Monday, November 21, 2011

I'm Losing My Hair (Part II): Visit to the Dermatologist

My visit to the dermatologist on Friday, November 11 was a blur because I was just so shocked that she could easily see my hair loss. I didn't even have the chance to tell her I had collected hairs to prove I was losing an unusual amount of hair each day. She could see the loss clearly.

I told the doctor I had a history of hair loss presumably due to medications. She went through several additional reasons why I might be losing hair. Here are the ones I remember her mentioning:
  • Genetics (i.e., female pattern hair loss)
  • Extreme stress
  • Major physical event (such as a severe illness)
  • Nutritional deficiency, usually iron
  • Thyroid problems
  • Certain diseases (She did not mention any particular ones.)

She didn't mention PCOS, but I have read that some women with this condition experience hair loss, so I asked her to also check my hormone levels. The dermatologist ordered the following blood tests (in alphabetical order):
  • ANA - the presence of antinuclear antibodies can indicate autoimmune diseases such as lupus, which can cause hair loss
  • CBC - complete blood count, a general overall blood test to check for abnormalities in the blood
  • DHEA - dehydroepiandrosterone, a hormone that at high levels is sometimes associated with hair loss
  • Ferritin - the protein that binds to iron in the blood, there is some evidence that low iron can lead to hair loss
  • Glucose - sugar in the blood, diabetes can cause hair loss
  • RPR - rapid plasma reagin, a screening test for syphilis, which is known to cause hair loss
  • Testosterone - a hormone indirectly associated with scalp hair loss (as well as unwanted hair growth)
  • T4, Free and TSH - thyroxine and thyroid stimulating hormone, both hypothyroidism and hyperthyroidism can cause hair loss

The doctor really needs to work on her bedside manner because she said that if all the blood tests came back negative, there was nothing she could do to help me. Sheesh, talk about a morale crusher.

After I left the doctor's office, I was very upset. I was sad that my hair loss had been confirmed and angry that the doctor left me feeling hopeless (I assumed everything would come back normal like it nearly always does). I took the confirmation that I really was losing my hair quite hard. I cried... a lot.

Even though I didn't have any sort of diagnosis yet, the knowledge that I really was losing my hair was enough to shake my confidence. I entered a weird state of mourning over my past and future lost hairs, not knowing if my hair would ever grow back to its former thickness or if I would continue to lose it until it was too obvious for others to miss.

I feel guilty that I am so sad about something so superficial as hair loss; after all, it's not as though I'm dying or horribly disfigured. In fact, at this point, most people can't tell my hair is thinner than it used to be. I know it's what's inside that counts and that we all have inner beauty (blah, blah, blah), but I can't help how I feel. I suppose I need time to adjust.

I heard back from the dermatologist a week later on Friday, November 18. She left a message that said that my lab results were abnormal and I had elevated ANA levels. She said my results may indicate lupus or some other type of autoimmune or connective tissue disease, so she wanted me to see their specialist.

Lupus?! I did not see that coming. I've been tested for autoimmune diseases at least twice before (in 2005 when I got my initial ME/CFS diagnosis and again in 2009 when I participated in CFS medical research), and both times came out negative.

More tears. I was hoping for something simple like low iron. All I have now are questions. Is it possible that I've developed Lupus in addition to CFIDS? Has it been Lupus all along? Or was this test a false positive and am I wasting emotional energy? If it is an autoimmune disease, how sick will I get? If it's not Lupus, then I still don't know why I'm losing my hair...

I can't quite explain why I'm so upset. Maybe it's because I've gotten used to ME/CFS and have already experienced its range -- from being so sick that I couldn't have a job and slept up to 20 hours per day to having a full time job and being mostly functional. I understand ME/CFS; I generally know what to expect. Lupus is foreign and new.

Coincidentally, I had an appointment scheduled with my CFIDS doctor today. I told her about the recent events, and she was not particularly concerned about my ANA results. She said she often sees elevated ANA levels in people with fibromyalgia (I should mention that I've never actually been diagnosed with fibro) and that her lupus patients usually had much higher levels than my modestly elevated 1:160.

I felt a lot better after my visit to my CFIDS doctor. She has a much better way of conveying information than the dermatologist who did not do a good job of offering hope.

Obviously, I will be having more tests done, but I hate waiting and wondering about the unknown.

My appointment with the autoimmune specialist is tomorrow. I will be going in armed with my medical history, questions, and research. No matter what happens, though, I will be seeking a second opinion. I have learned my lesson in going with single opinions in significant health matters.


upnorth said...

Oh, I know what you're going through...I've started thinking I'd like an alternate diagnosis again and want to get tested for autoimmune...I have heard it is VERY common to have elevated ANA with M.E. My sistern law has Lupus and hasn't had an "episode" in a long long time. She is functional and can work etc. EVERYONE I know with M.E. is sicker.

I had an elevated ruemitoid factor once but since I don't get joint pain they wouldn't consider reumitoid arthritis...even though I get the fevers, chest pain, fatigue (other symptoms). I hope they DO find something that will explain the hairloss. How about endocrine issues?

-sorry to be so long-winded

alyson said...

Hi upnorth,

It's amazing how many weird blood test results people with ME get, and yet there is still no good research on the disease. Ugh. I don't know what's going on with my body these days. All I know is that I have been feeling worse than usual. If it weren't for the added symptom of hair loss, I would assume it's my ME/CFS acting up. Since hair loss is not usually associated with ME/CFS, I suspect there is something else going on.

I've been tested for thyroid problems on too many occasions to count (and this time was no exception). I've also been tested for other hormonal imbalances. Were there any particular endocrine issues you were thinking of?

I didn't think you were long-winded at all! :)