Jump to content

Poll On Adrenal Function


  

101 members have voted

You do not have permission to vote in this poll, or see the poll results. Please sign in or register to vote in this poll.

Recommended Posts

Okay, I have been thinking about adrenals lately because of my unrelenting vasodilation. I have been reading of all the possibilities for causing it, and keep coming back to a couple of things, one of them being cortisol. Cortisol is needed or there is widespread vasodilation in the body. It is apparently needed to let the catecholamines work on the vasculature. So, for those of you with chronically very low b/p, I would hope that this has been thoroughly evaluated in you!

So, I have mentioned before that I have had low-normal serum cortisol, as well as one high serum cortisol a few years ago. I seem to be a perfect combo of high and low cortisol symptom-wise. My blood pressure seems to be coming down more in the last year. And, as I've mentioned, every time I've saliva-tested for cortisol, they all were low morning and low or low-normal later in the day.

I know in adrenal disease(as far as low cortisol), mainstream medicine looks at you as being normal adrenal or having Addison's. I know alot of fringe medicine believes in "adrenal fatigue". Mainstream medicine does not. What if we are the TRUE adrenal fatigue cases? What if we are not Addison's, but always on the verge. Give us any stress, good or bad, and we topple. Then we have to rest to get back to our just-getting-by normal.

I think whoever is doing POTS research needs to make sure they have thoroughly addressed cortisol, or some variation of the cortisol diseases. We sure have more in common with Addisonians than astronauts!

I mean, people with Addison's disease have these issues:

Light-headed when standing

Dizziness

Nausea/vomiting/not hungry

Intolerance to light

Heat and cold intolerant

Urinate frequently

Diarrhea

Weakness

Can't tolerate stress, good or bad

Thirsty

Low blood volume

Hypoglycemia

There are more similarities, but as you can see, all the biggie symptoms parallel ours. They also, besides needing cortisol replacement, take Florinef and salt, and drink lots of fluid.

I would like to also add, that with so many of us having allergies to everything(it seems), we have to realize that cortisol helps calm the system down related to some allergies. For instance, when I have had bad poison ivy exposures, cortisol was given to calm the reaction down. Now, I surely don't know if cortisol helps all allergic reactions, but I know it helps some. So, just food for thought.

Link to comment
Share on other sites

  • Replies 61
  • Created
  • Last Reply

Top Posters In This Topic

I am on HC(hydrocortisone) for adrenal insufficiency and I can say with 100% certainty it has done absolutely NOTHING for my POTS. My natural doctor was SOO sure I would see improvements and when I didn't he wanted nothing to do with me. Pretty much POTS is all I suffer from nowadays. I have tried messing around with dose and dosing schedule for over a year now. It does not matter what I do, I still have POTS. Going on HC (hydrocortisone) is probably not the answer for most people regardless of what their saliva results say. I would rather look at stim test and AM ACTH results. If you have weird varying AM cortisol readings, then get your CBG checked along side it to see if that is elevated especially in woman. Estrogen elevates CBG which can make your AM cortisol readings or stim results look OK when they are not.

There have been studies done in those with CFS and there are minimal benefits when taking HC and the risk of adrenal suppression is high.

http://www.nih.gov/news/pr/sept98/niaid-22.htm

Those with adrenal fatigue don't get relief from HC either. Look at all of the adrenal forums and you see they take HC and either get worse or feel nothing at all. I made a huge rant about all of this on my blog recently. If you want to read that, let me know I will give you a link to it.

Even though cortisol is low, taking cortisol does not fix the issue. Those with true Addison's take HC and immediately get their lives back. It is like night and day. Now I do get benefits from HC, but as far as my tolerance for standing, it is still as bad as ever. I've tried to come off the HC many times now and I cannot, so if I didn't have adrenal insufficiency before I went on HC, I do now. :(

Link to comment
Share on other sites

Dana, I have read all those forums on "adrenal fatigue" for the last 10 years!! Ten years ago, before I had POTS, I also had a natural doctor do the saliva testing and put me on a very low-dose(5 mg) cortisol. In a few weeks, I felt AMAZING! I literally "woke" up! I felt physical great and emotionally wonderful. After about a month, I got scared of taking it, because of knowing how powerful cortisol can be, and dangerous if not needed. So, I weaned myself off over many months, and went back to my normal, fatigued life. I didn't develop POTS for a couple of years later, so I know my POTS was not related to me trying the cortisol.

