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Adrenal Insufficiency Community
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Avatar universal

Passed ACTH stim, but baseline low and can't get help

After 4 years away from this site, i am back again in worse shape than before.  I have been off experimenting on different thyroid treatments and settled on t3 by itself due to high values of reverse t3, for 18 months.  T3 only, you never do labs again because the results look odd on paper and i am full of scar tissue.  No doctor treats by symptom, only labs.  I have seen 6 endocrinologists to no avail.

  I have a shrunken pituitary and Hashimotos Disease..i have never been able to get help for my low cortisol or Growth Hormone testing, because my igf-1 is low normal.  We all know this is NOT a good indicator of GH deficiency..65% of all patients with a deficiency have normal igf-1..but tell that to an Endocrinologist!  Anyway, after becoming ill, with a virus and a rash and having terrible stress, including being disregarded by 3 more doctors, i have become bedridden for the past 4 months.  I have muscle tightening, pain in tendons and ligaments from head to toe,  gastritis, gastroparesis,  swelling and inability to lose weight, myxedema, my thyroid meds never work probably due to low cortisol and some is low  growth hormone, i am sure of it!  Extreme fatigue, in bed 16 hours and severe insomnia, hair loss on body etc..on and on.  I have become isolated and stay away from everyone, so not like me, but i feel so bad and puffy and hurt.  They tell me that i have fibromyalgia and chronic fatigue syndrome  [which coincidentally developed when my thyroid and pituitary shrunk] but i am assured it has NOTHING to do with missing or low hormones!!  omg??  Really?!!

I have been to the Pituitary Center in Boston, 1 year ago and due to poor communication, on their part,, i was unable to get an adrenal stim or glucagon stim test there, at that time.  They wanted me back on synthoid and do not believe in the diet /autoimmune/inflammation connection, they say it looks like a GH deficiency, but it is probably just the fibro. chronic fatigue syndrome  [omg]..i felt totally invalidated and treated like a number..they had their agenda, regardless of my individual situation.  They told me that saliva testing is not useful for low cortisol etc..  they told me that i passed my last adrenal stim, when i did not.  They said baseline levels do not matter.

I need advise on my recent test, please:

this was the low dose test

cortisol base..3.7  range  4.3-22.5  [i was totally anxious about this test and this is all i could muster??!!!
cortisol 30 min     24.2  [ranges are the same. i think]
cortisol  60 min     16.0

i think that my adrenal glands get enough stim daily, to keep them from atrophying, yet i do not get the cortisol high enough, when i need it.  I think i need further testing, but should be put on some steroids, a low dose, to see if i can be able to get out of bed.  My doctor has not called me to discuss this test at all.  It has been 1 week now.  I have waited 3 weeks for other questions to be answered and have given up.  This is the 3rd doctor to do this to me this year.

Any ideas?

Thank you!
2 Responses
657231 tn?1453836403
COMMUNITY LEADER
Boston is a very conservative place aka your tests have to be well over limits and clear as glass to be treated. They are not cyclical Cushing’s believers, or were not, and jeepers, saliva testing has been around for 20 years and the major labs do it... why is it not reliable? If you doubt make the patient do it in front of you!

My advice is to find another place.
1 Comments
Boston says i can come back for
a Glucagon stim test, but i don't know if or when i can.

yes, they are very conservative and want me on synthoid for my thyroid and only synthoid, don't think outside the box ..just another let down.

Thank you..i did not receive an email saying i had gotten a response and don't know how to change this.  

My doctor, locally, took 6 weeks to get back to me about the adrenal stim test. She is horrible.  She has put me on hydrocortisone 20 mgs daily.  She has offered me a insulin tolerance test for Growth Horne, which i and they, do not feel very comfortable in giving me. They do not do the safer methods.  The HC has helped the .pain, not the fatigue. The lab lost my lab orders and i had to cancel the appointment.  I feel very defeated.  

657231 tn?1453836403
COMMUNITY LEADER
The ITT test is the gold standard for growth hormone right now. It can be fine, but if your doctor is not used to giving it, and you have side effects... not a good idea. My doc has it done in the hospital so if anything happens I am already admitted.

I find it odd that they are treating you without firm testing. I would find another pituitary center like Maryland, and in NY, some places (not all). I ended up in California.
1 Comments
The hc has gotten me out of severe pain.  my stim test, had below normal baseline cortisol,[so dod saliva] but normal stim....this shows pituitary as an issue, so i was treated. My pituitary is shrunken.   I don't know what else would have to be tested other than GH, do you?
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657231 tn?1453836403
Northern, NJ
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