Continuation of the Now What's

I went to see my GI doctor (who is awesome, by the way) on Monday to discuss why my iron level went down (and possibly understand why my hair is falling out). See Now What?! (Part I) and Now What, Part I...Continued for background.

Apparently, I don't need to be concerned about my iron levels anymore. According to my GI doctor, the big difference in my iron level results (50 vs 30) is due to two different laboratory companies processing my blood. These two companies use slightly different processing methods and have slightly different calibrations for interpreting iron levels. This means, we can't compare these two test results. I really don't understand why two different labs should have different techniques or scales. Shouldn't things like this be standardized?

My GI doctor ordered another blood test through the lab that resulted in my iron level of 50 so that we could compare my results more accurately. We're also going to check my vitamin D level (which has also been deficient for some time). I should get my results back later this week or early next week.

As long as my iron levels don't reach the low of 17, my doctor is not worried. She said I could start taking my iron supplements just two or three times a week to "maintain" my iron level. I suppose the old goal of getting my number up to 70 has been thrown out the window. Just as well. The iron supplements were causing major constipation and keeping my hemorrhoids from healing properly.

Of course, we still don't know why my hair is falling out.

After ascertaining that I am no longer anemic, I asked my GI doctor if there were any other "random" blood tests we could do to find out if there was some other sort of deficiency that could possibly be causing my hair loss (which has been going on for a little more than two weeks) or even why I'm so fatigued all the time (I have fantasies that one day we'll discover that I really don't have CFIDS but that it's just a missing vitamin that is making me sick...a girl can dream, right?).

She said there was a comprehensive blood test that a particular company did that her husband (also a doctor) has used before, but she wasn't sure if my insurance would cover it. This company tests the blood for nearly every essential vitamin and mineral that our bodies need.

I called the company, and it turns out that my insurance doesn't cover this test because it is not considered medically necessary; however, I have decided to go forward with the test anyway. I think it is medically necessary. Fortunately, the out-of-pocket expense is less than $275...which is still a chunk of money but is doable...and worth it to me.

I had two large vials of blood drawn this morning to be shipped to the lab that will process my blood. I have no idea how long it will take to get back the results, but I'll be sure to write about them.

This afternoon I also have an appointment with my regular doctor. See Now What?! (Part II) and Now What?! (Part III) for background info. I've got a list of things I need to discuss with her. Since I'm thinking about it, I might as well list things out (this is more for me than anything else):

• Hair loss
• Hearing/comprehension difficulties
• Triglyceride levels
• blood work for glutathione levels and cyclic-AMP (ATP) levels
• Possible new treatment protocol
• Glutathione IV
• ATP pills
• Glyceron Plus injections

I feel like I'm leaving something out, but this will have to do for now. Stay tuned.

Now What, Part I...Continued

I'm still home sick, but I thought I'd write. I'm feeling much better than Sunday and Monday but still not strong enough to go to work today. I hope to go back tomorrow because I really can't afford to use any more sick leave.

I got back my iron and thyroid blood test results. (See Now What?! (Part I) for background.) My thyroid is fine, but my iron levels are lower than the last time they were checked. Lower?! I've been taking high-dose prescription iron supplements (equivalent to 589% Daily Value) every day for the past several months. The only two occasions I did not take my iron was when the doctor instructed me to stop for a week before getting my blood tested.

Here's some perspective. My GI doctor said she prefers the iron level of women my age to be at about 70. When I was first diagnosed with iron deficiency earlier this year, my iron level was 17. After about two months of taking iron supplements, my iron level jumped to 50. After a couple more months of taking iron supplements, my iron level has dropped to 30. This does not make any sense to me, particularly because I have not taken any new medications, altered my diet, or had any changes in health or lifestyle; I am also not pregnant.

And I'm still losing my hair. Argh!

My GI doctor told me (via the nurse who called me this morning) that she wants me to see my regular doctor about my hair loss. I still think it's my low iron level that's causing the hair loss (Ockham's razor). Good thing I already have an appointment scheduled with my regular doc for July 1 (a week from tomorrow). Sadly, the list of things I need to talk about with her is steadily growing.

I have to say that I am very surprised and disappointed by my lower iron levels. I'm waiting on a callback from my GI doctor's nurse to tell me what she wants to do about my iron levels. I don't know if I'm going to have to see a hematologist, if she herself is going to do more tests, or if she wants to try other methods of iron supplements (injection, IV, etc.).

Stay tuned...

Update at 5:44 PM: My GI doctor's nurse called to let me know that the doctor wants to see me for a follow up. I've got an appointment for Monday.

Now What?! (Part I)

My hair is falling out. It is falling out evenly, so my appearance is not any different. However, after losing about 25% of my hair volume, I finally knew something was wrong. That's when I called my doctor.

My hair has actually been falling out quite rapidly for about the past week, though it took a few days before I was certain it was happening. (Since I have long hair, it is usual to see my hair all over our house.) More hair than usual seemed to be coming out when I brushed it, showered, slept, or moved.

I'm going in for blood tests on Wednesday.

I think my hair loss is because of my recent development of iron deficiency, but we're also going to test my thyroid levels.

I suppose I'm not more alarmed about my hair loss because I've experienced hair loss before due to a medication I took. As soon as my doctor at the time and I figured out I was reacting to a particular medication, I stopped taking it and my hair stopped falling out. As soon as my GI doctor and I figure out the cause of my hair loss this time, I am confident I will be able to take appropriate measures to stop the problem...I hope.

When I know what's going on, I'll talk about it in a future post.

Update on June 17, 2009 at 1:46 pm: Just got my blood drawn to test iron and thyroid levels.

Update on June 23, 2009: See new post Now What, Part I...Continued.