Living with Genetic Haemochromatosis

28/02/2021

Interesting email on the Iron Disorders website yesterday, asking about treatments for swollen legs, ankles and feet.
I explained that taking 2 Ibuprofen each end of the day certainly helps me both in terms of minimising actual swelling and in terms of pain relief. If I miss them for a day I sure can tell the difference.

28/02/2021

Alls well here in the UK with Covid new case and death rates continuing to drop day by day.
The vaccination program is going very well, and importantly is now having clearly identifiable results in successfully surpressing the spread of the virus, as well as giving direct protection.

17/02/2021

Both I and my wife have now had our first Covid vaccination, and now have increasing protection day by day. We are all hoping the lockdown can be eased a little soon, but caution needs to be the keyword.
Here in the UK the vaccine rollout is going incredibly well so we must not risk all that brings by relaxing too soon too quickly.

19/12/2020

December 2020 - In a world dominated by Covid 19 we approach Christmas in the UK with the virus spreading again rapidly. Increased restrictions are being imposed even over Christmas itself, and way into 2021. The availability of more vaccines is surely the light at the end of this very dark tunnel. Let us all hope so - Happy Christmas and a much better 2021 to all - including all those with HH wherever you may be.

17/05/2020

For those seeking inspiration for HH friendly menu options, there is a load of suggestions and ideas, and recipes galore at http://livingwithhemochromatosis.blog/ Recipes created, tried, tested and shown as fit for purpose,

Also details of some real Iron Killer ingredients that can bring Rib Eye Steak back on the menu! Even Roast Lamb and Roast Rib of Beef now feature amongst our Sunday roasts.

In November 2009, aged 73, I was diagnosed with Hereditary Hemochromatosis (HH), with a Ferratin Level of 6,356 ng/mL. I had no idea what that meant, but when they told me I would have to stop eating any red meat, drinking fresh orange juice or alcohol, and must stop smoking, they had my complete at...

17/05/2020

How's everyone doing as we start to come out of lockdown?

Those of us in the older age bracket, or with underlying health conditions, will have to be very careful as we really should still be self-isolating. That can become more difficult as others are able to relax the rules a little.

In reality, we should be waiting until a vaccine becomes available - fortunately it seems great strides are being made in that endevour.

We will all have to make difficult decisions - ones that could far too easily lead to loss of life. And for the young ones, please remember, you could inadvertantly carry the disease to your Mum or Dad, or Grandma or Grandad.

So I guess the simple question is - is life worth another 6 months of self-isolation?

Why 6 months you might ask? My thinking is that in 6 months time we MIGHT have a vaccine, but if not then during that period of time with the R rate below one, the number of infectious bodies out there will have reduced dramatically, thereby reducing the chances of infection with it.

If we do not consider that to be a viable option, then at least we should maintain social distancing, wear a face mask and avoid physical contact, and wash hands after ANY social contact outside the house.

Remember the clear evidence that outdoors the risk of infection is dramatically reduced, in fact with social distancing to almost zero. So avoiding social contact indoors would seem to be a sensible compromise as compared to continued self-isolation.

29/04/2020

We are managing to maintain our varied and HH friendly diet, whilst also both the wife and I losing over 28lbs in weight (both needed it!). It has been amazingly easy to combine HH friendly with slimming.
Some of the new recipes I have created can be found at livingwithhemochromatosis.blog which also tells of my journey since being diagnosed with HH.
We only ever eat home cooked food, so self-isolating has not had any negative effects on that.
It seems from various reports that the whole population is re-discovering the delights of home cooking - particularly those with children using cooking as a great "family" activity - witness national shortage of flour.
Will be really interesting to see if that trend continues after lockdown - suspect it won't as eventually children go back to school and parents back to work!

29/04/2020

How is everyone getting on with Covid lockdown?
Here in the UK, I and my wife have been self-isolating for 5 weeks now. Managed to book weekly delivery of groceries from Asda which has worked well, with only a few items missing as out of stock.
I was due for a blood test last week (followed by venesection if necessary) but feeling great right now so postponed that for 2 months and new appointment confirmed by hospital. Also just received appointment details for next 6 monthly general checkup for 3rd June so good news - hospital is getting back to normal pre-covid activities.

27/03/2020

There must be hundreds of people doing much the same thing though, and social media makes it so much easier to be creative.
Today saw that the people of Ilfracombe have formed an FB Group for each Street in the Town, with a volunteer for each Street running the FB Group for that Street.
Thats really using FB to maintain local contact.

