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So - My mother, ever the bearer of medical anomaly news from the family front (and random calls to tell me that the sweet old ladies I used to work with are dead), called today to let me know that my brother has tested positive for hemochromatosis.

We have a weird medical history in my family. I probably should never have children based on this history alone (but hey, I'm a white American, it's my birthright to ignore "good ideas"). The females in my family all have migraine conditions or epiliepsy. My mom has a lot of issues concerning her joints, arthritis, and recently high blood pressure. My father claims nothing is ever wrong with him until he puts off going to the doctor for so long that every trip = major surgery.

And looking through the list of conditions symptomatic of this condition it looks like a list of things that have cropped up in all four of us. Joints, arthritis, extreme fatigue, thyroid conditions, diabetes, issues with the liver, pancreas, and heart, etc. So I guess I'll have to add "get a blood test for hemochromatosis" to the other long list of things I should eventually see a doctor about. In reading about this thing, it's funny that it's so common because I don't think I've ever known anyone who had it. But then I don't tend to hang out with a lot of people in their upper 40's to 50's, either and that's when it typically presents.

Good news for my brother - treatment is typically a lot of blood donation to regulate the amount of iron in the blood. The bad news is that there is one thing my brother is deathly afraid of and it's needles.

Comments

( 6 comments — Leave a comment )
frobisher
Sep. 12th, 2006 03:43 am (UTC)
I am a testament to the fact than such fears can wind up getting dulled. I still hate needles, but I've gotten a lot better at just Going Away while they're being used.

That said, I don't know your brother from a hole in the wall, so my experience may well have no bearing on this at all.
maddening
Sep. 12th, 2006 04:17 am (UTC)
Honestly, I probably don't know him much better than a hole in the wall. He's the very distant brother who only calls my mom once a year or so and I get info filtered down to me.
uncletravelling
Sep. 15th, 2006 08:17 am (UTC)
tell him to get a second opinion (if he can afford it) -- this is a common misdiagnosis (I've seen it a coupla times...)
maddening
Sep. 16th, 2006 03:24 am (UTC)
He's had the odd thing pop up in connection to his liver multiple times and they've tested him for just about everything else they could think of. This was their "long shot guess" after they'd ruled everything else out. Seeing as this was military "free health care" I'm not sure how open his health plan is for second opinions that aren't specialist referrals.

Plus his blood iron test (ferritin) was over twice the normal amount for the "high end", around 300... his was around 620 something. Which definitely could be caused by other things on its own, but taking everything into consideration..

While one child having it doesn't mean there's a 100% chance of the others having it, it was suggested we all be tested either through a blood test or DNA test.

This brother is diabetic, has this abnormally high blood iron level, liver concerns, and a son with Graves disease.
My other brother had a sudden attack of pancreatitis with a "who knows" kind of shrug as to the cause, and Hashimoto's thyroiditis, chronic fatigue, and the great knee issues we all have.

All those things fit as neatly together as the migraines and epilepsy the chicks in the family have.

But then there's me and my sister who, aside from sharing the joint issues, actually are just the opposite in that every time we go in for anything that tests our blood iron we get yelled at for not being on supplements. It's a good day if my blood iron tests out at 20. And that only happens if I've been taking iron supplements every day for a few weeks.

Collectively as a family we are a walking billing code book.

uncletravelling
Sep. 16th, 2006 10:50 am (UTC)
yep - your family looks like it's a mess...

I would wonder if your brothers have problems that start at the front end of the endocrine system (hypothalamus/pituitary stuff). Any wacky psych problems to go along with it?

if they actually did the test for the genetic defect (HFE mutation) and he was positive that way, then they're probably right, but it's a good idea to get then one checked again as it can be a false positive -- happened with my cousin who was subsequently bled for no reason for ten years -- turned out that a gluten allergy was indirectly causing the problem (dietary complicated stuff)

poop. Basically if your family had lotsa money and a top-notch endocrinologist, it could probably be figured out. I kinda hope it is hemochromatosis -- bummer that he hates needles if so, though.



patientsvoice
Jun. 5th, 2007 11:16 am (UTC)
Hemochromatosis and Phlebotomy – Updated Blog
Hemochromatosis and Phlebotomy – Updated Blog

Hi

Thanks for all your help so far with our Hemochromatosis blog. The discussion has changed in the last few days so we would like to take this opportunity to invite you again to a research blog on Hemochromatosis. We are very interested in you attitude toward Phlebotomy and have therefore added a few new questions.


To take part please click this link

http://www.thepatientconnections.com/blog.asp?uid=44


The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.


Best wishes

Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com

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