New Theory (Maybe)

[radiohfan23]

I'm assuming there is already some thought to this, but I wonder how much hormonal changes have to do with the onset of POTS?

Aside from Hyper POTS which is genetically linked, a lot of us are unsure how and why we were inflicted with this condition. When I first got ill I went to see an endocrinologist who determined that I had a low level of testosterone and was about triple the high range of estrogen. I'm a 29 year old male with some family history of hormonal imbalances. I was treated and the hormones went back to normal ranges (not sure whether they've stayed there) but I still experienced symptoms which I still endure.

I had been repeatedly tested by different doctors and this was the only abnormality they found. I sorta pushed it off as coincidence but it dawned on me that since mostly women develop this it seems as though estrogen may be at play. Specifically young girls who are experiencing a significant increase in estrogen production in the late teen years (puberty) when a seemingly majority of POTS patients are girls of this age. Also, it seems that many women develop POTS after pregnancies which is also a time of immense hormonal changes.

I'm totally speculating on this and I'm sure there are many of you out there who have looked into this and I'm curious as to what more has been learned.

Thanks for any feedback.

Joe

[Birdlady]

Yes and no. I don't think it is as simple as a hormone being out of balance because treating it should make the symptoms go away and it does not. My theory is the imbalanced hormones are simply a symptom of another underlying issue. However with that said, high estrogen was one of the things we believe triggered my husband's POTS (we both have POTS! haha), so it is very interesting that was yours too. The estrogen is under control now yet he still has POTS! Go figure.

[issie]

Two things come to mind when considering hormonal imbalance. DIM - which can help regulate estrogen and cause it to balance and not turn into bad estrogens and Saw Palemetto - which helps testerone to not convert into DHT - bad testerone. Wonder if these would help things?

[kclynn]

Nothing to add to the hormone theory but Dana your post caught my eye. Imagine you and your husband both have pots. 2 of my son's first cousins (boys) have pots, and of course my son.

[Birdlady]

Nothing to add to the hormone theory but Dana your post caught my eye. Imagine you and your husband both have pots. 2 of my son's first cousins (boys) have pots, and of course my son.

It certainly is weird...I've had POTS long before I met my husband too, but I think it has to be something environmental. Although my husband was "sick" when we first met, he got worse over the years too. I am now learning my brother likely has POTS too, but it isn't as severe as mine...yet. It seems like everyone in my family has postural issues except my mom! haha My brother is still in his early 20's (21). When I was 21, I could push myself through some of the symptoms. Makes me wonder if in a few years, he will be just as bad as me. He has the heat intolerance like me..That's how all of mine started!

Issie, My husband's estrogen went too high because his doc put him on way too much testosterone gel. Excess testosterone typically gets dumped as estrogen. Once he backed off the crazy dose of testosterone, it has since normalized. DIM supposedly works, but I don't know how much it works. A lot of men with estrogen issues go on tiny doses of aromatase inhibitors. He never did that but has considered trying it to see what happens.

[Sarah4444]

I think that hormone levels are closely tied with POTS somehow - my symptoms definitely change at different points in my cycle (it's one of the only predictable things about my life - knowing when I'll for sure feel worse than usual). I also got really bad during my second pregnancy. I have been wondering about this - I did ok during my first pregnancy but much worse during the second - I wonder if there is some kind of cumulative effect and whether other women have found this, or if it's more random.

[Sallysblooms]

There are so many triggers, I have read that hormones can be one of them.

[faint factory]

All I know is that they don't seem to matter for mine. I started having issues long before puberty, no change in symptoms through puberty, no change when on various birth controls, and the first significant worsening started at 23 following no change in BC, no pregnancy, etc. I also don't notice anything changing throughout my monthly cycle. Hormones certainly trigger some people, but it doesn't seem to be the case for me at least.

[green]

I have posted about my testosterone issues before.