I have, over the following years, repeated saliva tests that say I am low, and the natural doctor was again willing to prescribe me cortisol, but I would not take it again. I have chosen to let mainstream medicine test me for adrenal problems and see what that shows. My stimulation test done a couple of years ago showed I stimulate, so not a problem. BUT, I do have morning blood cortisol that is really low-normal. What if most of my days are spent at low-normal? Some true Addisonians have stated that at times before their diagnosis, their doctors explained some of their symptoms from adrenaline kicking in to compensate for their failing cortisol.

After reading all the "adrenal fatigue" forums for years, most of those people don't faint or feel like fainting on a daily basis. I don't recall most of them having heart racing like we do when standing. So, I guess what I am saying is, what if we are the "real deal" where adrenal "fatigue" is concerned? People who are house-bound, people who are bed-ridden like some of us. People who have days where they can't walk to the bathroom without feeling like passing out.

Link to comment
Share on other sites

What just surprised me was I decided to look on PubMed and see what was being written about regarding cortisol saliva testing, if anything. I actually found recent literature saying that saliva is equally good, if not better due to it measuring free cortisol, than serum testing! So, what does that say when:

1. I have low-normal serum

2. I have low saliva

3. I have low-normal 24-hour urine

I think I see a trend here that I'm going to have to ask my endo about. I have never brought up my saliva results to any of my endos, because it was obtained using "fringe" medicine. But, I guess I'll have to haul my PubMed articles with me to that appt. as well!

Link to comment
Share on other sites

Did you ever see the actual results to your stimulation test? Endos are pretty well-known to say everything is normal even if it isn't. I'd recommend getting the results in your hand and post the results here or on an Addison's forum to see what they think. Also I'd get an ACTH checked first thing in the morning too. Just make sure the lab does it right because there are special handling protocols. If your ACTH is elevated, then that's a good clue something is off. Mine was!

The idea that the adrenals get fatigued is a misnomer. The problem is HPA axis dysregulation. If adrenal fatigue was possible, then Cushing's Disease would not be possible.

Like you said, even though Addison's patients suffer from some orthostatic intolerance it is no where near as severe as what we have. I post frequently on an Addison's forum and they kept telling me they felt better within days of starting HC. I also felt a lot better too, but unfortunately as I said the OI is not any better. I wish! :P Years ago I was convinced that adrenal fatigue was my issue and I'd be better with HC. Now I'm trying to tell others that it is not this miracle cure that it has been made out to be. There is something else going on with us that is quite complex.

Since you've already had a stim test done, I'm not sure what to tell you. Find an endo that is more open-minded about the interpretation of those results and the use of saliva cortisol results.

I realized that I answered the electrolyte question with what my electrolytes run nowadays. Before I started HC, my potassium was always 4.5 or so and my sodium below range. Now they are both low. :lol:

Link to comment
Share on other sites

Hi Sue!

I couldn't complete your poll b/c you didn't have the option of "I have been tested for Cortisol and it was high". I was tested last summer with high results. The endo then ordered a ACTH stimulation test thinking I had Cushings. Well, that came back negative. When I asked the chic that called me with the results what I needed to do about my high cortisol she just said, "he didn't say anything". So I just said "Oh well". But I often feel like I could crawl out of my skin and real antsy. I wonder if it is due to high cortisol (stress hormone)...? It happens a lot in the mornings. Anyway, I want all of my hormones tested extensively b/c I know I could feel better than I do now. My symptoms always get worse around my "dot" so either my hormones make my symptoms worse or my Dys whacks out my hormones (the chicken & egg argument). I hate all this!

Link to comment
Share on other sites

Dana, I did get my results. Now, this was done 5 years ago at the onset on my POTS. I have declined quite a bit in the last year or two, especially the last six months. So, I don't know if the test from five years ago even represents what is going on now. I don't know where the paper is, but I can kind of remember the results. My baseline cortisol was around 12(which is decent) and stimulated to around 32(which tripled). So, at the time of that, everything looked decent. I just know that in the last few years, when I do 24-hour urines, it is low normal, like around 6(0-50). When my number is so much closer to zero, I don't think it means adequate! I did find some research that said people with a history of PTSD have low urine cortisol. Of course, I couldn't access the full article to see what they say is "low", but I can assume 6 might qualify.

