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Tuesday, August 25, 2009

Hereditary Hemochromatosis Linked to Stroke

People with a specific type of hemochromatosis, an inherited disorder that causes the body to absorb and store too much iron, have more than twice the risk of stroke, according to a report published in Neurology.

Monday, July 27, 2009

Hemochromatosis Diet Help

The condition itself [hemochromatosis] can be greatly aggravated by excessive alcohol consumption, Vitamin C intake, infections and other environmental factors.

As with most other conditions, one of the best ways to treat it naturally is to abide by a strict and healthy diet. While it is essential that you visit your licensed doctor and stringently follow any recommended medication, a healthy diet will help significantly reduce the amount of time taken to recover.

First off, you should avoid any iron supplements, including multivitamins that contain iron. Since vitamin C helps increase the human body’s ability to absorb iron, it is essential that you stay away from it as well.

A high intake of foods like beans, rice, nuts and grain is highly recommended as they do not contain any non-heme irons. One should also stay away from any food that contains sugar, as sugar greatly stimulates iron absorption in the human body. Foods rich in fiber content, eggs and supplemental calcium will help significantly in reducing the iron content of the body.

Health Care Tips -

Wednesday, July 22, 2009

Hemochromatosis - Recap Of Things I Have Learned

I borrowed this article from The Stephen Cobb Blog
Fresh perspective, forward thinking, informed by the past.

And the Damage Done: Hemochromatosis recap
by scobb on July 20, 2009

The following is a recap of things I have learned from my partner’s experience with hemochromatosis, a.k.a iron overload. I wrote this up for a support forum which is private, but I thought it would be helpful to make it available to anyone looking for information on this insidious condition. BTW, the circle+arrow symbol on the left is the alchemical symbol for iron, and yes, it is the same symbol that is used for the planet Mars and for the male of the species (I’m not going to touch that one, I have a hard enough time avoiding “ironic” puns when writing about this stuff).

[Disclaimer: I am not a doctor. Seek medical advice before acting on, or drawing conclusions from, anything I say here. By all means Google this stuff, but do so sensibly (check the bona fides of the folks writing what you read, distrust any site that is selling a cure, and look for the HONcode which is a good sign).]

When blogs or online forums mention hemochromatosis, also known as iron overload, they often leave you with more questions than answers. This is not surprising because hemochromatosis is widely misunderstood (and widely under-diagnosed e.g. if you know someone who has been diagnosed with chronic fatigue or fibromyalgia you really should check out hemochromatosis–if untreated it can kill).

You often hear “hemochromatosis can be treated” as though that was the end of the story. Not so… It is true that blood-letting or phlebotomy can reduce the amount of excess iron in the body (which gives the condition its name). However, most hemochromatosis is hereditary and cannot be cured. A person who has hereditary hemochromatosis today has had it since birth. The presence of excess iron in the body over the years may have done irreversible damage before the condition is diagnosed or treated. And getting treatment is seldom as easy as it should.

I know this, because my partner has hemochromatosis which is being treated with phlebotomy, but she nearly died from, and has been disabled by, the effects that the iron overload had on her all those years that it went undiagnosed.

So how does hemochromatosis disable a person if not treated? Let me count the ways. It leads to iron build-up in the joints, the heart, the liver, the gall bladder, and glands like the adrenals, thyroid, and pituitary. (More in a moment on what those things means to one’s health).

Untreated hemochromatosis leads to cirrhosis of the liver even in people who don’t drink, and hastens cirrhosis in those who do drink). It can eventually lead to liver cancer and contributes to heart disease. Have you got any family members who have liver problems but swear they don’t drink? They may be telling the truth. Pay particular attention if you have Irish ancestry–hemochromatosis is more prevalent in Celtic genes (see “Celtic Curse“).

Remember I said hemochromatosis was hereditary and often incorrectly diagnosed? My partner had surgery on both shoulders then had her gall bladder removed way before any doctors connected the dots. Looking back, her mother died relatively young, of a massive stroke. Her mother’s sister died very young from liver cancer. Her father had a triple bypass at 50, then disabling and mis-diagnosed liver disease at 60. Serious heart problems contributed to his death at 70 and that of his son at 40 (ages approximated in the interests of privacy).

