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Adrenal Insuff. & Dysautonomia?


ar1281a
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Hi, I've been reading some posting in regards of people with adrenal insuff. What I couldn't find if it was believed to be the cause of your dysautonomia? and if treatment cleared or improved your sx?

Thanks! I'm interested as finally a test comes back with something: low cortisol level and my GP & endo think it may be causing my sx (they know about pots but are not expertes - they're trying though to help) and was wondering what others experiences on this topics are?

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Hi,

Funny you should mention this now...I'm just starting to look for posts on this too.

I went to a new doctor on Tuesday who is an MD but also uses Chinese medicine. She thinks I have adrenal insuffiency, specifically low aldosterone - and she definitely thinks that it is what's causing my POTS. We haven't done any tests yet - right now we're going to try to work on it with diet and supplements, because I'm in bad shape from some other medicine, but I'm so excited to have someone with a new outlook on it. I've had POTS for 4 years now and never had this mentioned. She was very positive that she could help.

Here's a link to an article I found explaining it a bit. It describes my symptoms pretty accurately.

http://www.goodhormonehealth.com/youradrenal.pdf

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Hey there,

When I first fell ill my endocrinologist tested all of my adrenal functions. He talked to me about cortisol levels and Addison's disease. My levels turned out to be normal (much to everyone's astonishment) but I learned alot about adrenal insufficiency in the process.

Do you have a good endocrinologist? If not I suggest you get one. Also, have you had a CT scan of your abdomen?

- Lauren

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Hi Lauren, thanks for your reply. Yes, I have a great endo! and yes I've had a CT scan of the abdomen done that came back normal.....like evrything else. It may sound weird but I was so excited of having an "abnormal" test that may indicate why I'm having these problems....

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ar1281a,

My endocrinologist knows my POTS doctor and vice versa. I did okay on my cosyntropin stimulation test but did not do okay on the insulin tolerance test (which tests the adrenal reaction to stress).

See the following prior thread:

http://dinet.ipbhost.com/index.php?showtopic=2260&hl=adrenal

As for which came first, the POTS or the poor adrenal reaction, the doctor cannot say.

He's working with giving supplemental adrenal hormone (low dose) to some of his POTS patients. I could not take the hormone. The heartburn was too bad.

For some of his patients that do take hydrocortisone, the endrinologist has said they are doing better.

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It may sound weird but I was so excited of having an "abnormal" test that may indicate why I'm having these problems....

OMG, I totally know how you feel! I'd be soooooo excited to get an abnormal result (well... as long as it was something treatable and curable).

Awhile ago, they thought I had insipid diabetes and I almost cried when the results came back normal :)

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I had 3 cortisol stim tests. The first two started in the normal range, but had no reaction to the stimulant. So they did a third one. The baseline was out of range on the high side and had only a mild response, but it was greater than 7, so they said it was okay. No comment on the fact that the baseline was way above normal.

Personally I think there is a strong connection between ans and endocrine, but which came first is the real question, and then, does it matter? One seems to beget the other.

I did try a few doses of hydrocortisone, but it was not for me. We have 4 endocrinologists in my town, and none of them want to deal with anything but the thyroid. Go figure....morgan

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ar1218

Ditto to what Morgan said. the ANS can affect our endocrine system and vice versa. If I have had to wait too long in waiting room in the AM to get blood drawn, I get symptomatic and my cortisol levels can be a bit high. Next time, no wait and a bit low normal. Now i just tell people I need to lie down for blood work or I faint and we seem to get truer readings....at least for me. .

My prolactin levels have been all over and my aldosterone slightly elevated at times. W/o aid of medications. Then being 48 can do odd things to women's hormones as well with this illness.

So we can often have symptoms of "one thing" and then tests don't prove it to be true, or even the opposite can be true. I had normal periods and no headaces many years ago but had an MRI to check for pituitary cyst/tumor due to high prolactin levels. My endo was speechless.... them in the elevated range. Checked later, they were much lower???? It's like different blood from different peole and I know many others have experienced similar blood work.

Sometimes I wonder if in the places that study ANS pts, do they draw BLOOD for the endocrine checks 24/7? My endocrinologist thinks many times our glands can fluctuate in what they spit out but you have to "catch it" in the act. Hence, many of us have 'normal' blood work done say for thyroid...or cortisol...but our thyroid gland and adrenals may be low throughout the day and higher other times.

I am convinced my cortisol leves are out of whack at NIGHT that adds to my circadium rhythms. But w/o a phlebotomist to follow me or others around, who knows how our complext ANS system fluctuates. And I have not had access to a phlebot at 10 pm, midnight or 3AM. Though the late ANS endo specialists Dr. Streeten used to check things at odd hours in some patients.

But too many of us havd similar symptoms, with oppositve blood work or vice versa. So I believe anything is possible. And tests may or may not give true answers.

Why? because what is 'normal in a lab test' may NOT be 'normal for our bodies'. So its' complicated.

