Aa
On my last legs
Just joined this group just dropping in to say hi and to hopefully get some advice. My cortisol levels have been low for the last 9 months (130) and also had a low acth (2.5). Had the short synacthen test and cortisol levels went up to (600) so they said I don't have Addison's Disease. Ok so I'm getting worse as far as fatigue, heart flutters, depression, etc. Cortisol levels are still low. What do I do next? Any advice gratefully appreciated! Thank you.
I'm going to Boston July 3 to hopefully get answers! Doctors in Florida have no clue. You might be reluctant to say which hospital it was, but I'm very curious! I'm seeing a female at Brigham and Womens. Thx and good luck.
There are some general guidelines out for the diagnosis of Cushing's syndrome - it says to do three types of testing (different types) and rule it in or out, but if "clinical suspicion is high" it may take more testing.
I did tons of urine, saliva, and blood testing. I failed ALL forms of suppression testing - dex, CRH whatever - and even now when I do any stim test - I am pathetic - the which is great for a GH one - so for that I got the meds... but back to Cushing's it was a disaster getting diagnosed as most docs see the silly dex test as a test of exclusion when it is better a test of location. Dex simply puts the pituitary out of the picture - so if you suppress the likely location is then pituitary. Which is the most common form. Duh.
They feel this is a *rare* disease, they are not taught it well (I ran into a professor who was supposedly an expert and even though my ACTH is now over 3000 near 4000 (range up to 48) he said I never had the disease yada yada etc etc). He teaches others the wrong stuff too... Sad.
I had to travel to get my diagnosis - it did take me over 12 years to finally get the gumption and materials (testing) to finally do it - and my body is destroyed due to it.
I did tons of urine, saliva, and blood testing. I failed ALL forms of suppression testing - dex, CRH whatever - and even now when I do any stim test - I am pathetic - the which is great for a GH one - so for that I got the meds... but back to Cushing's it was a disaster getting diagnosed as most docs see the silly dex test as a test of exclusion when it is better a test of location. Dex simply puts the pituitary out of the picture - so if you suppress the likely location is then pituitary. Which is the most common form. Duh.
They feel this is a *rare* disease, they are not taught it well (I ran into a professor who was supposedly an expert and even though my ACTH is now over 3000 near 4000 (range up to 48) he said I never had the disease yada yada etc etc). He teaches others the wrong stuff too... Sad.
I had to travel to get my diagnosis - it did take me over 12 years to finally get the gumption and materials (testing) to finally do it - and my body is destroyed due to it.
Thank you for responding. Actually, the endo dr. did agree to order a 24 hour urine test after I persisted in requesting it. I followed the directions to the letter..kept if refrigerated, etc. Results will be back next week.
What the doctor would not do is order a 24 hour saliva test for cortisol levels. They're taken 4 times a day at certain intervals..and yet this Boston hospital with a national reputation does not do the 24 hour saliva test. Only the 11 pm test 2 days in a row followed by a suppression blood test.
How did you eventually get your diagnosis? I am grateful to learn whatever I can from others. Knowledge is power and if I hadn't gotten my saliva and blood test results myself, I would not have known that they were below low on the reference range. All my doctor said was that they were not high and therefor I did not have Cushing's and see ya later. That's when I asked for the 24 hour urine test to be sure and he was not happy to grant that request. This is the head of the endocrinology department!!
If anyone is listening.....be your own advocate..check and double-check test results in writing.
What the doctor would not do is order a 24 hour saliva test for cortisol levels. They're taken 4 times a day at certain intervals..and yet this Boston hospital with a national reputation does not do the 24 hour saliva test. Only the 11 pm test 2 days in a row followed by a suppression blood test.
How did you eventually get your diagnosis? I am grateful to learn whatever I can from others. Knowledge is power and if I hadn't gotten my saliva and blood test results myself, I would not have known that they were below low on the reference range. All my doctor said was that they were not high and therefor I did not have Cushing's and see ya later. That's when I asked for the 24 hour urine test to be sure and he was not happy to grant that request. This is the head of the endocrinology department!!
If anyone is listening.....be your own advocate..check and double-check test results in writing.
Two tests two days in a row cannot rule Cushing's in or out - I had it myself. Your doc is a endiot - sad to say, and every lab can do a 24 hour urine cortisol so what the heck is that?
For the test - do it when you feel great. That is generally when cortisol is highest. Keep the jug COLD at all times - do not let it get warm as the sample degrades. I usually also do it the day before I go to the lab so it is fully cold before I turn it is as the lab tends not to always put it in the fridge when you get there (another time to degrade) and it is hot outside and take cold packs with me. Follow the instructions - it can be any 24 hour period just get all of it.
AI and Cushing's have many of the same symptoms but alas, neither effectively treated naturally... I wish.
For the test - do it when you feel great. That is generally when cortisol is highest. Keep the jug COLD at all times - do not let it get warm as the sample degrades. I usually also do it the day before I go to the lab so it is fully cold before I turn it is as the lab tends not to always put it in the fridge when you get there (another time to degrade) and it is hot outside and take cold packs with me. Follow the instructions - it can be any 24 hour period just get all of it.
AI and Cushing's have many of the same symptoms but alas, neither effectively treated naturally... I wish.
I was on Effexor for 9 months. I was taken off in Jan. '12 after symptoms showed I was accumulating metabolites (liver couldn't clear the drug and it was building up in my system).
