I'm trying to find out how often morning Cortisol tests are misleading. If I don't see many replies, I'll assume not too many of you have had the experience of a "normal" looking Cortisol, though you were later diagnosed with Addisons. While waiting for an appointment with a new doctor we're going to try, I'm wondering if I can gather some useful EVIDENCE of why I believe my son needs more tests (especially an ACTH Stim test). I already am convinced he should have the test, because I trust Chris' advice. But convincing the doctor may take a bit of work. IF I CAN GET SEVERAL OF YOU SAYING YOU HAVE HAD NORMAL MORNING CORTISOL TESTS, then been diagnosed with Addison's with the help of ACTH stim tests, I may have better luck convincing the doctor to do the ACTH for my son, whose morning Cortisol on one occasion was 18.3 on a scale of 4.5 - 20.

:bouncing: Please reply back with YES you had a "normal" morning Cortisol, yet were eventually diagnosed with Addison's or NO, your morning cortisol cried out, "Help me" all along, and perhaps give your lab results, if you can remember them!
Thanks VERY much! :angel:

This has been a long haul, though not compared to what some of you have been through. But with his age and the pressure to send him to school when he's not well enough to go, and not having a diagnosis to help me explain everything to the schools, it's been a call on my strength of advocacy. And I feel alone sometimes. Many would like me to try putting him on antidepressents. Many sternly tell me I must just INSIST he go back to school, no matter how lousy he feels. I feel like the bad guy, when I'm trying to do what is best for my son. Anyway, I've appreciated Chris' replies more than I can say. But sometimes I don't hear from too many others. I think I need MORE examples (not more believable examples than Chris gave me) but MORE for skeptical doctors. Of course it is my main hope not to GET another skeptical doctor. But after six who have done nothing, and didn't even seem that concerned about a young boy whose been ill for over six mos., you start to wonder if there's anyone out there who genuinely wants to help. Thanks again. You all are a wonderful support. :wave: ~ Tracy

Well my morning Cortisol was normal- and when they did the stim test they did it wrong- no baseline draw. I'm going to another endo next Friday- I will post after I see him- I too am convinced that the adrenals are the root cause of alot of my issues- I wish I could just self medicate!! I will think good thoughts for you and your son!

:angel: Thank you so much for your well wishes. Have you had your doctors appointment yet, or is it not until NEXT Friday? I hope you will soon be on the way to healing! I'm going to have to be honest and say that I'm a bit discouraged right now. Haven't received many replies to many of my posts. Maybe not too many can relate, if I am "barking up the wrong tree". But since the doctors haven't been able to help us in these seven mos., I feel a need for a rally of support. I want information NOW, as many others do. And I'm so disappointed when only one or two reply to my posts. I've started to search for other boards, not out of ingratitude, but out of desperation for input. I guess when we sit in "the dark" too long, we become "hungry" for enlightenment. Chris has been SO gracious, and many others have responded, and I'm thankful to all. But I've done a couple of "surveys" on this board hoping for many short, sweet replies for statistical purposes, and they've fallen flat. Perhaps no one else has had a "normal" morning cortisol only to be dianosed later with Addisons, and thus they feel they CAN'T reply. Anyway, please let us know how your doctors appointment went/goes. I'm sure that all hard times come to an end sooner or later. Life usually has its ups and downs, not only downs. We've just had a long ride down the roller coaster; are anxiously awaiting the upward hill. Take care, and thanks again. :wave: ~ Tracy

my appointment is next Friday...

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Good luck


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Thanks again, Chris and "Sladedog". I just started to think that maybe there were lots of boards out there, and I could compile info from many to get my "survey" for "norms". We do have another appointment this coming Thursday. It's with a different doctor, who was recommended to us. A nurse friend offered to recommend some to us, so thought I'd try this one she was most enthusiastic about. If I choose an osteopath, it'll have to be out of thin air, and I'll have to get lucky. But for either case, I'm going to go and pay for our first appointment as a consultation. If whatever doctor we go to on this first apt. basis can't help or refuses any more tests or referrals, we will not go back. We will keep trying doctors this way until we get someone who seems to be caring and interested, and who feels we haven't taken every test we need to take! Then when we find one we like, we'll switch our insurance to that doctor so we can afford to have them test and see us multiple times. In the meantime, I am just so tired of the waiting game, I just want some info in between delays. That's why I'm coming to these boards. The boards are not delaying our action. They're just supplementing our knowledge. It's hard to wait and see the doctors not take much action. They want to wait in between every test, rather than doing a whole lot of tests at once and finding a quick answer. It's the all mighty dollar that's to blame. Anyway, please don't feel that I am ungrateful, all. Just impatient and terribly disappointed that I can't get to the bottom of this or get enough info to piece this together myself between apts. Thanks for the infor about other boards. Both of your observations are appreciated! I know there is no "better" board. Just thought I'd add them all up and try to gather more responses that way. I'm probabaly not replied to as often because I don't phrase my questions well, or possibly because I don't actually have Addison's, and can't contribute any helpful hints to the rest. I have to expect less response when I can't respond to help others! :) Thanks again everyone who takes the trouble to even READ my posts! Have a good weekend. And hang in there. :wave: Trace

Just for your knowledge- I've been feeling this way for about 12 years now- just now getting to the bottom of it all- I'm completely fed up with western medicine......

