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Cortisol, Aldosterone - Hormone Support -Would It Help?


issie

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This is a conversation between another member and myself - I'm going to call her D - because I'm not sure she wanted me to use her name. But, if she joins into this discussion - you will find a wealth of knowledge from her - even at a young age - she has been through alot. I thought this conversation was so important to share it with other members. I think maybe it will shed some light on some of these subjects. At the very least we can learn from what D and her hubby are going through.

Issie

I'll use I for my conversation and D for hers.

I: I think your EBV virus is a key to your unwellness. I had something similiar to that when I was 10 years old and that is when my problems started to. I think there is a immune system related thing here. I'm going to make an appt. with a doc who can look into this and also to get more definitive answers as to where I stand and what to do. I didn't tolerate meds well for the POTS. I too, am a naturalist and try to use alternative things before Western Med. But, they only help to a point. But, I've really cut my supplements down alot and find that I'm not any worse for not taking alot of them. When I was your age, I too tried everything I read about and hoped it would be the answer. It wasn't - neither were alot of the natural things I tried either.

Another question - did you get sick shortly after either a DPT shot or a polio vaccinne? I think this is what did me in. It's so odd, my sis and a guy friend - all of us got sick after the polio vaccine and we all were in the hospital for weeks and missed 3 months of school. I had someone tell me that we probably got a small case of polio and/or diptheria. I don't know?????

D: I was afraid that your post would make everyone want to jump on the stopthethyroidmadness (STTM) bandwagon. Everything is so very black and white with that website. Everything is either adrenal, thyroid or electrolytes and that is it. They don't talk about how complex our bodies are and don't even touch upon the possibilities of viruses damaging the endocrine system. I guess you'd have to read the forums and yahoo groups associated with that website to understand. Most of them are just pulling data out of their butt, so be very very careful! I have gotten into arguments about where some of their information comes from and no one knows. This is one reason why I like dinet because it is real data here and not made up stuff from some phantom mystery person. lol

Hormone replacement is seriously one of the hardest things to get right. It is such a balancing act and I don't see many people ever find it to be successful. Some people have periods where they are better and then I find they always come back to the forums looking for more help. Why do I think this happens? As you said, we aren't getting to the root causes of the problems which could very likely be immune related!

I've looked at a lot of possibilities(except mitochondrial disorder and immune system related) and it did all start around the time when I got EBV. I'm not sure if I got any vaccines around that time. I called my pediatrician a few months ago and those records have all been destroyed.

I wanted to pass this along. This is a post I made on a hormone website if you are interested in the response I got. The doctor is probably one of the best out there because he's looking at things from many different angles. His answer to me was well...complex.

http://www.definitiv...hread.php?t=608

I: So you were on the right track with the cortisol. But, looks like adding seratonion may be beneficial too. But, it also seems that something to suppress the immune or modulate the immune system response would be the best thing. How do we do that? I know with my body - I feel I'm in a constant state of inflammation. I've started using Ginger and Tumeric daily. I do seem to not hurt as bad. I know my immune system is over active and never take things like Echinachia that stimulates it more.

I wonder, if you could post this or at least put up the site address and get feed back from the forum. We need to look at the auto- immune system closer. I know arizona girl is in the middle of treatment for what they have determined is auto immune and think it's causing her POTS. She's on her 3rd treatment - I think. Although, the thought of that scares me to death. I don't want to use blood or blood products. But, there may be some sort of synthetic suppressors.

You have to realize that people need to be able to look at all angles. That doesn't mean they will do them. But, for some, that may be the right thing to do - for others not so much. It's good you can throw out how that went for you - but, for someone else it may be right. It doesn't hurt to explore possibilities. I'm hoping that people make educated decisions, not decisions based on - well the doctor wants to try this. I sure don't run MY life that way. I tend to not trust doctors and question everything. But, some times - medicine is necessary. I wish I could find alternative things for everything - but sometimes it's just not possible.

D: On paper cortisol sounds like it's this miracle drug, but it is not. Trust me! It does not come without a lot of risks and problems. You have to wear a medical alert bracelet and constantly keep medicine on you at all times "just in case". You should also have an emergency injection kit too. If I were more active, stress dosing would be even more annoying, but since my lifestyle is pretty sedentary I don't have to worry too much. I've had 2 close calls with adrenal crisis and they are not fun. If my husband wasn't around for the first one, I might have died. I didn't have a medic alert bracelet at the time and no one would have known what was going on. I went completely blue, starting mumbling to myself and could not communicate anything whatsoever. It was scary!!

The other reason why I am so against cortisol use is because it gave my husband POTS. He never had this before until he went on HC. Our hormone doctor put him on it since his saliva cortisol results were low. Coming off of the cortisol did not reverse the POTS for him, so now we both have it! Do you see why I really am against cortisol?

If you decide to go down the hydrocortisone route, just make sure you actually need it and don't get lured into the "well your numbers are good but not optimal so give your adrenals rest". Resting the adrenals is not the problem in most people's cases. It is in fact a dysregulation of the HPA axis, which I'm not sure how to resolve.

Good luck to you and yes this is a very hot topic for me. I'm sorry but I feel pretty strongly against the use of cortisol in "adrenal fatigue". I think that whole concept is pretty much false. From what I've heard Dr. M doesn't believe in it either despite what he wrote in that post. He doesn't give HC to anyone unless they have real Addison's disease or only in rare cases.

