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katyroq

Chronic dehydration and fluid balance in POTS

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Can anyone point me to information or other posts about the role of the body's fluid balance systems in POTS? Florinef has made a huge difference for me, but my doctor said it just makes me feel better but it isn't solving the problem with my nervous system. But couldn't it be possible that I could have had a non nervous system problem causing the hypovolemia? Is there much research into causes of hypovolemia at the level of the kidneys or the hormones like aldosterone involved in fluid retention? 

I used to be so thirsty all the time and no matter how much I would drink (even with lots of salt) it would go right through me and I would still be thirsty. I did the high water high salt diet for several months before resorting to medication. Diet didn't work at all, but florinef worked and I feel so much better in many ways and am not nearly as thirsty. To me that suggests that my body was not responding properly to the inputs of salt and water. Also I have never noticed a difference when I drink pedialyte or another oral rehydration solution with the optimal salt/sugar/water ratio. It just goes right through me like water. 

Connected to this, does anyone deal with extremely dehydrated skin (not necessarily dry)? Within minutes of getting out of the shower and putting on moisturizer my skin is just as dehydrated /wrinkly as ever (super fun for someone way too young for wrinkles!) I know it has to be solved internally but I just can't figure out a way to hydrate myself. This is the case even on florinef. 

Anyone else have this "brand" of pots or know anything about it? I would appreciate any info you have. 

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Hi,  The issues with wrinkly fingers does not have very much to do with hydration.  It has been proven that the wrinkling of fingers is caused by the nervous system.  Dysautonomia can often cause wrinkly fingers without exposure to water, mine often go from smooth to wrinkly at a moments notice.

Just one more of those Dysautonomia fun facts and symptoms.

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@katyroq - ANY meds we take for diagnosed dysautonomia will just make us " feel better " , there are no meds to cure it.  About dehydrated skin - as far as I know that is not especially a symptom of dysautonomia, but could it maybe be possible that you have hard water? If there is too much calcium or iron or any other heavy metals in your water they can cause this type of skin reaction. I had the same ( well water ) and had to use a water-softener to solve the skin issues. 

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Have you yet been tested for any thyroid imbalance? It can cause you to be tired, emotional, effect your appetite and thirst, your bowel habits and dry your skin.  It is something you can look into with your doctor.  I also have very dry skin and need to use lotion everyday, I just rub in plain old baby lotion after I get out of the shower and that helps with the tightness. When it's really bad I use lotions meant specifically for chronic dry skin; I don't like them because they feel thick but they do work.

  I hope you feel better soon.

.

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Thanks everyone for your replies. I will do some more reading but it sounds like this is not connected to dysautonomia. I did just look up lab results and while all my electrolytes are "in range", my sodium is always at the top of the range, potassium the lowest possible, and CO2 almost at the maximum. I read that this could be connected with dehydration (so obviously a doctor won't say anything since it's a single point in time, and it can be normal to be slightly dehydrated). But could it be that my "set point" is "slightly dehydrated"? I know I'm grasping at straws here, but sometimes my need to explain things gets out of hand...

@Alex D.Interesting. I did not know that. Always something new you learn with this illness...

@Pistol Yes I guess I do understand that there is no cure for dysautonomia, and my doctor does the poor man's tilt test every time I go, and the medication has definitely not changed the readouts there. I was just grasping for an explanation. I just read the article MomtoGuliana posted, and now I understand better that the autonomic nervous system is what regulates all the hormones involved in the kidneys anyway, so it all comes back to the same thing. And yes thank you for reminding me of the hard water. I do have really hard water in my area, but I rent so I can't do much about it at the moment. It doesn't cause issues for my roommate, but then again I'm a lot more sensitive than she is to just about everything.

@WinterSown I did have my thyroid checked a couple years ago when I first started trying to find an answer to my health issues. Everything was in range, but I did just now look up the numbers because I remembered some of them are close to the limits. So TSH is right in the middle and antibodies are good. But both free T3 and free T4 are very close to the top of the range. So that tends toward hyperthyroidism if anything.  Unfortunately no lotion can touch the dryness. Even those extra thick sticky lotions don't help, they actually make it worse because the dryness of my skin causes it to shed really fast, and then it gets sticky and clogs up the pores, and then I get acne everywhere, which is no fun either. (ETA I really mean dehydration rather than dryness. My skin isn't dry and flakey just tight and itchy/uncomfortable)

@MomtoGiulianaThank you so much. I hadn't seen that article before and it helped me understand some things better.

