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Addison's Disease Message Board

Addison's Disease Board Index

Okay I was just recently tested for and positively diagnosed with crf-acth defect and had all but one of the symptoms you list here. Cortisol was less <15 on me which lead to testing for ACTH the hormone that tells the adrenals to produce cortisol. A cortysn stimulation test was done which tells them whether it is the adrenals or the Pituatary causing low cortisol) When that test came back that my adrenals worked then an Insulin tolerance test was preformed and it was found that my pituatary produced the needed ACTH which left the connections from the hypothalamus to the pituatary thus the diagnosis I was left with crf-acth defect with secondary hyperaldosteronism. I am on hormone replacement and will be for the rest of my life.

It is important that you take the lab work with you to this endocronologist. Be sure to tell them if she has had steroids before in her lifetime (they can cause hypophysitis and prevent ACTH production). Also note any presence of autoimmune disease, i.e. hashimoto's, lupus, RA, there is a form of autoimmune disorder that would cause damage to the endocrine organs.

Above all put the ball back in the endocronologists court tell him you want to know why she has low cortisol and don't stop until he/she agrees to find out why.

It took 8 visits to an emergency room, 5 endocronologists, and repetative need for electorlyte replacement (thus the emergency room visits my electrolytes dropped so low I nearly died) for anyone to listen except my pcp. In all honesty it sounds like the pcp is in over his/her head on this. My pcp refused to give up and found me and endocronologist who listened.

The best advice I would give anyone is make the Doctor find out why cortisol is low if they refuse get it in writing, and from now on ask for copies of everything and keep them. By making the specialist responsible (putting it in writing) I got better results and truly enjoyed firing the prior endocronologist being sure to inform him that so called "rare" conditions are likely to happen in every doctors practice my hope is that he will learn to listen.

I really hope she gets the treatment she needs; hang in there
Tests that help start things off are BMP, and CBC with Differential, ACTH, DHEA, and Cortisol. There is timing to these tests too any lab can draw it and send it out but either the ACTH or the Cortisol is supposed to be drawn in the mornings when it is at it's peak.

If you are on the right track this should lead to further tests, i.e. Cortysn stimulation test, Insulin Tolerance Test (not for insulin in this case but used to calculate ACTH production).

Remember ACTH tells the adrenals to produce the cortisol if I remember correctly.

There is a website called the Doctorsdoctor, I found it from this website. It is a pathology site and btw pathologists are the doctors who know all the systems not just one. They are in charge of the laboratories (although this used to be common knowledge it isn't so much anymore)

I would also be sure to request a Lyme test because it shares some symptoms in common with endocrine disorders but I don't recall if low cortisol is one of them.
My understanding of the process is this:

Hypothalamus releases CRF (cortoco..something...factor) this CRF tells the Pituatary to produce ACTH (adrenocorto....something...hormone) ACTH tells the adrenal glands to produce cortisol.

The chain can be broken anywhere along the pathway and based on which location the diagnosis varies. My understanding is that Addison's is the condition of adrenal failure and that if the issue is above the adrenals you have all the symptoms of Addison's so I suppose it would be secondary Addison's, meaning Addison's as a result of another underlying condition.

It seems odd to me that a UTI or Predisone could cause adrenal failure. It would make sense that they could cause Kidney failure which I suppose could lead to adrenal failure or fatigue but it could be she is producing the needed cortisol but her kidney's are not filtering it correctly thus wasting needed hormones and steroids. And wow I think this may have answered some of my question on this site.

If she is not communicating I would have to say you need to use your own judgement about the ER but I always feel very off when my cortisone levels are off. I would go by the addison's guidelines on that until you know for sure what it is. Better to be safe. One thing that always clued me in to how bad it was is the uncontrolled shaking (very small movements, and you could see little strange muscles all over my body twitching repetitavely. When that happened I was always really low on my levels.

Good luck with all this, God bless you.

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