I: I understand why you feel so strongly about this. You probably are right - espcially if it GAVE your hubby POTS. Why don't you take the last whole part of your comment and post it onto our discussion on the forum. I think it's important that others read it. First do a post of the conversation that you had with the doc. If you can put up the address so others can read it, like you did for me. Then, do another post and copy all of what you just wrote.

I'm not as convinced about cortisol - what I do wonder about is the aldosterone. That's what I think might really help. Since I've had some experience with the cortisol and it didn't help me long term either - I'm with you on that one. I just use it for stress support during surgeries.

D: Oh I found another good link from that same forum. http://www.definitiv...hread.php?t=594 The original poster is someone I recognize from another forum I read. The very first reply is one of the cronies from STTM telling this person that their adrenals need to heal more. The information just gets repeated over and over again.

Dr. M comes in and tells it like it is and his posts are what I wanted you to see. If you aren't sure about cortisol, remember that aldosterone is also made in the same part of the adrenals as cortisol. Low aldosterone without destruction of the adrenal glands is the exact same as low cortisol without destruction of the adrenal glands. Dr. M suggests that the signally is messed up, which is exactly what has been reported in the POTS studies. Hypovolemic POTS patients have both low renin and low aldosterone, which does not make sense since the body should be ramping up renin to get the aldosterone to rise. So the problem is not in the making of aldosterone but in the making of renin. That's where attention should be focused rather than at the end product hormone. Florinef retains sodium, but it doesn't do all of the other things that aldosterone does. They don't even understand how it completely works.

The question I have is why isn't our bodies getting the signals to make renin properly? If you made a post on that forum, Dr. M might even have some advice about why that is happening.

From Dr. M "People have called the suppressed state "adrenal fatigue". But adrenals are not "tired". They are suppressed. In psychiatry, this is called hypothalamic-pituitary-adrenal dysregulation. I'd call it "adrenal dysregulation" for short. It can also be called non-adrenal illness affecting adrenal function."

Dr. M doesn't believe in adrenal fatigue and I think he's on the right track. His solutions are pretty complex and obviously he won't talk about specifics on his forum. I've spent 10's of thousands of dollars on "natural" doctors and they are mostly a waste of time. Either they are too kooky and want to hook you up on energy machines or they think HC is the best thing since sliced bread. I think Dr. M is at least on the right track with his line of thinking. Who knows if he could actually fix a POTSy though. Often times doctors sound great on paper, but you see them in their practice and they are AWFUL.

If you really need HC due to Addison's (destruction of the adrenal glands) then it will probably be the best thing you've ever done for yourself. However if you just have HPA dysregulation (which most people do) then it's just a bandaid on a shot gun wound and shutting down all of those CRH and ACTH pathways will likely result in more problems. That's what happened to my husband and he's never been the same since. I think he's been off of HC for 4-5 months now and his saliva cortisol results are worse than when he first started on HC.

I: Okay, now that article brings home the point.

Cortisol could be helpful if you don't figure out what's causing your stress and address it. But, unless you have a known dysfunction of the adrenals - like Addison's - don't use the bandaid, unless it's just for a short time to figure out what the real problem is. That's what I got from it.

Our bodies could be shutting down our renin and aldosterone "because of inflammation". It could be toxins, bacteria, poor digestion - who knows. It could even be auto-immune issues. (But, on the other hand - what if he's wrong about the aldesterone being inflamatory - and all the other majority are right? Or, he could be like me, and question the way things are done - that appear to not be working.) I know I read one article showing how beneficial aldesterone has been to help people who are losing their hearing. But, I know I don't want more inflammation in my body. That is already an issue for me. If aldesterone causes more inflammation - I don't want that. According to him, it just helps us to control the salt balance. But, what I read - it not only controls salt balance, but fluid balance. This is an issue with us - we need more fluid volume - hydration.

I'm convinced about the cortisol. I'm sure that we don't need to mess around with hormones unless we really know a whole lot more about them and really have a known need for them. I think you could really imbalance something else - if you don't know what you're doing and could really make more problems for yourself. You succeeded in getting me to see this. But, why the dysfunction of the hormonal systems? If we don't put the bandaid on and address the lack of hormones - what do we do?

This doctor being also a psychiatrist - feels the mind and environment plays a key to the issues. We all have stresses in our lives - could it be that a certain personality type - has a weaker constitution and doesn't have the skills to deal with stresses and this activates the autonomic system and makes it go wacky and then all the dominoes start to fall? I know we all resist this type of thinking and get really mad if someone suggest that it's in our head. It could be, somewhat in our head, in that we have a hard time dealing with stress and then everything snowballs. (You don't have to answer these questions - I'm just thinking out loud.) I've had issues and virus and wonder if there is an immune component myself. So, I fall under this line of questioning too.

I keep adding to the messeage - more thinking, more questions. The last guy that commented - said his childhood past had been traumatic, but he felt like he had worked through all of it. But, yet he still had dysfunction. He felt like salt and HC had helped him. That it was a physical issue. He wondered if aldesterone was an issue and had tried florneff. It had made him feel horrible. There again, it makes me wonder if salt isn't causing issues rather than helping them. We probably don't need to retain more salt (which is what florneff does). We need to increase our volumes which salt helps to accomplish - that's where the aldesterone comes into play. It's supposed to help REGULATE the balance between salt and water(fluids). I'm still back to my original thinking on the aldesterone. What did it do for/to you? Were you also using the florneff and high salt loading when you used the aldesterone?

