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Low cortisol developing into Addison's?

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Old 09-07-2011, 12:00 AM   #1
Join Date: Sep 2011
Location: Randle, WA, USA
Posts: 4
kireton HB User
Exclamation Low cortisol developing into Addison's?

Hello! I'm new here, and I've been reading over other's posts trying to find some helpful information for my mother in law. She's 58 years old, and up until 2yrs ago, her only "true" health concern was diabetes. She was diagnosed with Temporal Arteritis and PMR almost exactly 2yrs ago after an extensive headache/face pain. Her rheumatologist treated her w/ an initial dose of 20mg prednisone. Over a six month course she gained 50lbs, but was able to wean herself off the prednisone completely. She was symptom free.

About a month later she started developing other symptoms, new symptoms popping up daily! No exaggeration! She started having severe nausea, extreme fatigue, weakness all over, dizzyness, she lost cognitive function, was very slow to respond if she was even able, she stopped being able to write! The simplest of tasks became the most difficult for her. She vomitted up everything she ate, even though she was on a "cocktail" of anti-nausea meds. Her doctor sent her back to the rheumatologist. He told her this was NOT the previous auto-immune disorders that she was dealing with, and that she was in an adrenal crisis and needed to see a specialist for that!

She went back to her PCP. The PCP brushed it all off sending her to a GI specialist. The GI specialist ran every test she could, and found nothing. Back to the PCP, who decided she must have gastroparesis!

Our family got fed up! When I weighed her to find that she had lost 90lbs in 4mths, and was now refusing ALL food and drink, I loaded her up and took her to the local ER. They admitted her. Started her on TPN. Still no improvement...due to a slightly elevated Sed rate they decided to give her a low dose of steroids over a 5 day period. This is when we started seeing change!

Within 24hours she was able to eat a (small) meal and keep it down! She started communicating w/ us again (in short periods). She'd had an appt at Oregon Health Sciences University (OHSU) w/ a GI specialist. We kept that appt. They looked her over, talked to the family (she was not able to communicate), and decided that they knew what was wrong. They admitted her to the hospital and had the Internal Medicine team take over her care. They ultimately tested her cortisol and found that it was low. They started her on 7.5mg/day. She was doing AMAZING w/ this...up until 3mths ago.

Her PCP told her to go ahead and wean herself off the prednisone, "Cause she didn't need it anymore!" Two weeks later she was in the ICU at the local hospital w/ a whole new mess of issues! They decided to up her prednisone to 10mg/day. That got her back on her feet and going, but only for a minute!

Currently she's suffering from:
Extreme fatigue
Insomnia at night
Short term Memory Loss
Cognitive issues
Diabetes (not controlled)
Extreme dizzyness (she's fallen 5x's this past week alone!)
Constant urination
Thirst throughout the day and night
She was in a car accident that SHE caused. No injuries to anyone, but she was so confused that she didn't know what to do. She sat in the car and acted like nothing had ever happened. *Back to the PCP*

PCP says: It's alzheimer's. We need to have her tested.

I think different. I think that her "low cortisol" has developed into Addison's. We're trying EVERYTHING we can to get her into the Endocrinologist that specializes in Adrenal Insufficiencies. It'll be about 2wks before she can get in though. And she's going down hill faster everyday.

Now that you have the background, my true question is:
Can low cortisol develop into Addison's?
Could the recent weaning of the prednisone + the severe UTI have finished off the rest of her own cortisol production?
If so, how would they do the testing w/ her on the prednisone?
With just one missed dose she is in BAD shape.
We have family member's alternating days w/ her while her husband works. We're afraid the next fall could be fatal.
Do we just take her back to OHSU ER?

I'm asking for help from you all here, as you have the disease, and you know how it affects you. Would you wait, if this is where you were at? She's unable to even make these decisions on her own anymore, so we kind of have to outsource right now!

Thank you, in advance!

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Old 09-11-2011, 07:58 AM   #2
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Join Date: Sep 2011
Location: Clarksville, TN, USA
Posts: 13
swtnsalt HB User
Re: Low cortisol developing into Addison's?

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

Old 09-11-2011, 10:29 PM   #3
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Join Date: Jan 2009
Location: San Jose, Ca USA
Posts: 100
luvthesun HB Userluvthesun HB Userluvthesun HB User
Re: Low cortisol developing into Addison's?

