Thursday, November 24, 2011

What I'm Thankful For

Despite all my latest health issues, I still have things to be thankful for. Here's my Top Ten list:
  1. My health. When it comes down to it, I am still thankful for the health that I have. It could be so much worse. It has been so much worse.  Just last year I was brought to an ER via ambulance.
  2. My husband, who has stuck with me on this roller coaster of chronic illness. Even though I can get ridiculously emotional when I'm feeling particularly awful, he still loves me!  
  3. My parents and brother, who have given me both moral support and space when I need it. They don't live nearby, but they are there when I need them.
  4. My in-laws.  They accepted me into the family with open arms. We spend every Thanksgiving with them.  We're about to head over to their house now.
  5. My cat, who is the best snuggler when I'm feeling especially sick or blue. In fact, right now she's sleeping next to me with a paw on the keyboard.
  6. My primary care physician, who is also my CFIDS doctor. Her willingness to use unorthodox treatments is why I went from two years of severe illness (before I was diagnosed) to being able to work full time.
  7. My current job. First, I'm thrilled that I am healthy enough to work and have a job I enjoy, even in this economy. Second, this job is less physically taxing than my last one, so I appreciate that I don't have to use as much energy.
  8. My medical insurance. Despite all the frustrations and red tape associated with medical insurance, it has kept us from financial ruin because of my health expenses. So many people are without the luxury of being able to get the care they need because of finances.
  9. Technology. Computer, internet, and phone are my lifelines to the outside world. TV and Netflix keep us entertained (though I'm not thrilled about the fee hike).
  10. Tween books and movies. I'll admit it. I love that stuff.
To those who celebrate: Happy Thanksgiving! 

P.S. I see there are some comments in previous posts that I have not yet replied to.  I promise I will respond after Thanksgiving!

Tuesday, November 22, 2011

Lupus or Not?

I had my appointment with the "specialist" today.  I put quotation marks around "specialist" because I'm using that term loosely. It turns out that she was another dermatologist in the same practice who sometimes sees patients with cutaneous lupus, which I'm pretty sure I don't have because I do not have the typical scaly rashes associated with the disease.  I was expecting someone who was actually familiar with autoimmune diseases in general, including the systemic version of lupus. 

Here's why I think the doctor did not do a good job. My blood pressure and temperature were never taken.  I was wearing jeans and a sweater, yet she never asked to examine my skin. She did not examine my nails (which, by the way, are soft and have some pitting). She never looked at my scalp or examined my hair (which I'm losing), which was my main complaint to begin with. She never asked about my energy level (terrible fatigue), lymph nodes (they're sore), any rashes (eczema and past photoallergic reaction), etc., etc., etc.

What she did do was tell me she didn't think I had lupus or any sort of autoimmune disease....based on what? I'm not sure.  She simply said I didn't fit the criteria. Considering she didn't ask me many questions or do any examination at all, I don't really know what "criteria" she was referring to.

I can only guess that she was referring to the lupus diagnostic criteria developed by the American College of Rheumatology; however, she never asked me about most of those symptoms, and I'm pretty darn sure it's impossible to know how someone's urine is doing without a test.

Don't get me wrong. I don't actually want lupus.  Heck, I don't want CFS/ME or anything else for that matter.  I just want to know what's wrong with me, and I would like a doctor to be thorough. If I'm seeing a dermatologist, I would expect that person to examine my skin, hair, and nails. She did exactly none of the above.

What she did do right was order some appropriate follow-up tests (in no particular order):
  • Anti RNP: often found with many autoimmune diseases
  • Anti Ro/SS-A and Anti La/SS-B: often found in people with Sjogren's syndrome or cutaneous lupus
  • Anti Scl-70: often found in people with scleroderma
  • Rheumatoid factor: high levels often found in people with rheumatoid arthritis
  • Anti double-stranded DNA: found in 30 to 50% of people with lupus
  • C3 and C4 Complement Proteins: low levels may indicate active lupus (or other infections)
  • C-reactive protein: high levels indicate inflammation, people with active lupus or other types of inflammatory diseases or other infections often have high levels
  • Erythrocyte sedimentation rate (a.k.a. sed rate): people with active lupus (or other infections) often have high levels
  • Thyroid peroxidase antibodies: presence indicates autoimmune thyroid disease
  • Hepatitis panel and HIV: I'm not entirely sure why she ordered these because I don't have symptoms or risk factors, but whatever...

What she didn't order, but I think she should have are: urine test (presence of protein indicates problems with the kidneys) and Anti-Sm antibody (found almost exclusively in people with lupus; 20 to 40% of people with lupus have it), parasite tests (some of my most recent blood test results could indicate allergic response, autoimmune disease, other illness, or parasites).

What she didn't order, but could have because they wouldn't be a bad idea: anti-histone (sometimes found in people with systemic lupus, but often found in drug-induced lupus), anti-phospholipids (found in approximately 30% of people with lupus).

In case you were wondering where I was getting my data and suggested tests, here are the links to the Lupus Foundation of America and the Johns Hopkins Lupus Center.

