sue1234

In light of the new study posted by Naomi this morning, the autoantibodies that effectively cause us to have more norepinephrine in our systems would then be the reason we don't hang on to fluids. Which sounds promising...if they can rid us of the antibodies, then things(RAAS) will go back to normal(hopefully, but at least there is now hope!).

Yay!!! Thanks for posting, Naomi! I am soooo glad they are coming way closer to an answer, and an answer in the right direction! I've been thinking that they have not been studying the right things, and now someone HAS. Finally. Do y'all think this will open the door to possibly getting IVIG to clear out the autoantibodies? Does anyone have a clue if any facility is actually testing for this?

Andy, would you mind explaining how you feel better? I am supposed to begin Florinef soon, just waiting until I feel better and back to my "normal" so I know how Florinef affects me.

I do, too. Definitely burp like a sailor! Burping really helps get the air/gas up, but most of the time, the burp won't come up. This causes A LOT of bloating and pressure. I've been to many gi doctors and none were a help. Going gluten free got rid of it for about a year, but it's been back now for 6 months and gets really severe at times. I don't know what causes it, other than I believe it could be bacterial overgrowth in the small intestine. I used to have a gi doctor that would give me a prescription to clear it up, and it did help. Now, my gi doctor thinks it is "just" IBS. I don't believe in the term IBS...to me, it is just a term given because they don't know what is causing the problem.

Late January, 2006. Amazing how it just hits some of us! Like the lady in the article. It's got to be a virus or something that causes an autoimmune attack. I personally didn't have an illness at the time it hit, but who knows if when it hit, that wasn't the illness?

If I converted it correctly, 4.6 is equal to 78.2 over here in the US. That is "normal", but that doesn't necessarily mean you feel normal! Take your reading when you first get up in the morning, then around 1 hour, 2 hours, and 3 hours after you eat. See what the trend is. Mine goes up, then rapidly falls too low. I've had many years of low blood sugar. When I go low and have symptoms, I am usually in the 50s or 40s(2.8 - 3.2) range. I have documented a 39 on my meter one morning! Doctors have not been able to figure out why I go so low. I just eat every 2 hours to make sure it doesn't drop real low. I seem to be okay overnight, even though I think I drop, by body seems to bring it back up.

I have a strong sense of smell, even before POTS. My skin is sensitive to touch also. And recently very light sensitive. At times I am just more comfortable being a hermit.

Sorry you are having this right now, when it is supposed to be a joyous time. I was really fatigued and horrible morning sickness for my pregnancies, but like others, felt way better in the 2nd trimester. Like someone above said, anemia could be an issue. Ask to be tested to see if you need to increase your iron. During my last pregnancy, at around 38 weeks, I got sudden lightheadedness and the testing showed I was anemic even with taking iron, so I had to double up. If it's not anemia, keep in mind that the corpus luteum is churning out progesterone---known as the calming hormone---to keep that baby safe in the womb, until the 3rd month. Unfortunately it might be too calming. So maybe that will get better.

I understand the *sigh*.

Chaos, the 3 times my aldosterone has been tested was by 3 different endocrinologists over my 8-year Pots journey. Have you tried asking an endo?

You will get a thorough work up with him. He's the ONLY cardiologist that did a test where they inject you with nuclear stuff and then get under some machine that shows the heart's uptake of it. I don't remember the name of it. He also was the only one to use ultrasound to look at the vessels in the head(lower back of head and temple area of front). Ultimately I couldn't handle the beta blocker he put me on, so I didn't get much results, but I had a lot of testing.

I can believe that glycine keeps depression at bay. I've mentioned a few times on this forum that I am inappropriately in good spirits. I guess my high glycine keeps that going! Please keep us updated, especially what the new tests will be.

I had a high glycine when I had blood amino acids done a couple of years ago. Any idea what high glycine means? Interesting on the parvovirus...I'm going to have to go read on that. I was aware dogs got parvo, but not familiar with human's version.

I've had to resort to the shots without epi. The dentist may have to use more, but it worked great for me last year when I had a tooth pulled. I absolutely cannot use epi, as the tachycardia and panic feelings are too much for me.