I am very sorry to hear all of this.. very sorry, and I am sorry that I'm not going to write much as I'm exhausted & not feeling well, but I couldn't just read this without writing a little something. YES, low cortisol can certainly turn into Addison's, and it sounds like her adrenals are insufficient/exhausted, and perhaps not producing any cortisol on their own. She was on such a high dose of prednisone awhile ago (40 mg, which is 160 mg cortisol), and that will suppress adrenal function. And with all of her health conditions, it doesn't sound to me like she should've ever been completely weaned off. A low dose of steroids would be appropriate. Do not rely soley on the docs.. this is a disease that most of them do not have much experience with or knowledge of, and because it is so "rare" in their eyes.. it is OFTEN overlooked. Get her into any endo or even a good PCP soon, and demand they test her for adrenal insufficiency. An endo will know how to do this while she in on some prednisone.. they will put her on a different steroid, I think it's called Dexamethasone, and this does not show up in blood work. Cortisol is a necessary hormone for life... without it, there is no life... so if she needs to be on cortisone because her adrenals do not produce enough... so be it. These docs are always so determined to wean their patients of steroids, but if you need to to have a decent life while you are here... so be it.

Take care, best of luck, and bless you for all that you are doing for her...


Old 09-12-2011, 11:55 AM   #4
Join Date: Sep 2011
Location: Randle, WA, USA
Posts: 4
kireton HB User
Re: Low cortisol developing into Addison's?

Thank you all SOO much for your responses! I have been trying to do as much research into all of this as possible! I've found this healthboard to be the most help so far! Knowing what particular tests to ask for is such a huge help! Thanks again!

I suffer from lupus myself, so I've been a little overwhelmed lately with all of this! I am supposed to have her staying w/ me for a week and a half so that I can "watch" her and keep her from getting injured while my father in law is out of town. I'm hoping to use this opportunity to get her into another endo that specializes in adrenal insufficiencies!

Does anyone know how to find out if our local lab has the ability to run these tests? Are they very common?

Old 09-12-2011, 05:46 PM   #5
Junior Member
Join Date: Sep 2011
Location: Clarksville, TN, USA
Posts: 13
swtnsalt HB User
Re: Low cortisol developing into Addison's?

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.

Old 09-13-2011, 08:27 AM   #6
Join Date: Sep 2011
Location: Randle, WA, USA
Posts: 4
kireton HB User
Re: Low cortisol developing into Addison's?

You are wonderful! I cannot tell you how helpful this is to us! I've been writing EVERYTHING down and trying to compile a "history" of events from our prospective. Hoping that we can take our requests into the new endo and finally get somewhere!

Again, thank you so very much!

Old 09-13-2011, 08:31 PM   #7
Junior Member
Join Date: Sep 2011
Location: Clarksville, TN, USA
Posts: 13
swtnsalt HB User
Re: Low cortisol developing into Addison's?

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.

Old 09-14-2011, 07:06 AM   #8
Join Date: Sep 2011
Location: Randle, WA, USA
Posts: 4
kireton HB User
Re: Low cortisol developing into Addison's?

Thanks again!

As to the UTI and prednisone causing problems...well, she's currently on 10mg/day prednisone because the ER doctor saw how non-responsive she was until they put her on a 60mg drip of hydrocortisone (when she had the UTI)! Prednisone taken for long periods of time is said to suppress the production of cortisol, thus leading to Addison's, I believe. The UTI came about when she attempted to wean herself of the prednisone (due to PCP advice) and became extremely sick/dehydrated and could no longer take care of herself properly. My best guess, is that due to the UTI being so bad and her being w/o the "cortisol" for about a week, that it just did more irreparable damage to her adrenal functions.

On a slightly better note, she did see her rheumy yesterday. He confirmed that she was NOT suffering from anything auto-immune and would even go so far as to say that the temporal arteritis and polymyalgia rheumatica are no longer a problem for her! He told her that he suspects something more along the lines of "Addison's Disease" (imagine that!!)! Of course, he's the wrong doctor to order labs or treat that disease so he just "highly" recommended she see a "good" endo asap! We're sad to say that we've still gotten no concrete results, but we've made it one step further in a diagnosis, , hopefully!

I've been writing down/printing up every little piece of information you all have to offer us! Thank you all so much for your input! Her PCP has still not put in the requested referral that she said she would, to the endo we'd like to see. We're finding that it may be necessary to go above the PCP here to get the ball rolling. Frustrating, but perhaps we will soon be on the road to recovery!!

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