Aimes Posted February 26, 2013 Report Share Posted February 26, 2013 Anyone else? I used to have incredibly thick hair, now it's falling out by the hand full! What hasn't fallen out, is broken off. I literally have chunks of hair that have broken off and are only about an inch long. The only meds I am on are zantac and zyrtec and this started before I began taking them. Has this happened to anyone else? Any advice on ways to make it stop or at least how to strengthen the hair I still have? I know it's not a debilitating symptom but it is making me sad! Isn't it bad enough that I have to feel like crap, now I have to look like crap, too?! Ugh! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted February 26, 2013 Report Share Posted February 26, 2013 My daughter used to have a thick head of hair but as soon as she developed the POTS symptoms her hair started falling out like crazy! I know it is not the worst symptom but still it's an upsetting one. Quote Link to comment Share on other sites More sharing options...
Lel Posted February 26, 2013 Report Share Posted February 26, 2013 Me too. I'm in the same boat with incredibly thick hair. I've had more of a problem with losing my hair than with breakage. I wake up in the morning to find hair in my bed and on the floor. My rheumatologist recommended that I try biotin. It's helped, but I'm definitely still losing. Is your hair also super dry? (My hair, skin, eyes, and throat are all crazy dry.) My hair dresser suggested that I try adding olive oil after a shower. I've actually seen a big difference with this and am hoping that I'll start noticing less breakage. I'd been assuming that my hair loss is connected to my autoimmune issues rather than my POTS but perhaps not.It is sad. For most of my life, people have identified me by my big curly hair. I keep telling myself that it's how you carry yourself that really determines whether you can pull off a look. Did you see Robin Roberts at the Oscars? http://static.entertainmentwise.com/photos/Image/585robin.jpg Quote Link to comment Share on other sites More sharing options...
Lel Posted February 26, 2013 Report Share Posted February 26, 2013 My daughter used to have a thick head of hair but as soon as she developed the POTS symptoms her hair started falling out like crazy! I know it is not the worst symptom but still it's an upsetting one.Hi jpjd, do you know what causes this to happen? I haven't run across it in any of my POTS research so far. Quote Link to comment Share on other sites More sharing options...
Aimes Posted February 26, 2013 Author Report Share Posted February 26, 2013 Lel, I'm currently suspecting that I may be dealing with an autoimmune issue. I'm waiting for an opening at Mayo to go through the testing. I've always dealt with dry eyes, skin, and hair. I have to be careful what products I use because my skin and hair are so dry and I use daily moisturizing eyedrops. So, that might be where the breakage is coming from, even though it's normally not this big of a problem. I will definitely try the biotin and the olive oil! Thank you for the tips! Robin Roberts looked gorgeous! Kudos to her for being so brave! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 26, 2013 Report Share Posted February 26, 2013 Many of us seem to experience this. It's been a popular topic here. My hair also started falling out in my 20's around the time I started noticing odd symptoms that turned out to be POTS. I'm not bald yet! But I know it is very upsetting. Quote Link to comment Share on other sites More sharing options...
trice125 Posted February 26, 2013 Report Share Posted February 26, 2013 I loose my hair too when my symptoms are flared up but my dermatologist has told me that it's just a stress response from my body and all of it plus more will come back once my symptoms settle down (and it always does). Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted February 26, 2013 Report Share Posted February 26, 2013 My daughter used to have a thick head of hair but as soon as she developed the POTS symptoms her hair started falling out like crazy! I know it is not the worst symptom but still it's an upsetting one.Hi jpjd, do you know what causes this to happen? I haven't run across it in any of my POTS research so farLei:In my daughter's case we believe it is an autoimmune issue. Her POTS symptoms started after a viral illness. Since then she has also been diagnosed with CFS;ME so we are now dealing with an infectious disease specialist who is trying her on an anti-viral med to see if he can get the virus that he believes is causing the issue to be suppressed so that her immune system can take over.Hopefully we will see improvement within 3-6 months!Pam Quote Link to comment Share on other sites More sharing options...
ddschool Posted February 26, 2013 Report Share Posted February 26, 2013 Yea, I'm having a problem too w/ my hair. I thought it was just b/c I was getting older, but maybe not. I went to Ulta & bought this Nioxin kit. It is shampoo & scalp treatment for thinning hair. After a week or so, I noticed a lot less coming out/breaking. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 26, 2013 Report Share Posted February 26, 2013 I've had pots for a long time and never really associated hair loss with it. I'd have spells where I would loose a bit and it would grow back. The most common autoimmune disease associated with hair loss and body moisture issues is Hashimoto thyroiditis. As it turns out after suspecting for many years I had thyroid issues with nonactive nodules and being told my tsh was normal and that I didn't have thyroid problems. My tpo/ab's came back positive for hashi. My free t3 was low. My FT3 and FT4 were at opposite ends of the range. My hair loss first got worse with just synthroid and has now stopped with the additon of T3.Thyroid disease can also cause problems with your hr/bp. I would suggest anyone with these symptoms make sure their doctor checks FT3/FT4 and tpo/abs before dismissing thyroid problems. With hashi your goal is to suppress the tsh and try to get the t3/t4 around the same number. Quote Link to comment Share on other sites More sharing options...
Aimes Posted February 26, 2013 Author Report Share Posted February 26, 2013 Thanks Arizona! A friend of mine was just diagnosed with Hashi so I've been doing a little reading on it. I always assumed since my tsh is always normal, I couldn't have it! I'll definitely bring it up to Dr. Goodman when I see him in April! Quote Link to comment Share on other sites More sharing options...
Angela Posted February 27, 2013 Report Share Posted February 27, 2013 yeah i loose hair but cannot connect it to aging or drugs i have trialed. i dont get bald spots or anything but my hair has thinned. i think that could also be due to aging, my hair was thicker (yet still vey fine) in my 20's then in my 30's which i think is normal Quote Link to comment Share on other sites More sharing options...
Lel Posted February 28, 2013 Report Share Posted February 28, 2013 Thanks again Arizona. Like Aimes, I too have a normal tsh, and so that's as far as the investigation went. Quote Link to comment Share on other sites More sharing options...
Darlene Posted March 6, 2013 Report Share Posted March 6, 2013 http://en.wikipedia.org/wiki/Prostaglandin_D2 Quote Link to comment Share on other sites More sharing options...
Aimes Posted March 6, 2013 Author Report Share Posted March 6, 2013 That is some great info Darlene! Thanks for the link. Just another symptom that may be caused by a mast cell issue. Very interesting! Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted March 6, 2013 Report Share Posted March 6, 2013 Me too. Started when my symptoms started Quote Link to comment Share on other sites More sharing options...
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