Pots Check Your Kidneys! Please Read!

[Science girl]

Maia do you get a lot of swelling of feet, legs...?

[Guest maia]

No really. I do sometimes but mostly in the heat. My accupumcturist straightened that out with a lot of-interestingly-kidney work. Boy is she going to have some work to do to undo things when i get put back together. Great info too, thanks! I think a progesterone thread is a great idea too, I was going to ask..

[issie]

Science girl, I like science too and enjoy the technical things and try to understand it. But, what you are showing in regard to progesterone, may be another clue to me and why I couldn't use progesterone. I have low renin and aldosterone levels - one of those odd ---some POTS people have things. I also feel that I'm overly vasoconstricted. Does progesterone trigger this response with the renin and aldosterone or is that just part of what happens during that phase? Maybe my renin and aldosterone levels being low is a compensatory thing to keep the vessels more dilated. But, what I can't seem to figure out about me is - I have EDS and you'd think my body would want to be more constricted --but, any time I use something that does that ---I'm worse.

And that brings up another idea in regard to endometrosis and estrogen. Since we seem to be estrogen dominant - maybe we stay in that phase of it longer and that keeps our bodies from producing as much progesterone and that too could be a compensatory thing. But, it would also make us more estrogen dominant and keep progesterone low. And since estrogen along with NO is shown to have a more vasodilating effect - maybe that's why we are more estrogen dominant and that too could be a compensation. But if we are more estrogen dominant we would also have more chance of having MCAS - if estrogen can trigger a response to mast cells.

I have questioned the males, if they have had their estrogen vs. testosterone levels checked to see if they are estrogen dominant. So far, none of them has had their ratios checked. But, there must be some connection with hormones here.

Of course, I'm past menopause since having had a complete hysterectomy and many of us with MCAS who have had hysterectomy find that we get worse after surgery. So, we have less estrogen and that might explain some things. We need the estrogen to keep us vasodilated. And maybe we have too much progesterone at that stage. But, if that were true - why would I still have low renin and aldosterone? And why would my MCAS be worse - if I have less estrogen? MCAS has more things triggering it and estrogen isn't the only factor.

I think this is bringing up more questions than answers for me.

As for CO2. I had an observation with snorkeling and hyperventilation. I have had a couple of bad "attacks" with this. I did research on snorkeling and the chance of re-breathing CO2 from a snorkel and it causing a sort of hyperventilation. If like this article says it is low CO2 and not low O2 - why would this be the result?

Issie

[Science girl]

Yes lots of things will trigger your mast cells not just estrogen. Histamine will also and many other things. That's why blocking the H1 receptor on the mast cell with first generation antihistamines like ketotifen help stabilize the mast cell. But if estrogen is an aggravator then best lower it. Interestingly some people react to progesterone as it increases the estrogen dominance as progesterone is converted to estrogen and then methylated to be cleared from the body. These people find natural progesterone creams work better. I'm not sure why this doesn't happen in everyone (maybe an over active enzyme converting progesterone to estrogen: totally off the top of my head). Also progesterone levels drop during menopause too. In the article I posted estrogen doesn't have a great effect on the cardiovascular system but progesterone does. So maybe your problem was low progesterone and nothing to do with estrogen levels.

I was a little confused about whether you have a vasoconstriction problem or vasodilation problem. Mostly in POTS it is vasodilation that is the issue so why do you 'feel' constricted?

As for CO2 levels being low and not O2 it is because our bodies measure how much CO2 is in our blood to indicate the need to breath. They don't measure O2.

[issie]

I was trying to use natural progesterone creams and could not. It made me so sick. Gave me hot flashes and caused mast cell response. Made me angry and just irritable. Wasn't a good thing for me at all.

Yes, I know a lot about MCAS and just was making a general statement. I take GastroCrom, Allegra and Zantac. Just thinking out loud that estrogen wasn't the only thing contributing to it. Haven't tried ketotofin.

I had a mast cell attack one time and had to have nitroglycerin at the hospital and a very expensive over night stay. They thought I was having a heart attack. It brought down my extremely high bp and leveled things out. I've also tried midodrine and herbals that vasoconstrict and they all made me worse. If I use things that help dilate then I feel better. I think I'm peripherally vasoconstricted and overly dilated in the splanchnic area. I do best with an abdominal binder and not on my legs. But, there is a fine line in how much to do with vasodilating. Too much and then I have edema and pooling in my legs and feet.