27/03/2020

This virus is really making us all stay at home - or should be anyway. What to do to keep busy is becoming an issue for many - and for everyone maintaining contact with the outside world is a must.
Those of us who have access to the internet are one step up as it is a far more important means of contact right now than it has ever been, or even imagined to be really.
I am amongst the even more fortunate in that the internet also provides me a means of being creative and building something.
In my case a Blog for those with Hemachromatosis, which will be online in a couple of days.

19/03/2020

This virus is getting pretty serious, whereever one lives.
Here in the UK those over 70 are being advised to self-isolate, and it appears those of us with Hemochromatosis have compromised immune systems so we need to be particularly vigilant.
And that is quite apart from issues related to any underlying conditions caused by the HH prior to de-ironing - issues with the heart, liver, kidneys or hypoxia (lack of oxygen in the blood), all add to the level of risk.
So stay safe all HH'rs - its just another hurdle to cross!

10/03/2020

Started creating a new blog yesterday covering my journey from being diagnosed with HH in 2009 and how I have learnt to live with HH and cast off the Iron Shackles on the way.

I love eating and cooking good food. Over the last 11 years I have honed my cooking skills to encompass the special requirements of a HH friendly diet, whilst losing none of the joys of eating a huge variety of great foods.

The blog will cover my progress step by step, the highs and the lows, the do's and the dont's I have learnt, and dozens of my HH friendly recipes.

More of that later.

09/03/2020

A real source of information and understanding for those with HH. Just how it occurs and what it means - in plain English!

Hereditary hemochromatosis is a disorder that causes the body to absorb too much iron from the diet. The excess iron is stored in the body's tissues and organs, particularly the skin, heart, liver, pancreas, and joints. Because humans cannot increase the excretion of iron, excess iron can overload a...

03/02/2020

Into 2020 and for me the year brings with it continued good results regarding iron levels. I only needed two venesections in 2019 to keep within range, so all good there.

Also took a fairly big step in July by starting to take CBD daily. Two huge benefits. It is controlling the arthritis in my hands and knees and as a result I have been able to stop taking dyclofenic to control that - which I had been taking for over 30 years.

As a result, not only do I have NO arthritic pain in my knees, and only a little in my hands, but it also appears to have halted the advance of cirrhosis of my liver, in fact my liver seems to be repairing the damage done previously.

The CBD I take is extracted from h**p grown organically in Colorado US, which I buy directly from the processors. I have no side effects from taking the CBD whatsoever.

So I enter the new decade at the age of 83 in as good health as I have enjoyed for years, and enjoying a normal varied diet, all home cooked from fresh ingredients.

22/08/2019

Just passed the 2 stone (28lbs) weight loss milestone.

Feel SO much better for it. At 175lbs, which has always been the best weight for me, I just need to hold that weight now.

It took 16 weeks to lose that weight, following the Slimming World guidance. Found it quite easy, just cut out all bread and cereals, cheese, butter, milk and sugar.

Started taking CBD 2 months ago, a brand from Colorado USA made from Organic H**p.

First off, have been able to stop taking Dyclofenic (an NSAID) which I have taken for over 30 years to control Pseudo Gout in my knees, and Osteo-arthritis in fingers and thumbs. That was a vital step as the Dyclofenic was causing Cirrhosis of my liver.

The CBD has prevented pain and swelling of my fingers and thumbs, pain in my hips (both replaced), and virtually eliminated swollen ankles. Also appears to have eliminated various other little niggles and pains.

Ferretin levels have remained low, only needed one venesection (phlebotomy) in the last 22 months (7 months ago), and is currently at just 67.

So currently eating red meat again, at least twice a week, and lots of fruit and vegetables, and no alcohol at all.

So all seems really good right now and the CBD is certainly a huge contribution to my general wellbeing.

07/11/2018

Yup - another couple of months with no increase in Ferratin levels and everything else Ok too, so no venesections for over a year now.

However, I am putting weight on, and as usual that means too much around the waist for my liking!

So its time to lose some of that!

24/09/2018

Another month with Ferratin levels within required limits (below 100 ng/mL) so looks as though careful control of diet is now having a major impact on maintaining the current stability.

Am now building a website to make the details of my diet, including the recipes developed over the last 12 years, available to others.