Looking for advice..hemochromatosis

@ctkbear Welcome to connect we are here to help and just talk as to what helps us .My brother had hemachromatosis. His diet was no iron related food and he had to give blood every time the blood bank was in town I don't know if he had medicine or not Your Dr will tell you Good luck

Welcome to Connect, @ctkbear.
You may notice that I moved your message and combined it with this existing discussion. I did this as I thought it would be beneficial for you to be introduced to other members who are also taking about hemochromatosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

@ianw has shared his experience with iron-overload (https://connect.mayoclinic.org/discussion/iron-overload-in-blood/); I hope he, along with @danni3ee1 and @ruettj will be able to join us in this discussion.
I’m also tagging Connect Moderator, @JustinMcClanahan who manages the Hematology Page
https://connect.mayoclinic.org/page/hematology/ as he might have some more information as well.

@ctkbear, may I ask if you would share a few details? What signs or symptoms did your husband have? Has it affected the liver or other organs, typical to this condition?

He’s a healthy man, nothing but slight hypertension and elevated cholesterol. This hit him suddenly. He woke up and had trouble tying to the bathroom. Was very weak and very cold. When he had extreme difficulty in standing up, I called the EMTs and took him to the ER. He was very jaundiced at that point. He underwent many blood draws, ultrasound, CT scan, echocardiogram, MRI, X-rays, and probably other tests I can’t recall. They come up with hemochromotosis on the third day when results of some of the blood cultures came back. They took further blood samples a few days later at the hemotologist’s office and we will met with the doctor tomorrow. I hope this helps.

He suddenly became very nauseated, weak, and very cold. He awakened with these symptoms and became too weak to walk in a matter of minutes. Was taken to hospital by ambulance and in the ER was noted to be jaundiced. He was diagnosed after three days of testing. His ferreting level reached 4000. He cannot be treated by phlebotomy because he is also anemic. He is taking Exjade oral chelation but will will not know if it is successful until his next appt. with his hemotologist next week. He is still cold and weak and doesn’t have much of an appetite. Only chage in his diet is the elimination of alcohol.

. I’m sorry for the long delay in responding. I didn’t see your answer to my original question until today. . . Must have been looking in all the wrong places.

can hemochromatosis be secondary to anemia

I believe it’s called iron avidity but I don’t see your iron panel in there. It can happen with too much phlebotomy.Iron disorders Institute has s great support group with very knowledgeable people who are experts in iron disorders who would know the answer. I think it’s possible but don’t want to misspeak.

99.9% of physicians say this isn’t possible

What are your husbands iron levels? How long has he had iron overload? Has he been genetic tested? I'm under care of hematologist/oncologist specialist. He ordered therapeutic phlebotomy. I joined a group on the internet that recommended lifestyle changes to avoid phlebotomy so often. Im down to every 6 months. My memory is sound now --no brain fog.

When you mentioned 900+ what units are you referring to?

Donate blood like double red blood cells.