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KDUB

Hormones and POTS

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Hello again everyone,

Another day, and another struggle. I am currently seeking information about whether my hormonal issues could be causing my POTS. My mothers side of the family deals with terrible hormonal issues, and most take medication for treatment. Before POTS, I was on Celexa 20 mg for about 7 years for anxiety and panic attacks. Celexa only affects seretonin. I began developing new issues with insomnia and brain fog so my psychiatrist switched me to Remeron witch affects serotonin and nor-epinephrine. After a week of Remeron I developed high blood pressure, then POTS. Now it's been 3 months of bedridden ****! I also found out I have very low testosterone. I'm a 24 year old male and my levels are that of a 90 year old man. My question for everyone is, does anyone have any advice on what could be causing my problems? Could this all be POTS related? Any advice or insight is greatly appreciated!

Also please reassure me that this will not be the end of me! I'm always worried now! My anxiety and panic are worse than ever. I'm 24 with a baby on the way. My child needs me, and I'm worried I won't make it. 

Thank you,

 

KDUB

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Hey Kdub, I'm a male and my testosterone is very, very low as well.  I visited an endocrinologist about it, but the endo couldnt figure it out.  Through a lot of research of my own though, I think I have discovered how it is linked to my hyper pots.  I would guess that there is a good chance that you have the hyper pots subtype that i do based on what you just described and from your other thread.   I'll type it up a bit later today in this thread and describe exactly what I did to get myself back on my feet again.

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Hello KDUB! I am 46 female and have POTS for 8 years. I lean towards hyperPOTS. A year before I got really sick I was put on Effexor for my insomnia & feelings of anxiety/panic. Little did I know that Effexor was the LAST thing my poor brain needed! I was also on Ambien at the same time. I was waking up on Ambien. My doctor could hardly believe it. When I went up to the next dose on Effexor I felt terrible and stopped taking it. I kept saying I feel MORE anxious. Well that's because I was already having way too much norepi going on in my brain. So I suspect the meds they gave you didn't help matters but did it cause you're POTS is hard to say. I too may have been suffering the effects of POTS before it really reared its ugly head. I'll never know I just know that I have to deal with it now.  I suggest not using anything that gives you "energy" or is caffeinated. If you can get a doctor to give you a tilt table test they can draw your blood on tilt to see how much norepinephrine you're producing when you stand up. Unfortunately a lot of meds make POTS people feel even weirder or worse. I tried so many things. All of them made me feel terrible. Hormones play a big part in POTS but as a male Inwoukdnt think you'd have so much of that like the ladies do. Low "T" at 24 isn't too good. Not sure what your experiencing but I would suggest learning to self talk through bad episodes. This can be incredibly helpful because they can be scary. The middle of the night ones were the worst for me. Now when it happens I just keep saying to myself "relax it's OK you've been through this a 100 times you're gonna be fine" and it passes. I hate that this has happened to you and you're so young. It does get better but the process of that is hard. Keep your chin up. You will make it through this! Cyber hugs to you! 

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Have they tested your adrenals? They usually do an 8 am test to see where you start your day and an afternoon to see how far you climb. They also do cortisol stimulation. Just a thought, but since you mentioned other hormones, it might be good to check. Thyroid too. If all of those hormones are off, you might be looking at something like Pure Autonomic Failure. POTS is a symptom of PAF. POTS is often the first diagnosis that ultimately turns in to a symptom leading to another diagnosis. It took many years for me to be diagnosed, and I just had another symptom that has them rethinking my diagnosis - again.

I hope they figure it out quickly for you. A baby is an exciting time. Congratulations. 

Kim 

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I would see about going to an endocrinologist to have your hormones tested, it's a bit different because you're not a female and with my issues I experience high spikes when it's near and during that time of month. But you should have your vitamins, hormones, thyroid, cortisol and whatever else might be helpful. POTS affects all systems in the body so it's not abnormal for something to be imbalanced. I hope you can figure out what's going on, even maybe checking your glucose levels. I know that with my insulin resistance high testosterone levels are a symptoms of that which is what I have. 

