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IDreamInColor

Dysautonomia Can't Cause Hair Loss....can It?

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Back when I was horrendously sick and undiagnosed in 2005, I had most all of the same symptoms I have having currently with this pots. I had major hair loss back then, and now it's starting again. It's coming out pretty heavily.

I still believe their is more to my illness than just pots, but I doubt I will ever learn what exactly is going on with me. I am wondering if it's possible to experience hair loss with pots? Is that even a remote possibility?

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I don't know if it's related to POTS, but I have it too. My hair is very fine anyway, and now I am losing a lot. :(

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I don't know about POTS but I have some hair loss, but , I do know that thyroid issues can cause hair loss and I just finally tested with some abnormalities in my thyroid. Maybe your having some issue with your thyroid levels again?

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I asked this question when I was at the mayo clinic. They felt that it was not likely. I think I have this problem every time I have a an adrenal surge. My hormones and thyroid are fine, I stopped eating gluten about 2 years ago and most of my hair has grown back.

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My gut would say it's probably more related to nutritional factors but I wonder what the role is that POTS plays in that.

Whether it's absorption or we just feel too badly to eat.

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I think it may be more likely that your hair loss is tied to a particular medication that you are taking, or a nutritional issue. I know I had similar problems with a drug I was taking a year or two ago...

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I agree that it's probably related to something other than POTS. Thyroid, low iron, various other "deficiencies", hormones, stress...all these things can lead to increased hair loss. I think we all have multiple things going on and it's so hard to figure out what symptoms are from what, or how to help them. I hope you get some things figured out soon.

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I think that my POTS was caused by having mono (recurrent EBV and CMV), and when I had my first bout of mono I lost A LOT of hair at that time. It just came out in clumps after I showered.

Do you know if you could have some kind of virus going on as well? Of course, it may be that the virus caused nutritional or thyroid issues that were the real cause of my hair loss, so the virus might not have been the root cause. It's difficult to pinpoint why things are happening when there are so many things going on with our bodies.

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POTS is an unlikely cause. A more likely cause is some sort of metabolic problem as others have pointed out about--thyroid problems, vitamin and/or mineral deficiencies or overages.

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I just finally got my haircut had not had one in a year due to how debilitated I was.

Well I have this disability appointment at the end of the month and I wanted to go in looking halfway decent...

I was able to get the stylist I've gone to in the past and she told me I had lost a lot of hair in the last year.

It feels okay though just kind of thin.

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I'm thinking in my case it's med-related. Since I've been on prednisone it's been coming out like crazy... hoping my Dr can switch me to something else before I go bald :(

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Hello everyone,

I have not posted before.

I believe I may have POTS but I have not been diagnosed.

I have been diagnosed though with sinus tachycardia and have been taking beta blockers for this.

I have fairly thick hair but I have had some noticable thinning at my temples that started with my first pregnancy, when I started taking beta blockers it grew back.

I am on a break from medication for a couple of months to see how my system is going, and my hair has fallen out again.

Weird huh?

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I lost half my hair when I became sick 10 years ago. With my meds I got my hair back which is very thick.

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I also have very thick hair, and I have noticed that I'm losing more of it lately when I shower. I only wash my hair twice a week, and since it's wavy, I just let it dry. I'm thankful for the thickness, because no one can tell that I have more hair falling out - yet!

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I think it is indirectly related especially with so many of us having GI problems-relates to nutrition in our bodies. When I became sick, crashed and was diagnosed with Dysautonomia, I had significant hair loss and had my hair cut short. My Beautician I had been going to for years took one look and feel to my hair and said it was brittle, dry and had a glob in her hand,

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Yep, I agree with all those that said it's probably related to nutritional deficiencies. Also, I did learn years ago that people who have hyperparathryoid(which causes high calcium levels) lose their hair also. You can check some of your labs to see if any signs have shown up in these various nutrient levels.

