I am so sorry for what you have gone through, It should never have happened like this. I am from USA with British and Scottish parents. I have been ill with various symptoms over last 2 years and now I have signs of liver damage. They ran a test and now it shows high ferritin. I just had blood drawn for HFE Genetic testing. Waiting on results. I came across your video today. Day after blood drawn. My heart is breaking for you. One doctor told me to stop drinking when I told her I had enlarged liver. I absolutely never would drink alcohol. I was so upset with how the doctors dismiss so much. Finally, I have a doctor, who probably also considered my British heritage , who felt it was time to test the genes. I pray for your family and truly I am so sorry.
I’m so sorry for your loss. I have Hemochromatosis. I was diagnosed 4 years ago with a Ferritin of 4580. I have finally gotten it down to 22. But, in the process I lost my job, I required Open Heart Surgery to replace a defective Aortic valve, and my wife got a Stroke from the stress. And I keep telling my sister to get tested, and she keeps ignoring me. I’ve experienced the joint pain & fatigue for years. It was only until I got night sweats and leg cramps in the Summer of 2017 that my Gastroenterologist ordered a Ferritin test. I’ve had this my whole life. I’m 62 years old now. Nobody will want to hire me now.
Testing for haemochromatosis should be part of routine test from GP surgery’s. , thank you for sharing your beloved husbands story with us. Much love x
I’m so so sorry. You & your family were let down. Our family has had similar experiences & losses because of neglect by doctors. People have to be prepared to question, to fight & to advocate on behalf of those that do not have the strength or energy to do this.
So sorry for your loss x if my brother, who lives in Australia hadn't had a genetic blood test... I would still be suffering joint pain, fatigue and depression. I'm a different woman now. It should be part of routine blood tests in the UK and educate GPs
Absolutely heartbreaking. I’ve been trying for nearly 2 years to get a genetic test even though my brother and sister had been tested. Eventually through tenacity and presenting the facts did I get a test, we’re Compound version, no luck there because I believe no body takes this variant seriously. My fathers family has a history of early death by strokes. I have developed SVT, and recently past 4 years PAF & T2 diabetes. I believe may various hip, spine and neck problems may well be part of it.
I’m waiting on a hematology referral.. I have both genetic markers and high ferratin. I can’t donate blood without a doctors approval due to my two platelet issues, also hereditary. My heavy periods from the platelet disorders were regulating me.. they stopped. My iron is going up. I don’t know how long the referral will take.. weeks, months…. Will they listen to me? I can only hope. Doctors need to be educated about this. So do patients. I’m so sorry for all you’ve gone through. Nobody should live this way.
I am so sorry for your immense loss - I was diagnosed almost 18years ago and am one of the lucky ones. Covid was an awful time - particularly for those of us who needed venesections and were unable to avail of the service - we weren't a priority. Keep telling your story - Peter's name should live on 👏
So sad , his GP is a disgrace. Hope she is suing the NHS to help with the financial hardship . Im so angry after watching that. I had many GPs and consultants telling me i was imagining my chest pain. For 20 years i had many needless ultrasounds on my gallbladder . It took me getting over a addiction and to get liver tests and diagnosed with Hemocromatosis. RIP Peter x
Incredibly sad to watch this story. A story which shows why GPs need more education To monitor patients for this condition. I have it and was diagnosed at 52. I’m monitored and give blood regularly now but suffer extreme fatigue so can relate to this story. The symptoms are silent unless those we trust get us proper genetic testing to rule out this condition. Love to his wife and family and thank you for sharing 💕
I'm so very sorry. It is heartbreaking. I saw a doctor in 2018 in New York City who saw that my ferritin was 2800. He forgot to tell me. In February of 2022, I found out my ferritin was 3800 and that I had hemochromatosis. I was 54. The doctor could have killed me.
Your GP is a disgrace very upsetting watching your story, I was very lucky with my GP sending me to guy’s hospital, it’s a very serious disease as myself have arthritis in both knees and irregular heart beat because of the disease,should be taken more seriously from GPS .
