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I just saw a new endocrinologist who knows my neurologist (the one that diagnosed me with POTS). Since it was my initial visit, we spent more time than usual. And, of course, I asked him how he got started on helping people like me with POTS?

Anyway, I wanted to share a success he's had with two POTS patients. He has them on cortisol, an adrenal hormone, and these two patients improved tremendously. Now, he doesn't know if I would be a candidate for that. We're in the process of finding that out. And he doesn't know if it will work for everyone, or, for that matter, WHY these particular patients ARE low on cortisol or what caused the problem.

BUT.... apparently, for some, supplementation with cortisol (an adrenal hormone) has helped their quality of life. I'll let you know more as I learn more.

This is NOT written in any medical literature that the doctor knows of (yet).

Just thought y'all might be interested.

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Thanks for sharing. Good luck with this new doc!

I read lots of literature on cortisol a few years back and it did look promising for CFS. Unfortunatley my endo didn't think much of it at all so it was a dead end road for me.

I think that article Jackie posted on the Hypothalmus-Pituitary-Adrenal axis is a good theory on why something like cortesol works for some of us (some of the time.)

How is work going? Did you go back?

EM

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If and when you get more information on this or try it please, please update. I'd be very interested to hear how it helps. Like Earthmother said, I'm very much into thinking the HPA axis has a role in all of this so cortisol would make sense for some. I'm curious to know what tests they will do to screen your cortisol levels, what levels qualify to take the cortisol, and how it feels and if it helps if you try it. There is something whacky in that system....I just know it! (and also see veryblue's post about hair growth...she notices her hair growth has slowed down and last year at my worst mine was totally accelerated!...the only thing that got that back to normal was the BC pill for a couple months..couldn't tolerate it..but that proves to me that ye' old hormones were out of balance along with everything else going whacky in my body like electrolytes, HR, etc.).

I know it sounds kinda' sick (at least to me because I've never thought of things like this before except seeing it in another post by somebody whose father did this) but since this stuff runs in my family in various subtle and not so subtle ways for many family members, I'm thinking if I survive this crap and they still don't figure out what is causing it by the end of my days here on earth, I think I'd like to donate my body to science for them to see just what in the heck they can find. I only have 1 son and I guess I worry about him developing it. He has "dizzy" spells sometimes and has passed out giving blood before...is always thirsty and drinks a lot...talks about knots in his back and shoulders...feels fatigued a lot...and the list goes on. Not that I don't care to help other people who suffer from it too, don't get me wrong, but for those of us with children, do you especially feel like you would do absolutely anything it took to prevent them from having to suffer the same thing? I know I do.

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Interesting that increased cortisol helps some people. There is so little understood I think about what is a "normal" range cortisol production. I had a few tests that I think suggested my cortisol levels were HIGH, during the time I was most sick with POTS. But, what my endo told me was that when you are sick or injured, your body naturally makes more cortisol than normal. I would imagine though that if someone is experiencing even mild adrenal failure, that s/he would have all kinds of miserable symptoms.

Regarding the hair loss mentioned--I noticed that the hair on my arms and legs became sparse during the time I was sickest. It has come back to some degree now.

Katherine

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I keep wondering why my POTS is so mild compared to others here.

I take cortisol for Addison's Disease and I feel almost normal most of the time.

I wonder if the adrenal system or cortisol has a major role in POTS?

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Now this new young endocrinologist was very honest and said that he didn't know if the POTS patients he helped were low on adrenal hormone FIRST, and consequently, developed POTS, or developed POTS FIRST then, consequently, became low on adrenal hormone. At least he's willing to say, "We don't know."

Anyway, the easy test he did in his office was called the "Cosyntropin Stimulation Test". He said it is easy but not as accurate in seeing "failed adrenals". The test consists of having blood drawn. Then he injected me with synthetic ACTH (adreno-cortico-tropin hormone which stimulates the adrenals and is normally given out by the pituitary), then he drew some blood again. Normal adrenals will respond to the ACTH. If this test comes out totally normal, I don't know what, if anything more, he would do. If the test comes out equivocal (not sure of the response), then he will do a more accurate challenge to the adrenals consisting of an "Insulin Tolerance Test". I'll know this Wednesday or Thursday when I call in.