D: But, why the dysfunction of the hormonal systems? If we don't put the bandaid on and address the lack of hormones - what do we do? "

I really don't know why. haha Nearly all treatments used for POTS are simply bandaids, which aren't that helpful for most people any way. We only treat symptoms, but hormone problems is just 1 layer beneath that. I think we need to continue looking even deeper like Dr. M says. The problem with starting hormones and taking them only for a "short" while is that coming off of them is going to be hellish for several reasons. If you are on them long enough to suppress your bodies signally hormones even further, then it's going to take time for your body to restart. Some people's HPA axis is so sensitive that it never recovers.

"Why do you think you and your hubby were deficient in these and why did you supplement?" "Was it environmental issues or was it genetic, an injury or a virus?"

Once again I have no idea. haha I was tested for adrenal antibodies which were negative, but it's not uncommon for them to be negative after many years of being undiagnosed. I wish I had a stim test done, but it's too late now as I would certainly fail a stim test since my adrenals are suppressed from the medication. Addison's runs in my husband's family. His grandfather was on HC for his entire life and had other serious medical problems along with it. I think mine is a combination of environmental toxins (mercury from amalgam fillings) and viruses. My brother is now showing signs of POTS too and he just turned 20. All of this is just me guessing since nothing else has seemed to pan out. My husband got sick after going on HC, so I'm not exactly sure why he got ill. He was always underweight but never had the fatigue and orthostatic issues he has now. We know this for a fact because we used to compare sitting and standing BP's and HR's all the time. He was always amazed by how mine differed so much.

The bio-identical aldosterone didn't really do anything. It might as well have been a sugar pill. Sorry I don't have better news for you than that. I was taking 2-4 capsules a day which was not sustainable. Taking 4 a day would be about $400 a month and it is not covered by insurance. Thank God we were doing well financially back then so we could try all of this weird stuff. Now we are dirt poor so I'm not in a position to experiment with these out of the box treatments any more. I was not taking florinef and I did not supplement with salt either. The only time I've done the high salt loading was when I first started down this journey more than a year ago. The adrenal yahoo group insisted that this is what I needed to do to feel better and all it did was make me gain 10 lbs in fluid weight. I felt terrible, so I never went to back to that. Now I just salt my food as needed and that works for me. If I know I'll be outside, then I'll take a thermotab or 2 because a normal person would lose salt too.

We have to remember that the body is simply amazing. It has protective mechanisms in place when things go wrong. For example in hyperparathyroidism the body stops absorbing vitamin D to keep the body from absorbing calcium since levels are already too high. This shows up as a deficiency in Vitamin D and supplementing it would be destructive and or even fatal in some cases. Maybe these hormone deficiencies are a protective mechanism and if we start to supplement we are disrupting those mechanisms. I often times wonder if that's what happened to my husband.

I'll keep you updated with how coming off the hydrocortisone goes too. So far it's kind of mixed.

I: Using the aldestrone in a pill form, means it had to be broken down before it would go into your blood stream. If your liver doesn't process hormones correctly (mine doesn't), then basically - it wouldn't do any good. That's why a transdermal form of hormones is better. It doesn't have to go through the liver before your body uptakes it. I learned this the hard way. When I had my complete hysterectomy - I tried the pill hormones - when they let me go on them 5 months later - and it was horrible. It didn't work. Not until I went on the more natural transdermal hormones, did it make any difference.

I do believe that your thought process of possibly our bodies causing deficiences in certain areas as a protection, could be correct. It's hard to know if that's the case or if there is just a malfunction in the hormones. As for Vit. D, I was very deficient. And taking it has helped me a whole lot. I seldom get in the sun and I'm sure I was deficient in it. I think what my doc said about having produced so much cortisol for so long under stressful conditions - basically fatigued my adrenals to the point of them not working properly anymore. That's in my case. My body appears to be in a high cortisol state - but my levels show otherwise. But, like you, I didn't find it to be all that helpful. If anything, in a long term trial - I was worse. Tried this twice.

I think it takes an open comuntication and exploration to get this figured out. More people should do it and participate and maybe with brainstorming - we could figure SOMETHING out. What we are doing at present - isn't working.

--------------------------------OKAY, that's the conversation - so far. Anyone like to add to it?????????-----------------------------These conversations were generated because of my post "Out of the Box Thinking and Aldesterone and Renin".

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I'll throw my two cents in here. I have been to the STTM and the Yahoo group that discusses "adrenal fatigue". Scary!

I DON'T believe that people should be "trying" cortisol for "adrenal fatigue" like they push. Cortisol is a very potent hormone, with life-threatening problems if not handled in the right way in the right doses. I have had saliva checked many times over the last 10 years, and every time they were low in the am, and then sometimes at other times. Almost all of my serum cortisols over the last 4 years have been very normal or on the high-normal range. My stim test tripled.

I am like y'all, that something in the axis is off. I don't think cortisol is the answer, but I do suspect aldosterone is a big issue. And I am like y'all--I want to know WHY!! If it is renin--I want to know WHY!! I think if we could go deeper and see what possible core issues are going on, we may get a big piece of the puzzle.

I think D's husband needs to now have a stim test, as taking the cortisol and then stopping may have caused the adrenals to shut down. It wouldn't hurt to know if they react okay.