I am so sorry for what you have gone through, It should never have happened like this. I am from USA with British and Scottish parents. I have been ill with various symptoms over last 2 years and now I have signs of liver damage. They ran a test and now it shows high ferritin. I just had blood drawn for HFE Genetic testing. Waiting on results. I came across your video today. Day after blood drawn. My heart is breaking for you. One doctor told me to stop drinking when I told her I had enlarged liver. I absolutely never would drink alcohol. I was so upset with how the doctors dismiss so much. Finally, I have a doctor, who probably also considered my British heritage , who felt it was time to test the genes. I pray for your family and truly I am so sorry.
I’m so sorry for your loss. I have Hemochromatosis. I was diagnosed 4 years ago with a Ferritin of 4580. I have finally gotten it down to 22. But, in the process I lost my job, I required Open Heart Surgery to replace a defective Aortic valve, and my wife got a Stroke from the stress. And I keep telling my sister to get tested, and she keeps ignoring me. I’ve experienced the joint pain & fatigue for years. It was only until I got night sweats and leg cramps in the Summer of 2017 that my Gastroenterologist ordered a Ferritin test. I’ve had this my whole life. I’m 62 years old now. Nobody will want to hire me now.
Testing for haemochromatosis should be part of routine test from GP surgery’s. , thank you for sharing your beloved husbands story with us. Much love x
I’m so so sorry. You & your family were let down. Our family has had similar experiences & losses because of neglect by doctors. People have to be prepared to question, to fight & to advocate on behalf of those that do not have the strength or energy to do this.
So sorry for your loss x if my brother, who lives in Australia hadn't had a genetic blood test... I would still be suffering joint pain, fatigue and depression. I'm a different woman now. It should be part of routine blood tests in the UK and educate GPs
I am SO sorry for your loss and how brave you are making this film to inform people. ❤
Absolutely heartbreaking. I’ve been trying for nearly 2 years to get a genetic test even though my brother and sister had been tested. Eventually through tenacity and presenting the facts did I get a test, we’re Compound version, no luck there because I believe no body takes this variant seriously. My fathers family has a history of early death by strokes. I have developed SVT, and recently past 4 years PAF & T2 diabetes. I believe may various hip, spine and neck problems may well be part of it.
I’m waiting on a hematology referral.. I have both genetic markers and high ferratin. I can’t donate blood without a doctors approval due to my two platelet issues, also hereditary. My heavy periods from the platelet disorders were regulating me.. they stopped. My iron is going up. I don’t know how long the referral will take.. weeks, months…. Will they listen to me? I can only hope. Doctors need to be educated about this. So do patients.
I’m so sorry for all you’ve gone through. Nobody should live this way.
Your story will help motivate many here to be more diligent about urging reluctant family members to get tested. Thank you for sharing.
I am so sorry for your immense loss - I was diagnosed almost 18years ago and am one of the lucky ones. Covid was an awful time - particularly for those of us who needed venesections and were unable to avail of the service - we weren't a priority. Keep telling your story - Peter's name should live on 👏
So sad , his GP is a disgrace. Hope she is suing the NHS to help with the financial hardship .
Im so angry after watching that.
I had many GPs and consultants telling me i was imagining my chest pain. For 20 years i had many needless ultrasounds on my gallbladder . It took me getting over a addiction and to get liver tests and diagnosed with Hemocromatosis.
RIP Peter x
Incredibly sad to watch this story. A story which shows why GPs need more education
To monitor patients for this condition. I have it and was diagnosed at 52. I’m monitored and give blood regularly now but suffer extreme fatigue so can relate to this story. The symptoms are silent unless those we trust get us proper genetic testing to rule out this condition. Love to his wife and family and thank you for sharing 💕
I'm so very sorry. It is heartbreaking. I saw a doctor in 2018 in New York City who saw that my ferritin was 2800. He forgot to tell me. In February of 2022, I found out my ferritin was 3800 and that I had hemochromatosis. I was 54. The doctor could have killed me.
🫂😓
Your GP is a disgrace very upsetting watching your story, I was very lucky with my GP sending me to guy’s hospital, it’s a very serious disease as myself have arthritis in both knees and irregular heart beat because of the disease,should be taken more seriously from GPS .
Very sorry they failed you