Hi all...I am just a buch of questions today. :) But over the past month and a half I have been dismayed to see that my lovely hair is thinning and falling out all over the place! I am only 28 and up until having this wonderful relapse of lyme I have not had any problems with my hair, well I guess not unless you count the dry itchy scalp and overall dry skin. But the hair itself was healthy, shiny, and soft now it is all brittle, dry, and oh so thin! I'm sure a lot of you have gone through this and I'm wondering is there anything that can help stop it or help it grow back?

I am not so worried about this being permanent, as my LLMD told me spefically that this is typical and will come and go along the way. Some times he said it will fall out for a few weeks, then it should come back and grow in again on it's own. But like always this i sjust a hardt hing to excpet.

What's out there that can help anything? Besides trying to super glue my hari to me head! :D At least that way I don't have to watch it fall out as I brush it in the morning! Thanks for the advice as always.....

Hmmm, that's one problem I haven't had....could it be the possibly off-kilter thyroid that most of us Lymies seem to have?

You know...thyroid problems do run in the fam as it is. My sister and brother both have it. But I don't think I've ever had my thyroid checked??? Hmmm...what test is it called that would see levels of thyroid? I had tons of blood work done within the last 4 months, and have a list of it all. If I had a name to look for on the blood work I could see if I've had one done and what the levels were. Anyone know the name of the test? Maybe I'll do some researching and see what I can find. Thanks gerribear! :)

I'm heading into Brain Fog City after so many hours on the puter today, so I'll just say: add Free T3 and Free T4 to the regular T3 & 4. It was somewhere on the board today, but can't remember which post...sorry!

For the thyroid TSH, Free T4 and Free T3 are really all you need. If the practitioner was looking for Hashimoto's Disease (which is hypothyroid d/t autoimmunity), s/he may also order antibody testing. There might be a possibility of having a T4 to T3 thyroid conversion problem (which is also another controversial area!). This was show up as a low Free T3 level regardless of a normal TSH and FT4.

HOWEVER, I have another thought on this matter. Hair loss is one of the symptoms I've seen listed in several Lyme books and on Lyme websites. My theory is that due to the chronic status of this disease, sex steroids (DHEA & testosterone) are lowered and eventually become deficient in both men & women. (My own DHEA-Sulfate level - the best one to test by blood labs - went from already slightly low at 2 years into my symptoms, to that of a 70 y/o woman only 7 months later. And I was only 36 y/o at the time. My testosterone went down to 20. And my Free testosterone was 0.3 when it should have been between 1.5-3.0. This last test is the most important measure for testosterone deficiency). DHEA is reported in medical literature to decrease in chronic disease (possibly d/t affects on the hypothalmic system? - adrenals).

I had very gradually increasing hairloss starting 1999. Finally realized in 2002 that I'd probably lost 1/3 of my hair volume. Barrettes were falling out when they used to be difficult to close. When I replaced my DHEA, the hair loss lessened. BUT, I would never advocate DHEA supplementation without knowing what your DHEA-S level is, and that takes convincing a provider to test you - and then having that provider be up on current literature and knowing what "normal" levels really are, since researchers are only know delving into a sufficient number of studies to gain pertinent knowledge.

Loss of DHEA and Testosterone in folks with Lyme would also help explain why some have decreased libido (coupled of course with all the physical problems & exhaustion d/t lyme). A body without testosterone also loses muscle mass.

Not suggesting that loss of sex steroids is the only reason some of these symptoms may exist in Lyme, but I think it's a very interesting thought.

Kali

Thx for all the info, the next time I go in to see Dr. C I will definitely print this string off and ask him about all of this to see what we can do as far as these tests go and such. Maybe I will find out that it is my thryoid after all adding wood to the already burning bonfire.

Kali sorry to hear that you suffered from all this for so long, but I am so glad you knew so much about the reasoning and have gradually gotten better with treatements. At least I'm not going to panic now and think that it will hve to be this way forever! :) And I definitely agree with you about the differences in steroid levels...I am sure they contribute to some of our vast array of symptoms!

Excellent explanation, Kali, I second everything that you said. I have been tested in all those areas and the findings are exactly as you stated. Very low DHEA, very low testosterone, adrenal dysfunction, hashimotos hypothyroid and, of course as a result, serious hair loss are all part of my lyme story.

You should never self-treat in any of these areas. You can really mess yourself up.

Romans & Sleeper,

Just making a very fast run through a couple of strings prior to going back to school work.

Romans: I read back through this string and noticed you commented on your "beautiful hair." I feel the same way about mine. My hair was the ONE THING, that even as a child, I really loved about myself. (Grew up overweight). I learned to exercise hard and prior to symptoms starting 5 years ago, got in shape, but when my body started "falling apart" the sad part to me (other than all the pain) was that I was losing my hair. I have long brown wavy REALLY THICK hair, so the loss has not been extremely noticable to anyone else, but I've noticed it - especially when I wash my hair and clumps come out in my hand. I'm glad at this point I spent years finding out other things I really liked in myself. lol.

