CFS_for_19_years
Hoarder of biscuits
- Messages
- 2,396
- Location
- USA
I saw my endocrinologist Thursday because I thought I had adrenal insufficiency and needed to have that worked on. She surprised me and said she thought I had high cortisol, i.e. Cushing's syndrome. I have to agree with her assessment because I've gained a ton of weight over the last two years. My other symptoms have been a pounding heart 24/7, never rapid and I've been taking atenolol for that for two years. I've had more fatigue and my heat intolerance is horrible. I sweat in a nightgown when it's 70 degrees. I don't go to sleep at night.
The other thing she suggested screening for is pheochromocytoma, a type of adrenal tumor.
I'm just now starting to do the screening tests which involves collecting a 24-hr urine for cortisol. There may be other tests ahead like a midnight salivary cortisol and/or a dexamethasone suppression test. Once I've received a firm diagnosis, then there will be imaging studies to figure out where the tumor is. It could be on the adrenals or pituitary or lung. Getting rid of the tumor involves surgery and/or radiation, chemo, or suppressive drugs.
Sometimes the entire adrenal glands are removes and guess what happens then???? Instant adrenal insufficiency that means a lifetime of hydrocortisone replacement. If it's a pituitary tumor that's causing the problem, sometimes the surgery fails and they have to go after it a few times....multiple brain surgeries! If they can't get the pituitary tumor, they say screw it, remove the adrenals.
I'm 60 and have been fighting CFS/ME and fibromyalgia since 1990. I had some adrenal testing in 2007 which showed I was clearly deficient then (saliva testing) so this Cushing's stuff would have developed sometime after that. It could have even started four years ago when I started to pack on the weight.
I'm really weary and can't fathom fighting all this crap. This feels like a cruel joke. Right now I'm just venting. I know there are Cushing's support forums and I tried to register at one and got a server error message so I'll try again later. I know that people here understand and can relate to the weariness I'm feeling. I don't live near any friends or family. One family member won't discuss this until I have the diagnosis...thanks a bunch. I've set up a page at carepages.com so family members/friends can follow my progress. Not one person has registered there yet, even though I've sent them invitations. I set up a carepage so I wouldn't be sending out batches of emails; I would just have a web page.
On top of the suspected Cushing's, my thyroid is off. I have an elevated TSH and normal free T4 which indicates mild thyroid failure. My endo hasn't told me what she thinks of that. I sent a message to her and asked if she would test for thyroid antibodies. My kidneys look iffy too. My GFR dropped 11 points in 3 months - from 68 to 57. My doc wants to wait 4 weeks to recheck that. All I can say is crap crap crap....what the hell is going on.
The other thing she suggested screening for is pheochromocytoma, a type of adrenal tumor.
I'm just now starting to do the screening tests which involves collecting a 24-hr urine for cortisol. There may be other tests ahead like a midnight salivary cortisol and/or a dexamethasone suppression test. Once I've received a firm diagnosis, then there will be imaging studies to figure out where the tumor is. It could be on the adrenals or pituitary or lung. Getting rid of the tumor involves surgery and/or radiation, chemo, or suppressive drugs.
Sometimes the entire adrenal glands are removes and guess what happens then???? Instant adrenal insufficiency that means a lifetime of hydrocortisone replacement. If it's a pituitary tumor that's causing the problem, sometimes the surgery fails and they have to go after it a few times....multiple brain surgeries! If they can't get the pituitary tumor, they say screw it, remove the adrenals.
I'm 60 and have been fighting CFS/ME and fibromyalgia since 1990. I had some adrenal testing in 2007 which showed I was clearly deficient then (saliva testing) so this Cushing's stuff would have developed sometime after that. It could have even started four years ago when I started to pack on the weight.
I'm really weary and can't fathom fighting all this crap. This feels like a cruel joke. Right now I'm just venting. I know there are Cushing's support forums and I tried to register at one and got a server error message so I'll try again later. I know that people here understand and can relate to the weariness I'm feeling. I don't live near any friends or family. One family member won't discuss this until I have the diagnosis...thanks a bunch. I've set up a page at carepages.com so family members/friends can follow my progress. Not one person has registered there yet, even though I've sent them invitations. I set up a carepage so I wouldn't be sending out batches of emails; I would just have a web page.
On top of the suspected Cushing's, my thyroid is off. I have an elevated TSH and normal free T4 which indicates mild thyroid failure. My endo hasn't told me what she thinks of that. I sent a message to her and asked if she would test for thyroid antibodies. My kidneys look iffy too. My GFR dropped 11 points in 3 months - from 68 to 57. My doc wants to wait 4 weeks to recheck that. All I can say is crap crap crap....what the hell is going on.