hello, new here, stumbled upon this site while doing some research. I have a couple of questions, my daughter was suspect of having low cortisol, her endo did a test, I think that acth, (sp) and it came back as low, they re did it a month later, and said it was normal. However, my daughter still has symptoms, she gets very tired, dizzy, weak, lethargic, and needs to sleep. I called the doctors last night, and I am waiting for a call back this morning.,I was wondering, is it possible to have periods of low cortisol? can it fluctuate? Im just really concerned, it seems she is always sick.....

my daughter was suspect of having low cortisol, her endo did a test, I think that acth, (sp) and it came back as low, they re did it a month later, and said it was normal. However, my daughter still has symptoms,

You CAN NOT diagnose Addison's disease with an ACTH test. My ACTH was always normal as was my blood cortisol levels. However an insulin induced hypoglycemia test proved that I have no adrenal researve so that at times of stress the symptoms were much worse. The endo should know this, so I would recommend a 2nd opinion. Note that most endos treat diabetes patients and see few if any Addison's patients so you can't trust he knows what he is doing. In my case I saw 5 endos before a receiving proper treatment.

thanks Orion, I will ask the doctor about that test you mentioned. I think I will also ask for a second opinion. so you say at times of stress your symptoms are worse? that sounds like my daughter exactly. What do you do to make yourself feel better?

What do you do to make yourself feel better?

With adrenal insufficiency there isn't much you can do without replacement medication. Rest, avoid stressful situations, get lots of salt (usually you have salt cravings anyway, I used to eat salted sunflower seeds by the bag), take a multivitamin, drink plenty of water, avoid caffeine (it stimulates the adrenals which is bad in this case), and find a better doctor.

Watch for symptoms of adrenal crisis (some of which may be missing): vomiting, nausea, profound weakness, low blood pressure, confusion, abdominal pain, lower back pain, excessive sweating, rapid breathing, rapid heart rate and high fever. These symptoms are life threatning and require a trip to emergency. You need to inform them of the possible reason.

thanks again, Im looking for a new doctor right now, Im in Arizona, but I cant seem to find one that specializes in Addisons. I was told by the doctors nurse, that cortisol levels cant fluctuate. I am so concerned now about my daughter, something is not right. Also, twice already, she has had these weird symptoms, that almost sound like a crisis, but she will start to feel better in about an hour. I wonder what it could be. The last time it happened, was right there in the chair at the docs office while they were giving her that acth(sp) test, in fact, thats the test where her cortisol came back low, anyhow, I think she scared herself because of the I.V. (she is only 13) and then she started to "crash'. She was very weak, couldnt speak well, started to sweat, almost passing out, but not quite, then had stomach cramps and me and the nurse had to help her get on the toilet. She is very shy normally, but not at that time, she was so "out of it", and weak, I had to hold her on the toilet. Anyway, at other times, almost every day, she is weak, dizzy, (not that bad as I mentioned before), and has to sleep. Well, the doctor re did that test, that came back low, only this time my daughter did quite well, it didnt bother her, and her cortisol came back normal. So that is why im trying to figure out if stress causes it to drop, and at other times can it be normal? I hope Im not bugging you too much, I am just trying to find some answers, I feel so bad for my daughter, its like life is just passing her by.......

Hi,
Your Daughter should see an Endocrinologist, He will figure out everything for her and know what to do, that is there field. My son was diagnosed with Addison at the age of 16 years old, His first year was pretty tough but we managed. To this day he is tired but that is all part of Addison's.
Karen

hello Karen, actually she is seeing an endo, but I have left 3 messages last week, because my daughter had a bad week, and no call back yet. I think I will look for another doctor. how long did it take for your son to get diagnosed? I am just wondering, because of all the symptoms my daughter has

Hi,
Well at first we thought it was just the flu, he was vomiting, had body aches but no fever, he was very tired, after five days of vomiting, he was getting week, we went to the Doctor and they sent us to the E.R. to get some I.V.'s and we were sent home, but he still continued to be very sick , So His Pediatrician ordered a bunch of tests, one of the tests showed low cortisol, so the they order more tests regarding sickness's that have to do with low cortisol, some of them had to be sent out and it took almost two weeks to get the results and that is when we found out. How old is your daughter??
Karen

Hello again, my daughter is 13, but her symptoms are mainly everyday she is dizzy, somedays she has stomach aches, she is weak, and always wants to sleep. The doctor did a test, the "acth", and at first it came back low, they redid it again, and it was normal. I was more specific in an earlier post, so I was wondering if cortisol levels can fluctuate? any advice would be soo appreciated.. thank you

Dear Grinchy,

I can surely sympathize in your quest for help for your daughter. How old is she? My son was 14 when he rather suddenly took chronically ill. It took us 2-1/2 years to get him diagnosed.

You might also request that they measure blood levels of renin and aldosterone and do an ACTH stimulation test (if Orion didn't already mention that one!). There are no ill side effects of these tests, and they are both painless (save the needle *****) and safe!

My son had very similar symptoms, was exhausted all the time, appeared dehydrated (dark circles around the eyes), dizzy upon standing or turning his head side to side, lacking good balance, stumbling into walls at first, slow gait, poor appetite, upside-down sleep cycles, low cortisol (5.6 before ACTH stim test), brain fog, lack of tolerance to exercise... Finally after two and a half years and 20 doctors not yielding a diagnosis, we went to the Mayo Clinic (our insurance allowed us to do so, and paid part of our costs). They diagnosed him with something which has only been recognized for about 4 years, called POTS (postural hypostatic tachycardia syndrome). He now takes salt pills, drinks 3 liters of water and Gatorade per day, takes calcium and vitamin D because he's been lying around the house for such a long time without his proper amount of sunshine. And they have recommended gradual return to exercise in the form of walking and stretching.

I hope this will help you find your answer, :wave: Tracy

Also... try testing her blood pressure when lying for 5 min. and then just after she stands, and after she has been standing for 3-5 minutes. It her pulse accelerates and blood pressure DROPS, she has an orthostatic hypotension problem, which could have several causes. Her dizziness might be helped by Florinef medication (which is a steroid) or, as our doctor prefers to use steroids as only a last result, salt pills and lots of fluids.

You may wish to request a tilt-table test and stress or exercise test, because of the dizziness.

Before all of this, I suppose they have adequately checked her ears and sinuses and taken the tests for CMV and Mono?

Thanks, Tracy

Hello, good suggestions. I think Im going to look into getting one of those home blood pressure cuffs, so I can test her pressure. The drs didnt do more than just look in her ears and nose with a light. What is a cmv test? I will just make an appt. with her primary care doc and see what he can do. thanks for the info..

CMV = Citomeglia Virus (something fairly big, which can cause fatigue, like Mononeucleosis). I spent the past two years gathering info. Hoping the tests we suggest can "cut to the chase" for you and your daughter. My son has lost all of his public High School experience over it. Sure don't want the same for anyone else! Best wishes, :wave: Tracy