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Does autonomic issue cause hair loss or it is more likely thyroid or meds? I know, everyone loses hair every day- but it has gotten to where I don't want o wash it for fear of losing more! Just comes out in clumps!!! I've lost about 40-50 % of my hair! Luckily it was thick to begin with.... But this is really starting to bother me. Gee, I get to be bald too?

I can't get ANY endos to listen. TSH is hyper- .08 I think or .05. T3 T4 fall in very 'hypo" normal range. All I hear is that my T3 and T4 are"fine" but very borderline but then something is up then if my TSH is off, right? they just say its my autoimmune disease which is very aggressive just messing up the NUMBERS but your thyroid is fine, I'm so tired of hearing about this "Aggressive Autoimune Disease" that apparently HATES me! But not treating the issues, same with my kidneys- still aren't back to normal since IVIG rejection in Jan. What do I hear??????? "Well, your Aggressive Autoimune Disease....." Wel maybe we should find out what's WRONG with them instead of just waiting to get out of my system. Who knows? It may NEVER be out and mutated with my other cells OR it could be out and just damaged my kidneys! Ugh!

No one listens and I hate to be that pest of a patient but I am. But I have gone through enough! Can we PLEASE leave bald off the list!!!!!

Jen

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I went through this. I lost half my hair before I finally got a sympathetic doctor to take me seriously. At the time my TSH was 1.5 but my FT3 and FT4 were both low normal. But I had all the classic symptoms of hypo; the fatigue, the chills, the cold hands and feet, dry skin, peeling nails, low body temp, in addition to the hair loss. It was my allergist of all people, who tried me on a trial of Armour and it was like a miracle.

I don't know about your low TSH, I'm no expert. Perhaps an integrative doctor could be of more help to you. Endos are notoriously blind when it comes to problems that aren't outright killing us.

Also, ferritin deficiency will cause hair loss (I had that too) at any level less than 70. Wilma Bergfeld from the CC told me that personally. She is the head dermatology researcher and she said the lab ranges need to be raised for women.

I know exactly how you feel; the last thing we need is a kick in the pants like baldness! I wore a pixie for over a year because of it. I hope you can figure out the cause, maybe something easy like meds, you never know?

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Jen - I have nothing enlightening to add, just wanted to say I hear and share your frustration. It's so hard to not be able to get answers. As far as the hair, I don't know - I started losing a lot of hair when this illness began and it hasn't stopped. I'm not sure how I'm not bald - I guess we have a lot more hair than we realize. I do miss my old hair though. I hope Mayo comes up with something for you. It seems like they've taken a special interest in your situation - maybe they'll figure it out.

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I'm in the exact same sitchy as you, I have pots and graves disease, my tsh is .005, and I've lost half of my hair. My doctor said its most likely caused from either of the two diseases. He said either my blood isn't getting to my hair follicles enough because of pots,,or,,my antibodies are attacking the hair follicle.

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I posted on the other thread that two winters in a row I lost hair that created a bald spot on the back of my head about 2-3 inches. They tested thyroid with me many times, and it's always normal. Luckily all the hair grew back both times in about 2-3 months. It was a bummer because the person cutting my hair stated "you have a large bald spot". I'm a guy, so the cut was really short. I had to get creative and do a "comb over" on the back of my head, but had to wait for my hair to grow back. I mean that spot was completely bald. I would see hair trying to grow back, but would immediately fall out due to inflammation. Some of the Doctors at the time told me that it may stop with just that bald spot or it could go as far as taking all my hair on my body. And of course everyone stated that it was stress related. To tell you the truth I think it was lack of sun related, because I had really only moved to Alaska a few years before and both times I lost hair in the winter when we have VERY limited sunlight during the day. I know Vit D is really important with immune health. I also did realize that my head is often very itchy and noticed that I would itch my head. I noticed that sometimes it will only itch really bad in one spot and realized that the itching was probably the inflammation of my hair follicles. Well I thought that maybe itching it could have contributed to the hair loss.

