Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
So, I was diagnosed with this blood disorder 12/2017 with a Ferritin level of about 595. My doctor started me on phlebotomys every week from the end of Jan 2018 thru June 2018, when I bottomed out & landed in the ER during my draw. I had passed out & gave everyone quite the scare! Needless to say, they stopped my draws for a bit.
My primary doctor was wanting me to wait until my hemoglobin level was over 14 or 15 before i got another phlebotomy. This went on for the next almost year. It wasnt until June of 2019 that I finally was able to see an actual hematologist. He then informed me, with some shock, that my primary was chasing the wrong f******g number!! It was in fact my ferritin levels she should have been watching instead of my hemoglobin. At this point, my ferritin level was at a 9. I now am having to have my blood checked every 3 months, and no phlebotomy until ferritin reaches btwn 50 & 100. So I had my levels checked in Sept & my ferritin regressed to a 6.
I am looking for help, ideas on how to right my body again after everything was stripped out of me. I have tried taking iron supplements but they dont seem to help. I am completely low on any energy, my libido is next to nothing which isnt like me at all, my body aches like a 90 yr olds would and I'm only 41!!! Please.....does anyone have any ideas for me???
Sorry to make this reply about "me" but I am trying to make a comparison between what the looney doctor did to you and the correct method,
Just curious, but why did the PCP check your iron panel in the first place. Most PCP won't order an iron/ferritin check even though ferritin is at the top of the list that cardio doctors want. Not surprising, iron being stored in the heart is a very bad thing.
Have you had a genetic test done to see if you are likely, but not a sure thing test, to see if you have hemochromatosis? If not, get one! Nothing special about the test, just a simple blood draw.
As you may be able to tell, I am avoiding answering your main question; what to do now? Well, I am nowhere near being a doctor so I can only throw in my two cents. As you read, I got my ferritin way down to 13 in two months. I was lucky because I had zero side effects from being that low and then being technically anemic.
The past year I have just eaten normally, no changes at all to regain a normal ferritin level. However, in your case, you are suffering badly. Has any doctor suggested iron infusion(s)? My neighbor had several of them to get her iron panel up to normal (I have no idea why it was low).
The only other thing that I can suggest is to search for hemochromatosis websites that show what to do to lower high ferritin levels and then do the opposite. Eating a lot of red meat would be my go-to and with taking vitamin C which really enhances the aborstion of iron in the food.
Remember that some vegetables contain iron but it is very poorly absorbed to the point of not being helpful (Popeye and his super strength when he ate a can of spinach was a fable). There are other things to do to help with iron-absorbing, but I think you need more help than just food hacks. I would ask about getting infusions and see if they apply to hemochromatosis cases (I do not know).
Good luck and I hope that you can get help soon!
I have been eating meats, but not taking the calcium. Maybe my system would react better to that.....I will give it a try! Couldn't honestly be any worse.....Kate to think about asking my PCP about an infusion. Not sure she would be able to determine if it was healthy for me or not!
Calcium blocks the absorption of iron when taken with a meal. Vitnamin C, or foods with it, is what you need to eat with meals that contain iron. Take a Vitamin C pill, or eat an orange, with your steak. Leave any calcium pills, or foods high in calcium, for other meals.
As I recall, both coffee and tea reduce the absorption of iron. Therefore, no coffee or tea with your steak.
The above applies when taking iron supplements. It has been a year since I dug into this and cannot remember any other food/iron hacks.
I never had any symptoms whether my ferritin was high or very low. This is one of the reasons that everyone needs to be checked for high ferritin levels to make sure they their level is normal; most have either no symptoms or their doctors chasing problems that are misdiagnosed.
Any chance that you can get to the blood doctor? I would not like having my PCP as a go between. Even a GI doctor would be better if you cannot get to a blood doctor. A GI doctor covers the entire GI system so liver issues are in their scope (liver is a prime target for iron storage and needs to be checked). An MRI is typical, or a liver biopsy may be required. In my case, an MRI did not show any iron, so no biopsy needed.
That is all I can think of at the moment. Try not to worry too much. It sounds like 90% of your problems today were caused by your doctor. A ferritin level of near 600 is high but nowhere near being extreme. Sad to probably know that all you needed in the first place was a few, very few, blood donatations.
Good luck and try to have a great weekend.
If it is high and your ferritin low then you may be iron avid.
I hope you are not as it's hard to recover by most accounts
(I beleive being bled every week from a relativly low level like you were is not good and can lead to iron avidity, once you were at at 300 you should not be bled so frequently, according to my nurse, We've had high iron for years and years there is no need to get in below 50 within a few months, I believe, but going fast seems common!)
http://www.irondisorders.org/Websites/idi/Images/NanogramsDEC2010R.pdf