Clinical negligence - Hemochromatosis missed diagnosis - Louis' Story

What is genetic haemochromatosis?
Genetic haemochromatosis (GH) is an inherited condition where the body absorbs too much iron.
As early diagnosis is difficult, many people are diagnosed later than they should be, leading to significant and lasting consequences. Compensation can help people who have suffered damage due to late diagnosis start to re-build their lives.
What is haemochromatosis negligence?
Haemochromatosis negligence refers to a failure by healthcare professionals to diagnose or treat the condition of haemochromatosis, which results in excessive iron accumulation in the body. This can lead to serious health complications such as liver damage, heart disease, and diabetes.
How we can help
Many people receive their hereditary haemochromatosis diagnosis far later than they should have done, which can lead to significant and lasting consequences.
If you have suffered due to late diagnosis of GH it is vital that you maximise your recovery through active rehabilitation. If you have suffered due to errors in treatment and have a compensation claim, we can help you rebuild your life by obtaining interim compensation payments at the earliest possible stage.
Contact us for more information - www.moorebarlow.com/services/...

[@tilldeathdouspartharmonytr9829]

My farther was left fir 15 years in pain. Undiagnosed told he had diabetes. He lost all his limbs and died. Then 2 years later my 28 year old brother had the same pains and symptoms. He was given insulin a year later he died. He had been having problems with his oancreas since he was 14 years old. It was only when he died they told us he had hemochromatosis. They should never of had to suffer or die because the nhs failed to correctly diogenes them. We never even recived an apology.

[@samanthadelahunt3698]

Hearing stories like this makes me so grateful I was able to get my diagnosis so young. Just last year right before I turned 22, I had panels done that showed high iron. So I asked to get tested for hemochromatosis because I’m a hypochondriac and am always googling. They agreed and two weeks later got the results back. I’m heterozygous, but for some reason I’m experiencing quite extreme symptoms. My doctor told me she had never seen anyone with symptoms like mine who’s not a man over 40.

[@tayloranderson456]

How much iron do you consume?

[@aaronhaley3994]

Im 36. From the usa. My care was threw veteran affairs... it has progressed to the point of liver chirosis. All of my symptoms are documented for YEARS. The gastroenterologist there that they sent me to was HAPPY to tell me she has seen people with cirrhosis live for 15 years... im 36... with 2 children under 10... and the studys i have read say its more like 10 years.... if i dont develop liver cancer first.. which usually happens within 5 years of hemochromatosis diagnosis with liver chirosis.

[@aaronhaley3994]

I should add my dia osis was less than a year ago.. it took 5 years for my doctor to decide to run the test..

[@isidromei5879]

A similar story, in 2009 I had 800 ferritin and I was not diagnosed until 2015

[@crackedshamrock]

I was diagnosed with hemochromatosis and cirrhosis in 2001-2 at age 40. I am tired but still plugging along.

[@jenniebyram8032]

I also had a late diagnosis when I was 60 yrs old. Now at 68 yrs old, I have found, through experimentation, that a combination of carnivore/keto diet, annual phlebotomies, and coffee enemas are working for me. With a ferritin of 1007, it was clear I had some damage repair work to do. Stay positive. . . .be resourceful!

[@paulmullaney5566]

Hi, obviously this is a real late response but how do you manage heamochromatosis with a carnivore diet and keto? Does a high meat consumption not increase iron levels ?

[@robertmoser8882]

I'm 58..;4200 ferratin level at first. Now 2300 after 3 full blood draws over 4 months

[@barbaramcfadden8327]

​@@paulmullaney5566 it doesn't with me if I include dairy(calcium) and or egg yolks. Starting yesterday I am doing just meat for a week and will re test iron panel

[@barbaramcfadden8327]

Do you think the coffee enemas remove iron! Is there iron in bile?

[@tayloranderson456]

Carnivore is exact opposite of what HH people should eat.@@paulmullaney5566

[@cdsilva7555]

I am in a similar position two years have had a condition where I have had high ferritin, liver diagnosis shows lesions but not followed through. Two years of chronic pain. Genetic test for hemochromatosis in this county negative but my brother living in Australia has been diagnosed with the disease showing it is hereditary. Have tried to get an appointment with the GP to raise the issue but this is almost impossible as its is based on the first 30 calls received in the morning that get through. Now thinking of filling a negligence claim. Knowing that a person is being poisoned by high iron in the blood my GP has done nothing to bring it down but more blood tests . I am over 65 so cannot give blood to reduce the iron level that way.

[@Renofirefly30]

Ive bern misdiagnosed with depression, anxiety, dehydration and peri menopause. I was given depression meds, hormones and told to drink more water. I have hemochromatosis. I discovered it from a 33andme genetic test. I went to my local health department and not only was my ferritin over 3,000 but my ANA was positive, speckled 1:160 titer. Im in the absolute beginning phase of treatment and havent had a chance to adtess my ANA yet. My liver MRI is in teo weeks. We really need to be our own advocates because doctors can have tunnel vision and be shrouded with arrogance.