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Don't know if POTS is the cause or autoimmune issues. I have vitiligo and now alopecia. Not only do I have patches of hair loss but from using the Rogaine the doctors told me to use to stop the hair loss - that caused, what they are calling, a shedding. I had massive amounts of hair fall out and now I'm looking at wearing either a wig or a hat until there is regrowth (if there is regrowth). I don't know if it's worth trying to save my hair - it's so frustrating. Also, the Rogaine use for women causes the facial hair to get longer - there's always laser removal for that. But, trying to decide if I want to deal with that or just the loss of my hair. If POTS isn't enough - there's all these other things that can go along with it. Maybe I'll just be a baldy and start a new fashion. I always wished for purple polka dots (as a visual of being sick)- instead I got white spots on my skin and a balding head. Be careful what you wish for. LOL

Mine is not caused by my thyroid. They have checked me for antibodies for that. I do however, have a whole lot of nodules in my thyroid. But, they are not thinking that this is an issue. Had a biopsy - on the really large one - no cancer.

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I asked my many doctors when my always fine straight hair was falling out so badly in patches (on no beta-blockers or steroids) if this was from damage to hair root during episodes of profuse sweating with all the near or syncopal events and was told 'no'. I went to hairdresser prepared to get head shaved if needed to try to re-grow as it looked so scraggly. She told me that she sees the problem, it is all these curls. She cut it shorter and I have a head full of curls. I had been on Mestinon but was off it all summer before going in for help. I was also taking skin, nail, hair vitamin and Folic Acid. My PCP checked all vitamin levels and autoimmune stuff she could that were all ok. Hairdresser thinks it's med related. Now that she's cut my hair to suit the curls and I'm off the Mestinon again, I'm hoping that wasn't the one that made my hair curl since it'll be gradual months of scraggly hair to get to grow long enough to style it for my short fine straight hair.

Edited by rubytuesday

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I definitely agree it's likely nutritional (or it can be related to thyroid issues but I've had the thyroid issues i have longer than anything else and it never caused hair problems before)...

I actually wear a wig because I lost A LOT of hair to severe malnutrition. And I had thick waist length curly hair until that point though I had gone through spells of losing it through the year leading up to the major hair loss... each time directly related to various severe GI issues. I saw a dermatologist for it even. But now that I am on IV nutrition and doing a lot better I actually have hair growing back in!

But that's my personal story... I have a couple of general things I wanted to add. First off, I suspect my hair loss had a whole lot to do with severe B vitamin deficiencies. Most notably I got scary sick with bad B-12 levels and then my Folic Acid (also a B vitamin) got low... later other ones got screwy but the major hair loss was related to those two. I've also read quite a few things talking about ruling out those same deficiencies in POTS patients. Lack of those vitamins produce a lot of symptoms similar to POTS.

Another suggestion is, when I saw the dermatologist she asked me how much weight I had lost being sick. Her own guess was 30lbs. I actually lost 70lbs within about 9 months. But judging that she guessed a considerably lower number and said the hair loss could have a lot to do with that, I realize most POTSies aren't losing such dramatic amounts of weight but weight loss could be another factor.

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i was dx in 05, and in 09 it started falling out quite a bit. i didnt know if it was POTS, the meds, or what. i too believe i have something else wrong with me the dr. hasnt figured out.

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Talked to a specialist about hair loss and in women there is a female pattern baldness that can occur due to a sensitivity to DHT. (Just like men.) This is produced in the ovaries, uterus and adrenals. Well, I've had a complete hysterectomy and so that just leaves adrenals for me. She said that the docs can't figure out what dysfunction with the adrenals are - but know there is something there. I also have Hyperadrenic POTS with high noriepi levels - again adrenal issues. So, if they could figure out what's causing the adrenal dysfunction - maybe we'd quite losing our hair. The only thing they can recommend is Rogaine and there's a chance that won't work or laser treatments with either a full head bonnet or a comb. They said to wash your hair every day too. If it's this type of hair loss it keeps serbum (sp) down - which contributes to the hair loss. I'm going to get more info later. Will post if anything more of interest.

I have a 3 inch completly round spot of total hair loss. They are thinking mine is connected to autoimmune and could cause total hair loss off my whole body. So, thinking there are more issues than the DHT problem.

Issie

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