hair loss; normal labs but symptoms persist

[sunflower]

I'm dropping in after several years' absence.  After normal blood work and a normal lip biopsy I wanted to put A-I issues out of my mind.  But dry orifices, joint pain and other symptoms persist. 

In recent years my hair loss has gradually worsened, but it's now to the point where running my hands through it leaves hair all over them.  And it's extremely dry and fly-away.  I wash it only once a week and still there are no oils to wash out.  I've tried conditioning it with coconut oil but any help is very temporary.

Is this something to add to the A-I symptom list? 

Is there anything I can do about it?   

How is it possible A-I issues can continue when tests are negative?  My neurologist believes I have "an autoimmune thing going on."  She also called it "a mild undifferentiated inflammatory condition."  Maybe that answers the question.

Thanks.  You are an amazing group.  Always helping others while you suffer.
Sunflower

[Kris29]

Hi Sunflower,

Your symptoms remind me of what my mom is going through. She started with "inflammatory" symptoms before I was even diagnosed. (Her doctors didn't even consider autoimmune until she had a first-degree relative with an AI condition.) Now her rheumatologist says pretty much what your neurologist says - she's autoimmune-y. But her only positive lab work is a single positive ANA (one of the three times she's been tested she was positive).

She doesn't have a lot of dryness, but she has pain and rashes. And when her other symptoms flare, she has a LOT of hair loss. It really gets her down, so while I don't personally know what you're going through, I get that it really stinks. My mom has found help in an "anti-inflammatory diet." I don't know if you'd be interested in trying that, but she swears it helps with her pain and hair loss.

All the best,
Kristen

[sunflower]

Thanks, Kristin.  I really appreciate hearing your perspective.  I've read quite a bit but hadn't thought about diet helping with the hair loss. 

I had flares several years ago and that's when I had the tests.  Those symptoms persist but in a more moderate form now.  It seems every year there is something new.  2017 was the year of no hair oils (completely dry) and hair loss.

It's just bizarre that some of us have all these symptoms and yet tests are normal.   

All the best to you and your mom,
Sunflower

[Scottietottie]

Hi 

As well as testing for Sjogren's have they tested your thyroid function? (I assume they have) but I ask because hair loss is a common symptom of an underactive thyroid. Also hair loss to the outside edges of eyebrows along with diminished appetatite but weight gain.

Take care - Scottie 

[Deb 27]

Sunflower,   have you had your iron and ferritin (iron stores) checked? Low iron can also cause hair loss. Some people also get results from taking biotin which is a B vitamin. Don't forget to have your thyroid checked as well. I hope you have some answers. Hair loss is concerning for people. If all else fails, a visit to a Dermatologist might help.

[Kristian]

Sunflower,

Definitely get your thyroid checked and also have your vitamin D levels checked (very common for auto-immune sufferers to have low Vitamin D)

Have you had a work-up by a rheumatologosit or endocrinologist?

My hair was falling out big time and that helped to find low Thyroid and super low Vitamin D, with both of these balanced again my hair came back fully and no longer falls out when I run my hands through it.  The Vitamin D actually makes my hair grow faster than it did before I had any issues (most people get this effect in the summer from lots of sunshine).

The biotin recommendation was a good one too, that definitely helps for healthier hair and nails.