Dr. Stewart's Reply To Me On Ace2 And Pots

[bellgirl]

Well then I suppose I must be very different than most, because my medication regimen is working fairly well for me now. I really don't want to change a thing. Less tremulousness, dizziness, tachycardia, normal blood pressure, no vertigo, and no fluid retension. Still have some symptoms, but I'm able to do more than I have in months! I have been on a medication for high blood pressure, a angiotension receptor blocker for about 12 years now. I've had to change dosage on a few occasions, but I've never had potassium depletion, and I only started on the diuretic about a year ago, but I love potatoes and bananas and OJ, which are all high in potassium. I had major POTS, and now I don't. It was the bystolic, my second beta blocker, that made the difference, and clonazepam at night with Cpap. I still have allergy/slight asthma when I have respiratory issues and some bowel and bladder spasms on occasion, but after 13 years without a diagnosis, that's pretty good after about 6 months. I was very in tune with my body, and compensated with a lot changes in diet, natural remedies, medical knowledge, etc. In fact, I told my dysautonomia doctor that I actually looked up dysautonomia and POTS before my diagnosis, but was confused because of my high blood pressure, and thought that it couldn't be my diagnosis, because of it. We are all very different, and I am interested in all the theories here, but I'm here to say, I'm living proof of it all working, right now, anyway. I certainly don't know all the answers. I am still learning and amazed at all the intelligent people on one site

[RichGotsPots]

Yeah, and if you need to increase your potassium that drug would do it.

But, if there are auto antibodies to ace 2 and you have low renin and aldosterone - this would probably be bad for you. With the kidney dysfunction - the thought is these people have too much potassium. The usual treatment is diuretics - but that won't work for us potsies. The other possibility is instead of having vasodilitation issues we may have vasoconstriction issues. The possibility of auto antibodies to ace is increased if there are connective tissue disorders and autoimmune problems. I think allot has to be discovered before the true picture will come to light. The studies I read on this said that some women have pre-eclampsia and this can be the issue with this. That would explain why some have developed POTS issues with pregnancy.

I think there are different subsets of us and we don't all fit into the same little box. We need to figure out all the components of each individual person and then catagorize us and then the solutions for each group - will be totally different. I don't believe that has been done yet - and I think it's a major flaw in the treatments being done today. (For what my opinion is worth. LOL)

agreed

[RichGotsPots]

I like Dr Stewart. Top guy. And he must get some far out emails... You guys should consider donating to his research. And now everyone knows that he occasionally replies he might get a few more...

there are alterative reasons for why ang II might be high in some POTS.

lol yup, I tried to get him to take me as a patient last week but he won't because he's a pediatric doc. And the NYU autonomic lab doesn't take any insurance at all and is $1500 or something for the 1st visit, ugh

[RichGotsPots]

I dont actually believe there is any evidence that POTS relates to endocrine abnormalities. other than perhaps chemicals in teh kidneys in some patients.

There are some instances where POTS is secondary to hormonal/endocrine abnomalities or you can say they mimic them..

[RichGotsPots]

No doubt. But Stewarts work demonstrated a subset of patients only with elevated angiotensin II levels and these were nearly exclusively females. The Vandy work suggests that they included 15 female patients who just happened to also have elevatede angiotensin II levels. They believe a larger portion do, but again you will notice that all the patients in that research were also female.

Email Dr stewart again - i think you'll find he thinks its about 20-25% ish.

This isnt criticising you, the idea or anything like that. Just applying some observations to the idea. I have often thought about whether inflammation could effect angiotensin II catabolism and I know that some studies suggest that C-reactive protein does as an example.

As for advocacy and sending stuff to doctors - the dangers of emailing and sending doctors volumes of research is that unless its relevant, demonstrates a basic understanding of physiology and is supported by actual peer-reviewed science relevant to POTS patients it probably just reinforces the belief that we are all obsessed with our symptoms and are crazy. The likelihood that a bunch of patients are going to solve the etiology of POTS based on random internet searches is probably pretty low simply because we cant test any of our hypothesis on patients and because we cant actually test any favourable results. But more often, it is because the theories are based on incomplete understanding of what has already been established about POTS or the physiology of the vascular / autonomic system.

I agree with Rama here, my POTS doctor actually dissed forum sites, so I wouldn't even mention it. I show other doctors info and sometimes I get a decent response jst to educate them about POTS. But the specialists dont want to hear it.

What we really need is to get the specialist together, to form a professional dysautonomia university. To have a dysautonomia medical journal published. Get the experts motivated...

[issie]

More info on angiotension and ideas in regard to antibodies to ACE.

Issie

[issie]

In my case, spiralactone was a not a good choice - was up sick all night. Could have been a coincidence but had issues like mast cell problems and my back hurts over my kidneys - pee'd all night. Not a good experiment.

Issie