Poll On Adrenal Function

[sue1234]

Songcanary, it sounds like you need a 24-hour urine to seal the deal with high cortisol! Did your doctors do any imaging to look for a cortisol-secreting tumor or a dex-suppression test?

[sue1234]

Dana, that is odd and it would be good if weird things like this that we get could be looked at in more depth.

[songcanary]

Sue,

I have only had an abdominal CT with contrast and it specifically stated that the adrenals looked normal. I certainly didn't FEEL normal at the time What would a 24 hr urine show in addition to my serum and saliva results?

This is a little off-subject, but I just received results of a serum Insulin-like growth factor II and it is high. I googled it and of course there's lots of scary stuff, I should have kept my fingers closed. I'm expecting to hear from my fibro doctor tomorrow and I wonder what is going on. Do you know why he would order that?

[sue1234]

A 24-hour urine is the standard test for Cushing's disease. Well, not the only one, but the ones the doctors really take seriously.

No idea on the IGF-II.

[songcanary]

Sue, thank you for suggesting this. I think I'll bring it up again to my doctor. I have OH, but I have felt all along that there is also something 'bigger' than this. No rest for the weary

[sue1234]

No rest for the weary

For sure....

[Lovebug]

I wonder if the ones with the high cortisol/ACTH have correlating high BP (like me) whereas those with low levels have low BP? Also, why wouldn't an endo be concerned if BOTH cortisol/ACTH were high or low since they are supposed to be inverse of each other?

Regarding the Cushing's symptoms, I have noticed changes but they can be sporadic. For example, I've noticed more facial hair. I've gained weight in my midsection but that is likely b/c I eat yet don't do strenuous exercise. I have trouble sleeping and I often have periods of time where I feel very antsy, as if my muscles are ready to burn some energy yet I'm exhausted...the old "wired but tired" analogy.

[sue1234]

Also, why wouldn't an endo be concerned if BOTH cortisol/ACTH were high or low since they are supposed to be inverse of each other?

Good question! Those voters must have seen a couple of endos I've been to!

Lovebug, you and I seem to have a very similar problem. I did initially put on abdominal weight, and as I've lost weight, that's still the last place to lose. I also having increasing facial hair, don't sleep, and need a calm environment. It's like I am a mixture of Cushing's and Addison's. The body looks Cushing-type, but it behaves like an Addison's-type.

[kluesyk]

Yep, I am one of those with non existent ACTH AND Low cortisol.

Endos just say my labs do not make sense and they choose to ignore what they don't understand. Last one's explaination for my cortisol being 2.1 (when it should have been 10 or above), was my labs do not reflect my medication. (I have addison's, thryoid failure and POTS) At the same lab draw my ACTH was <5 which means WHEN my cortisol was 2.1 my pituitary was NOT asking for any cortisol(low ACTH).

Sure wish I could find one that could put the pieces of the puzzle together.

[shoegal]

kluesyk it sounds like you go to my endo!

[DoozlyGirl]

Hello all,

I, too, keep coming back to adrenal issues at the center of my symptoms. Over the past 2 years, my odd, cyclic symptoms have lead to work-up for pheo, pituitary tumor, Addison's, Cushings, PCOS, diabetes, porphyeria, rare genetic disorders, among other things. Cardiac symptoms eventually lead to autonomic dysfunction.

In 2005, an allergist diagnosed Hashi's after TPO=1000. I went into anaphylaxis (complete with ambulance ride) after taking Armour Thyroid for 5 days, then was directed to find an endo to treat my Hashi's. I later learned this is a classic sign of undiagnosed/untreated adrenal issues. Since TSH, FT3, and FT4 have all been in "normal" range, the first endo, Primary MD (PMD) and a second endo will only prescribe 50 micrograms of T4. I have long supsected my thyroid is undertreated, needing higher T4 and/or T3. I've had saliva testing done twice, both with non-existent flat morning cortisol curves, low DHEA, low progesterone, low testosterone, and high estrogen. This same PMD diagnosed adrenal insufficiency and prescribed 15 mg (10mg in am/5 mg in pm)of Cortef (careful not to exceed physiologic dosing), which was noticable for a year or so, or until last January when my second endo had me stop the Cortef (took 6 weeks of pure agony and a muscle relaxer) in order to test my HPA, which she states is intact. Meanwhile, I crashed hard.