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Another question - did you get sick shortly after either a DPT shot or a polio vaccinne? I think this is what did me in. It's so odd, my sis and a guy friend - all of us got sick after the polio vaccine

Issy-

I got very sick after the polio vaccine. I remember the hospital had to have the army fly in medication for me. I have never really had a satisfactory explanation for what happened - I never had a reaction to any other vaccines.

noreen

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Another question - did you get sick shortly after either a DPT shot or a polio vaccinne? I think this is what did me in. It's so odd, my sis and a guy friend - all of us got sick after the polio vaccine

Issy-

I got very sick after the polio vaccine. I remember the hospital had to have the army fly in medication for me. I have never really had a satisfactory explanation for what happened - I never had a reaction to any other vaccines.

noreen

Noreen,

Were you sick for a long time and have never really been well since? We were all put in the hospital with swollen glands and running a continuous fever, so tired we couldn't move and our body hurt all over. We could barely lift our heads up. The guy that got sick is not our blood kin - and he has issues similar to mine and my sis. We saw the same doctor and got the polio and DPT shot from him all about the same time. My sis has real bad orthostatic intolerance and me with POTS - I don't think our friend has been to really try to figure out what is wrong - but he still drags through life. I just feel like there is some sort of connection here. But, then again alot of genetic things run in my family too - like neuropathies and miagraines etc. They thought we all had mono, but the test was negative. IT'S A MYSTERY!

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Noreen,

Were you sick for a long time and have never really been well since? We were all put in the hospital with swollen glands and running a continuous fever, so tired we couldn't move and our body hurt all over. We could barely lift our heads up. The guy that got sick is not our blood kin - and he has issues similar to mine and my sis. We saw the same doctor and got the polio and DPT shot from him all about the same time. My sis has real bad orthostatic intolerance and me with POTS - I don't think our friend has been to really try to figure out what is wrong - but he still drags through life. I just feel like there is some sort of connection here. But, then again alot of genetic things run in my family too - like neuropathies and miagraines etc. They thought we all had mono, but the test was negative. IT'S A MYSTERY!

Issy-

Brain fog strikes again. It was the smallpox vaccine that I had the worst reaction to and the Army/Air Force had to fly in something. It was treated as rather secret and at that time you didn't question your government.

Could be a common denominator with vaccines and somehow what they used at the time affected those of us with EDS as the protein was metabolized differently.

So I agree it is a mystery.

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My son, Mack, appeared to have contracted measles after the MMR vaccine. I spoke to another Mom, whose daughter also had a similar DX to Mack's. Coincidentally, her daughter also became ill following the MMR vaccine.

I think you are onto something regarding immunity and dysautonomia. My immune system is severely compromised. I have more blood work later today- looking into this.

Keep thinking out-of-the-box, folks! Good stuff.

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What have you read to become knowledgeable on hormone issues? I have a textbook "Greenspan's Guide to Clinical Endocrinology" and it doesn't tell me much at all about the HPA axis. I don't even understand why it's an axis.

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What have you read to become knowledgeable on hormone issues? I have a textbook "Greenspan's Guide to Clinical Endocrinology" and it doesn't tell me much at all about the HPA axis. I don't even understand why it's an axis.

As I haven't done that much research on cortisol recently. D - really needs to answer this one. But, if you Google HPA axis. You will get some sites that you can look at. Alot of information can be found in regard to adrenal function.

If you're interested in hormones for menopause - I've read alot of good books I can recommend. As for the Aldosterone and Renin - lots of information available from various sources - I tried to list the places that I found that information.

Axis just refers to the function between organs and how they interplay in the function of the body.

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If vaccines caused my autonomic dysfunction, it must have happened when I was too young to remember it. I have wondered about getting the flu vaccine or traveling to other countries because of the following two abstracts. These are the two most relevant studies on how the immune system response plays with the CNS:

Does an acute inflammatory response temporarily attenuate parasympathetic reactivation?

Jae SY, Heffernan KS, Park SH, Jung SH, Yoon ES, Kim EJ, Ahn ES, Fernhall B.

Clin Auton Res. 2010 Aug;20(4):229-33. Epub 2010 May 1.

Department of Sports Informatics, The Health and Integrative Physiology Laboratory, University of Seoul, 90 Jeonnong-dong, Dongdaemun-gu, Seoul, 130-743, South Korea. syjae@uos.ac.kr

Abstract

PURPOSE: Although observational studies suggest that inflammatory markers are associated with autonomic nervous system function, the causal relationship of this is not clear. We tested the hypothesis that acute inflammation will temporarily attenuate vagal reactivation as measured by heart rate recovery after exercise.

METHODS: In this double-blind randomized study, 24 healthy subjects were assigned to receive either an influenza vaccine (n = 15) as a model to generate a systemic inflammatory response or a sham vaccine (n = 9). Heart rate recovery after exercise testing was used as an index of parasympathetic nervous function and was calculated as the difference between maximal heart rate during the test and heart rate 1 and 2 min after cessation of exercise. Both blood analysis and treadmill exercise stress tests were conducted before and 48 h after each vaccination.

RESULTS: Inflammatory marker, log C-reactive protein (1.9 +/- 1.2 to 2.8 +/- 1.4, p < 0.05) was significantly increased after the influenza vaccine. Heart rate recovery 1 was significantly attenuated 48 h after the influenza vaccination (23.4 +/- 6.4 to 20.5 +/- 4.9, p < 0.05) but not sham vaccination.