I understand what you mean about because of Cushing's, adrenal fatigue wouldn't be possible. EXCEPT when there is a cortisol-secreting adenoma. That's why I keep having 24-hour urines, because I have two small adenomas.

ohhh, there is nothing simple about POTS! B)

Link to comment
Share on other sites

Lovebug, I added in a "high" category, so you can take it. You should have had a dex-suppression test for the high cortisol to see if it was from an adrenal or a pituitary source. Did they ever re-test you?

I'm going to do what Dana suggests and just post my results with normals in parentheses.

7/14/10 Magnesium 2.0 (1.5-2.5) Normal

Total Cortisol am 26.7 (4-22) High

ACTH, plasma 79 (5-27) High

IGF I, ECL 119 (64-334) Normal

Metanephrines <25 (<57) Normal

Normetanephrine <25 (<148) Normal

Total Metanephrine <50 (<205) Normal

The Endo's response to the above was the following: Normal except 1)ACTH 2)Cortisol = please do #1. 24 hr urine free cortisol & creatinine #2. Dexamethasone Suppression Test

My results were to that were:

8/4/10 ACTH, plasma <5 (5-27) Low

Cortisol 1.6 (4-22) Low

ACTH, plasma 18 (5-27) Normal

Cortisol, Free 24hr urine 23.4 (4-50) Normal

Creatinine, urine 1.32 (0.63-2.50) Normal

Total Urine volume: 3550 (obviously I was fluid loading, LOL)

The Endo's response was to the above: Good normal 1.0 mg Dexa suppression test, no cushings, no excess steroid, normal pituitary-adrenal axn

Link to comment
Share on other sites

Lovebug, I cannot remember the specifics of the dex. test, but I think the purpose of it is to show your doctor where the high cortisol issue was coming from. I think he didn't interpret the whole picture correctly?? I don't think it is ever "normal" to have a high ACTH.

Link to comment
Share on other sites

@Sue That is a pretty good stim. I've been seeing more and more results like this in those of us with POTS and CFS. It's like our HPA does not properly signal the hormones under normal conditions, but the adrenals themselves are working great. I don't know what the answer is for this though. All you could do is try HC and see if the benefits outweigh the risks. We do this with all of the other medications taken for POTS. I personally won't touch a lot of the meds some people have no problems taking at all. Yet I took HC without a second thought. haha :P

@Lovebug those are some interesting results. The high ACTH is quite high and is not normal at all! This is why it is all so confusing and the reason why I do not believe there is a single hormone as the cause for POTS. My serum cortisol results were high too, but my saliva results were dreadful. My natural doctor went with the saliva results. The endo was right. The dexamethasone test suppressed your HPA, so you don't have Cushings. It makes me wonder why we all have such messed up hormones though. It really does not make any sense at all. :blink:

The ACTH that was <5, was that after you were given Dexamethasone? If not, then I suspect the special handling procedures were not followed and they actually left your sample out. ACTH degrades at room temperature, so the vial has to be placed on ice immediately after drawing it from your arm. If it isn't, then you get really low results like that. It makes me wonder how often this happens. <_<

Link to comment
Share on other sites

Dana, I agree. We need researchers to figure out WHY we have odd hormone levels. I hope if any researchers EVER look at this forum, posts like this will catch their attention where they can see trends in the lab results(even if they are in the form of a poll). I think stuff like this is useful info.

Theoretically, wouldn't it be nice if "we patients" could get a grant to pay a research doctor to do nothing but go over possibilities regarding POTS?! Someone that we could have a quarterly internet meeting with to ask questions of, like what about this cause or that cause.

Link to comment
Share on other sites

I've never had a saliva test for Cortisol but wonder what my levels would be. I agree about the messed up hormones...I'm starting to have spotting between my "dots" so I guess I'll be making another appointment with my GYN soon! Yes, the ACTH which was low was after the suppression test. I would question the way this particular lab handles specimens though b/c it is a very small satellite location for Quest with only 2 lab technicians. I still was curious as to why I'd be walking around with high Cortisol (indicated by the very first plasma result)...