Haha, I know, Katy, that is the first time I've seen a category name for older seniors! That whole vitamin d thing in seniors makes sense, as last year my husband and I were talking about how seniors just go down-hill once put in a nursing home. I was mentioning that they no longer get sunshine, so could only imagine how low their vitamin d levels were. I didn't have a clue it would directly be linked to their frailty upon standing, but was thinking more along the lines of their moods and well-being. I have tried to get my elderly parents to ask their doctors to test their vitamin d levels, but they just blow it off, and they say they are getting some in their multi-vitamins. They kind of look at me as a hypochondriac anyway, so anything I suggest is just because of that. They don't take me seriously.

Targs, from what I understand, the article states that the lower your vitamin d levels are, the more likely you will have a mast cell activation reaction. So, bringing your levels up to par should decrease them. Taking vitamin d does not bring on a mast cell reaction for me. When I take vitamin d, I feel energized the first few days, but around day 3, I get an almost pre-seizure feeling. (I have never had a seizure in my life, but feel if it went any further, I would have uncontrollable stiff shaking). I also have more low blood sugar episodes. I also get over-the-top sensitivity to light and sound. I get bone pain in my hips and upper spine. And lastly, my head feels surreal, like my brain is stuffed in, but no pain. It takes a few days for this to die down, and then it is time for another pill. I then usually decide to quit taking my vitamin d, only to try it again a few months later.

Carrie, no need to give credit to me! I know it is about the "oldest-old" subjects, being >80 years old, but I thought it may be applicable to other, younger people. One never knows with the fact that vitamin D affects the RAAS. And there are quite a few of us with RAAS issues.

I'm not sure why it does that to you, but I will mention a parallel that happens in another disease. People with a pheochromocytoma(tumor of adrenal gland that causes high blood pressure) cannot take a beta blocker. If they do, it makes their blood pressure go up. I don't pretend to understand why, but it is a paradoxical reaction also. They have to start with an alpha blocker.

http://www.ncbi.nlm.nih.gov/pubmed/24444004 Obviously I'm doing vitamin D research this morning!

http://www.ncbi.nlm.nih.gov/pubmed/24461581 I have some kind of swelling reaction off/on, definitely vasodilatory. I also have had a few years of documented really low vitamin D. I have to find a doctor that can figure out why I get horrible side effects when I take vitamin D, because I NEED to get my levels up in the normal range.

I haven't tried anything, but about 1.5" of the ends of my fingers turn deathly white when I am cold. When I am hot, they turn bright red. So, not sure if they are the same phenomenon happening, or some polar opposites. I'm not on any meds in the 8 years since I've had POTS, so mine is not med related. All this started a couple of years ago.

I suspect low volume for me, as I seem chronically dehydrated. It has not been documented, these are just my suspicions. In nursing school, we learned to test hydration status on an adult by pinching the skin on the back of the hand and seeing how long the "tent" pinched up remains after being let go. I remember under normal circumstances, skin would literally flatten out by the count of 1. When I pinch mine, it can stay tented for a count range of 4-8. My skin slooowly falls down. I actually need to ask a doctor about this, because not one doctor has tested via this method(maybe it is not used anymore???). Anyway, my aldosterone is low, renin normal, don't know angiotensin II. My RBC is always normal, so always wonder if, when properly hydrated, would I look anemic? I drink ALOT, as I am very thirsty. I drink, on average, a gallon a day. I drink mostly water, but eat salty and potassium foods all day along with it. I do drink iced tea, as it is the only thing that helps the colon move things along, plus wakes me up. And, I do pee ALOT. I've done a number of 24-hour urine tests over the years, and it has gone up to around 3500cc. It seems my intake and output pretty much equal, so I'm not losing extra fluids, I just don't seem to hang on to them.

Did you have these done via Labcorp or Quest? I know all of my values except angiotensin II. My aldosterone continually comes in around 83 pmol/l (upright)! This seems way lower than the average of the POTS patients in the study. At the same time, my renin always comes back in mid-normal range. My vasopressin always comes in low also. It is confusing. I have a prescription to start Florinef, but I've been sick with either a bad cold or a feverless flu for most of January. I didn't want to start any new meds until I felt back to my "normal". Please keep us updated. I'd love for us to all hash this topic out to see if we can find out more on root causes.

I also had the stimulation test, and it was negative. This was early on in my POTS, and all my cortisol numbers came back in the normal or low-normal range. Now, about 7 years later, my a.m. cortisol numbers continually come back in the upper high-normal range. I have no clue what is going on, except maybe having POTS puts my body in a chronic "stressed" condition, making extra cortisol secretion a "normal" thing for me.

Good thoughts going your way!