Hair Loss Anyone?

[Mytwogirlsrox]

Oh yay! I have. New symptom, my hair is falling out and I have a noticeable thin spot right in the front. I don't have any hair loss issues in my family and I don't suspect it's allopecia. Im really hoping its from the stress of the last couple months. Since I was diagnosed in Feb I lost 15-20lbs, and had horrible physical anxiety symptoms all have resolved, but now I'm shedding my hair I hope it's not POTS thing !

I'm bummed I have beautiful long hair, and now it's broken and thinning I feel so vain

[westernmass]

I have noticed my hair thinning over the past several months... Although tbh I think this may have started before pots.

I'll be interested to see how common this is among other potsies as I've wondered this before but couldn't tell if the two were related.

[songcanary]

I went through this. In my case it was a combo of ferritin deficiency and hypothyroidism. By the time I got diagnosed I had lost half my hair. I was in a pixie, ugh. If stress is your cause, try bumping up the biotin or take one of those formulas for nails and hair. Even so, it will take at least six months for regrowth. It's such a slow process!! I feel for you.

[jpjd59]

My daughter had this happen to her. Luckily she had a thick head of hair to begin with. It all started with POTS - not sure what caused it. It seems to have slowed down now, perhaps because she is on multiple vitamin supplements.

[mwise]

I am sorry you are experiencing this. I lost my hair too. I did cut it short (recommended by my beautician) and like songcanary mentioned used one of those supplements for hair from a local health store (they helped me find the right supplement). I also had help from my beautician-bought hair shampoo/conditioner specific for damaged hair. This may sound gross, but I also stopped washing it everyday per my beautician every 2-3 days because it was so brittle and dry. It took a good 6 months to get my hair to being healthy again. I am glad to say, It is staying healthy, but I gave up the length and keep it short. Good luck.

[Mytwogirlsrox]

I am sorry you are experiencing this. I lost my hair too. I did cut it short (recommended by my beautician) and like songcanary mentioned used one of those supplements for hair from a local health store (they helped me find the right supplement). I also had help from my beautician-bought hair shampoo/conditioner specific for damaged hair. This may sound gross, but I also stopped washing it everyday per my beautician every 2-3 days because it was so brittle and dry. It took a good 6 months to get my hair to being healthy again. I am glad to say, It is staying healthy, but I gave up the length and keep it short. Good luck.

I'm so glad to hear that your hair is healthy now. That gives me hope! I have started to wash it every other day with a dandruff shampoo (I heard on Dr radio that it helps reduce any inflammation if there is any and should help regrow hair) I just work out and my hair gets sweaty so I can't not wash it every other day, it gets gnarly looking.

[Mytwogirlsrox]

My daughter had this happen to her. Luckily she had a thick head of hair to begin with. It all started with POTS - not sure what caused it. It seems to have slowed down now, perhaps because she is on multiple vitamin supplements.

I'm so glad it slowed down. I started on biotin last week and iron multivitamin... Hopefully it will

Slow it all down too.. Doesn't help that I lost a ton of hair after I had my baby, so it seems I started off a little more thinned out than normal

[Mytwogirlsrox]

I went through this. In my case it was a combo of ferritin deficiency and hypothyroidism. By the time I got diagnosed I had lost half my hair. I was in a pixie, ugh. If stress is your cause, try bumping up the biotin or take one of those formulas for nails and hair. Even so, it will take at least six months for regrowth. It's such a slow process!! I feel for you.

I do know for a fact that I'm not hypothyroid and my lab values seem with in range for iron... But I did start a multi with iron just in case. I'm hoping that time will bring my hair back!!

[Mytwogirlsrox]

I have noticed my hair thinning over the past several months... Although tbh I think this may have started before pots.

I'll be interested to see how common this is among other potsies as I've wondered this before but couldn't tell if the two were related.

