Does anyone else have iron overload?
 

Not too many irons, just too much ferritin in their blood. You can have a good blood iron score, but the ferritins, which is the storage protein is too high. Giving blood is the cure if you can get the Red Cross to take it.

Marcia

Do you mean hemachromatosis? One of my son's levels is borderline high but has never required anything but monitoring.

I have this, n have blood taken every month, I can't donate, as I have COPD and the medication rules me out.

I know a lady that also makes too much iron - she has blood drawn every four to six weeks - and she says the blood is just disposed of.

An interesting book - that mentions that - is "Survival of the Sickest" by Dr. Sharon Moalem.

I always have to go for iron infusions, never too much of anything except sugar and cholesterol.

Once you have been diagnosed with Hemochromatosis, by your doctor, your doctor will set up a schedule for therapeutic blood withdrawals which your insurance should pay for. During this period, your transferrin saturation rate will be monitored and once it reaches 50% you can have you doctor contact your local blood bank so you can donate blood every 8 weeks. By donating whole blood every 8 weeks, this should keep your transferring saturation rate right around 50%.

If you do not get rid of the excess iron from your body and keep the level of iron down where it belongs, you can damage vital organs in your body and suffer from Type 2 Diabetes, Congestive Heart Failure, Liver and Kidney damage along with other problems.

Thanks June, that's it in a nutshell. I have no idea what the transferring saturation rate is, but my ferritin is 919. My brother is over 500. His doctor was the one that thought we had the genetic kind. The hospital took the blood, which I have never given before, then I reached down to get my purse with the wrong arm, and it broke open and I made a big mess. I had restless leg syndrome too, but this a.m. I am fine. Marcia

My college roommate's brothers developed this in their late 20s. The docs determined it was genetic. Now my former roomie has it and has blood withdrawn on a schedule set by her doctor. And I always seem to need MORE iron!

My husbands first wife died from hemochromatosis. It happened quite suddenly but she had not been monitored either. Thank goodness, you are being watched. Do what the doctor suggests and get a second opinion. It is a serious condition. I don't know too much about it except what DH has told me.

A friends family has several people who have blood taken routinely at the hospital as a medical procedure because of this condition. One of the kids has to go once a month and one twice a month until the levels fall enough to start a regular program when they figure out how long they can go between blood removals.

I don't think the only way to remove blood is through the red cross. This is a medical procedure and a life saving one. It should be done at the hospital and covered through insurance. Talk to your doctor.

Hope you get into the right routine.
peace

Oh my gosh, I've never heard of this. I'm not even sure if I've been tested for iron levels in my blood. I'm definitely going to ask my doctor about it.

I'm the reverse. I have to take prescription strength iron pills everyday to keep my level up.

Those are the nastiest things to take, but what they do to your "daily routine" is even worse.

Here in Texas, blood can be taken at the hospital, at infusion centers (some of them), some oncology offices, and any blood bank or blood mobile if your sats are low enough. Insurance will pay but many co-pays are higher for hospital vs. clinic, so you need to check with your insurance carrier about that. When you are able to have blood donated, look for a blood and tissue bank so the blood can be used and there is no charge or co-pay. It's just viewed as a donation.

I would think that your doctor would tell you how to handle this condition.

I had a weird blood test result last week, which triggered many more tests, and quite the hullabaloo. It seems that I make too much hemoglobin and hematocrit, and not enough ferritin. Apparently these kinds of results are a flag for a kind of blood disorder called polycythemia vera - which scared me! My doctor sent me to a hematologist, who ran one more test and decided that wasn't it. The ultimate diagnosis was, We don't know why your blood does this, but don't worry. Personally, I think they're not used to seeing people like me - I'm vegan and exercise A LOT, so I'm thinking that being so wacky makes my blood a little wacky. None the less, I was scared and spent the week feeling worried and afraid, and then relieved.