I have had POTs-symptoms going back to, at least, 2001. I had a hormone test that revealed low testosterone last fall. Since going on testosterone I have felt better. I believe in this link between hormones and POTS:

If you have low testosterone and you are a male, then you will not be able to significantly recover from POTS via exercise.

But what other link is there? don't know.

[ramakentesh]

Im a male with high testosterone so it doesnt fit in my case LOL. I was receding at 24 and had a hairy chest at 16 LOL.

More likely your hormonal issues were actually autoimmune mediated and you developed a second autoimmune illness (POTS) after the first issue was under control??

[Chaos]

Sarah4- Your post caught my eye as I was just reading today in the book "Hypermobility, Fibromyalgia and Chronic Pain" about how many hormonal issues are related to joint hypermobility syndrome. The author(s) specifically described how the menstrual cycle affected so many patients with this condition and caused exacerbations of their symptoms relative to high levels of progesterone at the various phases of the cycle. They also mentioned that the first 2 pregnancies tend to aggravate symptoms associated with JHS (not so much the subsequent pregnancies). So, many of our symptoms may be more related to the hypermobility issues, with which POTS is also associated, rather than the primary POTS symptoms... at least for those of us with EDS or JHS as a co-morbidity.

[issie]

I haven't read this book on EDS. Tell me more about the connection of EDS and high progesterone. I have EDS and had endometrosis - which is associated with too high estrogen and too low progesterone - the balance. But, after my complete hysterectomy, I wasn't EVER able to use the progesterone because it would give me horrible hot flashes. It was supposed to help that, but did the opposite to me. I've also read that with endometrosis, if you up your progesterone levels it could potentially help with the endometrosis. I don't know if it was the different sources of the progesterone that I was reacting to or if it was that my body just wouldn't accept the progesterone. This might be a key factor in some of our issues. I'd like to hear more about the connection between progesterone and EDS.

[ramakentesh]

Its been demonstrated that angiotensin II levels and it catabolism fluctuate during a woman's menstrual cycle. Thus any one with low body mass who has severe POTS and who experienced fluctuations in POTS symtpoms as a result of this cycle would have to consider Low Flow POTS as a possibility since angiotensin II levels directly correlate with symptoms in Low Flow POTS.

Since this is currently the only pathophysiological mechanism proven to cause POTS in a section of patients I would start there before suspecting hypermobility etc.

[Sarah4444]

Thank you so much for that info, Chaos and rama. Very interesting. I'd bet at this point that perhaps both progesterone and angiotensin II might be factors. PGD2 levels are often abnormally high in mast cell disorders too. My pain levels as well as POTS cycle with my menstrual phases.

[ramakentesh]

My pain levels flare up randomly but these are from ankylosing spondylitis

[Chaos]

I haven't read this book on EDS. Tell me more about the connection of EDS and high progesterone. I have EDS and had endometrosis - which is associated with too high estrogen and too low progesterone - the balance. But, after my complete hysterectomy, I wasn't EVER able to use the progesterone because it would give me horrible hot flashes. It was supposed to help that, but did the opposite to me. I've also read that with endometrosis, if you up your progesterone levels it could potentially help with the endometrosis. I don't know if it was the different sources of the progesterone that I was reacting to or if it was that my body just wouldn't accept the progesterone. This might be a key factor in some of our issues. I'd like to hear more about the connection between progesterone and EDS.

Issie- Didn't mean to be misleading in what I wrote. It's not that people with JHS have high levels of progesterone but that their symptoms flare up more during the times of their cycle when progesterone is dominating (like right before menstruation) and tend to have fewer symptoms when estrogen is dominant. I never had "normal" reactions to any hormones or BC that they tried me on. Couldn't take the progesterone and when they tried cycling me on BC to control bleeding, it just made me bleed more. Go Figure!