I am being tested for Cushings because of extreme fatigue, weight gain in middle (never happened before), etc.
However, my cortisol is coming back low (11 pm saliva collection for 2 consec. nights both under ref. range and cortisol suppression came back under ref. range) I requested a 24 hour urine collection to test for cortisol because my dr. wanted to write me off as not having Cushings which may be true but he never told me my levels were below ref range (I got copies of the test results from the hospital). Also, when I asked for a 24 hour saliva test, he said his hospital lab didn't do them (this is a well known Boston medical center). When I emphasized how poorly I was still feeling he relented to my request for a 24 hour urine test for cortisol level. Anyone guidance? I am grateful for what I have learned via solid sites on the Internet. I may have adrenal insufficiency and I'm happy to treat it as naturally as possible if that's what I have.
I am being tested for Cushings because of extreme fatigue, weight gain in middle (never happened before), etc.
However, my cortisol is coming back low (11 pm saliva collection for 2 consec. nights both under ref. range and cortisol suppression came back under ref. range) I requested a 24 hour urine collection to test for cortisol because my dr. wanted to write me off as not having Cushings which may be true but he never told me my levels were below ref range (I got copies of the test results from the hospital). Also, when I asked for a 24 hour saliva test, he said his hospital lab didn't do them (this is a well known Boston medical center). When I emphasized how poorly I was still feeling he relented to my request for a 24 hour urine test for cortisol level. Anyone guidance? I am grateful for what I have learned via solid sites on the Internet. I may have adrenal insufficiency and I'm happy to treat it as naturally as possible if that's what I have.
I was on Effexor for 9 months. I was taken off in Jan. '12 after symptoms showed I was accumulating metabolites (liver couldn't clear the drug and it was building up in my system).
I am being tested for Cushings because of extreme fatigue, weight gain in middle (never happened before), etc.
However, my cortisol is coming back low (11 pm saliva collection for 2 consec. nights both under ref. range and cortisol suppression came back under ref. range) I requested a 24 hour urine collection to test for cortisol because my dr. wanted to write me off as not having Cushings which may be true but he never told me my levels were below ref range (I got copies of the test results from the hospital). Also, when I asked for a 24 hour saliva test, he said his hospital lab didn't do them (this is a well known Boston medical center). When I emphasized how poorly I was still feeling he relented to my request for a 24 hour urine test for cortisol level. Anyone guidance? I am grateful for what I have learned via solid sites on the Internet. I may have adrenal insufficiency and I'm happy to treat it as naturally as possible if that's what I have.
I am being tested for Cushings because of extreme fatigue, weight gain in middle (never happened before), etc.
However, my cortisol is coming back low (11 pm saliva collection for 2 consec. nights both under ref. range and cortisol suppression came back under ref. range) I requested a 24 hour urine collection to test for cortisol because my dr. wanted to write me off as not having Cushings which may be true but he never told me my levels were below ref range (I got copies of the test results from the hospital). Also, when I asked for a 24 hour saliva test, he said his hospital lab didn't do them (this is a well known Boston medical center). When I emphasized how poorly I was still feeling he relented to my request for a 24 hour urine test for cortisol level. Anyone guidance? I am grateful for what I have learned via solid sites on the Internet. I may have adrenal insufficiency and I'm happy to treat it as naturally as possible if that's what I have.
The salt craving is part of it...
If your tests show you need potassium, you are safe taking it - otherwise, it is advised not to take more than an average dose and to avoid when sick. The reason is that sodium and potassium work in tandem - and a crisis occurs when sodium tanks and potassium spikes. In some of us, both tank. So you have to know.
Walnuts... wow.
If your tests show you need potassium, you are safe taking it - otherwise, it is advised not to take more than an average dose and to avoid when sick. The reason is that sodium and potassium work in tandem - and a crisis occurs when sodium tanks and potassium spikes. In some of us, both tank. So you have to know.
Walnuts... wow.
Yes I crave salt like it's going out of fashion and walnuts for some strange reason! Also bananas which I believe are full of potassium. It's been a series of low results from mid last year. I have lost about 15 kilos in the last 12 months.
In general, when you have AI or addison's, sodium and/or potassium is messed up... so it could be something else (or you ate a lot of salt?) or the issue is something else entirely. If it is your female hormones - it could be anything from CAH to pituitary to... so... One cortisol test is not diagnostic!
Have you lost or gained weight?
Have you lost or gained weight?
Hey rumpled,
Thanks for the reply. They haven't done an antibody test and as far as I know sodium and potassium are ok. Don't know about Aldosterone and renin but my female hormones are all over the shop!!!
They did a morning non fasting test.
So anyway I'm sure they are now going to say everything is fine but meanwhile I'm going down!!!!!!!!!
Thanks for the reply. They haven't done an antibody test and as far as I know sodium and potassium are ok. Don't know about Aldosterone and renin but my female hormones are all over the shop!!!
They did a morning non fasting test.
So anyway I'm sure they are now going to say everything is fine but meanwhile I'm going down!!!!!!!!!
You can pass the test and still be sick - your adrenals may be on their last legs. Did the doc do an antibody test - and how are your sodium and potassium levels? Aldosterone and renin? What about other hormones?
Did they only test in the morning - and did they test correctly at 8am fasting?
Did they only test in the morning - and did they test correctly at 8am fasting?
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