I was only interested in the Haemochromatosis

[LaceyLady]

I’m only interest in the ‘research’ sadly too late and there is a great need here to communicate with the :

haemochromatosis.org.uk

I’m Compound variant

[RugbyMama]

What do you need to know?

There is an excellent haemochromotosis society Facebook page and the BLT helpline can advise on the impact of Haemochromotosis on your liver.

My DH is recently (within last 12 months) diagnosed, homozygous type - Irish mother, Scottish father we are based down in the south west but have a celtic sounding surname which is why doctor suspected.

Weekly treatment has taken his ferritin from 1500+ to 171 in 6 months.

[LaceyLady in reply to RugbyMama]

Well, I’m surprised at the research saying women aren’t affected 🤯 I belong to the Haemochromatosis UK. There is a great need for more research, because I’m Compound variant I am dismissed as having no problems however, I have Peripheral Atrial Fibrillation, T2 diabetes which can be symptoms but told in my case not, BUT not why I have these, plus paternal strokes. My ferritin etc has and is over 150, does increase but no one is worried as it’s not in the 1000’s!!

I recently tried to find out if bleeding disorders are linked but sadly I think my question was misunderstood. The facebook help page for some reason I had been removed 🤷🏼‍♀️ No warning, I did challenge some of the thoughts and information occasionally, I am a qualified Health therapist of 25yrs, so like to learn. There is a real need for a help group/area that answers and discusses issues etc as the only way is to email the Association, I think an area where those who have it and have experience could be helpful.

[BritishLiverTrust11 Moderator in reply to LaceyLady]

Hello

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[RugbyMama]

I'm not sure where you read that women are not affected. The genes involved are not gender-specific. However there is some research that suggests men display symptoms earlier than women and it is thought that this may be due to blood lost during a period. So women can be less effected than men but there is no research to suggest they have no symptoms at all. Your ferritin being at 150 is at the top end of normal range but should not be causing you significant symptoms. You should also be able to maintain or reduce this through diet - avoiding red meat, vitamin supplements that include iron or high levels of vitamin c, cereals fortified with iron, reducing intake of green leafy vegetables (or drinking tea with meals including these things, the tannins prevent the body absorbing iron). With the compound variant the symptoms are also different. You can load iron and may get similar symptoms to those that are homozygous but not always. The symptoms you mention (particularly the AF) can be caused by haemochromotosis but usually expected at far higher iron levels. Diabetes can be caused by any number of things and in GH patients tend to be complex- my husband effectively has type 3c diabetes which is insulin-depedeng type 2 but with a degree of insulin resistance and pancreatitis. When my husband was diagnosed, I researched and researched and in doing so found really helpful sources of information and some wildly inaccurate to the point of dangerous information, the internet is not always your friend!

I appreciate that you work in health and like to challenge thinking and that's no bad thing. But if you are losing sources of help and support because of the challenges you raise, then maybe it's better to say nothing? What's the phrase - don't argue with an idiot they'll drag you down to their level?

This is a fantastic group of supportive people for those experiencing liver issues with knowledge and expertise that I have been truly grateful for in the past 12 months. I hope you find the knowledge, support and information you are looking for.

[LaceyLady in reply to RugbyMama]

It was an old post requesting participation in a survey. I’m a low carb T2 diabetic, so eat meat, diet is restricted. I believe that avoiding iron in the diet is not thought to make a great deal of difference and if you do, you’d need to supplement with Vitamin B12.

Ah yes, I have heard that quote. Do you have a link to the fb group, it may be a different group. As said I’m a member of the haemochromatosis association and can ask questions but there nothing like personal experience.

Being ‘top end’ on results I know, getting tests is another thing, BUT also I have PAF, T2D so you know, how does GH interact with these conditions and I have a bleeding issue not diagnosed, had NAFLD??