanne, adrenal/pituitary bio

52 yr old woman from Sidney, BC, Canada (Vancouver Island) -

I had a kidney stone attack in Sep 09 and was sent for a CAT scan. This showed tumours, one on each adrenal gland. When my GP saw these results, the lights came on, because of my previous symptoms, he was able to determine that I had Cushings and set me for tests to confirm. My cortisol was very high, confirming Cushings, and he referred me to an endo.

An ACTH suppression test came back as low/normal which indicated that there was possibly another tumour. I was sent for an MRI that showed a 2 mm tumour on my pituatary. After further consultation with his peers, my endo feels that I may have a rare case of Cushings where the adrenal glands have decided to ignore the pituitary gland and are independently producing cortisol. They all agree that the first step to a cure would be to have the tumour removed from the pituitary.

I saw the surgeon on 2nd March and will probably have the surgery in two months time. In the meantime, I have been taking Novo Ketoconazole for the past month and already my cortisol levels have dropped dramatically.

This is great news, since one of my Cushing's symptoms is the inability to heal and another is the susceptibility to infections. Hopefully my immune system will be recharged by the time surgery rolls around.

My endo thinks there is a possibility that the adrenals may not have tumours but merely enlarged from being overworked. If this is the case, the removal of the pituatary tumour could cause them to shrink on their own.

Email Maryanne

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