I'm not sure if they're related to be honest, I'm really hoping its all related to the stress of being diagnosed... My cortisol was through the roof ... I know stress can cause a shedding 1-6 months after a stressful event I think it's called telegon effluvium

[Ashelton80]

YES! Unfortunately, I started experiencing this lovely addition to symptoms about 6 weeks ago. I attribute mine to several back to back stressful events with my grandmas sudden passing as sort of the straw that broke the camels back. It started slowly falling out right after her funeral and then we moved from our home of 5 years into a new one and I feel like I've lost 1/3 of my already fine/thin hair. .

I've had pots for years and this has never happened before. That's why I think it's the events.

I don't think you are being vain at all! I think we have to deal with enough and I know for me this was not ok! A friend of mine with POTS recommended a supplement called Bio Sil. She said it took a few weeks, but it helped.

[Hope]

I've been losing a lot of hair lately. When I first got really sick last year it was really coming out. Then I stopped losing it for some reason. Now I am losing it again. Thankfully I had a full head to start with, but I see a lot of good advice on here!

[issie]

Unfortunately, I have alopecia and other types of hair loss. I have been to see a hair restoration doctor and he informed me of some interesting things I didn't know. First off, when you start to shed your hair - you actually lost the hair 3 months earlier. It takes 3 months for the hair to actually fall out after it's turned loose. Depending on what the reason is for the loss - depends whether or not you will get it back or not. I've been doing a laser cap for about 6 months now. If I was going to get some back, it would be back and I haven't noticed that it's made much difference. If it's due to DHT issues - they recommend washing it every day - to keep the sebum off the scalp and keep the pores unclogged. There are some meds they can give you to counteract DHT. (That's a type of testerone - that is converted into another hormone and causes hair loss.) If you are susceptible to this, you can very well develop female pattern baldness. They do recommend Rogaine - only the foam kind that's 5 % minoxidil. Some people however, have severe shedding just with this med and it can lower your bp. It was first used as a blood pressure medicine and was found to help grow hair. The only problem is, the second you stop using it - you will start to lose your hair again.

Where I lost my hair in clumps - is growing back in - solid silver. Pretty color actually. But, that is probably due to my vitiligo. I do have many autoimmune issues and it could very well be affecting my hair loss. I have some other auto-antibody test that have come back positive - but, not sure what the test mean yet ---so not talking about it just yet.

Depending on how bad your hair loss is, there are cute wigs, hats, caps, hairpieces etc. Or you can go for the shaved look and just be proud you are still alive and somewhat functioning. I know some women who have gorgeous hair and wear a wig nearly every day. They like it and enjoy being able to be different in their appearance daily - if they so choose. It's very stressful - especially for us women - but, if we have no choice over it and there is nothing we can do ---we just have to accept it and do the best we can with whatever we get handed. I've exhausted every avenue and talked to some of the best doctors about this. Not a whole lot can be done. Since I have EDS - hair transplant isn't an option. I was told my results would not be good because of the laxity of the skin and connective tissue and the doc. said he wouldn't even attempt it.

Issie

[leydengs]

My hair falls out like crazy. I have to sweep up the bathroom anytime I comb out my hair or do it in the mornings, it's so gross. Thankfully I have really thick hair. I've had to my thyroid checked but of course just like everything else, all results came back normal

[diamondcut]

How many people on here would put hair loss down to the amount of drugs they have tried over the years, and what it has done to the body inside that we can not see.

I wonder if its the drugs more than the pots in some cases.

[Kellysavedbygrace]

I started noticing my hair falling out several months back. (March)- about 6 MOS after I became sick, about 3 MOS after starting Fludrocortisone. I consulted w my PC dr he suggested it might also be the beta blocker I was on. At the time I was already wanting to getoff Cymbalta (for sex drive related side effects). So I slowly tapered off all 3 in April and by May was off them. The hair loss seemed to get better (a little bit- but still more loss than normal.). Then in July, a flare had me in the ER and the dr gave me a steroid pack- 7 days of prednisone. Within a week my hair loss doubled- I went in to see my beautician and she tried to hide it from me but I could see her crying as she swept my hair away after every brush.

