Anyone got haemochromotosis?

[O2Trees]

Hi all, a new diagnosis, as if there wasn't already enough to deal with.

Because I have secondary polycethemia like others here (too much haemoglobin, a quite usual compensation for low oxygen), my GP sent me for a test to rule out haemochromotosis, an inherited iron overload condition. To rule it out, note, but blow me, the test came back positive with both my parents having the genetic mutations which is required to cause the condition. How random is that? Seriously!

Put simply (by the consultant) it's like most people have a switch in their body which tells it to stop absorbing iron when it's absorbed enough, whereas the bodies of those with the condition just keep on accumulating more and more. It gets stored in your organs and causes damage - liver, heart (causing arrhythmias), joints (bad pain) and pancreas (no idea!).

So the treatment is phlebotomy - venesection where they bleed you to bring down your iron levels to within the normal range. If untreated it can cause cirrhosis of the liver even if you don't drink, and I haven't drunk much for years. Supplementing with Vitamin C, iron (obvs), and alcohol all enhance iron absorption and so are verboten. Green tea, coffee, dairy products and other stuff which you need to research since they don't tell you, act as iron absorption inhibitors. So diet changes are needed.

I have my first venesection next week, then a further one two weeks later. Not sure how much they take. (Anyone remember Tony Hancock? "A pint? That's a whole armful.") Thanks to my smart GP sending me for tests, it may have been caught before much, or even any, tissue damage has occurred. I thought my ferritin levels (that's what stores iron in the body) were ok though, but apparently they are very high. If anyone has any useful information or experience of this, please do let me know as Im a haemochromotosis virgin and in slight shock as I only found out today.

Bring on the leeches

Hope everyone's having a good evening, or good as possible

[sassy59]

Goodness me O2, what a shock for you and I’m truly hoping it’s been caught in good time. Well done to your GP.

I hope everything goes well for you next week and a few weeks later. Thinking of you as always and wishing you well. Xxxx 😘

[O2Trees in reply to sassy59]

Morning Sassy - yes, brilliant GP. Thanks for your good wishes

[hypercat54]

Sorry to hear this O2. As if you haven't got enough on your plate without having to deal with a new problem. I have never heard of it so can't offer any advice but I do hope its been found very early and has a minimal effect on you. Take care. xx

[O2Trees in reply to hypercat54]

Thanks Bev. They find this later in women as menstruation keeps the iron down. Bit of a weird thing to get my head round. x

[Katinka46]

As soon as I started reading your post I thought of blood letting, Tony Hancock and leeches. I think I can feel a cartoon coming on...

Watch this space...

K x

[O2Trees in reply to Katinka46]

Haha Kate - a cartoon, brilliant. My friends have all been laughing about leeches.

[breatheeasy1]

Oh O2, you poor thing, but at least as you say they caught it before any organ damage. Blood letting sounds positively medieval, but I trust they've ways of making you comfortable during the procedure. I've no advice I'm afraid, but will gladly rehome any spare iron you want to give away!😂 Lots of luck for you xx

[O2Trees in reply to breatheeasy1]

Im sure there's a sculpture to be made with the iron, BE1. All a bit weird but as long as I get my tea and biscuit like you do with blood donating I'll be ok.

[breatheeasy1 in reply to O2Trees]

Ah yes, tea and biscuits makes everything better 😊 xx

[2greys]

Hi Jean, yes I remember Tony Hancock, I have a recording collection of Hancock's H,H,Half Hour So now you get to be vampire fodder.

Sept '16:

blogs.ifas.ufl.edu/news/201...

May '17

eurekalert.org/pub_releases...

[O2Trees in reply to 2greys]

Will check your links after breakfast 2G, thanks for them. Although Im a bit shocked, having a h-h-Hancock laugh helps, and there's a part of me that can't quite take it seriously

[joyce74]

Hope they can make a difference now they know what it is. Must have been a shock. Hope you soon start to feel the benefit.

[O2Trees in reply to joyce74]

Tbh Joyce, I don't really know how it's affected me. Other than sometimes very hot, red cheeks for several days with seemingly no reason - very uncomfortable. But now Ive found that this is a symptom of iron overload. Thanks for your reply.

[Ergendl]

All the best for your new treatment. Do avoid cooking in unenamelled cast iron pots too.

[O2Trees in reply to Ergendl]

Yes, good advice since people with anaemia are advised to cook in them. I have a lovely cast iron frying pan I'll have to junk now

[Ergendl in reply to O2Trees]

How heartbreaking! I have one too, and it's a real treasure.

[O2Trees in reply to Ergendl]

This was just from Ikea, no sentimental value but it was a good pan. My daughter will take it so still in the family!

[Ergendl in reply to O2Trees]

I inherited mine from my mum. It weighs a ton.

