Iron Woman

As a firm supporter of #TeamCap, it was awkward to learn recently that I am literally Ironman. Let me explain…

Almost 2 years ago at a routine physical, my doctor at the time told me I had elevated serum ferritin, a measure of iron levels. Don’t be alarmed she said, we’ll keep an eye on it. It requires little to no attention. No biggie.

AH-HAHA, my insides laugh at “No biggie”s.

Earlier this year, I started getting so tired I could barely stand it. I went to the doctor, and everything came back normal. Frustrated, I went home and scoured my medical records. Could we by chance check this serum ferritin thing that was high? Even though it’s not a routine test and I have no idea why the doctor ran it the first time?

Oh what’s that? My level that was high is now DOUBLE?

Let’s watch it and see what it does, they said again.

The next month it was higher, the month after that, higher still. All of a sudden, this random test result was climbing the charts.

Turns out there’s a genetic mutation, of which I have a copy, that can lead to a condition called hereditary hemochromatosis, which you can read about here. There are multiple genes involved and luckily I only have one copy of one gene, so my case is no where near as severe as it could be.

The short version of hemochromatosis is that if the mutation is active (you can have the mutation but not the active disease, genetics are weird), your body stores iron. While everyone needs a normal amount of iron to keep their red blood cells happy and prevent anemia, having too much iron more or less poisons the body, creating an environment of toxicity. The iron gets stored in the organs, though where it goes nobody knows.

Serum ferritin, that weird little no biggie test result, shows the level of iron stored in the body. My high level meant that I was in overload mode, and for some reason it was suddenly and quickly approaching toxicity-land. Hence my extreme exhaustion.

The best (and really only) treatment for this condition is to donate blood. The higher your overload, the more often you donate, and you donate kinda forever in order to keep your iron levels in check.

Now the question becomes Can a POTSie donate blood?

Technically yes. I am not anemic. I passed all other qualifying questions the Red Cross asks to ensure your safety and the safety of your blood.

Should a POTSie donate blood?

I absolutely DO NOT recommend it.

I was so flipping nervous the whole time. I drank so much water because you’re supposed to be hydrated. Then I peed 95 times because a) I was super hydrated and b) I was afraid of peeing my pants if I passed out while they took my blood.

I actually felt so much better for a few hours after I donated, because technically, I had just removed a large portion of poison from my body (iron overload is only bad for people with these mutations- people getting blood transfusions actually need the iron, so the excess makes for a super duper replacement, if you’re concerned). But then, all hells broke loose. I was still one month from my 3-year No-Faint-iversary and I really thought I wasn’t going to make it. My blood pressure dropped so low so fast, and I, too, dropped so low so fast. I remained conscious, but barely.


Further investigation revealed that a medication I have been taking for 7 years was potentially contributing to my iron overload, so I had to go off it. Which SUCKED, as any medication withdrawal does. Additionally, I’ve given up my beloved spinach and have reduced my red meat intake. These are the only “lifestyle factors” that contribute, though stress can also. Still working on how to get rid of the stress…

My latest blood test shows a dramatic and drastic turn-around. So yay! But also ouch, because as anyone with a health condition knows, dramatic and drastic is uncomfortable both ways. Even though it means I’m getting better, my body has to take the time to catch up.

Unfortunately, I have to monitor this condition for the rest of forever, but luckily it isn’t the most invasive. Fingers crossed that as the overload lessens, my insides will be less overloaded with ick.

Also, fun story, the Red Cross sends you a thank you note when you donate blood, and a donator card that tells you your blood type. Guess what mine is?

I literally have B Positive running through my veins. Would you expect anything less?


Summer of ’17

It’s a cruel (it’s a cruel), cruel summer/Now it’s gone/ Leaving me here in August…

Any song anywhere can be adapted to fit one’s needs, don’t you think?

I’m not going to sugar coat things, Chronic friends, this summer has been hell.

Last we spoke, I was recovering from a freak allergic reaction, or at least that’s what we’re calling it because no one is actually sure.

That was just under 3 months ago. Since then:

-I was found to have a weird genetic mutation/condition, called hereditary hemochromatosis (which don’t you worry, will be getting its own blog post in a hot minute), which causes the body to retain iron to the point that it is overloaded and the iron then poisons your organs (yeah, wish I was kidding about this one; PS: If you are related to me and I didn’t send you a form letter in the mail, you aren’t on the side I inherited it from.)

-Underwent treatment for the weird above, which meant donating blood and going off a medication that I’ve been on for 7 years that was negatively contributing to my iron storage levels.

-My mouth and throat symptoms never went away after my allergic reaction, despite removing nearly everything from my diet and slowly reintroducing things back (Except berries. No more berries). Excessive amounts of steroids didn’t do anything but make me crazy and give me a thrush infection in my esophagus. My doctor refused to give me an antibiotic despite developing fevers and additional symptoms, so I got a new doctor, but not before I developed an infection so bad that the lymph node behind my ear solidified into a rock hard knuckle on the side of my head that could actually be seen when standing away from me. Still don’t have a clear chicken-egg trajectory on what exactly happened here.

-I’ve lost over 15 pounds from not being able to eat due to throat pain and reactivity and if one more person asks me why I’m upset about this I’m going to flipping lose it on them. I haven’t been able to exercise at all due to extreme weakness, people, and I have a lot of displaced Hulk-type rage that hasn’t had an outlet.

-My new doctor has decided to treat me for Lyme disease because I had a bullseye rash 10 years ago, was never treated for it (doctor at the time said it was “stress”) and all the weirdest of my weird has happened since then, so you know, plausible hypothesis.

Additionally, my family was devastated by my beautiful, dear, sweet, wonderful cousin’s sudden death at the end of June.

I only have 4-letter words for this summer, and this summer knows it.

Update: I started writing this post last week, but was interrupted by MY KITCHEN CEILING CAVING IN. Seriously. There was a leak in the upstairs bathroom, and now my kitchen looks like this:

So you know, sorry I haven’t been keeping up-to-date with this here blog-er-ooney. My insides and my outsides are literally falling apart.