Earth Mother, I had to tell Social Security (my prior place of employment) that I was NOT able to return to work. I have too much fatigue, and lack of stamina at this point and I know it would be impossible for me to be employed and it wouldn't even be fair to them.

For everyone else, there's no question in my mind that adrenals are affected, either BEFORE the POTS diagnosis, or after. It seems totally logical to me that when you FEEL exhausted, it's because you ARE exhausted. What you see is what you get.

Timbo, the two patients he helped said they are not 100 percent better, but are very much better than they used to be. They are now functioning, contributing members of society. Maybe, your supplementation with adrenal hormone and your response is a key to all this. Maybe POTS is a separate entity, but our adrenals BECOME exhausted. I'm saying this because your supplementation did NOT take away POTS. It seems you had the Addison's FIRST, right? And were given cortisol, and then you developed POTS anyway? Did the POTS come first or later?

Anyway, we're all still learning. I'm grateful for any doctors interested enough to research all this.

I'll let y'all know.

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My renin was high as well. They put me on the florinef and it or nature took care of it.

I had Addison's First and my POTS doctor did not adjust my cortisol at all.

I was told 30mg per day is all you would ever need, but remember my body is producing none at all.

Edited by Timbo
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Hmm this is interesting and I have a comment to add.

When I had an episode of persistent tachycardia and all the symptoms of POTS about 3-4 years ago after taking a small dose of prednisone, I went to see a cardiologist who did that cortisol challenge test (I believe is the same test futurehope is talking about below). He is a cardiologist but practices some alternative medicine evidently because he felt that yeast might be playing a role because I had been on antibiotics for sinus infection when I had the allergic reaction to antibiotic which required the prednisone and had persistent diarrhea with the tachycardia so he gave me Diflucan and these mega vitamins to take. I took this stuff as much as I could for a couple weeks and then started having really bad GI distress so I couldn't finish the course he had prescribed and after having to reschedule my appt. with this guy a couple times because of my work schedule, his office refused to take me as a patient (horrible story recanted somewhere here on the board)...but anyway. My point of all of this is this...I still don't know the results of that test (duh...guess I should call and find out huh? I think he at least owes me that much) but also when I was sick last year when this all started again from taking calcium of all things and I had persistent tachycardia, diarrhea, excessive thirst, urination, etc., after waiting weeks to go see this jerk cardiologist I'm talking about above (for the apointment where he told me he wouldn't take me as a patient because I rescheduled in the past and then please pay on your way out...no help nightmare)....I went home and decided to give his prior treatment regimen a try since I had some Diflucan at home. When I took the Diflucan, I actually got worse with just one dose and the thirst and urination that had seemed to settle down started back up full force. The only thing I could find out about Diflucan on the internet that may be significant was that it causes a slight increase in ACTH which shouldn't affect anybody really but evidently my body reacted to it quite strongly. When I had that thirst and urination thing it seemed to line up with inappropriate diuretic hormone release or a diabetes insipidus-type of syndrome or something but needless to say nothing ever showed in any of the blood work I had done at my 10 ER visits or during my hospitalization last summer but then again I don't remember if they looked at those things. I know they did CTs of my kidneys with contrast (twice) and did 24-hour urines looking for different levels of things because my electrolytes were out of balance but as far as adrenal hormones I just don't know. I do know that my renin was high also and to this day wonder what significance that has but have no doctor to ask. On the blood work panel where it shows the normal levels, etc., there was an explanation that low renin causes high blood pressure so I've strongly wondered if it doesn't follow that high renin would then cause low blood pressure. Hello, what is renin and how do you fix it then? :lol: That might be a simple solution to what seems so complex?

I just thought it was interesting that's all. I too believe the kidney hormones (in connection with the HPA axis as I stated before) is a definite link to my body dysregulation and symptoms but that is my uneducated best guess from my excursions (sp?) on the internet trying to find information that could help explain the bizarre thing(s) that happened to me which resulted in this dx of POTS.

Any info. others have about renin, etc., would be greatly appreciated and interesting to me. I was so shocked to see that others had said they had high renin levels too!

