sjorgens,lupus, sun and hairloss

[d.norfolk]

my hair has been falling out for a year and a half now,  ove the winter there has been smaller patches,  anyway here in england we are just starting our summer( late iknow but this is england) anyway with the weather being nice i have been pottering around outside,  i ahve noticed over the past few days my hairloss has been considerably greater does anyone else out there have similar problems,  I am on plaquinel i thought this was suppost to help with symptoms.

Thankyou dawn x

[Pooh]

Hi Dawn,
When I first started taking Plaquenil my hair fell out by the handful.  Now however after years of being on it, the hair is starting to grow back.  Also when you are outside, it's best to wear a wide brim hat.  This not only protects your head, but your eyes also. 

Hang in there, as my rheumy told me "you won't go bald." 

Hugs, Pooh

[Skylar]

Hi Dawn - I wear wigs because I've lost a significant amount of hair -why? I don't know. It might be autoimmune related or something else. If you lose sufficient hair on top, you can purchase toppers which clip on and blend into your bio hair so that no one can see your thinning. It you have significant loss all over, then wigs will be your best friend. If you want any information, just send me a post and I'll provide you with more info. Hollywood stars and celebrities do it all the time.

BTW, for most people hair does grow back.

Skylar

[Pooh]

Just an afterthought Dawn, have you had your thyroid checked?  This to can cause hair loss. 

I hope if you are feeling better that you don't stress out over this.  It will grow back, but if you are really concerned, by all means see a dermatologist and have it checked out .

Pooh

[gurs]

My hair loss is horrible. Dont have the patches of hair missing, but the back of my hair is like string (no lie!)..it never grows and the ends just pull right out. My mom has been a hairstylist
for 30 years, and she never saw anything like it. When I was on plaquenil, it got better.
I keep getting conflicting information about my thyroid...wondering if that is the problem.
My TSH and free T3 just came back very low. Some of my docs say to try some natural thyroid hormones, and others say "NO" your fine? The symptoms mirror Sjogrens so its hard to try, but I may give it a try.

Gurs

[Sjenny]

Gurs:

Hypothryroidism can cause hairloss.  Are the outer part of your eyebrows missing or thinning?  That is a telltale symptom.

Check out this website www.stopthethyroidmadness.com

According to them, getting the free T3 levels in the higher range is the key to good health and they favor natural dessicated hormones over synthetic.  I'm not a doctor and I can't advise anybody, but all I can tell you is that I feel normal on Armour thyroid and terrible on Synthroid.

Sue

[Linda196]

Gurs, I think it's time to find an endocrinologist who specializes in the thyroid. Your results are very confusing, I'm not surprised if GPs or rheumies don't know what to do with them. A low TSH indicates too much thyroid hormone, while a low T3 indicates poor capability to metabolize T4 into bioaccessable T3. Sorting this out needs an experienced endo, I'm afraid.

[wen.uk]

Gurs  I had similar problems before being dxd with SjS - my hair had gone very thin and it was a constant struggle with it.  I started on the plaquenil 14 months ago and the difference is really noticable.  My hair is now fuller and I've even managed to grow it past my shoulders now, much to my delight.  Don't think I'll ever have a real good head of hair again, but I'm truly grateful for the improvement.  I do hope the same happens for you.
Wen x

[Sandra]

Hi all, just thought I'd mention my hair too. It does wird stuff, falls out, gets really brittle and turns color. It only happens now and again and usually is thyroid related I think. But the color change and brittleness I think might also be from dehydration. It's hard to know for sure as my doctors are never very interested in the topic, it's a non-issue for them. But i sure don't like walking around in  brassy red wirey hair! Sandra