Sleeper: Wow! Thanks so much for posting this! I am doing my masters research project (integrative review) on DHEA, so from my reviews of articles on DHEA, I've had very strong feelings that androgens/hormones are at least a "marker" of disease process. And my personal experience has been that replacing some of mine (since I was also deficient) has helped with my symptoms (though possibly delayed my diagnosis & treatment?). I will preface this by saying I am NOT an expert in this area (just a novice in looking at the research), but, if you feel inclined, would really be interested in knowing what your levels turned out to be during testing. Whether you feel like posting these or not, thanks again for the info you shared. I'd love to eventually do research in this area! Especially related to lyme and other chronic diseases.

Kali

I wish I had full copies of all my reports, I don't have everything in my file at the doctor's office, but I will get it all next time I go. DHEA range is between 12-379 considered normal, with 12 being the normal DHEA level of a one-hundred year old person and 379 being the normal level for a five-year old. I am 38 and my DHEA should be around 250, but it is 40.

My free testosterone levels are so low that they are "unreadable."

I miss my hair very, very much and would do almost anything to get it back. My self esteem is hugely affected by my lack of hair. I feel extremely self conscious about it. It has been this way for 20 years and I'm still not used to it. Sometimes I have dreams in the night about the hair I had as a child. It was beautiful, long, shiny, black, thick. ARGH!!!

Dear sleeper,

Do you not notice the improvements you are experiencing includes your hair? I would think everything would start to come together. Maybe even a little?
BDFM

I am also 28 and had problems with losing massive amounts of hair, but after being treated with thyroid meds and vitamins(E for hair) and abx , my hair is much better. Good Luck!

Sleeper,

I'm assuming the lab taken was actually a DHEA-SULFATE (DHEA-S) rather than straight DHEA. Is that correct? (It's a form of DHEA that is more stable throughout the day and much easier to measure). But, ACTUALLY, those reference ranges are based on very very old research and are thought (by the experts studying female androgen deficiency) to be very WRONG. The average DHEA-S level of someone our age (I'm 38 as well) is 150. Mine got to 50 before I sought help from an expert in this area. My free testosterone was 0.30. Yours obviously told the story very well. But, I'm glad to see you had someone knowledgeable doing these labs on you. Many practitioners don't know they need to even ask for a free testosterone!

And, BTW, most premenopausal women should have a total testosterone of 40-70 - but again, even if you have that, but most of it is bound, you could still be deficient.

Again, all this is based on current research.

Dallasmom,

Glad you got the thyroid treated! (And are doing better with the hair loss!).

Kali

Hi,

You may want to have your hormone levels checked to make sure that is not the problem. Especially if you have other symptoms that could be hormonally related. This disease seems to play a role in endocrinological disturbances.

Kali, what are you using to supplement the DHEA deficiency? I am taking a 7-keto DHEA and it's very expensive. The regular DHEA supplements cause me to bloat and create mood swings and actually rage which is very uncharacteristic for me.

All this info about DHEA/thyroid and hormone levels really makes me wonder where mine are at. I am definitely going to ask DR. C to test them next appointment...I sure do not want to continue to see tons of my hair on the floor every morning when I brush it or on my pillows in the morning! Thanks all for the wonderful info, I am learning so much. It's amazing how much info we all know. :)

Sleeper - that's really interesting. I don't know a lot about 7-keto DHEA supplements. I take just regular DHEA (usually find it in Men's Health in stores). You can get it online as well. There is a lab that privately tests products. I'll ask if I can post info. However, the brands I've found decent so far (and many brands are fine) are Natral, Schiff, & GNC. Recommended dosage is based on how low your levels are (and of course, yours are practically zero!). Experts who use DHEA (as opposed to using testosterone gel or injections) typically replace with 25mg/day. (AGAIN, I would not suggest anyone using this much without being under the care of a practitioner!). The expert I've spoken with used 1 or 2 of the above brands for his research (after also personally having it tested for quality). He found 25-50mg usually helped women with low libido. (His studies were in sexual health). Personally, my body does well on about 100mg for a while, then I start needing more. My former FP would not test me regularly so I had no idea where my levels were. (The one time she did test me, my total T was 90ish (with 70 as the high norm), but my free testosterone was 1.0 (which is still low for my age group)). She told me to completely stop. Obviously, she wasn't paying too much attention to the fact that it's not the total testosterone you should be looking at.

The effects you've seen from the 7-keto DHEA sound like you're getting too much conversion to testosterone. Has your provider checked your levels since you started taking it? (My bloating, mood swings and rage went away with replacement therapy of DHEA). Another thing to consider is that we may both also have other hormones that are unbalanced (i.e. estrogen and progesterone need to be appropriately balanced). There is a belief that progesterone replacement can help mood swings & PMDD. (Again, really would want someone to follow you for any replacement).

Romans - if you do get levels drawn for DHEA or testosterone, these are the ones that should be drawn:
Free testosterone
DHEA-sulfate (NOT DHEA) - reason is in former posting on this string
Total testosterone
Sex hormone binding globulin

(The total T and SHBG can be used in a formula to get the free testosterone if that lab is not available. Should be able to find info on the web for Free Androgen Index.)

Hope this helps.

Kali

I emailed the moderator re: posting info on quality health supplements (see my previous post here). He/she added the that info to the Research Help Board sticky post called: Some Starter Research websites for all.

Please refer to that post for more info:

http://www.healthboards.com/boards/showthread.php?p=1701374#post1701374

Then: Research Help Board sticky post
Then: Some Starter Research websites for all

Pretty easy to find.

(Thanks!)
Kali