It’s unbelievable but the idea for Cushing’s Help and Support arrived 19 years ago tonight. That’s a long time for anything online.
I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.
The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!
The message boards are still active and we have a Cushing’s Awareness Day Forum, podcasts, phone support and much more.
Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.
Of course, we now have a Facebook page and 2 groups. Both are secret, so if you want to join, please email or PM me for an invitation.
Other sites in the Cushing’s Help “Family”
I have been struggling with progressive symptoms of extreme fatigue, muscle weakness, increased anxiety and depression, rage, acne, weight gain, and sweating just doing small tasks over the last 3 to 4 years. I also have a very hard time controlling my body temperature. I get really cold, turn the heat up, get really hot, turn the heat down, over and over throughout the day. (I’m 36 years old) If I’m sitting I’m freezing. If I’m up moving I’m on fire and sweating. Just such dramatic ends of the spectrum. Anyway, for a long time my GP was only checking my TSH. (Hypothyroidism runs strong in my family). My TSH has always been on the low end of normal. I was feeling so awful, I insisted they were missing something and asked them to check my FT4. That has also always ran at the lower end of normal. They treat me with Levothyroxine to try to increase my FT4, but in doing so, cause my TSH to go even lower. I googled what it meant to have a Low TSH with a low FT4 and it said it could be hypothyroidism caused by a pituitary tumor. I then came across Cushing’s which started showing pictures of the classic “buffalo hump” and my jaw hit the floor.
About a month ago, I caught myself in profile in my mirror and was completely taken aback by my appearance. My husband and I aren’t sure how long my neck has looked this way. Either way I was just wondering what others thoughts were. My GP has ordered some kind of cortisol test thus far that I’ll go for tomorrow. I would also like an MRI of my pituitary and possibly adrenals. I’m just tired of sleeping my life away and have been searching for answers for so long. Please let me know what you think of the hump.
Are there other causes for this appearance? Thanks