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Addison's Disease Message Board

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No,but I'm going to have one Thursday, due to low cortisol test results. My Doctor ordered this and after reading on here, opinions about Saliva testing,maybee I shouldn't be so concerned,as I have been,about my low readings?? Which are below.
Morning..1.6.. rf.range...5.1-40.2
Noon..1.5.. rf.range...2.1-15.7
I wish you a good outcome and better health!
I'm going to jump in. Hi Flowergirl! I'm having an ACTH Stim test on Friday. I was low in cortisol, too. I am also anemic after a gastric bypass surgery in Sept. I don't know what is causing what symptoms. It sure is hard to get any feedback on this board. Here's a weird something: the RN at my endo's office was setting me up for the ACTH test and stopped and said I could only have the test during the 1st week of my menstrual cycle. She was quite sure of that. Well, that threw me off cuz I didn't quite know when that was without checking my calendar at home. So, I call back the next day with the dates and the endo herself gets on the phone and tells me it makes no difference whatsoever when the test is done. OK but meanwhile I have looked for info on-line and I found references that say having the test done late in the cycle can alter results due to the action of rising progesterone. Pretty confusing.
I was also ordered to have a blood sugars done while fasting and after a meal. I won't see the endo until all tests are complete. Sorry I can't be of help because this is all new to me, too. Suzy-Q
I agree it is hard to get feed back here. I just spent some time checking about a dozen different websites and none mentioned having the ACTH test at a certain point in the cycle. All of them mentioned it is done by 8 am after fasting, a few suggested eating a low carb diet in the days proceeding the test, and one suggested avoiding exercise 12 hours before the test. I too thought I had heard or read somewhere that you should have it done at a certain point in your cycle, hmmm it is confusing! I have had my ACTH and cortisol check twice, the fist time they were both very low and the second time not as low, but it was drawn at 10:30 in the morning. I am seeing a new Endo this Friday, and have high hopes, just hope they aren't dashed all over again!
By the way, how are you doing since your bypass? I had a VBG 10 years ago and lost 125 pounds and mange to keep it off with in 10 pounds.
Congratulations with your success with bariatric surgery, that is a great weight loss story. Well, I am just 4 months post-op. I have lost a lot of weight and that is for sure. I am down to 158 lbs already. That is the good part. Otherwise, my recovery has been quite rocky. I had several complications (internal bleeding, ulcer, took a fall) and initially I did not tolerate foods at all. Most of those issues are controlled or resolved. But I still feel unwell though I do think I feel a bit better the further out from surgery I get. I have bouts of extreme muscle fatgue and nausea and a serious sleep disturbance. Docs are really trying to help and blood work showed a low cortisol (4.0 mcg/l). A few other things were also low. Next thing I knew my surgeon had gotten me an appt to see an endo he works with with lots of bariatric experience. Apt isn't until Feb 2nd and I'm to have ACTH stim and blood sugar testing before seeing this new doc.

Thing is no one has said anything to me about my low cortisol except..."we want you to see this endo and endo wants these tests". I kind of thought they might just repeat my cortisol level to see if that one test was a fluke. I've looked all over the net and I find things that suggest my level is pretty dang low and probably means either primary or secondary AI. Other things I've read suggest this may be nothing to worry about. I just don't have much to go on. I have symptoms that fit and I certanly do not have others (no pigment issues, no headaches).

Anyway, I sure hope to know more soon. I just feel as though I need some sort of medicine to feel better and I have to keep plugging through this medical stuff until I get the right medicine. Thanks so much for the reply. As for the cycle business, I'm going to trust the Harvard professor endo over the web for now. LOL. Suzy-Q
Suzy-Q--I find your post very interesting. I was having some low blood sugar issues so I thought I'd tell the Endo at my regular appointment. He also went on to give me the stim testing. Anyway, I asked about the meter to read my levels and he said, "No, that is not good enough for what we are talking about." I was surprised to hear that. So he gave me a stat blood test requisition for the lab for when I feel ill like I am having hypoglycemia. The problem with that is the last time it happened the flipping lab was closed lol! My glucose (fasting) was 78 and I think this is low for me. I looked at my past labs and they were up to 95. I thought this was significant to see something is going on, but he almost laughed at me, and said, "It is always changing throughout the day and it doesn't mean anything." Well, I don't get sick all the time, but when I do it's very scary. I think that 70 is what they consider low. And you are very close so it makes sense that they were intrigued by your reading. Can't wait to share results. I have never had my cortisol levels checked on it's own. Only with the stim test as a baseline. Best of luck to you. FLFLOWERGIRL:)

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