[Hidden]

Really sorry to hear about that diagnosis 02trees as you had not enough to deal with because you are such an inspiration to many of us on here with your positive attitude and supportive replies,definitely inspires me on my low days..even inspirational people can have lows keep looking after yourself because we so blessed to have you on this forum.Regards Ger

[O2Trees in reply to Hidden]

Oh dear, where did my reply to you go Ger67? What a lovely reply! We all support each other don't we? So lucky to have this forum. You take care

[Shirleyj]

I am having visions of big fat leeches sucking your blood!!

Hope you start to feel better soon x x🍀🌸🌼🌷

[O2Trees in reply to Shirleyj]

Haha, thank you kindly, my dear!! - the leeches bit I meant. And thanks for feel better wishes.

[skischool]

haemochromotosis? i was going to google it but it was to long to cut and paste.trust you to have something exotic and equally unpronounceable Jean but like all things in life you take things in your stride and seem to do all the right things in terms of research and obtaining the correct treatment,hopefully this can be nipped in the bud or in your case squeezed from the vein without future damage and you will soldier on in your own impressive fashion..............love and best wishes Ski's and Scruffs. xx

[O2Trees in reply to skischool]

Dear Ski's - you always say the nicest things. It is unpronounceable isn't it? I always feel I have to apologise for it. Hope you and feline are doing ok. x

[frose]

Right, it's about time you stopped hogging all the diseases! Seriously, I'm sorry to hear you've now more to contend with. I wouldn't joke about leeches, I know hospitals .use maggots as treatment so I don't see why you wouldn't be leeched! Sending iron sapping hugs to you xxx

[O2Trees in reply to frose]

I feel embarrassed telling my supportive friends I have yet another thing Frose. Love those iron sapping hugs, many thanks xxx

[Mollie01]

Hi 02Trees

Haemochromatosis is in my family. I'm a carrier but my grandmother had it and lived till 99 although that was the only problem she had. Like you said she her blood taken monthly to start and then when she needed it. She always looked really healthy as though she had been out in the garden. Wishing you well. Mollie xxx

[O2Trees in reply to Mollie01]

Wonderful to hear from you Mollie - I thought that amongst our thousands of BLF members someone would know about it. Carriers are when just one parent has the gene, is that right? I think the red cheeks give a healthy look and Ive read that your skin can go bronze-orange. The problem comes when people aren't diagnosed early enough to avoid organ damage, so your grandmother must have been lucky, and had some good genes too. Seems Ive been lucky too. Thanks so much for being in touch, take care, xx

[Mollie01 in reply to O2Trees]

Hi although I'm a carrier i can't get it. My father was a carrier but his brothers and a couple of cousins have it. And being farmers they all have that sunkissed look as they like to call it - no fake tan needed. After my grandmother was diagnosed at 82 we were all advised to go for genetic testing. And that's when we found it in the younger generation. They are all monitored routinely with no problems. Enjoy the sun kissed look!! Mollie xx

[patmc1]

Hi, I don't have the condition but my best friend has it.

It began when she read an article and realized that some of the info(family history of early heart and liver problems and especially for her case early menopause) seemed quite familiar (pun intended). She talked to her primary doc who laughed at her for two years "you women read something and immediately think you suffer from it just like first year med students" Finally he relented and she was tested (including at that time a liver biopsy)----and not only did she have the condition but her doc had his mom tested and yep---she had it also.

Strangely the genetic testing at that time (through the Mayo Clinic) came up with only one of the "bad" genes--but two years ago her 23 and Me showed both genes. I guess that shows the advances in genetic testing.

For the most part she has to watch her diet (not a lot of red meat ---she misses liver and onion dinners), get her iron levels checked by a hematologist, and when they are too high(he wants her below 50) she has a phlebotomy . This was a financial problem when her phlebotomy wasn't covered by insurance and blood donation centers weren't taking blood from hemochromatosis donors. However , that changed a few years ago and they now accept blood on special appointments. So that doesn't waste blood nor money!

Whenever she blames Celts and Vikings for her "condition" I offer to trade my one bad alpha1defiency allele for her two "bad" ones. (we smoked the same time and same basic amount thank goodness her lungs are fine). Oh and scientists are toying with the idea that the hemochromatosis gene mutation conferred some kind of health benefit similar to sickle cell anemia.

There is a hemochromatosis group on HealthUnlocked.

Good luck it's never fun to have anything wrong but this seems to be very manageable as long as it's discovered early.

[O2Trees in reply to patmc1]

Helpful tip about the HU group - just went on to take a look and there are people there with ferritin levels of 10,000 which apparently indicates organ damage. Since mine are just below 300 it's clear that mine's been caught early. I understand they will do the phlebotomy until my levels are around 50, which allows a build-up without anything serious happening. Seems it's a nasty thing if it goes on without being discovered and otherwise manageable. But there's not enough awareness about it. Im feeling lucky!!

