Living with Cushing's Disease, Q&A #1 with Rachel, who answers her reader Sarnia's questions.
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- เผยแพร่เมื่อ 13 ต.ค. 2024
- Rachel answers reader Sarnia's questions on the effects of transphenoidal surgery and dealing with physical, mental, emotional and social effects of recovery from Cushing's Disease. If you'd like a question to be answered on an upcoming Q&A, visit Rachel's site, Living with Cushing's Disease, at cushieworld.wor....
It’s so hard to find other cushing’s patients on TH-cam. It’s comforting to hear other people’s stories
My mom might have this and there’s literally no videos on this. Thank you.
thanks a lot for sharing this valuable experience,...so true so straightforward... hopefully it will help me in getting my diagnosis made soon.
I had my Transsphenoidal Hypophysectomy surgery on Dec 15, 2011 at Mayo Clinic.
Thank you for your video and all the advices 🙌🏼
I took my son to the doctor today after a realization that he might have cushings. 2 years ago he weighed 135lbs, a month ago 170lbs, today he is 182lbs. He has had depression for 2 years, his stomach is so distended he has gone from a 30" waist jean to a 36" waist. He has a fat roll on the back of his neck and an obvious moon face. 2 weeks ago he showed me these 6" purple stretch marks on his upper thighs which are very thin. He can't remember things and it used to drive me crazy but now it worries me. He gets headaches and he has had issues with ED and has been perscribed cialis in the past. He is only 22 and 6" tall so the doctors seem to roll their eyes at me when I suggest Cushings because he isn't overweight but still has a huge belly but they at least ordered some blood tests for tomorrow to rule other things out. Am I crazy to think a boy this young could have Cushings?
Kimberly, thank you for commenting. Email me atcushieworld@gmail.com and I can go over specifics with you.
How was your process of reducing hydrocortisone in your body? What symptoms did you suffer? How did you know when you adrenals worked? Did you feel different? Many thanks for your help
Sorry for never responding! I never got any notifications until this most recent comment below. Tapering off hydrocortisone is not fun. I had the same symptoms as adrenal insufficiency like leg pain, nausea, etc. If the symptoms got too bad, I’d go back up to the next highest dose, and stay there for a couple of days, and then try again with a smaller decline. For instance, if I was tapering 5mg a day and that was too hard and caused me to be symptomatic, I would instead taper 2.5mg a day. Takes longer to get to maintenance dose but you want to listen to your body.
As far as knowing if adrenals were working, I would feel like I had Cushing’s again, with a flushed face and not sleeping and weight gain. I’d tell my doctor and she would test to see if adrenals responded to a stim test. If they did, that’s how we’d know it was okay to come off of hydrocortisone.
i also developed a big lump of fat on the back of neck and shoulders,and when i say this to the doc,she dismissed it by saying,oh its just fat lump,go for aerobics ull loose it,then a year layer she said iam a fibryomyalgia patient...thats it..but javnt considered my other Cushing's symptoms,how to get diagnosed is a mystery,..
Asra Aleem hey! I just watched the video and saw your comment. And I just wanted to tell you that I understand you. I was diagnosed with fibromyalgia at 15 years old. Now I’m 2 years older, and I’m getting tested for Cushings. I went to 5 rheumatologists in a year for the pain. I got a bunch of tests done, and everything came back normal. They would look me in the eye and say that I was lying. That there was no explanation for my pain other than that one. It’s been five years since all the symptoms started, but we are really close to getting a diagnosis. Don’t lose hope angel. Everything’s gonna be okay. I wish you the best of luck ❤️
having all these symptoms for about 4 yrs now,sadly yet to get diagnosed,..docs arent verry interested or patient enough to listen to all my symptoms....fatigue ,bone pain,brain fog are the worst bothering symptoms,yet docs want me to exercise..its like they dont even know what fatigue and bone pain feels like,i have visceral,obesity,moon face,high Bp,high tachycardia,worst fatyigue yet iam like no important patient for them.
I’d be finding a new doctor hon
Most doctors are ignorant
How are you doing today?I am in same boat.
Hello my name is Sheila I just finished my first round of tests and now they sent me to an Endocrinologist at Standford so my doctor has me doing one more round of testing to get just Confirm what the first round said. I was wondering if you had any trouble remembering how to spell words or using the wrong words in sentences. I’m so embarrassed and I don’t know how to explain this to ppl😞
I absolutely had that problem while I had Cushing’s. Brain fog is a symptom of Cushing’s. It doesn’t go away entirely after the Cushing’s is gone, but it improves some. I still have days where I can’t remember words. If you have any other questions, you can contact me through my blog at cushieworld.wordpress.com.
SsterSuzie thank u so much. I’m definitely gonna check out ur site. I really appreciate u responding back so quickly 🙂
☘️👍💐T. Y.,, 🇮🇪
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