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Posts (8)

Thu, Aug 22 12:51pm · Looking for advice..hemochromatosis in Digestive Health

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.

Tue, Aug 20 12:33pm · Myelproliferative Neoplasms-Blood cancer info missing in Blood Cancers & Disorders

Hi Justin, thanks for reaching out.
Your post proves my point which is that Mayo inccorrectly refers to Myelproliferative Neoplasms as myelproliferative disorders. These are cancers and until Mayo and others update their websites to reflect this, Patients are not receiving proper diagnosis and care. Also it causes a lot of unneccesary stress and confusion. Our friends, relatives, and doctors do not believe us when we tell them we have cancer because they search it and on many sites it is listed as a disorder. I wish it were just a disorder but it's not. It is a neoplasm (cancer). It is horrible to get this diagnosis and not have support from others. This change from "disorder" to "neoplasm" was made many years ago, I believe in 2010. Why is Mayo still referring to it as "Myelproliferative Disorder" and not "Myelproliferative Neoplasm"? Is there a Mayo hemotologist or oncologist who can weigh in on this?

Tue, Aug 20 10:48am · Myelproliferative Neoplasms-Blood cancer info missing in Blood Cancers & Disorders

Hello, moderators, I’m pleading for your help.Over and over I hear how those of us with MPN are not diagnosed when all the signs are present. Please, please update the Mayo Clinic site’s info on blood cancer. I was on the site yesterday and clicked on a link to blood cancers. MPN was not mentioned at all. I clicked on another link to blood cancers on Mayo’s site and again no mention of MPN only leukemias. MPN causes blood markers to ELEVATE yet the blood cancer info only talked about blood markers being low in blood cancer. Also, many doctors still think MPN is just a blood disorder. Time for Mayo and others to please update their info so patients can get properly diagnosed and hopefully slow progression instead of being diagnosed after a stroke or internal bleed sends them to the ER. After 12 years of high platelets and doctors ignoring my symptoms, I diagnosed myself. My story is too common, unfortunately. Thank you for listening.

Wed, Jul 31 8:46pm · H63D Gene Mutation & Severe Iron in my brain in Blood Cancers & Disorders

They have only been tested for the two main gene mutations for hemochromatosis, not the PANK gene. Did you test positive for that? I see iron accumulating in the brain is a symptom.My daughter is suspected to have familial hypobetalipoproteinemia a genetic condition that causes very low cholesterol. She’ll get tested in a few months. I’m sorry I would’ve left link to website but don’t know how to do that here. You should be able to find it easily. I’m sorry you’ve suffered so but there is hope as phlebotomy will help to draw the iron out of your brain as your body uses those iron stores to make new blood(I think) My best to you! Hope to see you on the iron email chain soon.

Wed, Jul 31 10:18am · H63D Gene Mutation & Severe Iron in my brain in Blood Cancers & Disorders

Hi, you need to go to the iron disorders institute website and get on their email chain. This email chain is their support group and is for folks like yourself with hemochromatosis. I joined about 6 months ago because my husband and daughter have iron overload and I needed answers since no doctor knew what to do. The people on the email chain have taught me so much. They are a wealth of info and have been through the ringer! The % TSAt is the most important factor not ferritin. If %tsat is over 40% you will have free iron binding to organs such as brain, heart, liver. You need to start phlebotomies to reduce the iron in your system. I’m sure they told you that much, I hope?? I’m sorry you’re going through this but please go to the site and get in the support group email you will learn a ton!

Fri, Jul 19 4:30pm · High platelet count in Blood Cancers & Disorders

We are also at risk for bleeds because our platelets are many but they are also low quality. Blood clotting factors test and von willerbrand test good to get as well.

Fri, Jul 19 12:26pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Hi, I have Essential Thrombocythemia with JAK 2 mutation and perhaps these folks looking for answers would have more luck if they were steered toward a site that dealt with JAK2 mutation all day long. mpn research foundation is the research foundation for myelproliferative neoplasms (MPN) and they have a community site as well for us with these cancers to connect. the site won't let me add a link because I am a new member so just google it. We have members from all all over the world dealing with JAK2 mutations who have decades of experience and can answer questions. The three main MPN's are Essential Thrombocythemia (ET), polycythemia vera (PV) and myelfibriosis (MF). Thank you for all that you do!