My Hair Is Falling Out...

[coloredblood]

SO! My hair is falling out. Not just a little. A whole lot.

I asked my new doc who doesn't know pots and she said it's because i just had surgery under General anesthesia. I've had 7 surgeries under general and never has my hair fallen out. I also don't think this doctor knows me of cares that much (she is temporary).

Anyway, has this ever happened to any of you? Any ideas as to what is causing it?

I haven't changed products. No more stress than normal. I checked my meds and they aren't the cause.

~nancy

[kayjay]

Nancy, I feel your pain honey... I have posted on this subject many times. This happened to me when when I had my first bad flare at 25 and again this year. I am 36. I am worried I will be bald. I have fine hair but i used to have lots. Now I have lots... All around the house!

Every time i wash it I think i will cry. Anyway for me I think it my bodies reaction to my hyperadeneic POTS flares. A few months after a big flare my hair starts to come out... and out. I have had my thyroid and hormones checked and i have been to the dermatologist. No luck.

The only think that I can tell you is that last time this happened to me it stopped after about 6 months... I hope it will stop this time. Right now I am putting tea tree and jojoba oil on my scalp, bushing my hair when it is dry, taking a suppliment, and praying. Oh and cleaning hair up everyware- Why did we get a dog that doesn't shed?

If it makes you feel any better my 11 year old told me this morning that she knows my hair is falling out but "you can't really tell mommy". I think it looks worse to us than to anyone else. If you learn anything please write back to me b/c I would love help with this too. Kayjay

[fighting4health]

My hair falls out too. I've gone blonde to try to hide it. I think mine might be hormone related because I've noticed changes when going on and off birth controls, but nothing makes it the way it used to be. All my hormone levels are stable though and an endocrinologist couldn't figure it out either. I even tried rogain for women and all it did was make my scalp really flaky.

[Angelika_23]

Mine does this too after a really bad flare. Nothing seems to help it. I find if I go too long between hair washings it makes it worse. I hope you can find a solution. If so, please share!!!

Angela

[poppetkazutaka]

SO! My hair is falling out. Not just a little. A whole lot.

I asked my new doc who doesn't know pots and she said it's because i just had surgery under General anesthesia. I've had 7 surgeries under general and never has my hair fallen out. I also don't think this doctor knows me of cares that much (she is temporary).

Anyway, has this ever happened to any of you? Any ideas as to what is causing it?

I haven't changed products. No more stress than normal. I checked my meds and they aren't the cause.

~nancy

My hair has been falling out in clumps when I shower and through the day when I brush it for about three or four years now. At first my mom said it was the antidepressants, but I stopped those for two of those years so I don't think it was. The hair falls out so much I have to clear out the drain once a month because it clogs. XD I used to have very thick hair and now I look like a recovering cancer patient its so thin and fluffy.

[potsgirl]

I have such a hard time washing my hair that I only do it twice a week, and then let it dry. Very minimal brushing and the only styling I do with a hair dryer is my bangs. My hairdresser told me that leaving my hair alone as much as possible was the best way to keep it....but who knows? It sounds like this approach doesn't work for Angela.

The other thing I wanted to suggest was to make sure your shampoo is mild and that you're not allergic to it. I had this happen to me. I'm allergic to a main ingredient in shampoo, so I have to stick with certain brands I know are safe. Just a thought...

Cheers,

Jana

[futurehope]

I have the same problem and it is very depressing. I used to have long thick dark hair, and now I've chosen a lighter color and shorter.

I've had thyroid tests. Mine was a bit low for the last 3 years. I've had ferritin (iron) blood tests. I'm in the normal range but lower than I used to be so my doctor is letting me take supplemental iron.

I take biotin 2 times/day. I don't think it helps, but feel I must keep taking it.

I take liver pills 3 times/day for my B vitamins and other minerals.

And I think I am going to stop coloring my hair because it makes it break more easily, even though the hairdresser says color is not damaging.

I've even had my scalp biopsied by a dermatologist to see if they could find anything. The results came back: androgenic alopecia, chronic telogen effluvium. The chronic part means I'm losing hair sooner than I should and they don't know why. The other mouthful means "female pattern baldness".

I cannot use the "special" expensive shampoos for thinning hair because it gives me a headache. I must be allergic.

Maybe we all have some sort of allergy to a product we use?

Anyhow, I understand how diffcult this is. I'm having a problem too.

