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Elara, Undiagnosed Bio

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undiagnosed3

 

I had a low level dexamethasone test done 3 months ago. Not bad. Only 67 mm/ol.

But this time, 3 months later, my blood test showed 367 mm/ol.

I wonder if I have pseudo Cushings due to my daily high alcohol intake or do I have the real thing.

 

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Ryan C (Awesomenatious), Pseudo Cushing’s and Chronic Fatigue

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undiagnosed2

 

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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Marian (MaidM), Adrenal Bio

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Hi!

I have provided a timeline of my Cushing’s related tests and symptoms.

Symptoms since 1994

Diagonsed: August 2012

Surgery:  August 2012

 

Other Key Dates/Symptoms:

1993-2009:  NIght sweats, heart palpitations, difficult losing weight, anxiety

 

2010:

+Kaiser Acupuncturist  checked DHEA levels.  Lowest she had ever seen.

+Referred to Kaiser endocrinologist (Dr. Lee)

+ACTH Very low

+Cortisol moderately high

+Abdomen CT showed 2 cm growth (Mis-read as possible cancer by radiologist)

+MRI showed possible small brain adenoma

+Referred to NIH

+Labs normal

+Reviewed MRI/ CT.  CT showed 2 cm adenoma (benign) and no brain adenoma.  (They said Kaiser overead the MRI and were sure about the CT not showing any cancerous characteristics)

+Initial diagnosis: Psuedo Cushing’s and revised to Cyclical Cushings

 

2012

+Increased symptoms.  Weight gain, hump, fluid retention, moon face, fatigue, irritability

+NIH follow up showed high cortisol (confirmed 2X), low DHEA, low ACTH

+Suppression test confirmed Cushing’s Syndrome

+Bone scan showed 25% bone density loss in 3 years.

+Diagnosis: “Sub Clinical” Cushing’s Syndrome (borderline…I don’t  “look” like Cushiing’s unless you compare before and after photos.

+Repeat CT confirmed benign 2 cm adenoma (no growth)

+Surgery scheduled for Aug 27, 2012.  Re-scheduled for Aug 29, 2012.

 

Hope this helps!

Feel free to contact me,

MaidM

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