Oh dear! I just can't imagine. You will have to go out and celebrate when you finally get some relief! Have you any "normal" or good days, or are you just constantly out of energy? Hope you will have an answer that is not too hard to hear very soon. Sometimes we get so eager to have an answer, we forget we may not like the answer. But usually it's best to know, so we can be treated! :wave: ~ Tracy

Thanks again, Chris! Seemed weird that both his TSH AND T4 were on the low side. Thought if hypothyroid, TSH would be high. But that must be how you decided there might be something wrong with the pituitary gland? Thanks for all your time and support! :wave: Trace

I always had normal cortisol levels but when given the Insulin Induced Hypoglycemia test it was clear I had no cortisol reserve. You can very easily have normal cortisol levels but have no ability to raise your cortisol above that level. Only a provocative test can determine if you have cortisol deficiency.

Essentially cortisol blood tests are useless in diagnosing adrenal insufficiency. If you want further adrenal tests you should simply demand your doctor do them. If he refuses then tell him to make a record in your son's chart that he in fact refused to do more tests. Ask for a copy of that record, just so you can prove the doctor said no more tests were necessary. That will start him thinking that maybe he should do some more tests, if for no other reason than to protect his own butt. After all, if later something bad should happen because of the doctors failure to act.....you will have that doctor in court faster than you can say "sue". Doctors know this and they respond accordingly.

My morning cortisol blood test came back normal. However I had ever symptom of adrenal insufficiency, so I had a 4 point saliva collection test that again showed morning cortisol normal. However by evening it showed my cortisol dropping and by midnight was almost non-existent. [ removed ]

Thank you SOOOO much, Orion and Angela. Sometimes I catch myself feeling foolish for pursuing tests many doctors don't think are necessary. Your replies are "fuel" for my "fire", so to speak. I led a shy life, until I got my first job, which forced me to work with the public and helped bring me out of my shell. Still, I am at my happiest when doing things for others, and conforming. I really have to struggle to challenge others, even when their experience or training wouldn't necessarily lead me to suppose they know more than I do. When you talk about a doctor or other professional, I need lots of "pep talks" to challenge them. But I see them standing by and not attempting to figure this situation out. Some have shrugged their shoulders and made light of our circumstances on our first appointment.
Hearing your experiences with "normal" labs gives me the strength to push for further tests, when people want to patronize and say they're not indicated.
Thanking all of my wonderful new friends. Thursday will come soon. I've tried a different approach this time. I wrote a letter to the doctor about my son's history (of this illness) and given her copies of his labs ahead of time. In the letter, I asked that she let us know if she didn't think she could help us, or wouldn't feel justified in giving him any further tests. This way we should know before attending the apt. if there is anything to be gained from going. I surely hope she will level with us, and admit it if she intends to drop the "investigation" and dismiss us with a bottle of Zoloft and a pat on the head. Thanks again for giving me reason to be persistent!

:wave: Tracy

A list of symptoms, tests done and previous investigations is great idea to give a new doctor. Good luck.

:) Thank you. I'll let you know how the appointment goes tomorrow! :wave: ~ Tracy

Tracy- Yes let us know how the appointment goes. If it gets you nowhere, don't give up. I actually had to go to a naturopath to get the 4pt 24 hr saliva test because no other drs in town would do it. After I got the tets results however several regular md's suddenly changed their tune when I have results on paper that proved why I felt so weak. I've had to be really persistent in getting quality medical care. It took me over a decade to get a dr to test me for hypothyroidism till I found the right one who trusted a patient's intuition.

Dear Tracy,

I just want to encourage you...you are such a great Mom and are following your Mom's intuition. I was originally told that my salivia cortisol tests were normal, it was only when a compounding harmacist reviewed it that she told me I was flatlined...dead, when it came to cortisol. Now, I am on Cortef, at last. It's a mystery to me as to why some people suffer so much until they find a caring and intelligent doctor. Do keep searching and reading various books on adrenal fatigue. You may want to contact a local compounding pharmacist to see who orders Cortef in your area and consider that person as a second opinion doc for your son...just a thought.

XX,
Sunny

I just wanted to add that a natural OTC alternative to Cortef is Isocort. You will find some rave reviews of Isocort. It is also what I was put on because I have always had nasty sideeffects when given steriods. Also if you cannot find a dr willing to order the appropriate tests there are several labsin the US that will run adrenocortex tests without a dr's prescription.

Dear Sunny and Angela,

Thank you so very much for your kind and motivational remarks! We are taking a slight break, as my parents are due for a visit this evening (from CA; we're in KS). Haven't gotten to see them for two years, so everybody is excited. Trav seems to be doing a bit better, but then it's hard to say whether thay indicates he has had a mean virus that is just letting up on him slowly, or whether he is just doing well because he has unlimited rest and relaxation. I know that Addison's is a malaldy that bothers more when people overextend. That makes it's victims fall under suspicion a lot, unfortunately. Seems whenever one has symptoms with stress, he/she is routinely given a "diagnosis" of anxiety or depression. :rolleyes: Anyway, we have gone to talk to another doctor, and she seems willing to proceed with more tests, but we have received "mixed" reviews on her and a less than enthusiastic reaction from a friend, who is a "booked up" pediatrician. We'd love it if HE would agree to see us, but he has too many patients to take on any more. Next step is to keep searching for a doctor we think will really CARE, and TRUST us enough to pursue things. Labs we can work with ourselves may also provide valuable info! :wave: Trace

Tracy, I've been following your progress for a while now, and I agree with the others, keep on looking until you find a doctor who is willing to do everything in their power to help your son! I once took one of those lab tests Angela mentioned (a cortisol profile), and although it wasn't cheap, the results were quite interesting. The lab staff was also very helpful, so I can only recommend it.

BTW, I don't have Addison's, just some kind of adrenal hormonal imbalance.

All the best for you and your son! :)

Thank you so much! We'll keep on hunting. Soon we should make a decision about which doctor to switch to who will do needed tests and be willing to refer to specialists, as needed! Take care! :wave: ~ Tracy