Kristen

re: Chinese medicine doctor.? There is an MD locally who practices Chinese medicine. He is also an oncologist and acupuncturist. I am kicking around the idea of seeing him but can you give me a clue...the Chinese Herbs they tell you to take, do the doctors sell them to you? Or tell you where to get them and are they expensive? I think there is much to learn from Traditional Chinese Medicine but don't want to waste the docs time if the herbs are expensive. My accupuncture would be a birthday present from a friend...a couple or three visits.

Medicare doesnt pay.

I had free acupuncture once with INTERESTING results from a friend of a friend years ago. Loved the session! good luck to all.

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Just an addendum to Sophia's post. My 24 hour urine was supposed to be refrigerated and went over 7 hours uniced, so who knows. The labs can skewer the speciman, the staff can, the time of day, the way it's shipped, and even different labs have different values.

Add to that, the fact that if doctors don't like what they see, it's been my experience that it's "not low enough/high enough" to worry about. Not that I'm in the least cynical about this..... :P morgan

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ar -

while full-blown addison's can definitely cause symptoms that can be similar to POTS & will improve with treatment, the less definitive situations are - in my opinion - less easy to figure out. like others mentioned, who knows which came first.

one of my docs in baltimore (neurologist & autonomic doc)had "coincidentally" found some correlation with endocrinologist colleague of his in regard to patients they both had improving after treatment of their cortisol/adrenal insufficiency. that's what prompted my getting tested this past year. when i asked the docs at vandy about it (i was scheduled for the testing but hadn't had it yet) they weren't familiar with any correlation but said go for it in re: to finding out anything that could help &/or provide treatment direction.

as you may have come across since you mentioned you've already been reading past posts, i have a cortisol deficiency....but who knows if i had this prior to my autonomic problems or not. and honestly i haven't noticed any change since being on the cortisol. i am planning on weaning off the cortisol to see if symtoms change notably (at endo's direction) but am not willing to do this while in classes in case is prompts a major crash so it will have to wait. i'll always need to get cortisol (IV) though if having surgery or invasive testing in the future though....

my reaction to surgery MAY be an indication that i didn't have the cortisol deficiency several years back (when i did have a NCS/POTS diagnosis), and thus would tend to make me think that the autonomic problems came first. i had cervical spine surgery several years ago as well as several minor outpatient procedures over the years without significant difficulties. when i had my gallbladder removed this year though i had MAJOR issues after, retrospectively perhaps b/c of the cortisol deficiency (i wasn't tested until several months later).

so....as my autonomic issues got worse maybe the cortisol problems followed suit? but there's no way to know really.....

some have improved with cortisol treatment (if deficient) but it hasn't seemed to be true for everyone...

you've probably already come across them, but here are two other discussions re: the testing & the like with adrenals/cortisol:

http://dinet.ipbhost.com/index.php?showtopic=2770

http://dinet.ipbhost.com/index.php?showtopic=3061

i think this is another one of the many things that is pretty unclear to folks at this point but hopefully will be figured out someday!

B) melissa

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I have Addison's Disease AND POTS. Definitely get a good endo, although mine was thorough, I had issues with him. He didn't want to diagnose me with POTS because my test results needed to fall EXACTLY within HIS limits. I was .01 off on one test and therefore, he said nope, not ADDISON'S!

I asked for an additional test...one test that is not used much anymore for the diagnosis of Addison (Metrypone test - don't do it). The research said that if you DO have Addison's have the test done in the hospital because it could cause an adrenal crisis. Since my dr classified me as not having it, he said it was just fine doing it at home. I said NO WAY, you do the test, you do it in a hospital. So, I checked myself in. At midnight they gave me 10 ALMOND size pills to swallow. By the time I got to #4, I knew that there was going to be a problem.

20 mintues later I started to throw up what I swore was gasoline. I honestly felt like my throat was melting away. I threw up again and again. By the morning, I felt barely alive. Things just started to snowball.

Funny thing is I was told BEFORE the test that it would take a week to get the results. By morning this endo said the results were NEG! I was getting WORSE! I ended up in the local hospital for a week before they transferred me to Mayo in Rochester, where they ran a bunch of additonal tests. That is when they also diagnosed me with POTS! (I had been having issues with dizzy spells, standing, walking, etc.)

THEN I also found out that the results of that other test were actually POSITIVE! Go figure. They believe that I had an adrenal crisis caused by that test...oh and my respirations went down to 3 a minute - they even called the crash team in! How is that for "the test can be done at home!" I cannot IMAGINE what would have happened had I done that.

Anyway...It has all made sense. I have had MAJOR issues with being able to recover from anything. I would get sick and it would take me twice the normal time to get better. Sores don't heal...I can't handle stress well, my body comes apart. So...I now take prednisone for the addison's and increase it whenever I start to feel sick. If I start to get the flu, I have to call my dr and go in for an additional shot of meds to help battle it off. Unfortunately, even getting the flu bad enough with Addison's can kill you. Never let it get to that point.

Right now it is not so good here. Due to some new meds I started (and they just came on the market), I haven't been able to eat for about 2 wks. I have lost 14 lbs! I just can't seem to fight this for whatever reason. I have stopped the med and my dr thought things would get better, well, unfortunately, it's not. My dr. is giving it to Monday to get better and if it isn't I think that some extreme measures are going to have to take place.