 

 

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@katyroq someone just told me that extra virgin olive oil  ( ingested frequently ) really helps for parched skin. Maybe that could help??

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I found that Differin lotion really helps my skin and the first ever that doesn’t cause breakouts.  It even helps my chapped hands.

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I just wanted to respond to this... I think fluid balance is a key issue in my POTS.  I am still trying to figure out WHY and what is going on though.  At the end of my pregnancy, during what I would imagine is a huge fluid shift, I got very severe POTS attacks.  After I delivered, the attacks went away, but I got severe bradycardia.  My cardiologist told me to get 3 IVs a week, as the bradycardia was due to the fluid shifts after the pregnancy.  The 3 IVs did seem to "fix" the bradycardia (never had an issue with this before).  I constantly feel dehydrated, no matter how much I drink.  I always feel better after the IVs.  I went to a specialist and had a lot of testing and he found that I have undetectable levels of vassopressin.  That is the hormone responsible for fluid balance, so that may be part of the picture- still trying to figure it all out.  My POTS started after a case of food poisoning (also a fluid shift)... yet I have not been able to get better for 13 years.

As for the dry skin, I am not sure, but Vitamin C might help.

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Hi Katy,  

The symptoms you mention, like thirst, dry skin, etc. are pretty common to POTS, whether or not you actually have low blood volume.  Also, many people with dysautonomia  benefit from taking florinef - again, this is whether or not you have low blood volume.  Only a small percentage of POTS patients actually have low blood volume - you could get a special test to see if this applies to you.

 

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My blood work showed that I had minimal to no aldosterone in me before I started Florinef.  As this replaces the aldosterone, it helped me immensely.   Aldosterone is key to fluid retention.  "Aldosterone is a steroid hormone. Its main role is to regulate salt and water in the body, thus having an effect on blood pressure."  Maybe your levels were too low also so this is why you are seeing an improvement with this med.  From what I've read low aldosterone is not uncommon in POTS patients.

I also had the test done for hypovolemia and I was only 1 point under the normal range so it wasn't as bad as my doctor had expected.  This test was done prior to taking Florinef so I have no idea what effect taking this medication has had on those levels.

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On 6/14/2018 at 10:40 AM, Always hoping said:

My blood work showed that I had minimal to no aldosterone in me before I started Florinef.  As this replaces the aldosterone, it helped me immensely.   Aldosterone is key to fluid retention.  "Aldosterone is a steroid hormone. Its main role is to regulate salt and water in the body, thus having an effect on blood pressure."  Maybe your levels were too low also so this is why you are seeing an improvement with this med.  From what I've read low aldosterone is not uncommon in POTS patients.

I also had the test done for hypovolemia and I was only 1 point under the normal range so it wasn't as bad as my doctor had expected.  This test was done prior to taking Florinef so I have no idea what effect taking this medication has had on those levels.

Would it help with constantly feeling thirsty?  I constantly feel thirsty yet I’ve only perspired a few times since onset (and bizarrely most of that was in my palms and on the backs of my fingers—-so friggin weird).  Anyways, you also said you had iron injections at one point, yes?  What does that do?

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I'm not sure if the aldosterone helps with thirst or not.  The IV iron infusions were due to very low ferritin numbers.  Normalizing my iron helped a lot with the fatigue and shortness of breath.  An endocronogist can do blood work that will check both of these numbers for you.  If you haven't seen one it could be worth a visit.  Be well!

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7 minutes ago, Always hoping said:

I'm not sure if the aldosterone helps with thirst or not.  The IV iron infusions were due to very low ferritin numbers.  Normalizing my iron helped a lot with the fatigue and shortness of breath.  An endocronogist can do blood work that will check both of these numbers for you.  If you haven't seen one it could be worth a visit.  Be well!

Thanks.  I’m currently in the process of switching PCPs and hospitals I go to.  Last one said it was all somatic.  So lazy.  Why bother going to med school?  Everything *could* be somatic.  Run some d*** tests on your suffering patients.

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