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Jackie, I once went to a "doctor" (the out-of-network kind that doesn't deal with insurance companies and takes a lot of your money) who believed in the whole "overgrowth of yeast in your gut" thing. Of course, he said I had that. I had been on a lot of antibiotics thoughout my life. Anyway, his treatment, if I remember correctly (it was 1996), consisted of vitamins and Nystatin, an antifungal. Nystatin, I was told, could make me nauseated. Well, I did become nauseated, and pushed though taking it for a few weeks. I must say, my stomach has never been the same since. I started with the nausea then, proceeded to horrible gastritis, and chronic problems that I have to this day. I don't think my GI tract has ever been the same. My advice is BE CAREFUL with these docs that think they've come up with the solution to everyone's problems. The vitamins along with the Nystatin really irritated the lining of my stomach. He also had me taking L. Acidophilus and fructo-oligo-saccharide (FOS) a sugar that helps the L. acidophilus grow. That landed me in the ER and I had to take antibiotcs to get over the mess that caused. Yikes!

On a different subject, tomorrow I'm going to call my endocrinologist and ask how I did on the ACTH challenge and also, if I can squeeze in a question on the phone, ask him about renin and what tests can be done for it? I'll let you know. I suspect my test will be normal, but we'll see.

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HI everyone! Long time no post!

Anyway.... when my cortisol was tested it was "mildly low" not enough to classify me with Addisons which is why I had it tested to begin with ( the two illnesses evidently carry some similar symptoms- imagine that something with similar symptoms :lol: ) but nothing was ever said about adjusting it or it being a link in this wierd chain of events!

good luck with your research I hope it helps

I share the opinion of the former post about doing anything to prevent my kids (or any one else for that matter)from suffering through this because I too see small indications in them ....I hope I'm just being "over sensitive"( no pun intended.. o.k maybe a little :lol: ) and looking for things that could be "normal" adjustments for their developement.

Be Well!

Deanna

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Futurehope - It sounds like you had a horrible experience with that doctor for sure! Although I do believe that yeast can cause problems and that possibly some people have gotten some kind of systemic problem with it, I do believe it was reaching...a guess in the dark to try to help I mean on the part of the cardiologist I went to anyway. This guy you went to really had your stomach a mess! Believe me I'm not one to venture into the alternative medicine thing too much anymore for reasons listed below...heck I'm scared enough of conventional medications!

For me, I'm not sure it was the Diflucan antifungal tablets that made my stomach hurt so much...I think I attributed it to the horse vitamins but who knows...it probably was a combination. Looking back he also sent me to the health food store to buy some kind of stuff I don't even remember the name of for my chronic sinus problems (saying I wouldn't need so many antibiotics for sinus infections, etc.) but that caused some kind of rash too. I don't know about others here but I've NEVER had any luck with things from a health food store. The calcium and magnesium liquid I took last year that threw me into all my problems came from a health food store and I was told by a couple doctors not to take things from places like that because they are not regulated by the FDA and you don't know what in the heck you are getting.

As for asking your doctor about the Renin, that would be great! Also, though looking for an update to see how your tests came out!

P.S. I was reading an article last night after this stuff got me to thinking...I'll have to find it and post it because I believe it said that the cortisol challenge test (I think the one you had) shows if your adrenals aren't reacting at all (?) but there are still other tests....maybe for some of us, they work, but they aren't working always adequately or something? I'll have to look for the article because I can't remember everything it said.

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Just some other interesting information I found:

Renin activity is elevated in primary adrenal insufficiency because a lack of aldosterone causes increased renal sodium losses. This lowers blood sodium levels and decreases the amount of fluid in the blood (which lowers blood volume and pressure), which in turn stimulates renin production.

Disorder- Aldosterone/ Cortisol/ Renin

Primary hyperaldosteronism

(Conn?s syndrome)- High/ Normal/ Low

Secondary hyperaldosteronism- High/ Normal/ High

Cushing?s syndrome- Low-normal/ High/ Low

Adrenal insufficiency (Addison's disease)-Low/ Low/ High

Pituitary disease- Normal/ Low/ Normal

(When I type this information, it is spread out and looks like a graph, but when it posts, it is all scrunched together....the thing to see is that they are measuring

1. Aldosterone

2. Cortisol

3. Renin

and levels of each characterize each disorder) - so when it says high normal low, that means high aldosterone normal cortisol, and low renin...the range is always in the order of aldosterone, cortisol, renin...hope that helps...I can't get it to look right!)