I have not been back bc I'm not sure what to do. I normally color my hair but I think the chemicals are too harsh and will destroy what hair I have remaining. Like many others, I'm fortunate to have thick hair to start with, but now it is thinning and damaged. I have worn it long and want to keep it long if at all possible. It does not look healthy like it did last year. I've started washing only with natural products- no sulfates, glycerin, etc. But my hair looks horrible. I'd love any ideas, suggestions.

[issie]

Kelly, It's very upsetting when we as women lose our hair. It's supposed to be our "crown" and it affects how we feel about ourselves. There are many beautiful women who have little or no hair. One of the top Beauty pagent contestants - has no hair and wears a wig.

I'm losing mine and have lost it in patches from alopecia - which is an autoimmune disorder where your body attacks your hair. I have baby fine med blond hair - so, thankfully it doesn't show as bad as a dark hair color would. But, I have taken up wearing hats,caps and scarves. I also have a real trendy wig. When I went in for the fitting of the wig ---I was crying and just couldn't seem to get a hold of the idea of not having my own hair. Thankfully, the women that helped me and another customer who was in there ---all made me feel much better. They gave me confidence to walk out of that store with that wig on my head --with my head held high and a feeling of "I look gooooddddd".

If there isn't anything that can be done about it. (And there isn't --I've been to the top doctors and even saw a hair restoration doc. I can't have that done because of Ehlers Danlos.) Then you have to accept what life hands you ---hold your head up. And go on with life. Don't let your hair define who you are. You are who you "think" you are. You can be beautiful with or without hair.

Don't feel alone. There are many others of us that have either lost or are losing their hair. It's terribly disappointing and it takes time to get your emotins in check and get your head around it. My husband the other day ---leaned over and kissed me on the front, top of my head and said ---"Ohhhh, now there's just more for me to kiss on and love". I thought that was the sweetest. He has embraced this better than I have. It is nice to have a loving husband by your side.

Issie

[brethor9]

I have noticed this too since the onset of my illness...but I also had a partial hysterectomy in 2008 so I think its most likely related to hormones. Luckily mine is super thick and I can wear it super short.....my hubby actually hates long hair on me...thank god

[leydengs]

diamondcut - Mines not from drugs because I really haven't taken any. I tried some when I was first diagnosed but the side affects were so bad and I was a single mom of 2 very young kids so I couldn't risk it so I don't take meds. I have my thyroid checked but that always comes back normal but than again what's new HA!

[Kellysavedbygrace]

Issie, I read your response and cried. I know you are right but I'm struggling to accept it. I keep pulling my hair back in a ponytail and the width of it keeps shrinking. I used to not be able to use this one barrette because it wouldn't hold all my hair. Now that one doesn't even stay in because there is not enough hair.

I'm not at the stage of needing a wig yet. Yet.

Good words of wisdom. I will reread your post many times. TY

[handmadebyemy]

I had this problem last year. Make sure to have your thyroid checked as well as your iron levels. Both hypothyroidism and anemia can cause hair loss. Also extreme stress following a hospitalization, surgery, or major illness can cause hair loss too. My hair also lost most of its natural curl when it started thinning but thankfully within a year or so it started returning to normal. I still have some thin spots but I try to cover them up as best as possible.

[issie]

Issie, I read your response and cried. I know you are right but I'm struggling to accept it. I keep pulling my hair back in a ponytail and the width of it keeps shrinking. I used to not be able to use this one barrette because it wouldn't hold all my hair. Now that one doesn't even stay in because there is not enough hair.

I'm not at the stage of needing a wig yet. Yet.

Good words of wisdom. I will reread your post many times. TY

You are welcome ---hope you can come to terms and get your confidence. It takes awhile, and the emotions you are feeling are perfectly acceptable and normal. But, if there is nothing to be done ----oh well-----there is nothing to be done. At that point, I just had to accept it and go on.

Issie