Dryope

Iron Update

I'm going in tomorrow for my first visit since the Fainting Incident.  I've drunk a lot of water yesterday and today and I'm planning on having a huge and leisurely breakfast tomorrow. 

Plus, to be extra extra safe, they're putting me in a hospital bed surrounded by actual sick people, and hooking me up to an IV.  Cheers, NIH.

I've been feeling up and down since my last visit.  Normally, I'd assume everything was getting better, but there was that weird thing that happened the last time I went more than two weeks without a phlebotomy--my iron actually went up.  Whether this was a fluke, a normal fluctuation of iron levels in the blood, or the iron coming out of its secret little hiding places in the body, I have no idea, and the NIH isn't telling.  I'm worried that the up-and-down tiredness that I've felt the past two months is due to fluctuating--and perhaps increasing--levels of iron in my blood. 

I've felt Alice-in-Wonderlandy (as in weird sensations) and inexplicably tired, and I keep thinking back to Bilbo's feeling "stretched" from the Ring.  Specifically, I've felt exhausted all day, tired behind my eyes, and I've had an almost daily sore throat for the past three years that my endrocrinologist swears has nothing to do with my thyroid. I've been keeping a running Zombie-meter in my head--as in: How do I feel today? Just bitten, or brains, brains, BRAINS!! ?

It's gotten better in the past week or so, though, so I'm hoping that things tomorrow turn out fine.  Though that does make me wonder--if it turns out there's nothing physically wrong with me, is it really all in my head?

HHC and the Fainting Spell

So I fainted today.  Actually, the words "severe reaction" and "epileptic fit" were bandied about by doctors standing over me.  All I know is, one minute I'm giving blood, and the next I'm being woken up with ammonia and one of the nurses has my juice all over her.  Not to mention the various body fluids of mine that were in places they shouldn't  have been.

All this aside, though, my trips to the Blood Bank at the National Institute of Health has been fantastic.  The nurses (and even doctors) are willing to coddle me and be nice doing it, and they really know how to insert a needle into tiny, tiny veins.  This is all part of my hereditary hemochromatosis (HHC) treatment: I've gotten bled every other week until the iron level in my blood got to a safe range, which took about two months.  It would've taken longer, since it takes forever for my hemoglobin to get back up, but they give me a shot of epo (erythropoietin) to help rebuild it--which costs several hundred dollars each time.  But all this is completely free for me, since I'm taking part in a government-funded research study on HHC.  Honestly, since I'm a completely abnormal HHC patient (being not male or over 60), I really think I'm getting the better end of the bargain. 

Everything was going great up until today.  I had actually gotten up to the point where I could donate the full pint in under 10 minutes--which is amazing, since I'm only 100 Lbs (and have no business donating blood under normal circumstances).  Then, just as I was finishing up, I felt hot and dizzy and told the nurses that I was at my limit.  Apparently it was too late, and I lost a minute of consciousness.  They said nothing that dramatic had happened there in a long time, and judging by the number of people moving around the room, I must have caused a lot of excitement. 

So, the first time I fainted, I was donating blood in a Red Cross trailer in France (my first and last time attempting to be a volunteer donor).  I weighed about the same, hadn't had any breakfast, and had been on my period.  I told the volunteer nurses this, and they said I'd be fine.  When I came back to consciousness, two women were slapping my face, hard, and screaming at me in a foreign language--for a full minute after regaining consciousness, I completely forgot French and had no idea where I was. They threw out my blood (since I'd only filled half the bag they claimed it was unusable), made me sit for ten minutes eating cookies, and sent me home on the city bus.

This time was completely different.  The nurses laughed when I asked if they'd slapped me--apparently that's not standard procedure.  They claimed they'd just screamed my name a lot and shook my shoulders (which is when my juice fell all over one of the nurses).  Plus, I didn't forget English--but I had a very very limited vocabulary at first. 

The NIH staff waited on me hand and foot and threatened me with an IV machine if my blood pressure didn't go up--they were checking it every five minutes.  Eventually I was wheelchaired out to a hospital bed, where I was allowed to sleep for several hours, and was threatened again, this time with a government-hospital lunch until they decided I was okay to drive home. 

All of this was completely free.  Totally amazing.  And, apart from chiding me on not having drunk enough water yesterday, they were very sweet to me the whole time. 

Now I'm feeling great, apart from being exhausted and for the nasty bruise on my arm (I had the fainting/seizure/episode while the needle was still in me), and drinking lots and lots and lots of water.  I'm headed out for another opportunity for dehydration: I'll be on a plane in a couple hours (6am) to San Francisco, to go to the Association of Asian Studies's annual conference this weekend.  Then the 5pm-5am flight on Sunday night/Monday morning, and then back to work. 

