Haemochromatosis 'bigger threat than we thought'

[helvella]

Although most often we see people with low iron (ferritin) levels, there has been a proportion who have high iron levels. Two new papers suggest that the consequential damage of haemochromatosis is far worse than had been thought. (On what evidence that former thought was based, I don't know. Possibly no-one does.)

I keep wondering if it could be at the very least a contributory factor to some thyroid disease. Or, if not a direct cause, possibly something that is made more difficult and damaging in the context of inappropriate thyroid hormone levels.

Haemochromatosis 'bigger threat than we thought'

17 January 2019 Devon

Jenny Lees

A "stealth disease" which can cause liver failure, diabetes and severe arthritis may be much more common than previously thought, research has shown.

Genetic disorder Haemochromatosis causes the body to absorb too much iron from food and can lead to serious complications if left untreated.

Exeter University said the condition could affect up to 20 times more people than earlier figures suggested.

Public Health England has welcomed the research.

Thought to be the UK's most common genetic disorder, haemochromatosis is linked to a faulty gene passed from both parents to their child.

It was believed to seriously affect about one in 100 carriers.

But the new research has suggested the true level could be closer to one in 10 among women, and one in five for men.

Lead researcher Prof David Melzer said he was astonished at the findings.

"We've shown that hereditary haemochromatosis is actually a much more common and stealth disease, including in older people," he said.

The UK National Screening Committee said it will be "look at the evidence to screen for haemochromatosis in 2019/20, as part of its routine three yearly review."

Jason Cloke, 42, died in 2010 after his organs were damaged by a build up of iron.

His mother, Jenny Lees, herself a haemochromatosis sufferer, believes three members of her family died from the condition.

While her mother and sister were never diagnosed before their deaths, she said they died from severe liver damage; a common symptom.

The cause of her son's death, however, was confirmed as haemochromatosis.

"His liver was cirrhosed, he had chronic diabetes, he then picked up hepatitis A and they couldn't give him the antibiotics that he needed," said Mrs Lees.

She has called for regular blood tests to help detect the condition.

"You don't believe that you're going to lose a child before your death, it's the wrong way round," she said.

Prof Melzer said haemochromatosis was easy to treat if caught early enough, but was "difficult to spot".

"It tends to only be diagnosed quite late on when a lot of the damage is done and treatment is only partially successful," he added.

The professor and his fellow researchers have called on the NHS to find routine ways of testing for it.

Rest of BBC story here:

bbc.com/news/amp/uk-england...

Exeter University press release:

exeter.ac.uk/news/featuredn...

Research papers:

bmj.com/content/364/bmj.k5222

academic.oup.com/biomedgero...

[SlowDragon Ambassador]

Hashimoto's and hemochromatosis links

Rare for a GP to consider this

redriverhealthandwellness.c...

ncbi.nlm.nih.gov/pubmed/182...

functionalhealthnews.com/20...

stopthethyroidmadness.com/h...

researchgate.net/publicatio...

[Kes8]

Thank you for posting those links all really interesting.

I'm very pleased awareness of the condition seems to have increased. When my father died of a liver carcinoma secondary to haemochromatosis nearly 15 years ago the doctors didn't know what haemochromatosis was and asked us to give them the info that we had found.

[helvella Administrator in reply to Kes8]

Fifteen years ago I knew far, far less about health and medicine. Yet, even then, I knew (in the broadest and most elementary way) what haemochromatosis is and that it is genetic.

Whatever the downsides of the internet, the access to at least half-way decent information has caused, and continues to feed, a revolution in medicine.

[LindaC]

Thank you so much for posting this + for the two contributions below.

[Cooper27]

I was reading this earlier! It's interesting, as it's not really a widely known condition.

I've just always presumed us ladies struggle for iron, and wouldn't have said no to anything fortified with it. When I actually got tested, it turned out I was at the upper limit, and had gone over range on the next test (keeping an eye on things now).

My aunt had to have a liver transplant, so after reading these findings, I'm obviously now wondering if there's a genetic issue in the family.

[helvella Administrator in reply to Cooper27]

Combining two issues makes me unhappy at iron fortification.

First, the forms of iron used are often the most difficult to absorb which undermines their claims.

Second, once it is established, it can become very difficult to avoid.

On top of that, we end up with the utterly crazy situation that we get told to consume fortified foods in order to increase intake. To me, it seems to be a way of flogging foods that do not inherently have the nutrients we need. Better to consume the foods that provide those nutrients or, if needed, supplement.

[Cooper27 in reply to helvella]

I guess it's their way of persuading us to the pyramid diet. When you look at the "risks" of going gluten free, they always say you'll miss out on essential nutrients, but they're added nutrients anyway

You're right that we're probably just better supplementing them ourselves - these days a cheap blood test can help you tailor a supplement regimen to your specific needs.

[helvella Administrator]

I have long wondered at what level iron becomes damaging?

Does ferritin at, say, 145 or 155 (with a typical 150 top of range) cause problems? Or is it only when considerably higher?

[Cooper27 in reply to helvella]

Good point! I never considered it works the other way too.

[radd in reply to helvella]

helvella,

Obviously having extremely elevated iron levels is not good and the majority of haemochromatosis sufferers have ferritin levels in the thousands when they are eventually diagnosed but it generally has to have been extremely elevated for many years before organ damage is suffered.

As Prof Melzer said "it is difficult to spot". However, he also says "it was easy to treat if caught early enough" but the removal of iron via repeated theraputic phlebotomy not only removes iron but also precious thyroid hormones, vitamins & nutrients, so making the maintaining of optimal levels a nightmare. It definitely isn't easy.