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I am nearly positive that the underlying cause of my hyper POTS is from an ACE2 deficiency.  For some background, the system that regulates blood volume is called the renin-angiotensin-aldosterone system (RAAS).  When the kidneys detect low blood flow or low sodium levels (for example, when you are dehydrated), the kidneys release renin into the bloodstream.  Renin causes the release of a hormone called angiotensin I.  Angiotensin I then gets converted to angiotensin II through an enzyme called the Angiotensin Converting Enzyme (ACE).  Angiotensin II then triggers a variety of activity in the body.  It is a very potent vasoconstrictor that causes your blood pressure to rise.  It also triggers the release of aldosterone from the adrenal glands, and the aldosterone is responsible for making you feel thirsty and it also causes the kidneys to retain sodium, thereby increasing blood volume.  Most of the angiotensin II in your system gets catabolized to lesser forms of angiotensin (angiotensin 1-7) through another enzyme called the ACE2.  The other interesting thing about this system is that when the kidneys detect a certain level of angiotensin II in the blood stream, it will stop producing any more renin even if the blood flow is low.  It does this of course because if it didn't, your body could kill itself by overproducing angiotensin II thereby raising your blood pressure too high.  Wikipedia's article on RAAS is very informative if you want to learn more.

 

Julian Stewart has published some articles on a version of hyper pots that he calls "low flow pots".  He found a defect in the ACE2 that results in chronically elevated levels of angiotensin II.  The chronically high levels of angiotensin II cause havoc on your system.  One symptom is chronically low blood volume since your kidneys aren't releasing enough renin due to the inhibitory feedback loop of the high angiotensin II levels.  Low blood volume of course makes it so that you aren't getting enough blood flow to your brain when you are upright - which could certainly explain brain fog.  Julian Stewart states that angiotensin II can increase the release of norepinephrine, which is the key elevated hormone in those that are hyperadrenergic.  High levels of norepinephrine also causes havoc on your body.  High levels of anxiety, high blood pressure, pale skin, vision issues, tachycardia, etc are all side effects of high levels of norepinephrine.  My experience is that there are multiple things that can trigger norepinephrine attacks - anxiety being one, standing when my blood volume is low is another.

 

I came across this article that relates high levels of angiotensin II to low testosterone levels in males.  Basically, the leydig cells in the testes have angiotensin II receptors that when activated stops the production of testosterone.  http://www.sciencedirect.com/science/article/pii/S0018506X12001377

 

Another problem that high levels of angiotensin II can cause is oxidative stress, which can also lead to fatigue, brain fog, vision problems, etc.

 

Here are some good links to Julian Stewart’s research:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511479/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3810291/

http://www.prohealth.com/library/showarticle.cfm?libid=17890

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511483/

 

So, there are a few things that I do to manage this.  First, I take clonidine to suppress the release of norepinephrine.  It took a while to figure out the correct dosage and it had some weird side effects at first.  You can read more about that if you want in my post in the recent clonidine thread.  Clonidine is also used to lower blood pressure.  Second, I take Losartan.  Losartan is an angiotensin receptor blocker (ARB) which lessens the effects of angiotensin II, and is also typically used to lower blood pressure.  Third, I take a low dosage of Zoloft (SSRI) to keep my anxiety in line since anxiety has the potential to trigger norepinephrine attacks that exceed what my dosage of clonidine suppresses.  I actually tried Bupropion (SNRI) for a week or two before switching to an Zoloft, but that made things much worse for me since SNRIs increase norepinephrine.  Fourth, I have found that I have to regulate my blood volume myself since my system can’t.  Increased fluids and sodium is they key here, but I have to be extremely careful not to take too much because too much sodium can lead to extremely high blood pressure spikes during a norepinephrine attack.  I have found that Propel, Gatorade, nuun tablets, and/or sodium chloride tablets are a good option.  Also, I don’t need to take nearly as much as those with the regular form of POTS do.  1 or 2 additional grams of sodium per day in addition to my regular diet seems to be enough to keep my blood volume high enough to clear out my brain fog for me to function.  Fifth, I take daily vitamin C supplements for their antioxidant effect to combat the oxidative stress caused by the Angiotensin II.  Sixth, I am on a daily topical testosterone replacement.

 

There are different underlying causes of hyper pots, and there could be other reasons for your low T and your other symptoms, so please see doctors before trying anything that I mentioned in here.  I mention all of this because the ACE2 deficiency is one possibility that could explain your symptoms, and I know how hard and frustrating it is to find answers.  If you haven’t done so already, I recommend asking your doc to take your lying down and standing catecholamines to see if your norepinephrine levels are excessively high when upright to confirm whether or not you are hyperadrenergic.  Also, it would probably be valuable to see an endocrinologist to see if there is another possible explanation for the low T.

 

I have been extremely curious if other males with this condition had low T, so I am very glad that you posted this question.  I empathize with what you are going through.  I was bedridden for a couple of months just late last year, but I’m quite stable and functional now.  


Hang in there and please keep us posted.

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