CONCLUSIONS: These findings show that acute inflammation is associated with a temporary deterioration in cardiac autonomic nervous system function in healthy subjects. *I wonder what it is doing to US? (since we wouldn't be considered "healthy subjects.)

PMID: 20437076

Postural tachycardia syndrome after vaccination with Gardasil.

Blitshteyn S.

P Eur J Neurol. 2010 Jul;17(7):e52. Epub 2010 Apr 9.

MID: 20402758

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I dont know if I ever had bad reactions to vaccines, but I know that I did have a bad reaction to a blood transfusion. I know the person had yellow fever at some point, and they think that I had contracted a minor case of it from the antibodies in their blood. For several years after that I would get mono every year, like clockwork. Nobody else I knew would have mono, just me, so I don't think that I just happened to catch it every year from an unknown source. It always hit me in July, so that it would ruin my summers. There is a good possibility that this has an immune component.

I believe the renin issue affects those with the hyper POTs. It's really quite strange, bc norepinephrine should stimulate renin release. The juxtaglomerular apparatus secrets renin in response to: Beta 1 adrenergic stimulation

Decrease in renal perfusion pressure

Decrease in NaCl absorption in the Macula Densa

Well, I found this article, but it's from 2004 Controlling the release and production of renin

P. B. Persson, A. Skalweit, B. J. Thiele

The major stimulus for the release of renin from the vesicles in juxtaglomerular cells is determined by stretch, as induced by changes in arterial pressure. The production of renin underlies a vastly complex control network, which takes place at different levels, such as transcription and translation. With regard to transcription, important regions for binding transcription factors have been identified several years ago, but the conservation of nucleotide sequences throughout different species suggests that there might be additional binding regions of importance. At the post-transcriptional level, the modulation of renin mRNA stability is seems pivotal. The half-life of renin mRNA appears to be controlled by the interaction between several regulatory proteins, most of which are well known in other systems. Moreover, in addition to the modulation of mRNA stability, the translation efficiency seems to play a key role in determining the amount of renin to be produced.

I can't find anything newer than that on renin. Maybe, we aren't having a problem with releasing renin, but maybe there is something wrong with our bodies ability to actually make renin. Or, maybe our beta receptor in our kidneys arent functioning properly or we just dont have them. If renin controls aldosterone, which in turn controls NaCl and fluid volume, that would explain our problems with hypovolemia, blood pressure and pulse rates. It's just a waterfall effect. Our bodies are dumping norepinephrine to get our kidneys to respond properly. It would be interesting to see which one is causing our problem. Is it a lack of beta receptors or are our bodies lacking something in the prodction stages of building renin. It could be that all of our nervous system problems are caused by the huge amts of norepinephrine, and in reality we are really having problems caused by our kidneys. If it's a lack of beta receptors i wonder if a transplant of a normal kidney would resolve the issues.

Here is an article about imaging renin synthesis http://www.sage-hindawi.com/journals/ijht/2010/298747.html maybe one day they will be able to apply this to humans. It's interesting that renin is still such a mystery.

There are just so many possibilities to what is causing POTs. I do know that I don't do well on antibiotics of any kind, so I don't think that mine is cased by an underlying infection. I am just hoping for the big aha. I do know that though I can control a lot of my symptoms, it isnt making me any better. It makes life more manageable, but I'm not getting better.

PS. Sorry but this is too long for me to spell check, so forgive all of the typos and rambling. :)

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As far as vaccinations in MY life, I don't think they had any affect. And I am the poster child for vaccinations! My dad was in the Air Force, and we moved many times from the US to Europe and Asia(I was born in Japan). I still have my shot booklet, and we sometimes are amazed at the types of atypical vaccines we had to get. I lived a healthy, normal life up until POTS hit me at 46 years old.

I am really getting into the aldosterone/renin issues. But like nmorgan said, if it's renin, our kidneys are not responding correctly somehow.

This kind of thinking is so much more productive than doctors just deciding we have a smaller heart than normal! That study is flawed in the fact that you have to look at someone's heart immediately after they start with symptoms, and I know that they will find a regular sized heart. The heart may shrink with time and inactivity as our POTS stays with us, but I don't think it is the cause.

I hope researchers are thinking through some more viable reasons, like some of the things we discuss here!

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The half-life of renin mRNA appears to be controlled by the interaction between several regulatory proteins, most of which are well known in other systems.

I'm having a brain fog day - but for some reason this statement stands out. What proteins? Could there be a deficiency in them or a gene defect that we have with a certain protein? Could it be a digestion issue with a break down of certain proteins? I know protein can affect kidney function. When a person has failing kidneys they have to cut their protein down to nearly none.

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I didn't mean to suggest that the MMR vaccine CAUSED Mack's dysautonomia. That didn't show up until 9-10 years later. I wanted to suggest that whatever mechanism caused Mack to get the measles after the MMR vaccination may be playing a part in his illness now- especially since we have found others who had a similar experience. Maybe something is missing in his immune system, antibody response, etc.

I found Jennifer's article re. how healthy patients who received the flu shot reacted VERY interesting. I agree- I'm sure we have an even more acute response. That would be an interesting study. At the very least, I will wait 2-3 days after a vaccination before I exercise.

Very interesting topic!

