Where to start?

Hi everyone. I haven't written a post because I don't know where to start

Ok. I think my main problem is that I may have a Cushings. After my GP got freaked out by my symptoms, I was referred to a physician. He was great. He asked me so many questions. By the end of the consult,he said it sounded like I had too much cortisol. So the testing began. We are about 18 months down the track and still testing. Soooo much has happened to me that it has become so overwhelming that I don't know how much more my body or mind can take. Don't know where to start, so thought I'd start with this, hoping you may ask questions. Has anybody out there gone through this nightmare, and how did you go?

11 Replies

  • Hi Zander. Welcome to the forum . Sorry I know very little about Cushings. Are you in pain with it ?


  • What are yr symptoms?

  • Hi there. Peripheral neuropathy, bilateral carpal and cubical tunnel syndrome, iron def anemia, vit B12, and vit C deficiency and vit D depletion, muscle pain and wasting, fat ++ around my abdo, painful joints. Im on pregabalin ( which I hate), duloxetine, codeine, ibuprofen and all the vit. replacements which I don't seem to absorb. My periods are all over the place. My hair has been thinning, as is my skin. Oh, and I do have soke depression, surprise surprise. I don't uave a single moment when I am not in pain.

  • Hi Zander01 - I don't know much about Cushing's Disease but I do know it's to do with cortisol production (too much?) and that there's a group on here - ThyroidUK - which deals with not only thyroid problems but also adrenal problems too (that's the gland that produces cortisol). In my case I have too little cortisol production and I've found a wealth of advice over on that forum. If I were you I'd ask your question on there too. :-)

  • Thanks. We've got a group over here as well and I've managed to read through their book. Good info but it doesn't help me feel any better when im really hurting which is pretty constant. If you think I'm not on the right forum, let me know and I'll find another. I will go to the site you mentioned, so thanks for that. By the way has anyone out there had a combined carpal and cubital tunnel release? I don't really know what to expect post op? . Mine is in 5 days thank God. CHEERS GUYS.

  • It's another forum here on HealthUnlocked. Here it is:


    You can be a member of both. If you search the forum I've mentioned above looking for advice on Cushings you should find it. Also, they'll be happy to help if you put up a post on there. Good luck!

  • Thanks so much. I'll check it out now. If I don't come back, good luck to you all. Cheers from Australia.

  • Have you had a genetic look at what could be the culprit? You have a lot of the symptoms I have but it isn't cushings.

  • Sorry. Just wrote a big response but I don't know where I sent it. Still new to this. I will get back to you.

  • My mother had adrenal problems, she was CAH which Congenital Adrenal Hyperplasia. Mum had no adrenal glands, she took Florinef and Hydro Cortisone. When mum would be sick or end up in hospital, they would put her on Prednisolone. My mother was the longest living person in Australia with this condition, also the longest on this medication

  • Hey. Thanks everyone. Just a diversion from the Cushings. Does anyone know anything about Erythromyelalgia. I don't and I am terrified cos no one else does much either. Advice on pain relief ( long term unfortunately) and what I may have to look forward to on the future. Cheers guys

You may also like...