Wednesday, July 1, 2009

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.

1 comment:

hayley said...

that is really interesting as i too have really bad hairloss with my CFS. but like you at the mo im low in iron which can cause hairloss ive heard. then again ive had the hairloss without low iron, esp when i first got sick. so go figure. it happens every now and then when im really sick. all my hair falls out. i just take it as another symptom.

i know what its like though wondering if they did all the tests on the world maybe they would find something and then it could be treatable you know? but i ended up feeling a bit like a guniea pig so i gave up. not saying giving up though is a good thing...