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In the '78 study they used phentolamine with high amounts of norepinephrine to restart the renin production in the kidneys. If it's the high level of norepinephrine that is casing our renin prodction to fall, couldn't phentolamine be used to correct our renin prodction problem. The study also went into sodium deficient and effects of norepinephrine on renin production and sodium replete and norepinephrine effects on renin production. I'm thinking maybe we should be cutting down our salt intake from looking at this study. I have been salt loading since I was a teenager, and maybe this is why I have gotten so bad.

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I found another interesting article http://www.ncbi.nlm.nih.gov/pubmed/16007255

The renin-angiotensin-aldosterone system controls blood pressure and salt-volume homeostasis. Renin, which is the first enzymatic step of the cascade, is critically regulated at the transcriptional level. In the present study, we investigated the role of liver X receptor alpha (LXR(alpha)) and LXR(beta) in the regulation of renin. In vitro, both LXRs could bind to a noncanonical responsive element in the renin promoter and regulated renin transcription. While LXR(alpha) functioned as a cAMP-activated factor, LXR(beta) was inversely affected by cAMP. In vivo, LXRs colocalized in juxtaglomerular cells, in which LXR(alpha) was specifically enriched, and interacted with the renin promoter. In mouse models, renin-angiotensin activation was associated with increased binding of LXR(alpha) to the responsive element. Moreover, acute administration of LXR agonists was followed by upregulation of renin transcription. In LXR(alpha) mice, the elevation of renin triggered by adrenergic stimulation was abolished. Untreated LXR(beta) mice exhibited reduced kidney renin mRNA levels compared with controls. LXR(alpha)LXR(beta) mice showed a combined phenotype of lower basal renin and blunted adrenergic response. In conclusion, we show herein that LXR(alpha) and LXR(beta) regulate renin expression in vivo by directly interacting with the renin promoter and that the cAMP/LXR(alpha) signaling pathway is required for the adrenergic control of the renin-angiotensin system.

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In the '78 study they used phentolamine with high amounts of norepinephrine to restart the renin production in the kidneys. If it's the high level of norepinephrine that is casing our renin prodction to fall, couldn't phentolamine be used to correct our renin prodction problem. The study also went into sodium deficient and effects of norepinephrine on renin production and sodium replete and norepinephrine effects on renin production. I'm thinking maybe we should be cutting down our salt intake from looking at this study. I have been salt loading since I was a teenager, and maybe this is why I have gotten so bad.

That was the thinking I have - if you haven't read "Out of the Box Thinking" - that's where I was going with the original thought. I think the salt may absolutely be the wrong thing. It will cause aldesterone to be non existant. It ups the fluid volume, but aldesterone is what is supposed to regulate the salt and fluid. I think if we replaced with aldesterone - that may be a better alternative than lowering it even more with salt. BUT, one of the links that D had me read said that aldesterone can be inflamatory. Salt is anti-inflamatory. Maybe the balance between the two makes a neutral????? But, if we did replace the hormone - it would need to be in a transdermal form. Because we want it uptaken and if it goes through the liver, there is a chance it won't get into the blood stream - because of faulty liver function. (If you haven't read that post - there's alot of info in there. Also, the follow up one is "Aldestrone and renin".

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That was the thinking I have - if you haven't read "Out of the Box Thinking" - that's where I was going with the original thought. I think the salt may absolutely be the wrong thing. It will cause aldesterone to be non existant. It ups the fluid volume, but aldesterone is what is supposed to regulate the salt and fluid. I think if we replaced with aldesterone - that may be a better alternative than lowering it even more with salt. BUT, one of the links that D had me read said that aldesterone can be inflamatory. Salt is anti-inflamatory. Maybe the balance between the two makes a neutral????? But, if we did replace the hormone - it would need to be in a transdermal form. Because we want it uptaken and if it goes through the liver, there is a chance it won't get into the blood stream - because of faulty liver function. (If you haven't read that post - there's alot of info in there. Also, the follow up one is "Aldestrone and renin".

Actually issie it seems from the study above that the liver X receptors are also affected by an adrenergic state. If you look up the function of the liver X receptors they control a lot of body functions including renin production and glucose metabolism. I feel like I'm in that age old question, which came first the chicken or the egg. If norepinephrine is causing the cascade of problems then I would think that phentolamine would correct that problem. In the 78 study they used phentolamine with high levels of norepinephrine and it started the renin production. I am on clonidine and from my knowledge it is suppose to supress norepinephrine levels. So I should be better, but I'm not. Maybe my norepinephrine levels aren't normal or even close to normal. The only other way to stimulate renin release would be to lower sodium. Even if there is a problem with our beta receptors in the kidneys lowering the sodium shold still stimulate renin production. The only other problem would be if we are missing something involved in production of renin. I'll be looking into that a little further.

I also found an article that states the mast cells in the heart have been found to create renin.

I still think that it might be worth trying a low sodium diet just to see what happens.

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Not suggesting to try it (since it is a key electrolyte especially for heart rhythm and must be treated with great caution), but when potassium goes high it is supposed to trigger aldosterone. The aldosterone steers the kidney to dump the potassium... and indirectly to retain salt (with which comes extra water). Aldosterone is like a "rudder" between K and Na/H20... while ADH/Vasopressin is like a "throttle" directly to water retention.

