Hemochromatosis

Allergies, blood and immune system
1

Hi

Just being diagnosed with hemochromatosis, 1 level 1130 the other 80

I had my first phlebotomy today followed by 1per week for 6 weeks before I return to see the hemotologist,going on your experiences, how many phlebotomies do you think I will need???.the specialist wasn't interested in my diet I don't eat red

meats,or seafoods, I exercise regularly, I am not over weight, non smoker, at the moment ci have no organ damage, I am a 66 year old male, both my parents were Irish,they are doing tests for genetic hemochromatosis, in your experiences what alcohol is a safe level, I don't drink heavy,but on holiday I tend to have around 4 pints a night,but once I return to England it's more like 4 pints a week.

It's a bit daunting only just being diagnosed, socany help greatly received

Thank you

Philx

2

Hello.  I started with a very similar ferritin level to you (1125) but I'm sure everyone on this forum will remind you that everyone is different in how their body has been affected by haemochromatosis and also everyone is different in how their ferritin is affected by phlebotomies/venesections.  However, as an example I had 27 venesections and it took 1 year.  I started with weekly, then swiftly was changed to fornightly for the majority of the venesections and the last 4 venesections were with intervals of a month.  I think my hospital take a very cautious approach.

​I also drink similar levels of alcohol to you but while I was waiting to have a fibroscan to check the condition of my liver I hardly had any alcohol.  When I was told my liver was in a better than average condition for the UK population I then celebrated with a drink (!) and went back to my normal drinking pattern.  In advance of my fibroscan the heptologist said if it was fine then I could be very relaxed about my alcohol intake.

​I get the impression that if you genuinely have no liver damage and then get your iron lowered and then managed within the normal range then you can drink to sensible levels.  I think there is a lot of misinformation out their claiming that alcohol increases your iron levels.  In fact tannin in red wine reduces absorbtion. 

My opinion is I think the advice to really reduce or cut out alcohol is really meant for those who have had some liver damage.

 

3

Hi Phil..Mike here. Welcome to the group. My level was 2000 last year! Two weeks ago it was 38! I finally got there...a year or weekly phlebs. It might take you six months...maybe more...it's different for every individual.

I eat much less meat these days. Drink milk and tea with every meal...helps stop iron absorption. Calcium and tannins in tea stop you absorbing as much iron.

I don't drink in the week at all. Have a few at the weekend. Alcohol makes the body absorb loads more iron and is more stress on the liver, and has a bad effect on iron in the body. I would say really limit your drinking while you're still in treatment phase....then once levels are low and liver is fine, then keep it at moderate levels. As far as going away and drinking 4 pints a night...again, if you're still in treatment phase then the advice is always the same...you gotta really be aware of not putting your liver under any more stress. Then of course, we still gotta be able to enjoy life. I'm off to a beer festival soon...and as a one off I know I will be drinking well above any recommended limit....but, iron levels are good...it's a one off...so what the hell! I say have a few beers, but maybe not 4 EVERY night. The other think with alcohol if you are going to drink...avoid drinking when eating...as I say, alcohol makes you absorb loads more iron...and we don't want that. Good luck with the treatment.....keep in touch. Mike.

4

Hi mike

Thank you for your response, this is reassuring to know what other

People's levels are,until I was diagnosed with hemochromatosis I

Had never heard of it before ,and family and friends had not either

I have advised all my family to be tested asap,and I will make it my mission

To inform as many people as possible about this condition??

Re holidays I usually go away around November, I suppose I will have to see

How I go with treatments before I book,I will ask for more advice

From yourself and others as I go??I will join my local Birmingham

Support group.

Cheers

Philx

5

Hi

As in my response to mike thanks for you response, I felt a bit

Shaky after my first plabotomy but strangely enough about an

Hour after ,I was OK just after???the other thing I wasn't told to drink

Plenty of fluids before plabotomy, I will rectify that next week,

Re alcohol I can take or leave it, but when you are all inclusive I

Think because it's there????I will be learning as I go with this condition

But I really think this blood test for ferritin levels should be done

As norm along with other bloods,expensive yes but plabotomy is

Expensive???

Cheers

Philx

6

Hi folks....the key thing with alcohol as well as the fact that it enhances iron absorption, is that it plays a big part in oxidising iron...we all hear about anti oxidants, well alcohol works in the opposite way...it will help iron misbehave. The most basic way to explain this is...we all know iron can rust....well anti oxidants help stop it rusting, alcohol helps it rust.....that's the issue. If your iron levels are normal...good, not much of it to be effected by alcohol. If your levels are still high, then alcohol will help it misbehave in your liver and body...really stressing out your liver as the iron 'rusts' away. Red wine has tannins so yes, that helps stop iron absorption, but don't go mad on it, as it contains a fair bit of alcohol especially the full bodied ones.