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Jackie, That was great of you to write all the stuff in a post. Boy, I wish I had this with me when I went to the endocrinologist. Then I would have asked him specifically to check the renin, aldosterone as well as the cortisol, since it seems that the levels TOGETHER mean something. I wonder how many POTS people on this forum have had this stuff checked out? It sure sounds like some people would fall into the category of having low blood volume with a cause that CAN be remedied.

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Futurehope - no problem and I agree. If I ever get to see Dr. Grubb again (they cancelled my appointment after 6 months of waiting) or am successful at finding another doctor (my PCP is worthless) I plan to explore it further too. Did you get your results on the cortisol thing?

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Unfortunately, no. Apparently the secretary said she gave the results to the endocrinologist's nurse, but she never called me even though I called early in the AM. Well, I'll let you know. Maybe she needs to confer with the doctor before speaking to me. Maybe this, maybe that... Why can't they just do what they say when they said they would do it? Forget it. I just don't think this is a very high priority with them - getting back to patients. After all, they have their money already from my visit... Can you tell I'm cynical?

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Just thought I'd let you know, the test I took which challenges the adrenals is used to diagnose Addison's disease. My test was normal. I will have the results sent to me as I do not know anything about the test and the resulting values. I will also consult with my doctor on the phone to see what, if anything else, I can test for to rule out possible causes of POTS.

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Futurehope - thanks for the update! Well, it is good news really but I realize also you might be a little disappointed hoping that would be a key to some of your problems (if you are anything like me?! as in even bad news is good news if it leads you to an answer that can help) . Reading the articles I've read, the kidneys (adrenal glands anyway) play a role in something like 50 different hormones. I personally think there is a link with this system...maybe medicine just isn't advanced enough to discover the complexity of it all (i.e. our bodies have so many chemicals and hormones and this makes that which in turns converts this to that, etc....) Someday....! It was worth checking though and following up on I think.

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Here's an update. This endocrinologist was nice enough to give me his number to be paged on a weekend , which is now, and I got to call him back. He really IS working with me and is being very helpful. I, in turn, can thank all of you on this forum for giving me enough information so I can ASK for certain tests.

Anyway, my ACTH challenge was normal, BUT, he has seen other POTS patients come out normal on this test, but show a cortisol deficiency on the INSULIN CHALLENGE test. In the other patients, once the doctor saw the test results from the insulin test, THEN he prescribed cortisol replacement and they are doing well. He left it up to me whether I wanted to pursue the "next" test or not since he does not consider me one of the "sicker" POTS patients. I said, "yes", I want the insulin challenge test. I also asked if he could check my renin and aldosterone levels (thank you for your ideas) since I always feel "low" on volume and these hormones affect blood volume, and he will send me the lab slips to do that bloodwork.

I will be getting the insulin challenge test with another doctor that he will refer me to at the University of Maryland Hospital. They are more familiar than he is and have the staff to help out.

My conclusion: Know as much as you can before you go into see a doctor. Have a goal in mind of what you are looking for. Stay on focus and be determined. I've had good doctor response due to the above.

Before I saw him I, (1) composed a write-up of the current status of my condition and problems (over one page long), (2) gave him a write up of my questions, (3) emphasized that I'm in the process of LOOKING for potential causes of my POTS (and, therefore, potential helps), (4) gave him a write-up of my medicines and of course, asked him if he was willing to help me find my cause?

Like I said, I seem to be getting the response I desire. I don't know what will become of all this, but I am pursuing anything I think has potential. Will let you know what happens next. Thanks to all on this forum.

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  • 10 months later...

does anyone know what causes these hormones to get abnormal in the first place? and how much cortef are those of you taking? i want to increase but i notice i get more depressed and emotional,i'm on only 7 mg now, which doesnt really help, i was only diagnosed with adrenal exhaustion or insufficiency,

radha

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