Well, I try as hard as I can to leave my scalp alone and started getting the expensive shampoo's... worth the price I figure. It's been 2 years now and no hair loss, so that's good (I'm knocking on wood right now).

I do have one spot on my leg where I lost hair and it never grew back, but I don't care about that. I guess if you are a woman and shave your legs it would be a nice symptoms to loss your leg hair on your legs. Why can't we have positive symptoms like that?

But losing my hair was my first symptom before I started developing dizziness two years later. There has to be a connection, but none of my Docs have stated that it is related. Well except those that say it's only anxiety and stress.

And one last thing, I have been salt loading and it wasn't helping. I then realized I was only using non-iodized salt, so I switched to iodized. I could tell a positive difference in the first 1-2 days. I wasn't sure if it was all the other things I'm doing or the Iodine. I mention this because I know that iodine is important with thyroid function. SO, maybe it is the thyroid!

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I had quite a bit of hair loss as well and have posted about it several times. There is a vitamin that really worked for me on NaturalWellBeing.com. I do not take as much as they advise but it still helped. Just a thought but I would still try to work with the Docs to figure the other avenues out as well. ;o) Take care

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GEEZ.... I was hoping to get answers but not responses saying that you are having the same issues :mellow: :mellow: It is just awful. I know it seems trivial compared to everything else- but I feel unattractive enough as it is... and stuck in bed all the time- its just depressing.

I am pretty sure that it is my thyroid but no one seems to want to investigate and I am growing weary of asking again and again but something just isn't right with this.

I swear, I DO have a VERY VERY MEAN autoimmune disease and it doesn't play nice with me at ALL!!!!! It HATES ME! Will attack anything and everything. I just wish they could figure it out but it seems like every time I see another doctor we just find something else instead of improvement. Just feel blah. Sorry... it is just one more thing, right???? And I guess a trivial one at that compared to what many of us face and many many others!!!!

Jen

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Jen,

Totally, understand. I have alopecia - which is autoimmune and is where your immune system attacks the colored part of your hair and yes it does cause baldness. I have been to the very best doctors at Mayo and also another doctor outside of Mayo and they all say there is nothing I can do about it. The treatment has been cortisol shots in the bald spot to try to stop the attack and cause the hair to regrow. It did stop that particulary attack - but, recently started into another flare. I have had hair come back into that area - but, it is all white. I think that may be related to my vitiligo which cause the melanin of your skin and hair to lose it's pigment color and turn white. This too is autoimmune. The doctors told me that I would probably not lose the hair that is white, just the colored hair. No one seems to have an answer or solution for these attacks. They said they could be very wealthy if they could come up with one. Even one docs mother has it.

Yes Alaska, I too have been told I could lose all the hair off of my entire body. At this time, I'm losing a significant amount of hair on the top of my head. I wash it and get handfuls and I brush it and get handfuls. There is no guarantee whether or not hair will come back at all. I believe that some of my POTS issues are also related to autoimmune issues too. I'm trying to work on things to help that area of my body.

In the meantime, I have a really cute wig and have collected some really wonderful hats and caps. I've always been one to LOVE hats and caps and have also been admired for the way I carry them off. You have to have a certain amount of self confidence to pull them off and I've worn them most all my life. Most of my friends say I'm too self conscious about how my hair looks and say I should just do my little barrette on the side and go with it. (I like hair things too. LOL) I had to let my bangs grow out becaue there isn't enough to have bangs any more - so.......it is what it is. There are more things that impact my life much more than my hair. If there is nothing I can do about it - I have to accept it and collect cute things to disguise it. Hey, I'd probably go around with a shaved head - but, that bothers others. So, I have a really cute wig for dressy and cute caps and hats and scarves for other times. And then of course, if I'm really brave there's my thin hair with a cute - flashey little bobby pin holding my bangs back.