Anyway...that is my story with POTS AND ADDISON's. If you have any questions, shoot them my way. I was told that Addison's is rare, so any info people have always tends to help.

~Lisa

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Thanks to all for your replies....

Lisa, I'm interested in knowing if when Addisson's was dx, did they do the anti-bodies test?

I'm just looking for an answer to my sx, no one seems to know what's wrong. I was told by one of my Drs that although I have a dysautonomia, he was sure that I'd get better eventually.....just to wait and see. My other Drs are trying and don't know what's wrong....just frustrated, sorry for venting :)

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Thanks to all again for your replies.....

Just a little update, my GP and my Endo talked today and they don't seem to agree on what to do next. My GP would like me to get on a low dosis of prednisone and slowly tamper me off. Apparently, my endo thinks that's better to use other drug (acetate something, I can't remember exactly) at higher dosis...soooo my GP today said to talk with my endo and to make a decision...I see my endo on Friday....they both seem to agree that my dysautonomia sx are caused by my adrenals though (we all hope)...but I really don't know what to do. I like both my GP and my endo. My GP is a new one, I found her after my previous GP said he didn't know what what's wrong with me and just wait to see if I got better (he, he's not in my body!) and my endo found out 5 years ago that I had an overactive thryoid when other Drs said that I was just "stressed" and to take a vacation...go figure. Any advice, rec, etc is more than welcome at this point.

Thanks to all again, I'm very happy to have found this forum!

Andrea

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Hi,

I am a new "poster" and have read with interest the adrenal insufficiency & dysautonomia thread. The symptoms sound very familiar, and I am currently being worked up for adrenal insufficiency. I was diagnosed with "autonomic instability" (orthostatic hypotension, neurocardiogenic syncope, hypovolumia) about a year ago but probably have had the condition since my 20s (I just turned 50). I also have Hashimoto's thyroiditis, which is under control. Most of the time my autonomic symptoms are manageable. The exception, though, is that the common cold or other minor ailments seem to cause disabling excerbations that can last months.

I have been told that I have very high renin levels, which were evident in several blood tests. Is anyone familiar with this? My endocrinologist believes the high renin indicates that I am hypovolumic, but my other docs seem completely mystified. Thanks!

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Oi Vey,

Check out page 2 of this prior long post: (I hope I have the link correct):

http://dinet.ipbhost.com/index.php?showtopic=571&st=15

It discusses renin/ aldosterone abnormalities.

I hope the doctors have access to the internet because if they don't know what is going on, at least they can do searches to find whatever is written out there, like some people do on these forums :( (just kidding)

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Hi,

I had low cortisol levels and low thyroxin so my endo thought i would have a pituitary or adrenal disease. It covers pretty much all the OI/CFS symptoms. However when i got the tests done again they came back negative so that lead to my OI diagnosis (in consultation with a nurologist).

So yes as most have said it does follow the symptoms :(

When i came back negative my endo was so excited .. i cried ... i wanted to have a pituritary disease so it could be treated.

Good luck with the treatment or tests ... i hope you find some answers ;)

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Ok as far as i understand the body creates cortisol to wake you up and give you energy.. you should have more in the morning and less at night ... so if its the other way around then it could make your sleep patters wonky and that could lead to trouble functioning 'normally'.

I hope thats correct.

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there are definitely correlations with cortisol levels & the time of night/day but it controls (or helps control) MANY other things in the body as well. i'm don't generally post more commercial-minded sites for medical info, so keep in mind that this isn't a medical text, but it's a decent summary of cortisol & it's role in the body, including the fact that levels are normally highest in the AM (~6-8am) & lowest around midnight.

http://stress.about.com/cs/cortisol/a/aa012901.htm

hope this helps...

B) melissa

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Kristen

re: Chinese medicine doctor.?  There is an MD locally who practices Chinese medicine.  He is also an oncologist and acupuncturist.  I am kicking around the idea of seeing him but can you give me a clue...the Chinese Herbs they tell you to take, do the doctors sell them to you?  Or tell you where to get them and are they expensive?  I think there is much to learn from Traditional Chinese Medicine but don't want to waste the docs time if the herbs are expensive.  My accupuncture would be a birthday present from a friend...a  couple or three visits.

Medicare doesnt pay.

I had free acupuncture once with INTERESTING results from a friend of a friend years ago.  Loved the session! good luck to all.

Hi,

I've been out of town and just saw this - I guess it's a little off topic now but I wanted to get back to you. The doctor both recommended herbs/supplements for me to buy - I went to Whole Foods although she said Cost Co was cheaper - and sold some to me. One bottle I bought yesterday was $7.50, another was $14 for an economy size bottle of Magnesium supplements that I couldn't find in the right strength. This is my only experience with this type of doctor, so I don't know if this is how it always works, but I think it's very fair. Right now we're working more on building up nutrition and strength again because I became so sick on Topamax, so POTS is actually secondary at the moment.

Kristen

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