[Tammy]

Mine does this when my thyroid level dips... even by the tiniest amount as I'm hypersensative to thyroid levels. When I was diagnosed with a thyroid problem, my level was a 5.5 tsh and the doctor said he would consider it in the normal range, but because my family has a history of thyroid conditions, he decided to prescribe meds for it. Huge difference. My hair didn't fall out anymore. I usually try to stay between a 3 and 3.5 tsh, as any higher and my dysautonomia gets worse in a hyperadrenegic way. Any lower, like 4.5 - 6 and my hair will start falling out again and I will get very POTSY in a non-hyperadrenegic way. Having thyroid disorder and Dysautonomia is a bad combination and having hair fall out is minor but it ***** to have to clean up and see our scalps show through. I also have very dark brown hair that is long and thick, but have gone through phases when it has gotten thin, but when my throid levels are where MY body needs them to be, it grows back in. So if your doctor has tested your TSH and said it's in the normal range, maybe for the lab tests it is, but for YOUR body, it isn't.

[poppetkazutaka]

So if your doctor has tested your TSH and said it's in the normal range, maybe for the lab tests it is, but for YOUR body, it isn't.

I've heard that before in books. :3 Mine is 1.5, and they say its normal, but to me that just seems so slow...

[Janey]

I'm so sorry this is happening to you.. it hasn't happened to be yet but I wouldn't discount it happening very soon, as I get more symptoms every day. I hope that it will just be temporary and will be absolutely fine in a few days/weeks.

Just a shot in the dark and the most obvious answer - isn't one of the main issues with POTS blood not getting to the head? Maybe there just wasn't enough blood/oxygen/minerals getting to the hair follicles and so the hair didn't or couldn't grow? I know it's not a great answer, but at least it means it only happens during flares and at no other times? I don't know about you, but if I can think of WHY something is happening, it makes me feel a bit better.

Janey

[futurehope]

Poppet,

TSH of 1.5 means you are on the HYPER side, not too low. 1.5 is in the normal range, I think, but I just wanted to clarify for you which side you are on.

Janey,

I've already thought about what you've said and it makes sense. The circulation to our scalp MUST be hampered.

For anyone else out there, especially Tammy,

If your thyroid is on the hyper side FOR YOU, does that cause you hair loss as well? (I mean I know that thyroid hormone being on the low side can cause hair loss.)

[MelissaCrystal]

When I'm stressed (body or mind), mine starts falling out at an alarming rate. Now I have all these little short hairs along with my long hairs and every day is a bad hair day.... *sigh*

[kayjay]

Ok. I just took a short nap before my little guys get home from school and I took a bath. I know it sounds crazy but I counted hairs ( I have not brushed) 43 hairs on my pillow, 189 give or take in the tub.

I am wondering how many of us with this problem are Hyperadrenic pots people. I major flares this year ( March and April) I wonder if it takes a few months for the stress to make you hair fall out (I mean Chemical not mental stress)

Also I think if it is thyroid my eyebrows should be thin on the ends right? Mine seem ok. I treat my hair very gently and I do massage my scalp. YIKES I AM SAD... a vain girl!

[poppetkazutaka]

Poppet,

TSH of 1.5 means you are on the HYPER side, not too low. 1.5 is in the normal range, I think, but I just wanted to clarify for you which side you are on.

Really? Maybe I'm remembering the wrong number then... XD Because I always had them tell me it was slow but not slow enough to warant any treatment. I've had so many tests I have to keep the stack of papers because I get so confused and forget. XD

[futurehope]

Poppet,

.4 - 4.5 is what Quest considers normal for TSH. I'm strongly suspecting you are referencing another measurement, like Free T4 or another measurement.

[poppetkazutaka]

Poppet,

.4 - 4.5 is what Quest considers normal for TSH. I'm strongly suspecting you are referencing another measurement, like Free T4 or another measurement.

Yeah, I'm thinking I'm remembering a number they tested before they checked the TSH. Like I said, I've had so many tests I get my numbers mixed up between what I read and what it was and what it should be. XD

[potsgirl]

An 'average woman' tends to lose 50 hairs a day. At least you're above average...(everyone can groan now).

[kayjay]

Jana- I'm falling down...laughing .

[tinkerbella]

Opra had Dr Oz on and he said grab the top of your head and pull away.The number of hair in your hand is the number of hair you are losing a day. I was surprized as I used to lose sooooooo much till my hypo thyriod was treated. ALONG WITH MY rynaunds meds, and

mestinon and wondered could these two meds be doing something as my hair does not fall out now.

I still have my own color hair at 50 something years old, infact not to go off the subjuct but, has this happened to anyone else my color has got richer and my eyes even bluer?

I know mestion can give hyperpigmation, doc told me when I first started it that all his patients had this healthy glow.