Thank You both for your input!

Link to comment
Share on other sites

Dana, I agree. We need researchers to figure out WHY we have odd hormone levels. I hope if any researchers EVER look at this forum, posts like this will catch their attention where they can see trends in the lab results(even if they are in the form of a poll). I think stuff like this is useful info.

Theoretically, wouldn't it be nice if "we patients" could get a grant to pay a research doctor to do nothing but go over possibilities regarding POTS?! Someone that we could have a quarterly internet meeting with to ask questions of, like what about this cause or that cause.

Polls are really good on here. I think we should have more of them to be honest! I'd love to be a guinea pig and let a researcher test me for whatever they wanted. I have already told my husband I may donate my body to science if I still have POTS at death. Maybe it could help them figure all of this out. Maybe that sounds way too morbid? haha

Link to comment
Share on other sites

My daughter's aldosterone was less than 1 (essentially zero). Her morning cortisol ranges from 7 to 12. Her morning ACTH was an 11 if I remember correctly. The one time they did a stim test, they allowed her to eat and walk around so our current endo said that's no good. She went from an 8.4 ish to 15. The really baffling thing has been her 24 hour urinary cortisol (which has been done twice) was a 3 both times. They have tried her on HC and Prednisone and she got a bump from the Prednisone but not the HC, but the Prednisone made her really anxious. Her catecholamines respond not at all to upright posture (245 to 272 with standing). She has tremendously low blood volume as well as OH and only mild POTS. Her condition may be slightly different from some folks here though as her troubles all started after a fall and blow to the head.

Link to comment
Share on other sites

kjd111, all of those numbers sound like hypopituitary to me, and her stim test did not double. It was close, but not doubled, and I think I read somewhere that when doubling, they like it to at least reach 20.

And, then with hitting her head, really sounds like it could be hypopit. I would push to have another stim. test, done fasting for sure, and try and go to endo that has expertise in pituitary issues.

Of course, the aldosterone is very low. Do they have her on Florinef? If she is truly adrenal insufficient, then maybe the hydrocortisone wasn't prescribed at a high enough level. I know I have read where Addison's people tend to feel better with hydrocort. versus prednisone(not all, but alot).

Link to comment
Share on other sites

kdj111

I too had a head injury just prior to developing thyroid and adrenal failure(Addison's). I was bent over picking up a bale of hay I dropped when my horse came running into the barn and hit me on top of the head. Just this last March was diagnosed with hyperadrenergic pots.

My TSH is 0.01 with normal free t-3 and low to low normal free T-4. I take Nature-throid thyroid medicine. I did not do well on Synthroid.

ACTH is < 5. ACTH was only 16 at diagnosis of Addison's through a Cortrosyn Stim test. Base draw was 3.9, stimmed to 6.1 in one hour. I have never had high potassium. My potassium, sodium and magnesium are all low to low normal. I take potassium and magnesium supplements. My renin and aldosterone have always been low for the past three years since the diagnosis of Addison's. I cannot take Florinef due to migraines it causes, so I just increase my salt and fluid intake and drink a lot of gatorade. Using compression hose from waist to ankles has helped some too.

My labs always confuse the doctors. They try to lower my meds due to the suppressed TSH and ACTH and I end up getting very sick, sometimes in the hospital. (TSH and ACTH levels never come up) Last mid day cortisol draw was only 2.1 at 1pm when I had taken 30mg of hydrocortisone that morning. My ACTH level drawn at the same time was < 5. Very confusing as to where the cortisol I am taking is going. (I require a much higher dose of hydrocortisone 35-40mg a day than normal). Doctors have no answers.

I also have indications of a possible mast cell disorder with red flushed cheeks and chest, red/brown patches on my skin, 20 years of chronic swellings(take 2 days to go away) in the corner of my eye and sinuses, abdomen, and bottom of feet, and bad reactions to lots of medications (hive/swellings and abdominal pain and nausea).

I have a past history of an autoimmune disorder. MCTD 20 years ago (current ANA is neg) and I do currently have anti thyroid antibodies

( 250) also.