[O2Trees]

Many thanks patmc1 - this sounds reassuring. It seems to be a very 'caucasion' condition from what I've read. Good your friend can donate her blood. Don't think mine would be much use as it's full of meds, but then we don't have your health payment issues over here. Irritating how patronising doctors can be. Thanks for being in touch with your encouraging message

[peege]

Now that's just greedy J !

Sorry to hear this, but very glad indeed that they've found it early. Don't count on a nice cuppa afterwards though, last time I gave blood in Ealing there was no cuppa 😭 I was so looking forward to it too. They said they don't give hot drinks anymore as they dilate the blood vessels. A lousy cup of squash and a rich tea. Good luck hon. XXX

[O2Trees in reply to peege]

I hate rich tea bickies. A decent chocolate digestive should be the least you should get Good to hear from you P and thanks for reply xxx

[Offcut]

My son has had quite a few venesections as he had AML and they said due to the quantity of blood infusions plus doner he has become haemochromotosis. The only issues he has is the time he has to have off work to have it done but he has been fine otherwise. I hope all goes well for you.

[O2Trees in reply to Offcut]

Many thanks Offcut and hope your son goes on ok

[Offcut in reply to O2Trees]

Thanks he still has a lot of follow ups etc but 2 years remission so far s looking good

[O2Trees in reply to Offcut]

Really glad to hear that

[Izb1]

So sorry to hear you have this complaint O2trees, I have never heard of this before but great that your ferritin levels are so low, hopefully this will bode well for you. Good luck. Irene x

[O2Trees in reply to Izb1]

Well Ive learnt a lot of reassuring stuff today Irene. Levels are high but easily manageable, unlike the stratospheric tens of thousands. So I am lucky Thanks for your reply.

[tamariki]

I was diagnosed with it 40 years ago. I told me brother about it, and when he asked his GP, in Leeds about the disease, the GP in Leeds said don't worry about it. He is now 76 and I am 80, and neither of us have taken medication for it nor had blood \drained from us.

[O2Trees in reply to tamariki]

Interesting tamariki. It seems to go different ways for different folk, like most conditions. You can have the inherited genes but not have elevated iron I believe. Im beginning to think my levels may have gone up due to having been very ill with double pneumonia as inflammation can increase levels. But they aren't up like some of the people on the Haemochromatosis forum here so Im not too bothered. Glad you and your brother have been ok.

[Rosepetal60 in reply to O2Trees]

Hello 02Trees, I had a private blood test for mainly thyroid testing plus a few others, one of them happened to be Ferritin. My ferritin level showed up in Red on the report as 667. ( all others except 1 other in black ink) I didnt take much notice at first but noted the comments made on the report and the advice from a couple of people on the thyroid forum was to see my GP soon. Did this and was sent for blood tests, and chest X-ray . Bloods for liver function etc all fine but chest X-ray shows infection so in my case it could be the inflammation and infection that has sent the ferritin levels up high. When, ( nearly put If) I get rid of this chest infection, I will think about having another blood test to check the ferritin level again or if I feel well enough I could donate some blood. But will check with GP first. Interesting topic.

[O2Trees in reply to Rosepetal60]

Yes, definitely see your GP. I think my levels may also have gone up due to inflammation (pneumonia) and Ive had one venesection now, another next week. Such an easy treatment to prevent what can be a devastating condition. But if caught in time, no problem at all it seems to me. Maybe it would be a good idea to have the haemochromatosis test Rosepetal, nothing to be lost by having it and lots to gain if it's positive

[Rosepetal60 in reply to O2Trees]

I agree about having the Haemochromatosis test, but it feel it will be pricey & unlikely I'll be offered it. Only time will tell.. I have a friend who has a relative with it who gave blood, I gather a fair amount over a short period and is fine now.. Although at the time, it was thought he would have to donate regularly .

[Jfb1]

Do you have Irish ancestry? Haemochromatosis is known as the ‘Irish Disease’. Many people in Ireland carry the genetic defect and the incidence of haemochromatosis in the population of Ireland is very high.

[O2Trees in reply to Jfb1]

Wow, thanks for this Jfb1 - I had no idea. Yes my mother was from Antrim. I assume the North is as much implicated since I imagine these genetic mutation would be no respecter of borders. I'll look into this further, thanks so much.

[Jfb1 in reply to O2Trees]

Hi. You could have a look at the website for the Irish Haemichromatosis Association. They’re very clued up about it as obviously it’s so much more prevalent on the island of Ireland. My family and many of my friends come from Ireland and I’ve come across this disease on a number of occasions. Good luck and stay well.