When I felt like crap... lol!

Back on subjuct, I ALSO don't blow my hair dry and wash it 2 times a week now. I wash and shake dry, cut it about shoulder legnth on an angle.

USED TO HAVE very long hair till my rhumy said cut it so you won't lose so much.... Also, don't blow dry due to very dry eyes, but the whites are so white now. But they hurt so bad, I know I need new plugs and an eye appointment in my spare time. DO OTHER ACTUALLY HAVE SPARE TIME? HAVING POTS is a full time job!

xxxx's

bellamia~

[kayjay]

Ok Nancy, After counting the number of hairs in the tub, I did a little web surfing. My hair falls out with little bulbs ( or club it might be called) at the root. This is supposedly caused by trauma, usually weeks or months after the stressor. I know before I was diagnosed this year I had several horrible flares and think that was my trigger. If so it will resolve in 6 to 9 months UGG!

Look at the hair you have lost and see if there is a little scalp colored bulb at the end. If so, this is causeed after a stress when new hair pushes the old hair out (although I have yet to see new growth).

If you don't see bulbs attached you may want to go to the dermatologist and have a biopsy done of your scalp. Sometimes hair loss is more of an autoimmune thing (although this tends to be "patchy").

I hope this stops soon (for all of us). IT IS SAD!

[Elfie]

My hair started falling out right after I started having POTs symptoms. I have always had fine hair, but I used to have a ton! Now it looks really sad because you can see through it. I lost a ton, both from all over my head and in pencil-sized clumps. I was originally told it was from birth control pills, but I have dealt with pills before and never had this problem. Then when I was diagnosed with pots, the docs at mayo said that probably caused it. It does grow back, but every time I start to have more hair I go through another bad spell and start losing again. I also started going white at the same time. I am sure it is related to pots, because my mother did go gray when she was in her early thirties, but I started when I was 18! I'm 20 now and have a noticeable white streak. I love my natural hair color and am sad about this. It would be impossible to replicate with dye and I would look funny with a red or blonde streak where the white is (plus that hair is probably dye resistant) so I go around with my thinning white hair and my eye bags and wrinkles and people are constantly asking me if my kids are in the 4th or 5th grade. I don't have kids! If I did and they were 5th graders I would have to have had them when I was 10 years old!

POTs ***** (the youth out of you)!

[sue1234]

Yep, losing hair. Used to be thick, now just about equal to a thin hair person. I started with a gray streak at age 28. I used to get compliments back then, as you said, it is something that can't really be duplicated. However, in my mid 40s, I had more gray than most my age. Oh well, IF I actually had a social life, it might bother me.

The three things I remember to affect hair loss are, like the previous posters said, thyroid and ferritin levels. The other thing is people who have hyperparathyroid complain about hair loss.

[MomtoGiuliana]

I go through episodes of hair loss (ie noticing a lot more hair than usual falling out). It doesn't seem to be connected to anything as far as I can tell. First episode in my early 20's and I was so terrified I would go bald. In the end it was unnoticeable. I've wondered over the years if it was connected to hormonal changes, thyroid, etc. It can be disturbing.

[ajw4790]

Hi,

Add me to the frequent hair falling out club! For about as long as I remember by hair has always fallen out more than anyone I have ever known, and I get teased about it all the time... But, yet I have quite think hair. (thankgoodness )

I have had bouts of where I lose chunks of eyelashes or eyebrows to the point you can see a mm or so gap in my lashes. This is supposed to be due to a shock to the body, when it is expressed like this. In this instance I had just started taking amitriptyline. So, the dr. said this was the cause.

Other times like more recently I have not had any med changes for months, but have increases in my crazy hair loss. This for me is due to low iron (low ferretin). This is a characteristic symptom. Especially if you are very temperture sensitive (can't get warm), have irregular menses, or have any cravings for high iron foods or things like ice.

Low iron can affect so many things, and drs. tend to overlook and not measure patients ferretin level. They only look to see if you are straightforward anemic by looking at your hemotocrit etc. on a routine blood test, they don't go as far to look at ferretin. I had extremely low ferretin (3 when it should be at least 60) before they started to figure out what is going on. It is not an easy catch. If you have the symptoms talk to your dr. about having your ferretin level tested.

Treating it has helped me some. I still have more than enough symptoms, but the low iron makes it significatly worse. I am sure it is still quite low, so I have a long way to go...

Hope that can help!

[MomtoGiuliana]

Interesting, I have wondered if it could be connected to low iron. I have a bit of a problem with anaemia at times. Never had ferretin tested.