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Possible/Pseudo Cushing syndrome
Diabetes & Endocrine System | Last Active: Feb 19 7:27pm | Replies (24)Comment receiving replies
Just discovered this great resource. Over the past 12 years I have gone from 105 lbs to 190. Before this I was always around 103-110 (even after two pregnancies).
I started seeing doctors 10 years ago when at 115 because I knew it was not normal. No doctor has been able to diagnose. Now I have many other problems including diabetes, have very little stamina and can't even walk a block without shortness of breath. I used to run 20 miles a week and bike ... but my whole personal and professional lives are horrible now ... can't even make it to programs and meetings because I don't feel well.
I've done many blood tests of all sorts over the years and several MRI of pituitary and adrenal.
Now, I am exhibiting all the symptoms associated with Cushings Syndrome except the 24 hour urine cortisol test. While I do show small adenoma on pituitary and all the symptoms, they don't think its Cushings related due to the 24 hour urine cortisol coming back 'normal.' I've done saliva test and morning is 'in range' but night time and afternoon are high. The suppression test is also coming back 'normal.'
One thing I do know is that I don't sleep well. But 85 lbs due to poor sleep?
One observation I have shared with the doctors (but they continue to disregard it but worth mentioning) is that for 1.5 years 13 years ago I took Ativan which caused a huge weight loss (but had severe negative side effects including delirium and retrograde amnesia). It might be a clue, however, that research has shown in some patients it lowers cortisol levels. I took it 3 times more a few years ago (each time only for 3 days or so when close family members passed away and each time I exhibited all the same symptoms including huge weight loss). So, this may be just coincidental or may be a clue.
I've seen doctors at Stanford and UCSF, but none really listen and keep repeating the same tests over and over again.
So now, 12 years later I've gone from an active person to basically one who can't even walk a block. At 50 I was in best shape I had ever been and now at 60, well.
I am a moderate eater, Mediterranean diet.
Replies to "Just discovered this great resource. Over the past 12 years I have gone from 105 lbs..."
Hi @mishkamilad, I wanted to welcome you and just put this discussion on your radar as well so you could connect with more people about Cushing syndrome.
Possible/Pseudo Cushing syndrome: https://connect.mayoclinic.org/discussion/possible-cushing-syndrome/
How many opinions have you received regarding your symptoms?
@mishkamilad - I understand how upsetting it is not getting a straight answer from so many doctors.
My daughter spent years going to numerous doctors for similar symptoms- she gained a lot of weight quickly- this girl was a competitive swimmer-, developed diabetes, muscle weakness etc.
She finally found a doctor who knew what was happening to her.
There are many of these illnesses that are rare and most doctors never see a patient with an unusual diagnosis such as Cushing’s.
That’s why you have to find a major teaching hospital that is known to specialize in pituitary problems. Your best bet would be to be seen at Mayo Clinic.
Would you be able to visit one of the Mayo Campuses?
By the way, I have another daughter overseas who is struggling to find a doctor knowledgeable enough to understand that she may also have Cushing’s. She had one elevated cortisol and can barely function because of extreme exhaustion and body pain.
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You mentioned your concerns about Ativan, that made me wonder if you have had or considered pharmacogenomic testing? Several years ago the acceptance of pharmacogenomic testing seemed to vary from one teaching Medical Center to another. I don't know if that is still the case (Stanford wanted more validation I was told as a clinic patient). Pharmacists, even my dentist seemed more interest in the results! Pharmacogenomic testing potentially could validate on paper why you responded in the manner you did to Ativan.