I'm not sure about the CO2 thing. When I had the hyperventilate thing in a horizontal position with swimming the only thing I think it could have been was either a mast cell response from the exercise or too much CO2 from rebreathing CO2 that built up in the bottom of the snorkel. Only things I can come up with. I have had them at other times too - but, this seems to make the most sense with the swimming episodes.

Issie

[issie]

http://forums.dinet.org/index.php?/topic/18979-standing-co2-clue-to-why-we-get-lightheaded/page-2?hl=+carbon +dioxide

Here's a post where we were talking about this. CO2 also can cause dilation. So, maybe there is too much dilation going on and we are also trying to eliminate the CO2 and cause more vasoconstriction. I know there is a fine line with me as to constriction and dilation.

Issie

[issie]

Snorkels also constitute respiratory dead space. When the user takes in a fresh breath, some of the previously exhaled air which remains in the snorkel is recycled into the lungs, reducing breathing efficiency and causing a build up of carbon dioxide in the blood, which can result in hypercapnia. The greater the volume of the tube, and the smaller the tidal volume of breathing, the more this problem is exacerbated. A smaller diameter tube reduces the dead volume, but also increases resistance to airflow and so increases the work of breathing. Occasional exhalation through the nose while snorkeling will reduce the build up of carbon dioxide, and help in keeping the mask clear of water.

http://en.wikipedia.org/wiki/Snorkeling

Here's info on rebreathing with snorkels increasing CO2. There's lots of info on this in dive information.

Issie

[Synthem]

This is so interesting! I remembering when my POTS symptoms were just getting started, there was an ever-present pain under my rib — only ever on one side — when I was doing something active that involved standing up and walking. I used to walk home from school every day in the heat and I would have the worst twinging pain and get seriously dizzy and start panting and sweating. Now, full on POTS and NCS with tons of adrenal surges and tachy being one of my main problems, the surges being pretty responsive so far to flourinef. Had my second one since getting on the meds today (and that was after physical therapy, walking around Ikea — dunno if you've been in one, but they're huge — and eating a meal. also came on with a strange pain in my abdomen.) I wonder how one would go about bringing this up without sounding like a total nut... I'm guessing the answer is "there isn't a way." Even some of the most understanding doctors tend to get skeptical and judgy when you start "self diagnosing" things; which is kinda crazy when you think about how many of u wouldn't even know we have POTS if we hadn't done that in the first place.

Thank you so much for sharing this information! Very interesting. Never would've thought of that!

P.S. I'm about 96% sure there was a House episode like this. The character had some organ of theirs dropping down into their abdomen, and they could feel it and hold it up and all their symptoms went away. I specifically remember seeing that on TV once, and it stuck with me for some random reason all these years. Kinda makes for an interesting coincidence after reading this post.

[Science girl]

Hey issie, sound logical about the snorkeling. I just mentioned the strange situation with POTS chemoreceptors because many people get misdiagnosed as having hyperventilation syndrome when they actually have a real biological reason for the hyperventilation.

I get symptomatic in deep water. I thought it was a problem with my diaphragm. I would be interested to know Maia how the test in water goes?

[HopeSprings]

I usually start feeling better about 10-12 days before menstruation, less dizzy and then right before or day of - start to go really downhill. (I'm there now in fact.) And then it's bad until I get to that 10-12 day time period before and so on. It's quite an obvious and dramatic shift. Does the timing fit into your explanation above Science girl? I'm not doing well and can't read all of this thread.

[Guest maia]

Synthem. When i first demanded that this be checked the doc in not too uncertain terms called me nuts. I said pretty much said fine, you can call me nuts if you want but prove it to me by showing me the results of this test and until you do, Im not buying it and youre being medically remiss if you dont check it. He had an intern order it to cya, but he ordered it. I was prepared to sit on the floor and be physically dragged out and told them i was not leaving until i had it checked or had orders in my hand to have it checked. And yeah, there was a house episode not long before i was told i had pots. I said i think something moved and i wanted to be checked standing but i was blown off then. Please feel free to use my info if you think it would help get you tested standing and supine. I also have issues walking around and its definitely worse after eating. Ikea, good for you, i couldnt even attempt it. About the self diagnosing? Well, if they are not going to try and find answers, what do they expect? They really dont understand how this feels or they would be jumping through hoops to find answers. Ive also read about others having pains in the abdomen and being diagnosed with all sorts of other things before floating kidneys were found and everything was linked to that and dietl crises. good luck and if you think it sounds like it could be a possibility for you, dont take no for an answer.

