Hair loss re-visited

[POTSparent]

Hi to all:

This is to all that have experienced hair loss more than you consider to be normal. I recognize that many have not, but a number of dysautonomic visitors to this site have.

I'd like to compile some feedback to take to a doc who is of the opinion that hair loss is not a symptom associated with dysautonomia while I, on the other hand, feel that it's due to an imbalance (whether caused by the body or by medications) that's very much tied to dysautonomia's general nature of "imbalances".

My questions can't be well-handled by the "poll" function at this site, so to those who have experienced episodes of hair loss .... I'd appreciate a reply and I'll compile info after a while and re-post.

1) What's the most typical description of any hair loss?

a) constantly thin hair problem

problem comes and goes -- general overall thinning

c) problem comes and goes -- lose "patches" of hair

d) problem comes and goes -- extensive overall loss

2) Assuming answers b-d to #1 above, has the frequency of problem been:

a) happened one time only

happened multiple times

3) Was your doctor's opinion that the problem was the result of:

a) didn't get doctor's opinion

long-term reaction to medication -- florinef

c) reaction to medication -- beta blocker

d) reaction to medication -- SSRI

e) body chemical imbalance -- mineral (e.g., zinc, manganese)

f) body chemical imbalance -- hormone (e.g., cortisol)

g) stress

h) general hereditary

i) other __________

4) Assuming received doctor's opinion to #3 above, was that doctor a:

a) dysautonomia specialist

endocrinologist

c) dermatologist

d) other specialist (e.g., cardiologist)

e) general practice (incl. gyn)

Additional comments welcome.

[MightyMouse]

Hairloss, in general is NOT a commonly reported symptom of autonomic dysfunction. I've never had an issue with this.

Rather, it's more closely associated with endocrine disorders or hormonal disoders, as well as infections of the scalp.

http://www.nlm.nih.gov/medlineplus/ency/article/003246.htm

Nina

[CaitlinRose]

I've had hair loss since I got sick 4 years ago. When I was little I had a huge thick head of hair and now it is very thin. (Its a general overall thinning). My doctor sent me to a dermatologist for it who said it was possibly due to the beta blockers but it is most likely nutritional (I'm on tube feeds and have a hard time with intake). Hope this helps.

God bless,

Caitlin

[danish]

Hi,

I also have had an overall thinning of my hair, but I used to have very thick, unmanageable, hair so it actually hasn't bothered me too much. My dysautonomia doctor said that the hair loss was due to decreased blood getting to my hair follicles. It wasn't horrible, just a slight thinning, and pretty much went away once I started treatment.

Good luck!

Sarina

[steph37822]

oops

[calypso]

Here are my answers:

1)D

2)A

3)G (one doc's opinion); another admitted he really didn't know

4)B & D (told two docs about it)

My hair loss was extensive for about four months. It occurred 5-8 months after the POTS struck. However, I should also say I was postpartum and this was likely contributing. I was told my hair loss went beyond the normal postpartum thing. I have not regained any of the hair, and that was more than 6 months ago that I lost it.

Amy

[MomtoGiuliana]

I've experienced episodes of hair loss over the past 10 years +. Nothing dramatic. It was worst in my early 20's. I was diagnosed with Hashimoto's at age 30. My opinion is that my hair loss pattern has most likely been genetic, as my sisters have all seen a similar pattern, and I am the only one with thyroid disease (all have been tested for it). I don't think the hair loss in my early 20's was b/c of low thyroid, although I do realize that causes hair loss. Nor do I think it was POTS, as my POTS symptoms didn't seem to show up in a recognizable form until my mid to late 20's.

Katherine

[POTSparent]

Hi Nina,

I know that hair loss isn't on the "official list" of symptoms. And, given the variety of meds used in treatment, I'm not saying that hair loss might be a factor without those meds. But let's think about what's on that "official list" -- chest pains, heart palps, dizzy/lightheadedness, gastrointestinal issues, fatigue, and a long "et ceteras" listing. General imbalances of the system. And one can have symptoms more in line with gastrointestinal IBS, or more in line with fatigue CFS, or more of the dizziness POTS issues ..... and all be consistent with dysautonomia.

Even Dr. Grubb -- from responses of others both now and in the past -- keeps answering "it's probably the meds" whether that be florinef or something else. And some of the Dynakids have had hair loss problems. Still, through it all, none of the dysautonomia "experts" provide any sort of definitive answer.

I'll concede that hair loss may be impacting only a small portion of the dysautonomic patients, but not that it's not a part of the dysautonomic picture. Maybe it's caused by imbalances consistent with dysautonomia. Maybe it's caused by the meds used to treat dysautonomia. But either way, it's part of the problem for some of the patients.

Anyway, by trading notes with some that have suffered hair loss, maybe some clues can be discovered.

POTSparent

[StaceyYount]

HI,

I always wondered if this was a symptom. My answers are

1. B

2.B

3.A and I, My traditional chinese medicine doctor says that the spleen or maybe my liver (??) is responsible for hair and skin among other things in their theroies of the body. And since one of my main problems is a spleen liver imbalance it made since to her that my hair was falling out. I don't inderstand the theroy but that is what she says.

4. D. Traditional Chinese Medicine docotor who has a PhD in oriental medicine and treats with acupuncture and chinese herb combinations.

I am on no meds right now and still my bathroom floor gets covered, so do my clothes and when I take a shower and put conditioner in I get hair all over my hands. My hair use to be very thick and now it is thin. It is also a lot drier! And very grey though I am only 37 I have been getting grey since I was 18 and now am almost totally grey.

I also think my hair is growing a lot slower. My hair use to grow out very fast but now it seems as if it does not go much past my shoulders. I haven't had a haircut in months and it has not gotten that much longer.

Intersting..

Stacey :-)