New to Hemachromatosis

Hello, my Ferritin was at 1215, I had know damage done to my liver, my joints hurt so bad I couldn't hold anything in my hands and my knees felt like they couldn't hold me up, that's how I was diagnosed, I have double C282Y, when I got to 400 all my pain went away now I'm almost to maintenance and am feeling good, how ever everyone is different, there are a lot of groups on Facebook for Hemochromatosis please join, they are very active and you will learn a lot, I even joined the ones in Canada, UK everywhere there is millions of us

I am glad you mentioned your Viking heritage because the Celtic Curse is a misnomer.  The only true Celts were those that fought their way down from the north to settle in France.  Then there are the Iberians who migrated to Ireland, etc.  The French too have a prevalence of 1 in 200 like the rest of us, but it has now been changed to 1 in 250 given all the other nationalities (whose heritage do not get GH) that have moved to France.  It will be very interesting to find out what peoples actually started all this - it would go back many thousands of years.

I have been treated for homozygous C282Y for 20 years now.  My husband is homozygous H63D, and our son is compound.  This was after a tortuous 9 years of severe symptoms undiagnosed until my hips broke up.

I suggest you ask for Vitamin B12 injections to help you while you are having frequent venesections.  It is something I wish I had known all that time.  Also get your Vit D checked as the symptoms of a deficiency there also seem to be GH symptoms.  If low, go for a practitioner's brand of Vit D3 forte drops.  These actually work.

I too kept having all the fatigue and body pain despite the fact I had been de-ironed.  After reading a lot of research and speaking, in particular, to Prof Pierre Brissot, of Rennes, France, it seems that my long term high TS% was the culprit.  Drs don't generally see high TS% as important.  It is because they do not read the research about it.

I have continued to have venesections even though my ferritin is in early 20s, and finally my TS% sometimes get into normal range.  The TS% is the last to lower, but 20 years is unusual.  However, it seems to be going down now, and I must say, I am finally starting to feel better.  I still have short days though and my body does not want to function after 7.30pm.

I am being treated by a haematologist who is also an oncologist and I have my venesections in the oncology day unit amongst those who are having chemo, and other horrible treatments.  My husband got Hodgkins Lymphoma and had to have chemo, and radium therapy, so I am grateful my venesections are not chemo.

BTW, GH is not that rare.  It is the commonest genetically caused metabolic disorder.  Homozygous C282Y occurs 1 in 200 and homozygous is 1 in 80, while heterozygous is 1 in 7.  There is a lot of research on it - just stick to the real medical research and not blogs.  It is best to educate ourselves so that we know we are being treated correctly.  We will get to know more about it than drs do.

You will find that your ferritin will go up and down - don't despair.  Also if you even have a simple cold, the infection/inflammation will send it up high but will reduce naturally once the infection is over.

And also, there are no medical specialists in GH.  You are lucky to be in the hands of a haematologist in the oncology area.  However, they are experts in reading your blood levels pretty much only.  So you need a good doctor to treat any problems arising from it, and the treatment is the same whether you have GH or not.  Just keep having those venesections.

Good luck with it.

 

I was also 47 years old when diagnosed with a ferritin level of 1887. After 16 weekly phlebotomies my ferritin level was down to 50. I started to feel much better after that.

It’s the same in the UKi have to sit in a room with others that are receiving chemo but they put us rusty people behind a curtain but after it’s depressing 

Started mine at 1200 but restricting diet helped initial boost lost 200 but it still gonna be weekly for a year and lifetime maintenance 

I get days of brain fog and tiredness and some like today where I’m bursting with energy 

It’s a strange Celtic curse but that’s where we are at 

Good health to you stay focussed it gets better 

Thanks everyone for your replies! It's certainly good to know I'm not alone in this. 

Since "iron overload" is so common in Northern Europe, are there hemochromatosis clinics there? I'm curious, where are you all located?

I'm switching clinics because I found one that will at least put me behind a curtain during phlebotomy. I feel so strange walking into a cancer clinic and sitting in the waiting room with cancer patients. 

Has anyone here ever gotten their Ferritin down to 50 (or whatever the normal number is)? Or, will we always be above that normal range, even with the phlebotomy?

I accidentally learned about this after an annual physical. For some reason, my doctor thankfully decided to check my iron level this year. I don't think it's ever been checked, so I don't know how long it's been high. I do know that I have almost always been tired, with a some peaks of energy here and there. Mostly, I find myself fighting through the lethargy and fog to get my work done.