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Addison's Disease Message Board


Addison's Disease Board Index


Dear TM:

EVERYTHING I have ever read or heard about Addison's Disease and the ACTH stim test say that your cortisol should have DOUBLED in 60 minute's time! Your ACTH is getting UP THERE, which would happen if your body was trying to tell your adrenals to make more cortisol. If it goes much higher, you will undoubtedly experience the tan which goes along with adrenal insufficiency. Your urine cortisol was on the low side, as well, giving further evidence to the theory of Primary Adrenal Insufficiency (Addison's Disease). All written by experts in the field say the cortisol should have doubled as a result of the ACTH stim test, though. Did you have sodium, potassium, renin, and aldosterone measured as well? Those would be helpful, though not altogether necessary to see. I think what you need to do is call around to different medical offices asking how many patients they see or have seen with Addison's Disease. When you find a physician (DO or Endo probably) who has dealt with it a lot, see if you can be seen by THIS person. Try a teaching hospital, where more rare diseases are seen. Hope this helps! The thyroid problems ARE important, as you have said, as they often accompany adrenal distress or come as a pair. Another thing you can have tested are adrenal and thyroid antibodies. Sounds like your thyroid problem was Hashimoto's, if I'm not confused with facts here. I believe it is the one that starts you out hyper and turns hypo. Both thyroid and adrenal problems are often a result of faulty autoimmune system, which can be evidenced by the presence of antibodies. Take good care, :wave: Tracy
Thanks for your help. I've always heard that Cortisol should double too. However, I've read that endos feel that anything over 20 is good, except that that is where mine started. My ACTH has ranged from 45-62 (Range 5-27) much HIGHER than normal. My DHEA-S is pathetic but the endo (supposedly a top doc) says there's nothing wrong with my adrenals. I tried to explain that my business is suffering as a result of my symptoms and and he suggested I wait awhile and just "see if it goes away", even though we've been at this since August.

Silent Thyroiditis is different from Hashi's although the version I had caused me to be hyper for quite some time. At that time (a little ovr a year ago) my TPO antibodies were quite high 11.6 (Range 0-2).

I've decided to take matters into my own hands and take DHEA. When he started talking about anti-depressants I figured I'd gone about as far as I could with this one.

Here are my other labs:

17-Hydroxyprogesterone 8am 59 (Range 20-170)
30 min 148
60 min 173

11-Desoxycortisol 8am 28 (Range <33)
60 min 97

17-Hydroxypregnenolone 8am 189 (Range <226)
30 min 538
60 min 909

Androstenedione 8am 1.4 (Range .5-2.7
60 min 1.6

DHEA 8am 5.8 (Range 1.9-7.6)
60 min 7.8

What books have you read that you've found helpful on this subject?

TM
Dear TM,

I have no books on it other than "Adrenal Fatigue" by Wilson. Everything I have read has come from others with Addisons and numerous sites with medical info written by endos all over the world. I consider those who have gone through the ordeals of getting their diagnosis and treatment to be my BEST source, however they have shared other info from various websites as well. I have been researching this particular health topic for over a year and a half, feverishly, as my son is yet to be fully diagnosed. He will go to the Mayo Clinic this Jan. with suspected pituitary malfunction or POTS. His aldosterone was tested and was almost non-existent on three different occasions. This hormone is made in the same location in the adrenals where the Cortisol is manufactured. Shortage of aldosterone is sometimes the first sign of adrenal problems. I wish I could be more specific about what I have read, but there are many limitation to this board and what we can share. I have read many technical studies by doctors who specialize in adrenal or other hormonal ailments. One study gave specific amounts to look for by a current doctor in LA. He has got a grant to study CFS and is a research physician and endo. Even when we are told that a certain doctor is the best in his/her field, I don't believe any can have seen and heard it all. ;) I believe the best thing to do is find one who has actually treated many with adrenal issues. I would suggest finding a teaching hospital in your area, and interviewing some doctors there to see whether they have had experience with adrenal disorder. I suspect your body is still fighting hard enough to mask some of the tests. This popular doctor in LA is the one who advised us by e-mail to test Trav's aldosterone and renin, postassium and sodium for more proof of an adrenal problem. I think the more clues one can have, the more you can persuade the doctors to dig and not just dismiss you with a prescription for antidepressents. We've had that done many times, too, and decided, as you have, that it is the end of the doctor's willingness to search and be open minded, and time to move on. We visited 20 doctors before we found the one from the teaching hospital who took my son's symptoms seriously, and is referring us to the Mayo. Hope you can run some more tests to drive your point home. I wish I could give you some copies of these studies with proper perameters to decide upon whether a patient has adrenal insuf. to take to your doctor. I hope you will find a physician who can help you! Best wishes, :wave: Tracy
ADRENAL GLANDS???
Ok...I have had the stimulation test more than once. >1 Cortisol show up in bloodwork, low DHEA. Currently I have many issues going on and I was curious if any "professional or nurse" could help me calm down a bit. My edno dr. in past has been suspecting Addisons Disease for a while but symptoms and all went away. Ok..well here I am again. Here are the blood work results from a cardiac ER visit and wanted someone to tell me whether or not they think its poss. for me to be having a flair with my adrenal glands. (i do have an appt. but not until mid jan)
Sodium 134
Glucose 140
AST 52
ALT 66
Potassium 3.8
PH urine 8.0
Leukocyte esterase *trace
WBC, urine ..few
RBC, urine..few
Bacteria...few
appearnace urine..hazy
tsh norm 1.5
MANUAL DIFF (??)
SEG 94
LYMP 4
ABS LYM .31
**Not sure what the above 3 are but vrs. their "normal" they are pretty off.
What up???
thanks! Kelly
**Forgot to mention..I do have sarcoidosis, sinus tachycardia, polyneuropathy, liver enzymes elevated before..nothing came of it, IBS, 3 polyps removed so far and have had pit. gland tested years ago. Does anyone suspect diabetes as well?
Dear Kelly,

Unfortunately, I cannot see anything from THESE tests to determine whether you are having insufficiency with your adrenal glands. And I don't know whether there are any doctors or nurses on this site. But your glucose level, in MY opinion (and with the knowledge I have from being the mother of a little boy with Type I Diabetes) is TOO HIGH. Was this a fasting test? Even if not, 140 is usually just too high for people without Diabetes. Wanted to shed some light on this one aspect of your tests. I think you should have some more tests run for Diabetes. Sorry to suggest this. But that 140 was a red flag in my mind.

As far as having symptoms come and go, you might suggest the idea of a pituitary or adrenal adenoma (benign tomor) to your endocrinologist. These can make for ebb and flow symptoms. I hope you will get to the bottom of your health issues very soon!

I might suggest you post your message as a NEW message, too, instead of as a reply to someone else's message. It may get better attention and response with its own title given it! ~ :wave: Tracy





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