Last April, I was diagnosed with OH and while I was tachy, not high enough to get POTS diagnosis during TTT. My neurologist prescribed low dose Zabeta (beta blocker), and after only 5 days of 1.25 mg/day, my tachy turned into bradycardia with a HR in the 40's for 6 weeks. Since then, significant OH, morning crashes precipitated by plummeting temps (as low as 94.9 degrees), hypoglycemia, and overall parasympathetic symptoms fill my days. I can barely function until 7 pm, then am up until the wee hours of the morning due to a circadian rhythm disorder. My autonomic neuropathy involves both cardiovascular and sudomotor domains and both sympathetic and parasympathetic fibers. My neurologist states I am likely on a path towards PAF/MSA, unless we can find the biochemical trigger for my autonomic dysfunction. Research on my symptoms keeps pointing to issues with HPA/adrenal/thyroid. I suspect Addison's, especially with new onset of orthostatic tremors.

My Neuro is trying to get me into Mayo Clinic in Minnesota with either Autonomic Neurology or Endocrinology. Meanwhile, I found a new Mayo-trained endo in my health system, called and talked to her nurse. She does prescribe T3, is familiar with autonomic dysfunction, and will consider previous saliva testing to assess adrenals. I have an appointment in a few weeks and am hoping she can help mitigate some of my current symptoms. Has anyone had success with Mayo trained physicians helping to sort out hormonal issues that trigger dysautonomia? I appreciate any insight you may share. Thanks, Lyn

[Lovebug]

Also, why wouldn't an endo be concerned if BOTH cortisol/ACTH were high or low since they are supposed to be inverse of each other?

Good question! Those voters must have seen a couple of endos I've been to!

Lovebug, you and I seem to have a very similar problem. I did initially put on abdominal weight, and as I've lost weight, that's still the last place to lose. I also having increasing facial hair, don't sleep, and need a calm environment. It's like I am a mixture of Cushing's and Addison's. The body looks Cushing-type, but it behaves like an Addison's-type.

Maybe it's a South Louisiana "thang"...LOL! I've also developed abnormal menstrual cycles as of late. For example, my last dot ended around Easter. I spotted twice since then and started my dot again yesterday. It's almost as if I've never stopped this month! I am going to my Dys doc at the end of this month & end of June. I may need to make a trip to my GYN. But I can tell you this, something is wrong hormonally and that is what affects my Dys symptoms. This gets so frustrating! UGH!!!!!!

[sue1234]

I just wanted to mention that on page 4 of the "gut bacteria" post, Dizzde post a good article that talks in depth about the various bacteria, their metabolites, and how they can affect the body. In one place it states that one of those can affect hormones, specifically the ACTH, thus affecting the HPA axis. Maybe that's why we are having odd labs?

[kjd111]

Thanks so much everyone to some of the responses to my earlier post in this thread. This adrenal function thing seems to be so tough for the doctors (although i'm not sure i know why as its supposed to fall in an endo's area.........). What I had found through research at the time is that if things like ACTH and cortisol are low, then it could be a hypothalamus issue, rather than pituitary or adrenal. That certainly seems like it may be the issue in my daughter's case.

The endo who did the ACTH stim test for us (not our current endo) was at a major pediatric hospital in Houston. It was one of the first things our current endo remarked on when reviewing her records - "that's not exactly doubling". I think the reason he hasn't pursued it harder was that the low and non-responsive catecholamines were a big/potentially bigger issue at the time. He's fiddled with that one quite a bit and she is so much further along than she was. But i've always wondered on this cortisol thing. Its a mystery. A morning cortisol of around 10-12 isn't outside the range. But...........she doesn't produce more when needed. I do know that the 24 hour urine is not indicative of Addison's, and not usually used as a test. However, I will say that our endo believes it can reveal a lot and for it to be a 3 on multiple occasions is not right. My daughter can exercise now but she is always so 'weak' compared to where she was before and it makes her SO frustrated.

Trying to figure out how to bring this one up again at our next visit this Friday.

[Friedbrain]

The endo who did the ACTH stim test for us (not our current endo) was at a major pediatric hospital in Houston. It was one of the first things our current endo remarked on when reviewing her records - "that's not exactly doubling". I think the reason he hasn't pursued it harder was that the low and non-responsive catecholamines were a big/potentially bigger issue at the time. He's fiddled with that one quite a bit and she is so much further along than she was. But i've always wondered on this cortisol thing. Its a mystery. A morning cortisol of around 10-12 isn't outside the range. But...........she doesn't produce more when needed. I do know that the 24 hour urine is not indicative of Addison's, and not usually used as a test. However, I will say that our endo believes it can reveal a lot and for it to be a 3 on multiple occasions is not right. My daughter can exercise now but she is always so 'weak' compared to where she was before and it makes her SO frustrated.

I think it's because it's not their "bread and butter". They can live quite nicely on diabetic patients, and it requires very little thinking on their part. Having to work extra to keep up on other endocrine issues in order to treat difficult cases like us...well, they don't have to. Just like a neurologist "doesn't have to" remember anything about the autonomic nervous system even though it's a neurological (central AND peripheral nervous system) dysfunction.

