The IRON wars, part 11326

The original intent of this blog was to talk about celiac and iron-related issues, but up until now I've only written about that stuff in passing. Why? The truth is, that stuff is BORING. It’s boring to write about, it’s boring to think about, and unless you’re suffering from the same thing, it’s boring to read about.

And it's depressing. I don't want to read about it anymore, much less write about it. I just want it to go away.

And beyond the general downer-ness, I’ve come to realize that the iron situation for me is very specific to my own issues, and thus probably not particularly relevant to most people. I've gotten to the point where whenever I see an article about iron and running, I try to keep myself from reading it. I find them to either be inaccurate (and sometimes frighteningly misleading, despite being written by people with impressive credentials behind their name) or insulting to my experiences. Seriously, if I see one more thing telling me I just need to drink orange juice with my iron supplements…  

Don’t get me wrong, I’m sure those articles are helpful for a lot of people (since everyone has to start with the basic stuff first), they're just not particularly relevant for me. My body is like, "Orange juice?! Hahahahah, yeah, that'll totally change everything." My body does not give a shit what I chase iron supplements with. We’re not absorbing.

So why am I writing about this now, when I can’t even talk to my own family about it without their eyes glazing over?

A couple of reasons:

1. While I’ve never found much of anything that speaks to my specifics, it would be pretty egotistical of me to think that there isn’t a single other person out there having similar problems, so maybe there is someone who could benefit from reading about my travails.  
2. I realized recently that my first iron issues were diagnosed in late 2006, and despite many efforts, many doctors of many different types, and many approaches, it's been 8 YEARS and I still don’t have the answer.

I will now attempt to summarize my iron history of the past 8 years in 5 sentences or less.

In late 2006, after suffering from fatigue for practically forever, I finally went to a doctor and found out I was ridiculously anemic. Vast amounts of every kind of oral supplement known to man, combined with a celiac diagnosis and corresponding removal of gluten from my diet, only pushed my iron up a little bit. In 2009, I finally convinced a (different) doctor to give me IV iron and it was like I was born again. Awesomeness followed, but only in cycles, because the thing about IV iron is that you get it, then you use it, and then you need to get it again. 

And because I’m me, I have a chart to back this up.

What you see here is 8 years of ferritin test results. The vertical lines indicate when I got IV iron. There's a little glitch in the chart just to the left of center, where I'm missing some data points, but I think you get the picture, right? 

IV iron causes my ferritin to go through the roof, and then it starts dropping. That's not particularly surprising. The thing that's important to note is the slope of the line when ferritin starts dropping. As we move along the chart to the right, the line is getting steeper, meaning ferritin is dropping faster. I used to get my iron and be good for a year, but this last time I went from 141 to 55 in less than 6 months. And part of that time I was on a break followed by a slow build (not running 85 miles a week, in other words). 

Here's the other thing: it used to be that getting my IV iron was like uppers for running. I'd go from struggling to being able to train hard again within a few weeks. It was like night and day. This last time, however, the change was barely significant. 

Oh, and I guess there's one other thing: I seem to be hitting the fatigue zone at higher and higher ferritin levels. I start feeling it when my ferritin is in the 60s now, which a lot of people would tell you is plenty high. 

My theory on this is that the body/brain feels the rate of change just as much, if not more, than the actual ferritin level. I believe the central governor model would back me up on this.

Of course, I'm not a doctor, nor a physiologist, nor any other kind of expert other than an expert (well, kind of) on my own self, so I am not going to try to say that I know exactly what kind of mechanism is at work here. All I'm really saying is this: IV iron is not working anymore.

It has always bothered me that we haven't been able to fix (or properly identify the cause of) the exact nature of the real problem (aka: why can't I get iron from food like a normal person?), but as long as I had a solution for the symptoms, I could live with it. 

Now I no longer have a solution.

So what next?

Well, I'm back to trying to fix the problem from the inside out, but I'm using TCM instead of western medicine. Actually, western medicine never even really tried to fix me from the inside out. None of the western medicine doctors I saw wanted to jump in and try to figure out what was actually going on. Maybe that's partly my fault for not insisting on it more, but I've done quite a bit of insisting along the way as it is. Yes, that's right, I am the obnoxious patient who thinks they know more than the doctor. But, in my defense, I wasn't that person in the beginning, and I have become that way for a reason!

Anyway, I feel more hopeful about this approach than I have in a while. When I have an appointment, my TCM doctor listens to me closely about what seems to be getting better or worse and makes adjustments accordingly. She asks pertinent questions, we discuss things, and she doesn't have 8 patients scheduled every hour. But I also recognize that things might get worse before they get better. And that the things we're doing might not work, or might not work enough. I may find myself, three months from now, begging my OHSU doctor for venofer again. We'll see. I hope not. Besides the fact that venofer no longer seems to be working, it just doesn't seem like a good long term solution. (And I really do have to beg for it.)

Finally, because I've kind of glossed over the last 8 years of iron ups and downs, I'd like to at least point out a couple of the things I've learned along the way. 

• You are the boss of your own body. Sure, doctors know lots of things that you and I don't, and they can obviously be very helpful, but they're just human beings like us. Don't be afraid to speak up, to question, to suggest, and to get yourself a new damn doctor if you aren't satisfied that the one you have is hearing what you tell them. 
• Ferritin is just a marker of stored iron. It is not your actual stored iron, and iron is not the only thing that changes the number. Ferritin testing can be very helpful (and some of us love the numbers!!), but it has to go hand in hand with your own history, and more importantly, how you actually feel. A ferritin of 60 might be totally kick ass for one person, or, perhaps more importantly, if a person is at 60 without taking supplements, but it happens to suck ass for this person. It's not quite as simple as reading a gas gauge, in other words.

If there's one good thing about the low points of running, it's how awesome it feels when they end. 
I'm looking forward to the end of this particular valley.