Speaking of blood test results, the following things were normal (or at least normal for me) for the tests the original dermatologist did about a week and a half ago: RBC, Hemoglobin, Hematocrit, MCV, MCH, MCHC, RDW, lymphocytes, monocytes, platelet count, ferritin, glucose, free T4, TSH, RPR (syphilis), DHEA. Here's a link to understand what some of the acronyms stand for.

The following results were abnormal:

Obviously, something is going on in my body.  I am anxious to get the results of the tests they drew blood for today, but it will be at least a week or two. The doctor today did also mention one thing that makes good sense. She said if my follow-up blood tests come up negative/normal, it might be a good idea for me to see an immunologist.

In addition to the wacky immune system results above, I have chronically low Natural Killer cells (not unusual in people with ME/CFS). On a side note, I found an interesting web page with info about NK cell deficiency. I have never heard of this website before, so I have no idea how legitimate it is. Read at your own risk.

At some point after I get all my results back, I will be seeking a second opinion. I am tempted to see a rheumatologist/immunologist who specializes in lupus and other immune system diseases. That person might be able to sort through all my weird results and help figure out why I'm losing my hair!

I'm exhausted. Good night!

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.

Sunday, November 20, 2011

I'm Losing My Hair (Part I)

I apologize for the long periods between posts. This year has been a difficult one with all sorts of unpleasant surprises.

Just a few weeks after my photoallergic reaction (see previous post), I had two long weeks of severe gastroenteritis with bouts of nausea and vomiting (and a little diarrhea). I had so much constant nausea that family and colleagues at work asked if I was pregnant (I wasn't). I became so weak from the illness that at one point, I could no longer go up and down the stairs in our home and my husband had to carry me. I was going to write an entire post on this experience, but more recent developments have come up that I feel are more important to write about.

My post title is not exactly cryptic. I'm losing my hair. I have gone through periods of excessive hair loss in the past, but doctors have minimized the issue when I've mentioned it, so I never seriously pursued it because I had more pressing issues to deal with. Their reasoning has been that I was probably just too stressed about something or another. (Don't get me started about doctors disregarding patient concerns...I might use some choice words that are not very family friendly.)

The first time I remember experiencing hair loss was around 2002-ish. I am pretty sure it was due to a poor reaction to the medication mesalamine, something I had been prescribed for non-specific colitis. After an initial "it's your imagination" experience with the prescribing doctor, he did some digging and found that hair loss (along with the other disturbing side effects I was experiencing, including tremors and extreme muscle weakness) could be one of the side effects. I stopped the medication, and the hair loss eventually subsided.

The next time I remember discussing hair loss with a doctor was in mid-2010 when I was taking all sorts of anticonvulsant (i.e., anti-epilepsy) medications after having been MISdiagnosed with epilepsy. I told the neurologist that I thought I was losing unusual amounts of hair and was concerned it was the medications he had prescribed. He told me it didn't look like I was losing my hair and that any hair loss was either normal or from the stress of the diagnosis. (By the way, this is also the doctor who MISdiagnosed me epilepsy and prescribed a medication that caused me to have a life-threatening anaphylactic reaction.)

In early 2011, I mentioned the hair loss to my endocrinologist. I can't remember her response, but she obviously did not seem to think it was an issue because my thyroid results were normal and there was no follow up. 

Well, this time the hair loss is worse than it's ever been. Handfuls come out in the shower, and our floors are covered in my hair. On the upside (if there is an upside) the hair loss is diffuse, so the untrained eye may not be able to detect the thinning. I, however, know what my hair is supposed to look like and how thick my ponytail is supposed to be.

I'll admit, there were days I wasn't sure if I was actually losing my hair at an unusual rate or if I was imagining things.  I wanted to make sure I had proof that I was losing my hair before going to a doctor because I didn't want to deal with another doctor who didn't take me seriously.  That's when I got scientific. I looked up estimates on how many hairs a day lost is normal, and I decided to try to catch as many of my hairs as possible and count them. Different sites quote different amounts, but the "normal" range seems to be anywhere between 50 and 150 hairs per day.

I counted every hair I could catch for four days. I got most of the hair from my brush, pillow, in the shower (at least whatever didn't go down the drain), and off the floor after drying. Here are my totals:

Day 1: 236
Day 2: 151
Day 3: 231
Day 4: 190

These numbers don't even include all the other "random" hairs that might fall out throughout the day. I could no longer deny my hair loss. I debated between scheduling an appointment with an endocrinologist or a dermatologist. I ended scheduling with a dermatologist in a medical school dermatology department that listed "hair loss" as one of their specialties.

I was armed and ready to defend my reason for my appointment as soon as the dermatologist stepped into the exam room, fully expecting her to tell me it didn't look like I was losing my hair. She completely disarmed me when she immediately said she could "really see it."

I wasn't sure if I was relieved that she believed me or devastated that it was really happening.

Here is a chart that shows degrees of female hair loss. According to WebMD, it's called the Savin Scale. I estimate that my hair loss is around I-3.

Here's my head (it is difficult to get the lighting just right so as not to have a big glare on my scalp...):

As I mentioned above, the hair loss is diffuse, so it's difficult for the untrained eye to see the loss at this point. I am sad to say that I am pretty sure I have lost about 50% of my hair volume.

In my next post, I'll discuss my actual appointment, tests done, preliminary results, and emotional fallout.