betseebee

Thank you for posting this Mary. 

I wish there was a way for you to get advertising revenue.

I come back here every once in a while--it's a comfort to know that it is here. You saved my life as well, Mary.

That's amazing MCF. Thanks again.

Thanks for posting this Mary. As someone who has had three surgeries for Cushing's--2 pituitary surgeries and one adrenal removed--and still doesn't feel back to normal, I can attest to how difficult it can be to deal with friends and family. I find them offering exercise and dietary "advice"--which they seem to think is the cure for everything. If you are like most patients with Cushing's or who have had Cushing's, you have already gone on every diet under the sun and tried many holistic treatments--only to find that they don't help. Who among us hasn't also heard "Oh, you just need to be more positive." People simply cannot accept that this is an illness that can have life-long repercussions.

Thanks for posting this. I'm curious to know, if you don't mind sharing, what you were eating that caused you to gain the weight and then what you eat on the low histamine diet. Does this diet help fibromyalgia symptoms at all, do you know? What histamine-related symptoms did you have? Thanks in advance for your reply.

Thanks for posting this Phil. It answers a lot of questions I have.

Thank you all for clarifying what the Cushie brain can overlook. Breathing easier now.

So 46 percent died within the first year after the BLA? That scares the daylights out of me. Aack. Chickening out. 

Hi,

So sorry to hear you got the run-around, which so many of us can relate to. I am glad to hear they finally found your tumor though. There have been people on these boards with kidney cysts and Cushing's but it's been awhile and I don't remember who they are. I seem to remember that a Cushing's expert, Dr. Ludlam, who used to work in Seattle told patients that cysts anywhere in the body are common with Cushing's. For example, I have a pineal gland cyst and liver cysts. My liver cysts have shrunken though since my last CT scan--I am currently in remission from Cushing's so perhaps the high cortisol was indeed causing these cysts. Perhaps someone who knows more about kidney cysts will chime in here. Good luck with everything.

O.k. well this question is a little past the deadline but I hear that not all patients can take Korlym. Which type of patient should not take it?

Looking forward to it Mary. Thanks so much for arranging it.

If you think you might have Cushing's then it is important to rule it out. You need to do many urine tests for cortisol--if you can do four over a two-week period, along with four salivary cortisol tests that would be a good start. As a person who had Cushing's for many years before diagnosis I cannot stress enough how important it is to get an early diagnosis--the more weight you gain the harder it is to lose and the more damage is done to your muscles, bones, eyes, heart, etc. Even many endocrinologists have problems diagnosing Cushing's because they believe it is too rare and they are not up-to-date on the latest testing. Get copies of all your tests (it's your right) and keep pushing for more testing. Good luck and keep us posted.

Hi Kristina and welcome to the boards. It sounds like you have been through a lot and I hope your tests will give you the answers you need. Everybody is different of course but it seems as though younger people with Cushing's lose weight a lot more easily after successful tumor removal than anybody else. Being tired in the weeks after surgery is pretty typical as well but it can also take a while to be able to sleep through the night again. People with successful tumor removal don't seem to suffer from the kind of fatigue people with full-blown Cushing's experience. Many people need to keep an eye on their hormones after surgery and replace whichever ones might become deficient (including growth hormone). We will try to answer any other questions you might have. Good luck with everything and please keep us posted as to how things go.

New:

Elizabeth, California.

Pituitary surgery #1, 2009.

Pituitary surgery #2, 2010.

In remission but constantly testing for a recurrence.

So good to hear from you Lisa, I was wondering how you've been doing. Congratulations on your weight loss! I would get those nickel-size bruises on my abdomen when doing the GH shots too--but I found the trick was making sure the needle was completely perpendicular to the surface of the skin to avoid bruising.

You may want to discuss going lower on the GH to .1 mg with your doctor if you still are having problems--or perhaps doing the shots every other day like you mentioned. I went off GH completely and many aches and pains returned that seemed to may have improved on it--it is hard to know for sure though if going off GH caused the pains or if decreasing hydrocortisone post-surgery has done it. If you have memory problems you may want to see if they improve on GH.

Best wishes for your continued recovery!