[issie]

I talked to my kidney doc about Maia and told him what she found out. Since I have EDS and am overly stretchy and also have had to have bladder and uterine suspensions (before my hysterectomy) this could be a strong possibility for me. I also have problems with lying on my sides and the cardio doc can't attribute the feelings that I have on my left side to my heart - so it probably is kidney related. My doc said this is a good possibility and he could do testing to determine this ---but, he would not want to do surgery unless it was just not tolerable. With me having POTS, EDS and MCAS he just doesn't want to take the chance with me. I could have it documented and checked out, but if I'm not going to do anything about it ---I don't see the point. If I get worse with time - then at least he is aware that someone else found this out and he is open to testing for it. He did not feel that I had nutcracker syndrome though and he is aware of it because he has patients with that.

Issie

[Science girl]

Yes Naomi, 10-12 days before your period is the luteal phase where progesterone is high. If you have a four week cycle 28 days then you start feeling better on days 16-18 do your cycle. Day 14 is ovulation where your estrogen is highest, over the next few days estrogen drops and your progesterone becomes the dominant hormone. I believe the progesterone helps us to retain more fluid and salt and increases the vasoconstriction (tightening of blood vessels) helping to stop blood pooling.

I am now on progesterone and I love it. I always fell like I was just starting to feel better and the slam - menstruation again! I take a mini pill so no estrogen.

[HopeSprings]

Thanks Science Girl - I've been trying to get this question answered for a long time. Your explanation makes sense. In what form do you take the progesterone?

[Science girl]

I take the mini pill Lueva. 75mg desogestrel. You take it continuously so no more periods! It took a few months of irregular menstruation. The first cycle on it i stopped for two weeks but after 3 months they stopped completely and things keep gering better. I still had a few days of feeling a little worse but these are getting less and less. Some people don't tolerate synthetic progesterone pills but find natural creams work for them. I only noticed being a little more unemotional and needed to make sure I wasn't harsh on the family but that seems better now too.

Hope this helps you.

Keep us posted Maia about how things go. I'm sorry it has been such a fight but know we are all standing behind you! Makes be want to do an awareness/protest walk! But i live in Europe so might be a Little for to walk!

[HopeSprings]

Thank you for the information.

[Science girl]

Your post Maia has got me thinking about other kidney issues. I have been looking into the nutcracker syndrome. Does anyone on this treat have experience of this?

[sue1234]

Sciencegirl, if you "search" the forum, you'll find that we've talked off and on about Nutcracker Syndrome. It is one of those possibilities, but as we've seen on this thread, it is not something doctors just check for under the correct testing conditions, unfortunately! I asked a urologist about it when I read about it a couple of years ago. They just kind of look like a deer in headlights(I've seen that look often, now that I think about it!). Apparently because I've had CT scans of the abdomen(lying down) and no report said I had any issue with the vessels at the kidney, I must not have it(according to the doctors). But, getting the test while standing might just be telling.

If only we could order our own imaging!

[Science girl]

No kiddling! I so wish I could order whatever tests I wanted!

I have had an MRI of my abdomin for endometriosis a few months ago so I was thinking to get them to look again at that. I believe if they were only looking for endo they may of not thought to check such a thing.

Thanks for the advice.

[HopeSprings]

I've been down the Nutcracker road (ok, that would sound really odd to anyone NOT in our world ) The first possible clue was an abdominal CT where they said there was some narrowing of the renal vein, but not enough to be considered NS. Then I saw a vascular surgeon and requested a renal ultrasound supine, sitting and standing - this showed the vein does get quite compressed in the sitting and standing positions. Problem was (as always) the Doctor had no idea what to do with this information. He didn't know if this was normal or not. I have the CD and will eventually take it somewhere once I can find a Doctor who might have a clue.

[davecom]

Naomi, that is very interesting. In your case, since you have the small fiber neuropathy diagnosis, why would you think this would also be causing a problem? Do you think you have two completely separate syndromes causing your POTS... as in mega POTS? I ask because I also have small fiber neuropathy and other seemingly completely unrelated test results that have been implicated in POTS, but I assume now that since they were more vague and the small fiber neuropathy is definite that they were just false clues.

[issie]

All the clues eventually add up to a complete picture. Since this is a syndrome and so very complex ---there can be many things involved in the "Big Picture".

Naomi, my kidney doc has patients with "nutcracker". Interesting enough - none of them has dysautonomia.

