Tuesday, June 23, 2009

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.


gail said...

Hi Alyson,
I've enjoyed reading your blog....it's amazing how your experiences with this illness ring so true for me....I used to blog and recently stated again. If you're interested it's http://upnorth-gailstories.blogspot.com

Anonymous said...


I just turned 30, had this my whole adult life too. I've started participating in advocacy here in Vancouver, Canada, and also made a few little youtube vids last year, have a look, search YT for "ME/CFS - A Subtle Threat".

I've had way too high iron for last couple years. No clue what that does, I guessed just had to eat less iron. We'll see if it has changed next blood test.

Best of luck Alyson, and I do think our work is starting to pay off. :)


Jozephine said...

Ha, commented on this and I see it didn't 'take'. What I said was I Googled iron absorption. Apparently your body will automatically dampen down uptake of iron if there is too much around. So maybe you are just taking too much. Also, menstruation plays a part, so if you have heavy periods you could be losing iron that way. Well I learned something anyway . . . .
Take care.

alyson said...

Thanks for all the comments. Gail, I've added your blog to my page. Nate, if only you could give me a little bit of your iron...then things would level out. Jozephine, I've come to look forward to your comments. I'm wondering if what you've mentioned is the case, or if my body is just having trouble absorbing iron for another reason. We'll see what the doctor says on Monday.