Issie

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Interesting, Issie, I have a patch of skin on my face that I was told is vitiligo. Between that and my hyperpigmentation from my last pregnancy, I am multicolored. I thought that the combo of my IBS, the POTS, and the recurrent tooth infections I had, plus my glands that have been swollen for months may indicate an autoimmune thing. The vitiligo would corroborate that, but my ANA came out negative. Can it still be autoimmune if my ANA is negative?

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Yes, seems so. My ANA is negative too. I do however, have issues with my IGG levels - but, think this is not really related - but, maybe. I have very low levels of them on subclass 1 level. There are so many different autoimmune issues and figuring out which one and which receptor to tweak is really difficult. Right now I'm tweaking the AChr levels and seem to be doing quite well with that approach. That can be done with mestinon (like what Rama is on) or a natural approach to tweak the same receptors is Huperzine A (that's what I'm using). So far, so good and it's been over a week on it. I had to lower the amount down and take it only at night because it makes me very mellow and lethargic and actually helps sleep. It gives you that "stoned" feeling that Rama talks about. Not really a good thing because mentally you're kind of out of it. But, it has increased my exercise endurance and also improved my vision acuity considerably. You can talk to him more about what mestinon is doing for him - or maybe, he'll find this and contribute. (Actually, I just bumped up a thread that Rama started on his response to this.)

Issie

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I had posted about this also.

=======

Posted 15 July 2010 - 09:22 AM

I've been experiencing some dramatic hair loss lately. I've noticed it for a couple of weeks now. I did some research and have found that this can occur for some of the following reasons:

a) 3-4 months following a major illness (my POTS came on suddenly and severely, putting me in the hospital 3 times in March of this year)

b.) beta blockers have been responsible (I'm on a low dose atenolol. I started out on 150 a day and am down to 25)

c) over doing some vitamins (like A). I haven't been taking any new vitamins.

So...I have pretty thick hair and am still fine, but have definitely lost about 1/4-1/3 so far. A couple of people have actually commented (without prompting from me).

(a) above usually stops without complete loss. (b.) stops when you stop the drug.

===========

I don't know if my loss was from drugs or being sick but I was lucky and was able to stop Atenolol. It has completely grown back.

Good luck...

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I always lost a lot of hair about three months after my pregnancies which I've heard is quite common. I've read that postpartum hair loss might be from dropping Estrogen levels. But, I just learned, DAO drops drastically after pregnancy... I wonder if that might also be a factor in postpartum hair loss? And if DAO plays a part in postpartum hairloss, does it also play a role in other hair loss including alopecia?

http://www.ajcn.org/content/85/5/1185.full

"In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14)."

It would be interesting to research if DAO inhibiting drugs list hair loss as a side effect. Also... I'd also like to learn more about WHY the placenta produces so much DAO! DAO levels up to 500 times higher in pregnancy??????!!!! What is so important about DAO that the placenta does that????

DAO, histamine, mast cells, intestinal damage, inhibited DAO production, metanephrines, EDS, hairloss ... Agh! Why does it all have to be so complicated?

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I always blamed my hair loss on my POTS. I went of gluten and it is growing back pretty well. I also have had to cut my fingernails more. Not to be graphic but if you are having any gi issues, your body may not be absorbing what you need to have healthy hair.

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I've had multiple periods of hair loss over the years. 90% of them were due to either not getting the proper nutrition or GI-malabsorbtion issues. I've also switched to sulfate-free shampoos and use as little shampoo as possible, sometimes just using water. I'd say the remaining 10% lies between the shampoo & stress (both physical and mental). Don't underestimate the stress part, particularly in getting enough quality sleep.

I'm actually regrowing hair quite nicely and my barber usually comments upon it each time I get my hair cut. Baldness strongly runs in my family, so I'm not expecting a full flowing head of hair, but to be regrowing hair @ 34 without any drugs/supplements feels mighty good to me.

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I lost so much hair when I had low T3 and 4.. it was awful. Thyroxine stopped my hair loss and it's pretty much all grown back now. Do you have an autoimmune thyroid disease, jenglynn? They can make your thyroid numbers swing around sometimes.. my thyroid labs always looks pretty out of whack because of my thyroiditis.

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