An uncle still living has been disabled (and hammered financially) by severe heart problems. Hemochromatosis was at work in all those people but never diagnosed.

So what happens when the adrenals, thyroid, and pituitary fail or malfunction due to hemochromatosis? The list of consequences is long, but worth noting, so here goes:

Adrenal insufficiency or failure: Muscle weakness and fatigue; Weight loss and decreased appetite; Darkening of your skin (hyperpigmentation); Low blood pressure, even fainting and loss of consciousness; Salt craving; Low blood sugar (hypoglycemia); Muscle or joint pains; Irritability; Depression; Pain in your lower back, abdomen or legs; Severe vomiting and diarrhea, leading to dehydration. (Note: there are variations on adrenal issues, c.f. chronic adrenal insufficiency, hypocortisolism, hypocorticism, Addison’s disease.)

Adult Growth Hormone Deficiency: Weakened heart muscle contraction and heart rate; Increased arterial plaque and blood pressure; Elevated lipids or fats in the blood (cholesterol, LDL, triglycerides); Decreased exercise capacity due to decreased cardiac output and decreased metabolic rate; Abnormal body composition (increased abdominal obesity–waist to hip ratio); Decreased bone density due to decreased synthesis of bone; Increase in fractures and osteoporosis; Decreased muscle strength and muscle size; Decreased lean body mass; Increased fat mass; Low blood sugar (dizziness or fainting weakness or tiredness, headaches); Poor concentration or memory; Decreased sexual desire; Sleep problems; Shyness and withdrawal from others; Nervousness or anxiety and decreased social contact; Sadness or depression.

Hypothyroidism: Fatigue; Weakness; Weight gain or increased difficulty losing weight; Coarse, dry hair; Dry, rough pale skin; Hair loss; Cold intolerance (you can’t tolerate cold temperatures like those around you); Muscle cramps and frequent muscle aches; Constipation; Depression; Irritability; Memory loss; Abnormal menstrual cycles; Decreased libido.

Now, I can honestly say that in the past 5 years my partner has experienced all of the above except for the darkening for the skin. And in fact, I left one out. At the end of the list of symptoms of adult growth hormone deficiency cited by the Human Growth Foundation is this one: Feelings of hopelessness. When I read that I thought to myself: “Surely it would be a miracle if you experienced all the other symptoms and didn’t have feelings of hopelessness.”

I know my partner has feelings of hopelessness, even though she is an amazingly strong person. She is taking supplements to cope with the 3 deficiencies she suffers (thyroid pills, cortisol pills, and daily growth hormone injections). Although the side effects of these can be very unpleasant, and it’s very tricky to get the mix right, she is making enough progress to fend off the worst of the depression (she is also taking pills for that of course).

All of which could have been prevented! Let me repeat: It was all preventable. A simple and relatively affordable genetic test is conclusive for hereditary hemochromatosis. Monitoring iron levels in the blood can indicate when phlebotomy is required. Unfortunately, due to a bizarre set of circumstances the iron tests that are vital in dealing with hemochromatosis are not routinely performed in America and, iron-ically, phlebotomies for hemochromatosis are a lot harder to get than you might think.

Would you believe that blood iron saturation tests were the subject of massive fraud cases settled in 1996, causing the tests to be dropped from “standard” panels. That single twist of fate kissed goodbye one of the best screening tools for hemochromatosis in the very same year that doctors discovered most hemochromatosis was genetic. Which was also the year that many clinics started to refuse blood donations from people who had lived in Europe (due to mad cow disease).

Guess who had lived in Europe? My partner and I. Guess who were big blood donors until 1996? My partner and I. And 1996 is when her health started to decline. Very slowly at first, but then accelerated by menopause (monthly blood loss due to periods tends to fend off the effects of hemochromatosis in women so they are often diagnosed later than men, but with more damage done).

And guess why many U.S. clinics won’t take hemochromatosis blood? Because they have no code for it in the system. (That’s what I heard and I’d love to be proven wrong, but it took our local health system four months to give my wife her first phlebotomy after her hemochromatosis was confirmed).

So there you have it, more than you ever wanted to know about hemochromatosis, from how you spell it to what it may do to you if not properly diagnosed and treated.

