Weak hair or losing hair?

[shelaxel]

My daughter who is 2 1/2 years old has always had very thin hair. Until recently we thought that it was just genetic (my wife has thin hair).  In June of this year we began to notice that Ella's hair was falling out and she had some VERY thin spots on the top of her head.  They have no pattern and this is not childhood alopacia.  Her hair falls out when brushed or when her baby brother pulls on it.  Huge clumps fall out at a time and she has very little hair left on the top of her head.  The back of her head seems unaffected and is actually kind of thick.  When the hair comes out there is no visible root and it seems to almost break off and leave a little stubble.  Ella usually does not seem to feel it when her brother pulls her hair out and doesn't even seem to know it happened some of the time.

Ella has had a history of behavioral problems in regard to eating and has been recently been diagnosed with a gluten sensitivity and has been on a gluten free diet for 2 months.  Prior to this diagnoses she had seen an endochrinologist to address her insatiable appetite, yet lack of significant growth.  All tests performed were within normal limits and those tests included a thyroid function test and blood glucose test.  They also tested her for pradar-willie syndrome although she does not have many characteristics of someone with that condition.  She is very bright and not at all developmentally delayed.  Ella would eat very large, adult sized portions of food and never seem to get full.  She could eat non-stop for over and hour at a time.  She had a large distended stomach, but gained weight very slowly.  She is also quite short for her age and is always at the bottom of the growth chart. We have seen a great improvement in her after being on this diet, except for the hair loss.

Ella also always seems to have dark rings under her eyes.  I was assuming that was due to a lack of iron absorption because of the gluten problem she was having and that the lack of iron could also explain the hair loss.  However, after over two months on the diet and taking a vitamin with extra iron daily her hair problem actually seems to be getting worse.

Do you think that she will lose all of her hair before new, stronger hair grows in?  Is there a possibility that there is something else going on with her other than the gluten sensitivity and lack of nutrient absorption?

We are very worried about Ella and are desperate to find some answers to help her.  Thank you so much in advance for any help you can give us.  We have looked on the internet for information about toddlers losing hair like this and can't find anything.

Thank you,
Shannon

[ArmourGal]

I can't get your daughter's case off my mind.  Since she is so young, I'm wondering if the antibodies would show up if she has Hashimoto's (sometimes they don't in young folks)...or...I'm even wondering if this is an HPT (hypothalamus/pituitary/thyroid) genetic defect, which is also a possibility. Thyroid hormone would still be the cure.

In any event...I think you need to check thyroid antibodies - but I think Free T3 would show you for sure she is low in thyroid hormone.  It might also be beneficial to rerun the TSH to see if it has risen - which would be an indicator to the physicians that the body is asking for more thyroid hormone.  

I don't trust docs at all...so I understand your sentiments.  For 20+ years I suffered with hypo symptoms and the docs always told me my tests were all "normal"...until I was near death and they finally diagnosed me.  Thyroid disease is treated very poorly in this country since the advent of the TSH test.  I have spent hundreds of hours studying so that I understand everything the docs don't.

I can tell by your posts - that you will follow up on this.  Let me know if there is anything I can help you on.

[ArmourGal]

two more comments..
the Thyroxine...is the Free T4.  

There are two antibodies tests:  TPO which is Thyroid Peroxidase and then there is another one that is something like antithyrgloublin.  

Some folks have both antibodies when they have Hashi's and some just have one...so I would have both run if possible.  

Do some reading on Hashimoto's Disease/hypo..and I'll think you'll be relieved to have found the answer.

[ArmourGal]

Based on that TSH, I would say your daughter's problem is thyroid.  I was quite hypo at a TSH of 2.33 as are many others.  The new top of the recommended range (by the amer. assn. of endocrinologists) is 3, although many labs have not changed their ranges.  TSH also changes thruout the day and your daughter's is probably over 3 at certain times of the day.  But this appears to be a thyroid problem.

Although the Free T4 (storage thyroid hormone) lab appears normal, I'm betting her Free T3 (the active thyroid hormone) is in the bottom 1/3 of the range.  I'm betting also she has thyroid antibodies and will receive a diagnosis of Hashimoto's.  

I belong to the Natural Thyroid Hormones yahoo thyroid forum and many of the folks there have Hashimoto's as well as some that have the gluten sensitivity.  Hair loss is a big issue for many of them as it is such a prevalent hypo symptom.  Other indicators might be your child doesn't have normal energy, or she is pale.  There are so many hypo symptoms and some are affected by just a few and some by many.  