Issie

[HopeSprings]

Dave - I don't know for sure that SFN is causing my POTS and neither do the Doctors who report that my "POTS may be related to a small fiber neuropathy." I'm not even 100% sure about the SFN diagnosis, although I believe I do have it. My first biopsy showed SFN, but the next two did NOT show it and believe me, I did not get better in between biopsies. The I had a QSART which showed as very positive. So do I have SFN? Your guess is as good as mine and the Doctors cannot explain why the different biopsy/QSART results. They can't give me one logical explanation. I certainly have symptoms of sensory neuropathy, but is my POTS caused by autonomic neuropathy? I don't know. I have been tested for everything under the sun that could cause SFN and I am always negative. At this point we are re-testing everything under the sun that could cause SFN. I started with burning feet (I believe sensory neuropathy) and other neuro symptoms in 1997, but the crazy heart stuff (which started quite abruptly and dramatically) didn't begin until 2006. So did the neuropathy worsen overnight (sending me to the ER) or did something new happen? It's complicated and I'm open to all possibilities and willing to explore anything that can cause POTS. I think in my case it's possible I have one, two or even more things going on at once. I think Nutcracker is a longshot, but since there is evidence of compression, I think it's worth looking into. Obviously it hasn't been high priority because I had that renal ultrasound a year ago and still haven't done anything with it, but it's something in the back of my mind I may pursue when I've run out of other ideas.

Issie - I don't doubt it. I think true NCS actually causing disabling symptoms is rare and a longshot, but it's on the backburner you know?

[davecom]

Dave - I don't know for sure that SFN is causing my POTS and neither do the Doctors who report that my "POTS may be related to a small fiber neuropathy." I'm not even 100% sure about the SFN diagnosis, although I believe I do have it. My first biopsy showed SFN, but the next two did NOT show it and believe me, I did not get better in between biopsies. The I had a QSART which showed as very positive. So do I have SFN? Your guess is as good as mine and the Doctors cannot explain why the different biopsy/QSART results. They can't give me one logical explanation. I certainly have symptoms of sensory neuropathy, but is my POTS caused by autonomic neuropathy? I don't know. I have been tested for everything under the sun that could cause SFN and I am always negative. At this point we are re-testing everything under the sun that could cause SFN. I started with burning feet (I believe sensory neuropathy) and other neuro symptoms in 1997, but the crazy heart stuff (which started quite abruptly and dramatically) didn't begin until 2006. So did the neuropathy worsen overnight (sending me to the ER) or did something new happen? It's complicated and I'm open to all possibilities and willing to explore anything that can cause POTS. I think in my case it's possible I have one, two or even more things going on at once. I think Nutcracker is a longshot, but since there is evidence of compression, I think it's worth looking into. Obviously it hasn't been high priority because I had that renal ultrasound a year ago and still haven't done anything with it, but it's something in the back of my mind I may pursue when I've run out of other ideas.

Issie - I don't doubt it. I think true NCS actually causing disabling symptoms is rare and a longshot, but it's on the backburner you know?

Naomi,

Perhaps your small fiber neuropathy just is very patchy? How close together were the biopsies that were taken? Very interesting that you had one positive and two negative. I guess there is also the possibility that the first was just a poor reading? But combined with the abnormal QSART and the burning it would seem more probable that it was real. Has the burning gotten better?

Issie,

Of course there can be false clues. If you see a dead deer in your back yard and see a bear walk by, you may assume the bear killed the deer. On closer inspection though, you may find a bullet hole from a hunter in its neck.

In POTS, because it is not a disease but just a syndrome caused by another disease process, it is very easy to get distracted. For example, in my case I originally had four possible triggers that all happened at the same time. A severe reaction to a flu shot, two concussions, a likely viral infection, and congenital heart problems.

My POTS doctor told me you have to parse both your causes and your symptoms to get to the truth. He's right - I first went to a very local neurologist who kept insisting I must have post concussion syndrome. If I kept following that lead I would've never advocated for myself to get the QSART and biopsy showing small fiber neuropathy. We must be careful to not get distracted from what is truly causing our pain. I find it useful to approach things in a list and eliminate them one by one.

[HopeSprings]

Dave- I considered the patchy explanation, but the latest neuro thought it didn't make sense because the samples were taken within inches of eachother. That first biopsy was reviewed by two other pathologists and they both agreed it was positive. Simply can't explain what happened with the other two. No, the burning has gotten worse over time, spreading to other body parts. I'm sure I have neuropathy, but is it causing the POTS, I dunno. I just like things to make sense, consistency - so I can be sure I'm heading down the right path. I agree with your method of going down the list one by one and eliminating possibilites. This has been my approach too. This conversation got me thinking last night and I looked into the Sodium channel Na genetic thing and there is testing available. Did you know about that? They say this may explain 30% of idiopathic SFN cases. I'm going to ask my neuro about it.

http://www.genedx.com/test-catalog/disorders/small-fiber-neuropathy-sfn/