Of course, I should remind you I AM NOT A DOCTOR, so please seek medical opinion on this stuff if you suspect it is present in your life or that of your loved ones. But DO NOT ASSUME that your doctor, however kind and/or dedicated he or she may be, knows as much about hemochromatosis as you do, now that you have read this.

Saturday, January 03, 2009

Started New Hemochromatosis Blog

Hi everyone.

I have decided to build a much better blog on Wordpress.
Videos and great information to help you live a better life.

Please check it out here

Don't be shy, make a post.
Let other hh sufferers know what's up with you.


Tuesday, May 20, 2008

Finally Somebody Has Answers


Sure hope you are doing okay with your Hemochromatosis. [HH]
I got my phlebotomy this morning. It went well.

While I was there I asked a couple nurses what they knew about HH.
Thier answers were both the same...hardly nothing.

Well I just learned a ton of stuff from a great book I read.
I now have so many questions to ask my doctor. I will try and get her to get her own copy of the book. Maybe I should print it out and just give her a copy. At least then she will have a much better understanding of the disease. Sometimes I think she is trying to kill me. But I'm pretty sure she is just ignorant when it comes to HH.

Anyhoo...I was lucky enough for the author to sell me resell rights to the book. So now you have a chance to learn more about HH than
anyone else in the whole world could teach you.

Ironic Health is a book authored by Dr Chris Whittington regarding her experiences studing hemochromatosis cases with Professor Lawrie Powell, probably the foremost authority on Hereditary Hemochromatosis in the world. It was he who convinced the world that Hereditary Hemochromatosis was a genetic disease in 1989 and provided the impetus for the work that was to lead to the cloning of the HFE gene in 1996.

Let a Doctor explain this misunderstood Genetic Disease.

Besides being the HH Bible, it is also a very interesting read.
I will also give you some bonus articles that are packed with technical stuff that you may be interested in.

Dr. Chris Whittington is a recognized authority on hemochromatosis and has practiced medicine in Australia, New Zealand and Canada and has lived in Canada since 1985.

She Currently practices in Abbotsford, British Columbia.
is a Clinical Associate Professor of Family Practice at the University of British Columbia.

is a Past President of the British Columbia College of Family Physicians.

has published and presented a number of papers on hemochromatosis
is currently engaged in ongoing research into hereditary hemochromatosis.

Dr Whittington's mother has hemochromatosis so she has a personal interest in seeing that patients are helped.

What Dr Whittington's Peers have Said:

"Chris Whittington's comprehensive review of hemochromatosis in the real world - Ironic Health - is a 'must read' for both patients and their doctors. Make it a point to read this one from cover to cover".

This really is the best stuff I've read on HH.

I really, really, hope that you will go here:

Ironic Health

and buy this absolutely awesome book.

If you don't think this book delivers, just let me know...
I will refund every cent. And you can keep the book.

So I hope you will do yourself a giant favor and pickup a copy.
Delivered over the internet so you can be reading it in about 30 seconds.


W. Pat Peters

Keep on keepin on.

Friday, April 04, 2008

Cirrhosis of the liver

If you’re fortunate enough to get treated for hemochromatosis before it damages your organs, then you can prevent the serious complications we’ve talked about. If you already have some of these conditions, treatment may slow the progression of these health concerns. In some cases, you may even find some of these conditions may be improved.

If you already have cirrhosis of the liver, your physician may – in addition to treating your iron overload – monitor you for cancer of the liver through an abdominal ultrasound as well as an alpha-fetoprotein blood test every six months.

Some individuals find, though, that they must endure literally years of this procedure before enough iron has been removed from their system. According to Raymond J. Bergeron and his colleagues at the University of Florida treatments as they exist now, remove only tiny amounts of iron from the most sensitive organs, like the heart.

In response to this problem according to the American Chemical Society, they report the synthesis and the early testing on laboratory animals of what could be a new generation of iron-chelating drugs. These compounds may be able to remove excess iron from the body in a more efficient manner than is currently done. These compounds work by targeting specific, iron-sensitive organs, especially the liver, the heart and the pancreas. The research is still in its infancy but may prove to help many who now undergo prolonged treatment.


Saturday, January 19, 2008

We Got More Hemochromatosis Videos

Check em out HERE

If clicking on HERE isn't working for you, just copy and paste this:

into your browser.