But yes, I think that TSH is way too high.  Most folks have a TSH of around 1.  Anything over 2 has been shown to be associated with future hypothyroidism, so I'm sure it's her declining levels causing the problem.

If you want to contact me, I'm at ***@****
Cindi

[shelaxel]

Thank you so much for your suggestion.  I guess I had just given up on the thyroid thing because they said that her labs were normal.  I don't know much about the testst that you named, but I do have a copy of her labs and maybe you can tell me what they mean.
Her results were:

Thyroid Stimulating Hormone 2.75 uIO/ML (0.27-4.20)
Thyroxine-Free 1.34 NG/DL (0.93-1.70)

I am assuming that the reference ranges they were using are what is in parenthesis.

So basically I should ask for more thyroid testing?  I am so very tired of trying to figure out what is wrong with my daughter on my own.  I feel as though we have been misguided so many times and my daughter is so sick because of it.  No 2.5 year old should be so sick that her hair is falling out when drs. can't figure out what is wrong with her and assume she just has behavioral problems.  Last time I checked, hair loss wasn't caused by behavioral problems.  I feel like there is no dr. that I can really trust at this point...

Thank you again for your insight.  I really do appreciate it.

[ArmourGal]

let me just add one comment...many many many folks have received a "normal" thyroid test...only many years later, to be finally diagnosed.  
the only test they usually use is the TSH test..and it can be quite unreliable.  That's why I mentioned the other tests.  A person can have hypo symptoms even when Frees are in range if they have antibodies.  
But I would get a copy of the labs.

The new upper limit of the TSH range has been changed and very few docs know this.  The new upper limit is 3.  
Also, if the Frees (and they probably didn't even run these tests) are in the lower 1/3, her problem is hypo.  These ranges are skewed towards hypo..and there is literature supporting that.

Also - antibody testing is rarely done...this is critical.

[ArmourGal]

With her gluten sensitivity and losing hair, I would suspect thyroid disorder.  The dark rings under her eyes indicate some adrenal dysfunction as well - which often goes along with thyroid disorder...but may resolve with thyroid supplementation.  

Ask for thyroid antibody testing, Free T4 and Free T3 and TSH testing.  Do not let them just do the TSH test.  If she gets diagnosed, insist upon Armour Thyroid, not a T4 only med.

[shelaxel]

Thank you for the suggestions, Ryan.  Yes, she is anemic and needs extra iron for that.  She is going to see her regular dr. tomorrow and we are hopefully going to get a referral to a dermatologist to go from there.  I will definitely check out those websites.

Thanks again.

[ryn21]

There are some very informative sites on the net, dedicated to the biology and treatment of hairloss.  Keratin.com and hairloss-reversible.com are two good ones.  There are so many, but keratin may be hightly informative for you.  Were her blood tests showing any vitamin deficiencies, and that is the reason for the increase in iron intake for her?  

At any rate, the site hairloss-reversible has a forum that you may ask questions in.  Tom Hagerty, the site admin, is highly educated on the different types of hairloss and may be able to help you further.

Hope all goes well for your daughter.

[Alan Rockoff, MD]

There are rather rare syndromes associated with hair loss.  Diagnosing them may involve, among other things, microscopic analysis of the hair.  An academic pediatric dermatologist is your best bet.

Dr. Rockoff

[shelaxel]

Thank you for your suggestion.  No, Ella does not pull or twist her own hair and I can certainly say that I have never seen her do it.  I forgot to mention that in my original post.  She has been tested in the endochrinology clinic at our local university hospital.  

I guess we'll see a dermatologist and go from there.

Thanks again

[Alan Rockoff, MD]

One possibility is that your daughter is twisting or pulling her hair--this would leave bald spots with stubble.  Fungal infection seems much less likely.  Finally, your daughter may have some endocrine or other congenital syndrome, but I am jot sufficiently familiar with these to say anything more specific.  Nutritional deficiencies don't generally cause chronic hair loss.

I would observe tour daughter to see whether she does pull her hair.  If so, that would suggest one way to approach the problem.  Beyond that, consultation with a pediatric dermatologist at an academic medical center would be my next suggestion.

Good luck.

Dr. Rockoff