I was struck by Sarah4's comment about her symptoms being (seemingly) related to hormonal swings. I have always had that experience myself. Then when I saw FaintFactory's comments about her symptoms not being relative to hormonal swings, I immediately did a HUGE leap and thought.... Oh well, Sarah suspects (or has) JHS/EDS or some other HCTD but FaintFactory does not list that as one of her diagnoses. SO, it seemed to be supporting what the studies are showing about JHS and symptoms that so many of us have.

Personally, I don't fit the profile for Low Flow POTS.

[Sarah4444]

Chaos - That is a really interesting observation. My JHS diagnosis was made by Dr. Clair Francomano, but I am not "true" EDS, instead belong to a group of people she sees whose HDCT isn't named yet but has features of EDS (joint hypermobility but not in extremities like fingers and toes, and very soft skin) and Stickler Syndrome. It's so much fun trying to explain this to doctors. It would be simpler for me to just say EDS, but I'm interested to know if there might be others out there like me.

Also, what is the profile for low flow POTS? How don't you fit it? Do you have MCAD symptoms? I keep wondering if maybe the docs are looking at the same problems and calling it different things.

[Chaos]

Hopefully the above will be a link to take you to a topic on low flow vs other flow types from a while back. As I re-read it, it seems I fit both the high flow and the low flow categories. (Seems like on average I should be normal then, right ) Maybe that's why I test as having both neuropathic and hyperadrenergic types?

When I originally read it, I didn't have all the info from the tests that I have had since that time, so didn't think I fit neatly into any of the categories. Also I had been told that EDS people tend to be normal or high flow types, so that's why I was thinking I didn't fit low flow. Guess I need to have my angiotensin etc tested and see what it says.

[Sarah4444]

Actually there are two forms of Low Flow POTS - and the angiotensin II Low Flow variety is almost but not exclusively female. The other - NET deficiency is more equal in terms of sexes.

There are POTS patients with hyperadrenergic presentations that are also Low Flow but have yet to be catagorised.

Low Flow POTS with elevated angiotensin II correlates with receptor hypersensitivity - there is an increased response to norepinephrine because increased angiotensin II through impaired catabolism causes increased oxidisive stress and less nitric oxide avaiable for neuronal activity where its chief role is to dampen sympathetic outflow. So these patients have an excessive response to relatively normal norepinephrine levels, vasomotor nerve failure, absolute hypovolumia, pallor from reduced cutaneous blood Flow and reduced body mass index. And almost all of the patients are female.

And all Low Flow states impaire the skeletal muscle pump because they impaire blood Flow to the legs and calves through excessive and inappropriate vasoconstriction

Thanks so much for posting this thread, Chaos. I wonder if there are also some of us who have excessive responses to excessive norepinephrine leves. When I read threads like this I wish I had a more extensive science and medecine background.

[ramakentesh]

Maybe that's why I test as having both neuropathic and hyperadrenergic types?

And you can - distal denervation could potentially result in hyperactivity of the remaining receptors.

[L4UR3N]

Issie- Didn't mean to be misleading in what I wrote. It's not that people with JHS have high levels of progesterone but that their symptoms flare up more during the times of their cycle when progesterone is dominating (like right before menstruation) and tend to have fewer symptoms when estrogen is dominant. I never had "normal" reactions to any hormones or BC that they tried me on. Couldn't take the progesterone and when they tried cycling me on BC to control bleeding, it just made me bleed more. Go Figure!

This is definitely the case with me!! It took me a while to make a solid connection, but I feel a million times better when my estrogen levels are at their peak. I'm not sure if this is because of the vasodilating properties of estrogen, or because progesterone has a strong link to arrhythmias (especially SVT and PVC's). I have actually started eating soy nuts during the second half of my cycle (when progesterone is highest) and it has made a profound difference in the way that I feel. My heart feels calm, my pvc's are nearly gone, and my POTS symptoms remain at a steady level instead of flaring up right before menstruation. It is really the ONLY thing that I have found so far that helps me.

[brethor9]

My POTS came on pretty much right after I had a partial hysterectomy.....I have always felt it was the trigger somehow and could be hormone triggered

Bren