[DawnieA]

My Dad has this and as soon as he was diagnosed, me and my brother were told to get tested. Neither of us carry the gene. My Dad has to go to the hospital regularly to have a venesection to keep his under control.

[helvella Administrator]

An irony being that whilst "dumb" software is used to print an asterisk (or whatever convention is used by that lab), "smart" software has the potential to offer pointers of much greater sophistication.

My favourite issue is that B12 and folate deficiency gives rise to over-sized red blood cells. Iron deficiency gives rise to under-size red blood cells. If you have both, the mean cell size might be right in the middle of the range. But add in Red Cell Distribution Width (RDW) and we can have a much better idea as to whether there is a problem or not.

It really doesn't take much to do this level of interpretation. At present we don't see much even at this level. And we often see the B12/folate issue being missed.

[Alli1]

Thank you so much for all this information it’s so informative - blooming heck what isn’t linked to this debilitating thyroid disease that medics know so little about!

Ali

[dtate2016]

Yes hemachromatosis is quite the prevalent disease. The American diabetes Association website has a whole page on hemachromatosis and how the human genome project brought the prevalence of hemachromatosis to light.

My husband suffers from hemachromatosis we discovered it when he was 55 years old - Which is a common age for the damage to begin to show up. We found it quite accidentally with a brilliant young doctor that he went to actually for a cold and/or flu episode. He had developed a skipping heart which he didn’t mention. He had always had a bronze tinge to the skin. The doctors here in the US really didn’t quite know what to do about it - so they decided to take blood from him. Yes the cure for hemachromatosis in the 21st-century is bloodletting ! Ha! However it worked. Their theory was to starve the other organs of iron. That over the years the other organs had assisted the liver and took on iron - hence the problem with the heart. The cardiologist said it was like the heart had a Charlie horse. More research revealed that in fact that is what the body does many times. All other organs in the body will take on extra iron including the pancreas and the brain. The American diabetes Association points out that doctors have long known about something they had called bronze diabetes. They didn’t know for instance back in the 30s what was causing it but they did know it existed. My husband has always had a borderline blood sugar problem as well. It was getting progressively worse and the doctors were talking about putting him on insulin. All of that has gone away now - it took 18 months. After 18 months of progressively taking blood about 1 pint sometimes twice a month the organs gradually gave up the iron that was in them and his heart stopped skipping beats and the pancreas begin to function better - no more problems with blood sugar .

We have learned many things to assist the bloodletting cure. Number one he Has to stop eating so much redmeat and he was quite a red meat eater! Cabbage also somehow removes iron and the Irish have long known about it. Which incidentally the genome project and the diabetes Association report that this is inherited largely from those with Irish background. My husband is of Irish dissent. but the number one thing that we learned that will help eliminate the iron is Tumeric! Quite accidentally again we learned this when he began to take Tumeric for another problem. He had just had a blood test for his iron content in the blood and it was at 35. ( when they discovered and diagnosed him with hemachromatosis it was at 500 or so). in order to starve the organs the doctors wanted to keep the ferritin count below 50. ( incidentally he used to have the most beautiful head of hair but now it’s quite thin ) anyway back to the Tumeric - he took the Tumeric for 30 days and went back for another blood test which was routine every 30 days. He had actually been eating more red meat than he should have, but the ferritin count had not budged it was still 35! He was expecting to be scolded by the doctors but instead they patted him on the back and said you’re doing great with the diet! ( no he wasn’t it was the Tumeric.)

That was almost 2 years ago now and he takes Tumeric regularly all the time and he is 63 now . They take blood from him only rarely maybe once every six months now. His heart has never returned to skipping his blood sugar remains constant and his hair remains thin. Even as a child he had complained of his bones hurting and no one listened to him because children don’t have pain in the bones right? The arthritis like pain is the only thing that remains and I’m afraid the damage was too great to the bones which are really just another Organ. When you look at x-rays for instance, of his finger bones, it’s like they have melted away he doesn’t have rounded bones he has hook like bones . He underwent surgery for carpal tunnel syndrome when he was 35. I have not given up hope that the bones will rebuild but I know that that is a much slower and perhaps unlikely process.

So yes hemachromatosis is perhaps the most prevalent disease affecting those of European or Irish dissent - The single most common disease some experts say. And the most undiagnosed. They treat all the other symptoms the heart, the diabetes, the arthritis - a Canadian Study even reported some epilepsy may be caused by hemachromatosis. My son has epilepsy and has been treated for it for over 30 years. The doctor say he doesn’t have hemachromatosis but I don’t believe them .

There is great Hope in early diagnosis and bloodletting does help. ( please humor me I know there’s a more scientific term) The thyroid is an organ and it could well be affected. Tumeric does help I know it I’ve seen it. Cabbage does help. Reducing iron does help.

So glad to see this discussion and being a part of sharing what works. It’s so much easier than suffering in the dark.

[Jessie1234]

Thank you for that. I’ll start on the turmeric. How does your husband take it?

[helvella Administrator in reply to Jessie1234]

You have replied to the original poster, me, not dtate2016 who mentioned turmeric.

[dtate2016 in reply to Jessie1234]

Missed this question somehow.

He takes it in all kinds of ways. He mixes it with black pepper and coconut oil and takes it like a paste a couple of spoonfuls a day. For a while we were putting it in capsules and yes still mixing it with black pepper. Sometimes we purchase it already mixed up with black pepper. He has done his own research and also experimented on himself and has come to the conclusion that mixing Tumeric with black pepper and and oil of some sort makes it the most bioavailable - his preferred oil is organic coconut oil which is in a solid form at room temperature - for him he has determined this is what works best.

[Jessie1234]

Sorry helvella. I didn't realize that.