K, Jimlow, have the news!!

[ShannieK]

Hi there, have just gotten back from my endo.  My adrenal antibody test came back negative.  But she is still saying that all my other blood tests are showing a positive sign for primary adrenal insufficiency.  She checked my cortisol and ACTH again with the antibodies, and the ACTH is even higher than it was last time.  Last time I had a reading of 92, I think it was and now I show a reading of 130 with range 0-46.  She said alot of patients with PAI, have readings in the 1000's, so she says i'm in real early stages.  She said my cortisol bounces back and forth, last time with a low reading at 9.4, and now it is up to 12.1 with a range of 6-28, she admits that she is confuses also.  But this DR. is real good and never gives up, she is really trying to help me.  She again has ordered the 24 hr urine for cortisol and is checking the ACTH for the 3rd time tomorrow, to compare all of these tests.  I now have an appt, on this Thursday to have an MRI, to check my Pituitary gland and my adrenals.  She said that my blood shows a defieciency, however I look as though I am a sufferer of Cushings Syndrome.  She admits sometimes the blood can fool, so now she needs a picture.  If the adrenals are large there is an overprodution, if they are small, there is an underproduction which she expects to find,  I am overweight with high blood pressure, stretch marks, unable to lose weight.  She said that all points to overproduction, she is also testing some hormone, not sure what to check about all my fluid and salt balance, to see if it is off, and is accompanying, my adrenal symptoms.

[ShannieK]

She said I have perplexed people because I have multiple things wrong with me, everyone expects to find the solution to their symptoms and to figure out what ails them, When in fact sometimes it is a variety of things, and not all one problem.  I have always described my Hashimoto's as bouncing back and forth from hypo to hyper, when in fact, I have been hypo all along with adrenal symptoms, such as my nausea, diarrea (diarrhea), headaches, hair loss, and anxiety.  She still feels, when I was in trouble last year, that it was not a thyroid storm but in fact an adrenal crisis, that went undiagnosed.  also, she said I have low sodium and low potassium on all my labs that also is common in people with PAI.  Well I'm off for more tests, depending on the outcome, she is ready to prescribe me the steroids that I need and than said she has to delicatley balance my thyroid meds with it, because what you said, my thyroid medicine could make my condition worse, if not monitored closely.  Also, in contradiction to what I have read, she told me that it is very rate for someone to have an auto immune thyroid disorder, and also another auto immune disorder of the endocrines, she said it is possible, but extremely rare.  Well I'm anxious to hear your results.  Hopefully some of mine have answered some of your questions that you might have.  Talk to you soon Shannon

[Jimlow]

Hi Shannon, That is some amazing information. I'm glad you have such a good Dr., willing to keep at it until she gets the best answers and treatment possible for you.
I've had several Docs tell me there is only one type of true adrenal insufficiency and that's Addison's Disease. I found medical resources who said otherwise! I'm glad yours is not the autoimmune type but will be interesting to know what they conclude is causing it!
You know, the info. I've seen about Hashi's or other autoimmune diseases making a person at higher risk for yet other autoimmune diseases, was on a lot of reputable sites, including the "American Association of Clinical Endocrinologists" site but only some of them actually gave a risk percentage number. I do know a lady in my hometown who first got Hashi's, then developed Rhuematoid Arthritis, folowed by Lupus but maybe it is more rare than some of these medical sources claim. I hope so.
I'm sure you are anxious to see the testing end and treatment to begin! Sounds like she already has a medication regimin in mind. When I get my tests result, I'll let you know. I feel like mine too is not autoimmune but I definately have had low cortisol levels.
Your Dr. sounds like someone you can put complete trust in and I am glad for you!  JimLow

[ar1281a]

Hi SHannon,

Wow! it sounds like you have a GREAT Dr!!! it's great info what you posted and it sounds like your endo is trying to get to the botton of everything. Everything I've read says that PAI is Addison's but like evrything it could be something else. Good thing she's also checking with an MRI.

Good luck, hope you start your path to feeling good soon.

Just a question, what happened to you last year that your endo thinks it was an adrenal crisis and not a thyroid storm?

[Mark Lupo, M.D.]

Diagnosis of adrenal disease is complicated.  To document overproduction the 24h urine is helpful.  Also, a suppression test using decadron (a steroid not measured in routine lab) can be helpful.  Lastly, midnight salivary cortisol (this is the only salivary hormone test proven to be useful thus far)can be helpful.  Your symptoms sound more like over-production and this can be cyclic in nature at times, so you are luck to have a doctor who will stick it out with you.  

To document adrenal insufficiency, an ACTH stimulation test is done.

It is possible to have multiple autoimmune processes, but this is the exception, not the norm for most hashi patients.