I am trying to find help and an answer. I have had urine tests and a suppression test using Dexamethasone. This text was done twice because the first time I still had high cortisol. The second time a larger dose was given and suppression occurred.
Interestingly for a couple of days after the test I felt great. But then I crashed and felt terrible and then levelled out again at my usual fat, sweaty self.
No investigation to my pituitary, no further tests other than a picture of my adrenal gland (which was taken because I was being treated for diverticulitis and issues with my digestive tract.
So here I am. No doctor is willing to take on my case, I still have hyper cortisol levels. But I’ve been told it’s because I’m fat. And
I’ve also been told that high cortisol causes weight issues. So currently I feel like I’m being told I’m fat because I’m fat. How is that helpful?
I have been to the dietician like I was advised. Weight loss occurred but was super super slow.
I have been to CBT cognitive behavioural therapy because that’s apparently something you HAVE to do when diagnosed with Chronic Fatigue.
So here I sit with a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels.
I did visit an Osteopath, who said he though I had Adrenal Fatigue. And adrenal supplement under his supervision for a few months which helped slightly but I had to stop because it’s dangerous to use for prolonged periods.
But hey, isn’t Having excessive cortisol for a prolonged time even more dangerous ?
I just don’t understand why I have to become an expert in cushings and hypercotisol before any GP doctor will listen to me and help me.
I felt frustrated and let down.
Ryan
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Sep 21, 2016 @ 10:11:18
Hi Ryan,
I am currently dealing with a very similar situation. I have had three high urines and one normal. I have also not suppressed on the lower dexamethasone. I am seeing a specialist and she believes that I have pseudo cushings – maybe from a response to stress. I will see her again in December and I have to do two more urines and a higher dosage Dexamethasone. Very frustrating. And like you – no relief or cure in sight.
Oct 09, 2016 @ 23:06:04
Through all my research I haven’t found any mention of what the treatment is for pseudo Cushing’s. Do either of you know? I am at the beginning stages of testing with my MD, and I have an appointment with an endocrinologist. I took lots of steroids while on a long regime of chemotherapy, and that’s where the Cushing’s symptoms began. I’ve been off the steroids for a year and a half and the symptoms have remained the same or become worse. My research led me to believe that going off steroids would relieve the symptoms. Do you have any explanation?
Oct 10, 2016 @ 09:13:35
Bridget, taking steroids causes Iatrogenic Cushing’s, not pseudo-Cushing’s. Theoretically, as you say, going off them should make you better but for far too many people the symptoms remain.
There are bios of others who have Cushing’s from taking steroids at https://cushingsbios.com/category/steroid-induced/
It may be that there’s something else going on – has your doctor run any Cushing’s tests?
Oct 10, 2016 @ 15:18:47
Thank you for your response. I’ve just taken my first blood test with my primary care physician. My oncologist is the one who suggested that I have the symptoms of Cushing’s and needed to be tested. So my PCP said he will test for several things related to my symptoms and still send me to an Endo. I’m sure you know, when I read the symptoms for Cushing’s, I almost jumped out of my skin saying, “That’s me! This is why I’m sick!” But of course after feeling this way for two years I am impatient and want to absorb all the information I can. Thank you for sending me in the right direction!
Oct 09, 2016 @ 23:14:49
It is frustrating that you have to be your own advocate, or if you are unable, have someone advocate for you. It is crammed in to doctor’s brains that the simplest explanation is the correct explanation. They do not trust us when we know our bodies are in trouble. You must see another doctor until you find one that will listen and keep performing tests until you find answers and a treatment. You are strong, and you can do it. I have been in your shoes. Good luck, and never take no for an answer. You are the master of your body, and it tells you when something is wrong. Don’t stop until you feel better.
Nov 26, 2017 @ 13:44:03
That must be so frustrating
Some doctors, honestly just don’t get it
I think you need a new one
You probably do have Cushing’s syndrome or
Cushing’s disease
And, it is better to know for sure
Than to not have it treated
Medical imaging and more tests will help
Also see an endocrinologist
Please
Good luck