To use this theory, one would want both Na & K present so that the salt is there to do it's water retention magic. Of course, this *assumes* a standard working renin response to K and focuses on just one of the influences on renin stimulation (albeit a key one).

I've had low potassium (from fludrocortisone & running out of K supplements) and the ER was surprised I didn't induce serious heart trouble (I was lucky). One needs to be wary of either high or low (especially if already prone to arrhythmia)... it is really critical to heart function. Sodium variations seem less critical in short term stuff, and I think the body treats it as such.

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The phenylalanine might work for those who do not have high norepinephrine, but for us that do I think it might be horrible. I looked at a couple of sites about phenylalanine - it is the precursor for tyrosine, the monoamine signaling molecules dopamine, nor epinephrine and epinephrine. The L-phenylalanine converts into L-tyrosine which converts into L-DOPA, which converts into dopamine, nor epinephrine and epinephrine. It can cross the blood brain barrier and interferes with the production of serotonin.

If like one study you have too much serotonin - this may help. I know that tyrosine also affects the thyroid (increases activity).

DL-Phenylalanine is a mixture of the regular phenylalanine and the L-phenylalanine. It is used allot of the time for depression. The article said that has a precursor role of L-phenylalanine in the synthesis of the neurotransmitters nor epinephrine and dopamine. It is thought that elevated levels of nor epinephrine and dopamine are thought to have antidepressant effects.

So, to me, it appears that it could increase the norepinephrine levels. Those without hyper may be low in those.

You need to be sure that you don't lack the enzyme to metabolize this amino. There are some people who cannot take this supplement.

One article said that phenylalanine can become a neurotoxin and excite the neurons in the brain to the point of cellar death. (I've heard of this, in people who use allot of aspartame. Aspartame (Equal) is high in phenylalanine. I know someone who thought they had Alzheimer's and it was the sweetener that caused it.) One of the sites I looked at had a whole bunch of comments about having taken this or used it in soft drinks, chewing gum etc. All the reports were VERY NEGATIVE. Some people report having panic attacks, heart burn and itching, stomach cramps etc.....(THIS IS THE RESULTS OF ASPARTAME - ASPARTAME IS NOT THE AMINO BUT IS MADE FROM THE AMINO AND IS HIGH IN THE AMINO)

I do know that some people use it for pain and migraines and it is beneficial for that. I've read allot of the natural doctors recommending it for pain. I also know that it can increase you BP. Some of us already have issues with our BP's being too high and too low.

I think just in the little that I've read about it - it's not something I want to try. It's a good thought - but for many - I think it would make us worse especially if we're hyper POTS.

I just realized you were talking about a drug - not this amino acid. But, since this amino may have a part in the catecholamines and that can affect our POTS - I'm leaving this in. I wonder if there are people using allot of sugar free foods with aspartame in it and that could be affecting our POTS. (I quite using this stuff years ago - so in my case ----it doesn't apply. But, for others who drink allot of sugar-free pop, sugar free gum and even some of the yogurts have this in it.)

I did look up this drug and some of the side effects are tachy and arrhythmias.

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Not suggesting to try it (since it is a key electrolyte especially for heart rhythm and must be treated with great caution), but when potassium goes high it is supposed to trigger aldosterone. The aldosterone steers the kidney to dump the potassium... and indirectly to retain salt (with which comes extra water). Aldosterone is like a "rudder" between K and Na/H20... while ADH/Vasopressin is like a "throttle" directly to water retention.

To use this theory, one would want both Na & K present so that the salt is there to do it's water retention magic. Of course, this *assumes* a standard working renin response to K and focuses on just one of the influences on renin stimulation (albeit a key one).

I've had low potassium (from fludrocortisone & running out of K supplements) and the ER was surprised I didn't induce serious heart trouble (I was lucky). One needs to be wary of either high or low (especially if already prone to arrhythmia)... it is really critical to heart function. Sodium variations seem less critical in short term stuff, and I think the body treats it as such.

So, have you tried just the potassium and vit K and not the fludrocortisone and not salt loading? What happens then? Will they balance out the renin/aldesterone by not retaining so much salt and letting the hormones do the regulating? If we don't over load on salt and the aldesterone levels stay higher - with the proper supplementation of vitamins and minerals - will it regulate itself?

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I found another interesting article http://www.ncbi.nlm.nih.gov/pubmed/16007255

The renin-angiotensin-aldosterone system controls blood pressure and salt-volume homeostasis. Renin, which is the first enzymatic step of the cascade, is critically regulated at the transcriptional level. In the present study, we investigated the role of liver X receptor alpha (LXR(alpha)) and LXR(beta) in the regulation of renin. In vitro, both LXRs could bind to a noncanonical responsive element in the renin promoter and regulated renin transcription. While LXR(alpha) functioned as a cAMP-activated factor, LXR(beta) was inversely affected by cAMP. In vivo, LXRs colocalized in juxtaglomerular cells, in which LXR(alpha) was specifically enriched, and interacted with the renin promoter. In mouse models, renin-angiotensin activation was associated with increased binding of LXR(alpha) to the responsive element. Moreover, acute administration of LXR agonists was followed by upregulation of renin transcription. In LXR(alpha) mice, the elevation of renin triggered by adrenergic stimulation was abolished. Untreated LXR(beta) mice exhibited reduced kidney renin mRNA levels compared with controls. LXR(alpha)LXR(beta) mice showed a combined phenotype of lower basal renin and blunted adrenergic response. In conclusion, we show herein that LXR(alpha) and LXR(beta) regulate renin expression in vivo by directly interacting with the renin promoter and that the cAMP/LXR(alpha) signaling pathway is required for the adrenergic control of the renin-angiotensin system.