So expect sleepy West Coast stories next week.  Or more likely, sleepy conference stories...

The results are in...

...and I'm a full mutant for hereditary hemochromatosis!  Yaaaay!

Well, "yay" in the sense that this explains everything and I don't have to start from scratch.  And my specialist has to eat crow for doubting me. :)

More to come....

Taking it all in

So I have this Odwalla Superfood Amazing Purple Fruit Juice Drink (Made with Acai Berries!) thing on my desk. 

It has 4% of the RDA for iron, about 0.56mg.  I don't want another 0.56 mg, but I love acai berries.

Ah, but the label says it also has 2g of dietary fiber, which will fight off the iron, and apple juice, which also resists iron absorbtion.

BUT it also has 60% vitamin C, which will work to ensure that all of that iron and any iron in other food I take within an hour or so of this will get fully absorbed.

So how much iron will I get? No idea.  Somewhere between 0.56mg and -10g.

None of which matters, because this is all non-heme iron, and I'm drinking it with coffee, so most of the iron'll get blocked by the chemicals in the coffee anyway. 

...though some of the studies I've seen disagree about what exactly in the coffee it is that's doing that (tannins sure, but maybe also flavenoids (and which kind of flavenoid (only some are effective)), and even caffeine...).  And could I drink hot cocoa, green tea, black tea, or coke to do the same thing?  What about red wine, which has (good) tannins and (bad) alcohol?

Not that any of this matters.  Although a person only really needs to take in 1 or 1.5 mg of iron per day  (the rda is artificially high at 14 mg), and I really don't need any more at all (my blood is carrying 97% of its iron capacity and I'm storing about 10g of iron when the average woman stores 3.5g), drinking some juice is really not going to affect things much.  Even eating meat (heme iron, which can't be blocked by anything) is just a drop in the bucket for me.  The only thing I really need to watch out for is artificially-added iron in cereals and pastas and whatever--it's in a form that is super-easy to absorb, even compared to meat.

So there's no point doing iron absorbtion math in my head from my juice label.   There's no point knowing that spinach has a ton of non-heme iron, but you barely get any of it because it also has a ton of fiber and calcium.  And that chickpeas, unlike a lot of beans, carry as much iron as a steak (although it's non-heme) and barely any fiber to block it.

It's just excess (and probably misleading) knowledge I'm carrying around in my head as a result of over-studying this thing. 

Or I'm a neurotic Iron Bridget Jones, reading medical studies on iron absorbtion instead of Mars and Venus books, trying to lose weight in minerals instead of fat.

Where's my Iron Colin Firth?

ps.  Eewwww.  I did a search on "iron" and here's one in the top 50: www.ironhymen.com/

What is wrong with religious groups? Sometimes metaphors are just icky.

pps. I'm ignoring my "drop in the bucket" statement above, of course.

Liver full of loose change.

Finally got a (preliminary) diagnosis on what's been keeping me down: hemochromatosis, or an excess of iron.  This is great, except:

> The majority of people who have this are diagnosed when they're 50-60 and most of them are men--and women don't have it at all until they're postmenapausal, because they're losing blood constantly (more on the fun implications of that below). Which means, if I do have it, I probably have the rare juvenile form and/or a lot (LOT!) of iron.

> I'll probably need to be bled in a procedure known as a phlebotomy, in two stages: one really rapid one in which I'm bled every week, ideally a pint each time, until my blood reaches a normal level of iron; and then a second, maintenance course, in which I'll donate blood quarterly for the rest of my life.  The funny part about this is that I pass out when I donate blood, because I'm underweight and, I suspect, anemic on top of it all (yes, it's possible).  So if I have to go through this, I'll have a wacky time of it for about a month or so.

> If my tests are really high, I may even need a liver biopsy to see if there's any organ damage.   The specialist can't see me 'til my birthday (til a month and a half from now), and I'm hoping my present will be no biopsies or surgeries of any kind.  Which is perhaps the best  birthday present of all.

> I have to notify my relatives to get tested: it's genetic (but recessive).

> I also have to tell a lot of people that, yes, I can eat as much spinach, steak, and foie gras as a I want.  Just not nails. And, oddly, raw shellfish.  (No! Not raw shellfish! Anything but that! Oh, wait, I have to not eat it? Uh, okay. Sure.)

If all this sounds depressing, it's really not--this is a much more useful diagnosis than something intangible, like chronic fatigue syndrome or stress: it's very common, and the treatment is routine.  Plus, it proves I'm not a hypochondriac (though the jury's still out on the whole "fructose intolerance" thing, which apparently is a fun thing to spring on a doctor--they always do a double take).