[@jamiemcg3223]

i`ve had the same experience. been feeling unwell, joint pains, tiredness, feeling angry and memory lose. steadily getting worse over the past 2 years. constant doctors appointments, 8 months signed off work due to how bad it got, to then be diagnosed with Hemochromatosis , where my ferritin lvl was in the 1300`s. to then be told by my gp that my ferritin was high since 2018 but they never notified me or investigated it. so now i`m 36, unable to work the job i`m trained in or follow the career i built up myself due to constant joint pains, loss of grip in my hands and a diagnosis of artheritus caused by the build up of iron for such a long period

[@samanthadelahunt3698]

The loss of control of the hands has been the hardest for me. Got me thinking it was cataplexy and wasted a bunch of money on a sleep study 🙃

[@jamiemcg3223]

@@samanthadelahunt3698 sorry, my KZbin never notified me of your reply 🙈 it’s terrible. My health has declined even worse since I wrote this 😢

[@mariahoulihan9483]

I have just been refused a NHS gene test for the condition. irreglar Heartbeat (I will be having an ECG), liver and kidneys raised and blood count, 22 years of ME/Chronic Fatigue Syndrome, Osteo and Rhumatoid Arthritis and fibromyalgia. Past months I keep vomitting and feel nausea often. i have lost over a stone in weight and not trying. My legs in particular are extra painful these past months with mobility almost at nil. Thinking of going private. NHS said and I quote, 'hour blood levels are not bad enough'..yet had enough to refer me to haematology. Not sure what to do next. Just heard this today so all new. I did feel as if the doctor spoke to me like I was hindrance which really got me down and upset me.

[@pulchritudinousbrainiac3424]

Please give an update if possible, I'm being referred to a Hematologist as well.

[@GUAMANIANable]

The genetic is actually relatively inexpensive here in the US. I was surprised to hear Louis' story because I read that in the UK the genetic test is done routinely due to the fact that the disease is widely seen in populations with Celtic heritage. Also amongst NW Europeans in general.

[@rogersbabygrandpiano6221]

So sorry to hear you're suffering like this, Maria. Please look into getting a simple haemachromatosis gene test from the charity Haemachromatosis UK. It's a fingerprick test you do at home - you order it online and they send it by post. They send the results to your GP too. It's worth taking your health into your own hands. Doctors are dismissive of ME/chronic fatigue because they believe there's nothing they can do. If you do the genetic test yourself at least it would put your mind at rest one way or the other. Your surname shows you have Irish roots so you may be at risk. I hope you find some answers. Take care.

[@Galbereth]

Dear Maria, sorry you are feeling so unwell. Are you in UK .? If so you can get a private and DIY at home HH test done with the Haemochromatosis Soc (find them online) for £120..... Love, Mel in Devon UK 🍰🌻

[@Misfit-from-Zanti]

Yup.. I was thought to be an alcoholic and was treated like..,, Well, we're not going to help you till you help yourself and stop your drinking. At this point in time I hadn't had a alcoholic beverage in 2yrs. They of course wrote patient denied alcohol use. 😡 Heart Dr had me sit through a lecture about what alcohol does to your heart.. ie. palpitations and irregularity. It wasn't until my dad died and I found out about hemochromatosis.

[@Galbereth]

Oh my word, that's terrible. Why would they not believe you....maybe you should've offered a wee/blood sample to prove it! Hope things improving for you now. Condolences for your loss. Love, Mel in Devon UK 🍰🌻

[@williamroberts6294]

I have just found out at 67 I have hemochromatosis. I have been sick for many years with many different things and we finally found the cause. I was diagnosed with severe sleep apnea in 2003 but, I had been in out of hospital with different things I had been off work yet again for 18 months. I developed arthritis just after my sleep apnea diagnosis. It became that bad I had a shoulder replacement in 2019. after a long time off work I recovered and went back into work. In March 2021 I had a heart attack at work and was taken to hospital. I was moved to another hospital as they said I had a second heart attack. I had stents put in and after 2 weeks I was sent home. I became sick again and was taken back into hospital and was then taken to another hospital this was in May 2021. I was told I would need a triple heart bypass which I had 1 week later. I spent a year with my bed downstairs as I was just not recovering. We are now in 2024 and I am in a wheelchair with heart failure arthritis and diabetes and severe fatigue. The triple bypass was meant to help but I just did not recover. In October of 2023 I started to have restless leg syndrome and I know millions of people have it but, I also had pains in my legs so I went to the doctors. The doc sent me for an iron test which came back abnormal so the doc sent me for another test and this is when I was diagnosed with hemochromatosis in January 2024. I was told that they had missed my high iron tests from before 2015. The doctor apologised but I lost everything in 2021. I lost my health way before 2021 and then we lost everything financially as I was unable to work my wife was unable to work as she had to look after me. We couldn't pay the mortgage and we couldn't pay our debts. I now have nearly all the complications of hemochromatosis and that is from the NHS website. I have heart failure I have arthritis and just got diagnosed with diabetes in 2024. Every blood test bar 2 I had in February all came back abnormal. I am waiting for more tests to confirm the iron overload in my heart and tests on my liver.

[@3cardmonty602]

I was diagnosed at 58 with a ferritin of 4580. Took 5 years to get my ferritin normal with regular phlebotomies.

[@Renofirefly30]

You're the only person I've seen with ferritin higher than mine. I'd love to talk to about your diagnosis and what you did to get better my ferritin is over 2000.

[@lauchlanguddy1004]

everyone missed HC, they waited till you developed liver cancer or diabetes, damn lucky to get liver function or that lucky blood test. Needs to be screened for in celtic populations

[@LovingIdaho]

I am 54 . I was diagnosed today.

[@MIncoMiss]

I’ve been sent a link asking to update my information prior to hospital appointment tomorrow (ENT post-op) and found two medical conditions listed which I have not been aware of. 1. hereditary haemochromatosis, 2. type 2 diabetes. It appears on the link sent that I was diagnosed with these in July 2023 and have not heard anything about it. Ive called my GP to clarify but was told I have to bring a letter asking for confirmation of these diagnoses.

[@clarabartha1737]

So what was your gain /compensation?

[@MrTana48]

This is ridiculous a solicitor taking advantage of the situation these people are like opportunistic parasites THE QUESTION IS GOING TO THIS SOLICITOR DID IT SOLVED YOUR MEDICAL-HEALTH CONDITION ???