Hemochromatosis Pt. 2

Living with Hemochromatosis (part 2)

[@clab9015]

Thanks for sharing this! It's a great injustice that doctors don't do a full iron panel as a routine test anymore since 1998. When I was 26 years old in 1993 my GP saw something in my blood work that raised alarm. I'm not sure what it was at the time, but I suspect high ferritin and transferrin saturation, which was unusual in a young female. I remember her mentioning to me the term Hemochromatosis, and said that I'd have to be referred to a specialist. Before that happened, she abruptly left her practice, and my medical file was left in limbo, and I had to find another doctor. My file didn't follow, and the new doctor didn't address it and back then didn't really think it was important. We didn't have Google back then to research things. Fast forward to 2023, perimenopause has made my cycles erratic and lighter, and my current GP usually tested my ferritin yearly and it was recently on the rise. I also felt fatigued, aches and pains and heart palpitations. I remembered something from 30 years back and I mentioned Hemochromatosis to my GP, and he said that my symptoms were probably just long Covid, or hormonal changes. I did some research online and insisted that my doctor order a full iron panel. My saturation was 91%, and ferritin 327. I was well on my way to overload. Next was the genetic test which confirmed that I was in fact homozygous C282Y. In Canada, it takes months for a referral to a specialist. While I waited for that to happen, I went to the blood bank and was eligible to donate every 84 days. By the time I saw the hematologist 9 long months later, and GI doctor 11 months later I was almost in maintenance, with no organ damage. Next came the testing of my siblings and large extended family. My mom and brother and both compound heterozygotes with mild symptoms, and some of my cousins are in bad shape from this. I only wish that it could have been taken care of sooner to that all that could have been prevented. I was lucky to have a GP who listened to me, and I do hope that Hemochromatosis is on his radar from now on.

[@DeverVision]

I agree 100% thank you for watching.

[@greedycapitalist8590]

It makes me realise how lucky I was. I had a phone appointment with my GP about a couple of incidents I had (fainting while stood in a queue one time, then a really bad attack of vertigo a few weeks later) and he immediately zeroed in on the possibility of iton overload. Sent me for two blood tests spaced a couple of months apart, then a genetic test to confirm I've got both sets of mutant genes, then referred to a haematologist. It was actually waiting for the haematologist appointment that took the longest, several months, but at least after that I could start the initial course of venesections. But it seems I was lucky with my GP. I live in the North of England, so maybe HH is more common in my part of the world than yours. On the other hand, I've spoken to medical professionals who've never even heard of haemachromatosis. Working in a hospital the year before last, I got friendly with a nurse and told her about my condition - she'd never even heard of it, I had to explain what it involves. And she worked with older patients, who'd be more likely to show symptoms if they've got it, so it's probably something she should have been aware of. The craziest thing is, it's very manageable condition provide it's diagnosed before serious symptoms develop. If people got their blood tested for iron levels, say once a year, they'd get early warning of it - and a blood test is a very cheap and simple procedure, which could head off the possibility of trouble later on.

[@DeverVision]

Wow, glad the video found you all the way in England. Hopefully you continue to heal and stay well. I can relate 100% with you. Thank you for watching.

[@deborahmedley8119]

Bless your heart. I love you son.

[@mammamia200]

Honestly Shaun, you sound like a replay of me. They prescribed so many meds before I knew and I wouldn't take any of it. Even a hematologist and an oncologist didn't know. They were puzzled and wanted to do a bone marrow biopsy. I never sleep good because I hurt everywhere. My spine and cervical are a mess. Arthritis turned into stenosis. Arthritis every where. Just doesnt get better and you just learn to live with it mostly. I do take 325mg hydrochodone twice a day now but it really doesnt help much at all. I wake up with my legs hurting so much and my feet burning like pain. A feeling of swelling but they aren't swollen. Are you Irish European?

[@DeverVision]

I’m right there with you. Except I can’t take any pain pills due to my job. Only over the counter which doesn’t do much. And, I’m sure I have some Irish in me. It’s rough at best. I suffer and deal with it the best I can. I keep pushing on day to day.

[@mammamia200]

@@DeverVision That's all we can do. Take good care!

[@jferrisbrrrbuns]

BroBro gotta get the pokeypokey

[@DeverVision]

You should go with me.

[@imataylor8538]

I have that too that’s reason my bone hurts real bad drs just found out have overload iron

[@DeverVision]

It’s not a fun journey. Glad they figured it out sooner than later. I suffer daily. I just fake it real good😐😑

[@callmethebreeze1297]

You have to change your diet, Red Meat has a lot of iron in it, eat chicken it has some iron. Drinking coffee or Green Tea after eating helps stop some of the binding of iron in your blood. Look at your food labels. Cereals have a shit load of iron in it. Dont eat cereals. I try to keep my daily Iron intake at 10mg or lower. Look at all the "food labels".! I used to get so tired, that I would take daily naps because I had too much iron in my blood. I hope this helps, do some research, and have steak broiled as a treat, maybe once every two weeks. Stay away from iron skillets. Good luck.

[@DeverVision]

Thank you.

[@openedmind5619]

Red wine with dinner works for me. Helps keep us from absorbing iron.

[@callmethebreeze1297]

@@openedmind5619 I did not know that. Thanks I will try that.

[@retacarpenter6547]

Did all your joint pains and hearts problems stop after you got the ferritin lowered?

[@DeverVision]

For the most part. Sry for late response. In short. Yes. Mostly everything went back to normal. I have permanent joint damage. My hands and feet are really bad.