Because my illness has a few layers: head injury possibly triggering autoimmune response against adrenal and thyroid, hyperadrenergic POTS, and a long history of possible misbehaving mast cells that I find it VERY difficult to get anyone to look at the big picture and actually help me.

I get very discouraged at times. When I first got sick my doctor told me I was a menopausal fruitcake, when in fact I was dying with Addison's, so I am VERY involved in my care. I get copies of all labs and try so hard to find answers to make my life better, so I can be more functional. I used to be the "fix it" person, now I am lucky to walk 50' or talk 5 minutes.

Link to comment
Share on other sites

@kjd111 That's a textbook failed stim test. Shame on those doctors for not knowing that. Your daughter needed to reach at least 20 and she did not, so that's a fail and needs treatment. Find a new endo who will actually work with your daughter to get her dosing right. It sounds like she was under-replaced on the HC and overreplaced on the prednisone. Most endos have no clue about adrenal insufficiency, so you need to find one that specializes in it. Most Addison's patients take anywhere from 15-25mg of HC a day split up in at least 3 doses. This is more like what a normal person's body would do. I don't know how your daughter was taking it, but I take 5mg in the AM, 5mg about 4 hours later, then 2.5-5mg 4 hours after that. If it was a rough day I may even take 2.5mg right as I put my head on the pillow to go to bed. Most endos from what I read online will have you take like 20mg in the AM and 10mg about 6-8 hours later. That is an awful way to dose because the cortisol peaks will be VERY high thus pushing your blood sugars up and it will cause more bone loss. Taking smaller doses more often helps to keep those peaks from being so high.

Also, It is well known that urinary cortisol test cannot be used to diagnose adrenal insufficiency and cannot be used after being on cortisol replacement. This is from Labcorp's own website for their urinary cortisol test. https://www.labcorp.com/wps/portal/provider/testmenu You will have to search cortisol yourself to bring this up. Labcorp does not allow you to link directly to their website.

Limitations:

Not useful in the evaluation of adrenal insufficiency (AI). Results in AI overlap with normal ranges. Increased in pregnancy and with oral contraceptives. Increased excretion may be found with pseudo-Cushing syndrome, trauma, or infection.2 Tetracyclines may cause false elevation of results.

I recommend reading this entire PDF, but here's an excerpt. -- http://www.goodhormonehealth.com/adrenal-cecils.pdf

In a patient with chronic symptoms, a 1-hour cosyntropin test should be performed. In this test, 0.25mg ACTH (1–24) (cosyntropin) is given intravenously, and

plasma cortisol is measured 0, 30, and 60 minutes later. A normal response is a plasma cortisol concentration higher than 20mg/dL at any time during the test. A patient with a basal morning plasma cortisol concentration of less than 5mg/dL and a stimulated cortisol concentration below 18mg/dL probably has frank adrenal insufficiency and should receive treatment. A basal morning plasma cortisol concentration between 10 and 18mg/dL in association with a stimulated cortisol concentration lower than 18mg/dL probably indicates impaired adrenal reserve and a requirement for receiving cortisol replacement under stress conditions (as described later).

@kluesyk I'm not sure how your doctors have you dosing your HC, but taking a cortisol reading mid-way through the day when your dose was in the AM does not tell you much. Most people have to dose HC every 4 hours. It peaks around an hour or so and then starts to steadily decline. You cannot dose by ACTH levels once you are on HC. It will almost always be suppressed fully and it's a worthless test! If a doctor attempts to do this, run far far away! Endos should know this stuff as it is in their own endocrinology books. :blink:

Link to comment
Share on other sites

All very interesting reading! I'll share, tho I think I posted my numbers elsewhere, too....

I had sudden (two month window) onset of neurological problems that resulted in ten days (over 2 visits) of hospitalization. After that, on seizure meds, I was still having problems including severe fatigue and postural hypotension. Endo was consulted, and a 24hr urine test was done to measure catecholamines. Norepi was normal, epi was ZERO, and the combined epi/norepi was abnormally low. So I was sent to the endo cuz fp didn't know what to do with me.