How did your doc look at catecholamines, and what did he decide was going on? The first endo measure was a 24hr urine test my fp ordered in order to look at epi/norepi levels. My epi was nonexistent and the epi/norepi combined level was significantly low (opposite of what he expected, so I was sent to the endo, who later diagnosed "adrenal insufficiency"). Nobody ever mentioned that epi/norepi result again or what it meant, if anything. I seem to now over-react to epi (adrenaline), so wonder if my body has become sensitive to it from mostly lacking it? I don't know, just an idea.....

[kjd111]

Our endo did the catecholamine test first thing after deciding he: 1) didn't like her color and 2) discovering she had a pretty low bp sitting down. He asked us if we could spare the rest of the afternoon and we said we could. So they ran an iv line in first to draw blood (so the needle from the draw wouldn't change the readings). Then they put her in a dimly lit room for about 40 minutes lying down. Then they drew the "lying down catecholamines - dopamine, epinephrine and norepinephrine. Then they stood her up and a minute or so later took the standing blood draw for the same. They also drew for renin and aldosterone. Her catecholamines came back low/normal lying down. The range for standing appears to be approximately double or maybe a touch more, that of lying down. The total between the 3 lying down for my daughter was 242, with no measurable dopamine. The total standing went to..............270, also with no measurable dopamine. The renin came back in the low 2's and aldosterone less than 1. He told me he suspected from the symptoms and history that the catecholamine issue was there - although it was worse than he expected. He was really surprised about the aldosterone though. I think he initially suspected just a catecholamine issue. In fact, he told me he was so sure that was it he started her on midodrine before he got the results back. When they came back, he added the florinef. He started on a really low dose of midodrine and, unlike a number of people here, she had no side effects, but not a very large effect from it at all. Since then, the doses have ramped up a lot and they have helped. He has added in a lot of other medications too - some at my prodding but many on his own.

He really is the nicest man. When he called to give me the results of the blood tests 4 or 5 days later, I commented that my daughter was somewhat disappointed there was only a little lift from the medications. He said in his most gentlemanly southern drawl ( he is a wonderful, older man), "well, its like adding salt to beans...you've got to go slow so you don't add too much". It is my favorite line from him ever.

I don't think she will ever be 'cured' but she is so much more functional (honors classes at school, limited athletics) that I will be forever grateful. It took us almost 2 years to find him and he ended up being in our back yard as it were.

[Victoria]

Has anyone who has had both high and normal cortisol considered Cyclic Cushing's syndrome as a cause? It's a rare disorder characterized by repeated episodes of cortisol excess interspersed by periods of normal cortisol. I'm discouraged because I can't talk my endo into testing me.

[DoozlyGirl]

I tried to get my second endo and PMD to consider cyclic Cushings as well, after my urine catecholamines and plasma metanephrines ruled out pheochromocytoma. By then my swinging BP (low while laying, really high while sitting and drop while standing) raged after an epidural-->CFS leak-->blood patch, triggered cardiac symptoms and prompted autonomic testing.

[Lovebug]

He said in his most gentlemanly southern drawl ( he is a wonderful, older man), "well, its like adding salt to beans...you've got to go slow so you don't add too much". It is my favorite line from him ever.

My doc is the same way. He always says "slow & low" with meds. He starts me on a pediatric dose and then lets me increase it in extremely small increments (if at all). He also advises me to stay away from the medical profession (especially ER) b/c he says they will "mess you up". They just don't have the knowledge to treat us.

[shoegal]

can it be too low and cycle?

[Victoria]

. . . .after an epidural-->CFS leak-->blood patch, triggered cardiac symptoms and prompted autonomic testing.

I had the spinal tap because I had meningitis, then a blood patch because my migraine would not resolve. I developed cardiac arrhythmias and was placed in the cardiac unit, but no ANS testing. Darn. I find the spinal cord interesting as it pertains to symptoms.

[sue1234]

Regarding the cyclical Cushing's, I've done multiple 24-hour cortisol urines over the last few years trying to catch a high. I hang on to the container and do them when I'm feeling somewhat highish, and I've done them when I feel somewhat lowish. So far, I just get normals or lowish, even though the range doesn't say there is a true lowish. I am growing two adrenal tumors, so to me it sounds like my body is trying really hard to produce something extra, just don't know if it's cortisol, aldosterone or catecholamines.

But yea, I try and do 24-hour urines for cortisol about twice a year.

[sue1234]

kjd111--I sent you a PM.

[Lovebug]

I am growing two adrenal tumors,

Why don't they remove the tumors? Why let them grow & "watch them"?

[sue1234]

From what I understand, they don't remove them because they have not "shown up" biochemically yet. Their argument is that they are non-functioning. Somedays I might argue differently, as my symptoms are on a sliding-scale daily.