If you click on the other article out to the side of this article - it states that the thyroid plays a key role in the LXR of the liver. It has something to do with T3. This makes me wonder --------years ago when a doctor was trying to figure my illness out - in addition to low cortisol levels my T4 wasn't converting into T3 properly - it's called Wilson's Syndrome. He had me titrate T3 to try to get my body temp. up. It did not work on me. I never could get my body temp. above 96.9. What it did do - was in addition to making me real nervous - it caused an increased heart rate. Could this be the tachy response - is it related to the T3? Could part of the problem be in the conversion of T4 into T3 and the balance between the two? The other thing I wonder - he also determined that in my liver the P450 pathway did not work properly. This has to do with hormone issues too. My body holds onto hormones and doesn't reroute and throw them off properly. Therefore, a possible cause of endometrosis - high estrogen related. He suspected that could be one of the reason why it takes so little of a drug to affect me and for it to linger longer than it should. (Okay, now things are getting complicated. No wonder doctors don't take this on - it is VERY VERY complex.)

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CONCLUSIONS: These findings show that acute inflammation is associated with a temporary deterioration in cardiac autonomic nervous system function in healthy subjects. *I wonder what it is doing to US? (since we wouldn't be considered "healthy subjects.

I'm so sure of this - I do feel that my body is in a constant state of inflammation. I have LOTS of pain. I don't think it's all related to the EDS. Also, I feel that the arthritis and fibro is inflammation related. But, what causes all the inflammation? And, how do we settle it down?

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"Okay, now things are getting complicated. No wonder doctors don't take this on - it is VERY VERY complex."

Issie,

My primary doc told me that the endocrine system is the hardest part of medical school....most medical students learn just enough to pass the test and dump it all once it is over. Unfortunately there is no black and white with the body's endocrine soup, its all shades of gray made from every color. They are just now finding that the heart is also an endocrine gland/organ. There are just too many things that are not understood.

However, there is one way you can screw yourself up REALLY quickly.......by messing up your electrolytes! Even "healthy" people can mess them up quickly (heatstroke, vomiting, etc.) I take dDAVP and have to get my blood monitored at least every 6 months. If you start messing with Na or K, please let your doc do the necessary bloodwork to check that everything else is functioning normally.

As for the inflammation, it is an immune response. That can also be checked via bloodwork. There are several natural anti-inflamatories like ginger that I take since my nephrologist has nixed me taking any of the OTC kind and it helps.

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Yeah, I was talking about phentolamine. It was the drug used in the study to suppress norepinephrine. It was also used in a study on POTs by the Mayo Clinic. They used it to determine that the blood pressure spike after valsalva manuever was actally caused by hyperadrenergic response.

I was reading about the heart producing it's own renin to create Angiotensin II. It seems that our Mast cells throughout the body have an ability to create renin. I do find it interesting that Vanderbilt did a study on MCA and hyper POTs. Maybe this could also be a key piece to our problem. I agree the endocrine system seems to be the most complicated, and there are still so many things that they don't know about or understand.

I'm not sure about supplementing with K. I think the point would be to have our bodies produce renin not just the aldosterone. The Vanderbilt article also mentioned that we don't release sodium through our urine like normal people do. So for some reason our bodies are retaining the sodium. That may help explain why we having standing hypertension. I do know that at my first ER visit with POTs my K was low, and I started taking a K supplement. Subsequent ER visits always showed my mg and vit D being low.

I read several posts on this forum from last year talking about hyper POTs and blood pooling. Someone posted that true hyper POTs people should have severe vasoconstriction from the norepinephrine and no blood pooling. I don't have blood pooling. I might have a little in my feet sometimes b/c they can turn red, but I do not have blood pooling in any of my extremeties. That being said the Vanderbilt study did say that the average person lost 14% of their blood plasma after 30 minutes of standing and that hyper people lost almost double that amt of blood plasma. I'm assuming that would probably be true if our bodies weren't producing enough aldosterone and renin. The flood of norepinephrine suppresses renin production, and it also seems to effect LXRs in our liver. That was my thinking behind phentolamine. It would allow norepinephrine to stimulate instead of suppressing and it would also relax the blood vessels. I'm just curious to know if anyone taking clonidine has had their standing norepinephrine levels checked. Did it actually lower the amount of norepinephrine to more normal levels? If the levels aren't within normal range then it would seem that both the kidneys and liver wouldn't be able to function properly. I know since my symptoms have gotten bad that I have had problems with my kidneys and liver. Since the LXRs are also involved in glucose metabolism I'm wondering if that is why I am now insulin resistant. If the norepinephrine levels are still too high it doesn't look like lowering the salt would actually help that much, b/c norepinephrine suppressed renin even with sodium deprivation. As I mentioned before the question is really which came first the norepinephrine surges or the kidney malfunction. If the norepinephrine surges were caused by the kidney's not working properly then the lower salt should still stimulate more renin production than a high sodium diet. If the norepinephrine is being released for another reason, then getting those levels down to a more normal level should get the kidneys functioning properly with a normal sodium intake. I guess I'll be the first guinea pig and lower my salt intake and see what happens.

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