So endo gave me the ACTH stim test. My cortisol numbers were (at 0, 30, 60min) 6, 19, 16. ACTH baseline was 15. Aldosterone was 13, 18, 15. The endo said it was borderline Addison's, called it adrenal insufficiency and started me on 10mg am/5mg pm cortef. I felt MUCH better on it, so that was that. I responded to treatment, so everyone was happy, the End. Or so I thought. (also, I've been on and off florinef over the years to help with the postural hypotension and salt cravings, but I didn't like it much and gained weight, so as soon as I would feel better, I'd go back off it) That was over 8 ys ago, and I've reviewed those results with new knowledge out on the web (prompted by the fact that I'm having even more problems), and wonder if that was a correct diagnosis.

Here's my thinking: if it had been primarily adrenal "insufficiency" (or whatever), ACTH at baseline should have been elevated (which it wasn't!). Based on what I read, I think a possible interpretation suggests atrophy of the adrenal gland from prolonged lack of stimulation (ie, dysfunction at the pituitary or hypothalamus, secondary or tertiary), so that function was(is) low, and when stimulated directly with ACTH it was capable of a feeble attempt to respond (cortisol increased but not above 20, and aldosterone did not even double from baseline).

Unfortunately, I've been on cortef for so long that it would be hard to re-test me. I tried going off cortef once cuz a new doc wanted to do that, and I just felt AWFUL, started getting dizzy spells and couldn't do it.

Link to comment
Share on other sites

Friedbrain

Yes, I agree. The ACTH should have been very high if I had true primary Addison's. The fact that the ACTH was very low when I had a VERY weak response to the stim test supports your theory of atropy of the adrenal gland due to lack of ACTH. (Which in my case I think was caused by head injury or autoimmune issues).

I too have been on replacement hydrocortisone now for 3 1/2 years, so it would be impossible now to tell.

I currently take 35-40mg of Cortef(hydrocortisone) a day. 15mg at 8am 10mg(sometimes 15mg) at noon, 5mg at 4pm and anothr 5mg at 8pm. (Had to add the 8pm 5mg due to waking up at 3am in crisis mode (severe headache,stomach, back and leg pain, vomiting, weakness, shaking, dizziness). I manage to stay out of the hospital on this high of a dose. Doctors have no clue as to why I require so much more.

If I get a steriod shot (celestone/kenalog) for any other health issue (this week was for sinus infection), it majorly helps with the muscle weakness, pain, POTS and fatigue. It is much more than "Oh steriods make you feel better", it is the "fix" for my problems. Unfortunately steriods have bad side effects.

Link to comment
Share on other sites

my ACTH and Cortisol were very low, then with more testing they were borderline normal/low and my endo doesn't want to treat it.

I did try a cortisol trial and it felt good until 3-4 hours later when I crashed.

I battle with no energy, low BP, low blood sugar and all the other stuff on the list. I have a pituitary tumor so it all fits with secondary insufficiency.

Does anyone know if low dose cortisol can do any harm?

Link to comment
Share on other sites

@Shoegal

I'd try to find another endo to treat you if your results really were that bad and see how you do. Endos really are not good with adrenal stuff and mostly just know diabetes, so you may have to go to several before you find one that knows his/her stuff.

You have to dose hydrocortisone multiple times a day (about every 4 hours), so it makes sense you'd feel worse after 4 hours. The HC ran out and you were likely left very low. All of this is in their own endocrinology books, so like I said, you just need to find one who reads. lol :P

Link to comment
Share on other sites

Besides the few that have low cortisol and outright adrenal insufficiency, I am actually surprised that so far 6

people have said they have shown high cortisol! I was not expecting that. That is like 25-28% of those that responded so far. Clue, maybe? Any ideas on that one? For the ones with high cortisol, do you seem to have Cushing-type body shape and symptoms, or not? This is interesting.

Link to comment
Share on other sites

Sue,

I have one symptom of Cushings, sporadic body hair loss. I do have high cortisol. Saliva test showed all four samples were elevated with a major spike at night. Sure explains the insomnia! I recently had a fasting serum a.m. cortisol and it is high, although not quite off the charts. I have made lifestyle changes with good nighttime ritual etc. and still can't lower this crazy cortisol. I was on Seriphos last year for 4 months and it didn't change a thing.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share


×
×
  • Create New...