So, get the iron levels down to a safe limit...if liver is OK, then enjoy a drink, but like everyone, try to go easy...stick to limit, have days off...the odd mad moment I'm sure is fine. I'm off to a beer festival in two weeks, and I won't be sticking to a couple of halves!!

7

Good morning

Iron people

I had my first phlebotomy on Wednesday, I was OK when I had it done

And for an hour after,then I started to get a woozy head,this lasted

All day yesterday, I feel a bit better today, anyone else experienced

This??? I drank plenty of water before and after,I'm hoping this was

A one off not looking forward to feeling like this after each phlebotomy.

Cheers philx

8

Hi Phil. I started my treatment a year ago. I was always OK afterwards, but Def light headed afterwards. There were a few times where on the following morning I felt so so weak and light headed. I couldn't go to work. Work was always fine and have been very supportive. However, over the last 5 months I felt totally fine...my body adapted I think. I definitely drank loads of water before and after. This Monday I'm going for my first blood donation. Will be lovely that my blood will now be used and not binned. Then, in a few weeks time I'll have my first blood test in Maintenance phase. Really hoping my level hasn't gone up too much.Anyway, keep us posted....

9

Hi

Mike I am glad (well not glad)that this is a normal reaction

I was no good at all yesterday, lightheaded weak,I'm lucky I have

Retired but am active I like to do things,no chance yesterday, I've

Been swimming this morning, and run for the bus a couple of times.

Luckly my next 5 weekly phlebotomies are 10.30 am got the rest

Of the day to recover ,and the following day will not do anything.

With all this iron in my body get a bit worried when the

Scrap man follows me ????!

Thanks again dare say I will need other support as I go,I am aware

Now it's a long treatment

Phil x

10

Hi Phil. You're getting the treatment now so that's great. I was running a lot, and was one belt from black belt in karate when I got diagnosed. I gave it all up...BUT have still done loads of walking as I have two dogs. Now I'm in maintenance phase and feel good, I'm thinking of starting jogging again...maybe aim to do the half marathon next year.

What was your ferritin level again at the start....

11

Hi mike

1 was 1130 the other was 88 ,I asked the nurse the other day

How much my levels would fall with each plabotomy she said

She didn't know,but the first one was done on a ward in case they

Had to give me fluids.probably get more info from haematology department

On Monday they deal with it on a day to day basis.

What I need to get my head around what does it matter if you have

Genetic or hereditary or what ever you still have hemochromatosis

And you need treatment for it???

Cheers Phil.

How do I start a new thread each time???

12

Hi Phil. Some weeks with me it fell by a few 100, other weeks it fell by 10. On average it was about 30. So, it may take you about 6 or so months of weekly phlebs to get you below 50. Don't be discouraged if you find its going down quite slowly from time to time, that's just the way it goes. Other weeks I was amazed that it went down by a 100 or more! Just stick with it. Don't need to bother with the fluids if you drink a good few pints of water and milk a few hours before you go. I always had a bar of chocolate during each procedure...little treat. The nurses were great...in an odd way, I looked forward to going each week. Had a good laugh. All quite a positive experience...

13

Good Evening All.

Was just reading all your posts...

My sister is waiting for results for Haemochromotosis... The Doctors say they are 99.9% sure she is positive but can't confirm until the results are in.... It's the topic of all our family conversations for the past few weeks as people have being telling my sister that if she has it, one more sibling will have it and another will be a carrier... There are 6 of us... So as you can imagine we are all waiting patiently to see if we have to get tested and who are the other 2 going to be diagnosed... They reckon that I'm not in the frame as I'm always full of energy...Anyway, I get my bloods done every 3 months, B12 related, and they are usually ok.... I was at the hospital last Wednesday for something totally unrelated and had a few tests, everything seemed fine.... Just as I was about to leave the Dr. came up to me and said, Oh, I have your Bloood results.... "There's an abnomality in your Liver"...I couldn't believe......So regardless of whether she is diagnosed positive or not, I have to go for the test in 2 weeks time.  

2 Months ago we never heard of this condition and now everybody that I know seems to know someone who has it...  

Anyway, Thanks for listening to my little story... (Feeling Nervous)

V. 

14

Hi Vera

Sorry to hear of your plight,I hope everything turns out OK for you

I was only diagnosed after a routine blood test found a abnormality

In my blood, two further blood tests revelled high iron levels ,I was

Referred to hematology, and started plabotomy, last Wednesday

They are doing genetic screening,have 3 sisters 2 of them are the,

Are the opposite just been informed they are anaemic, the other one

Is waiting for results, my brother unfortunately died in may,

So I will never know if he had it,my parents were both Irish,so I'm

Assuming it comes from them,??I am not looking forward to plabotomy

To get my levels down from 1130 but if it saves my life it has to be

Done,at the moment all my blood test are saying no organ damage, I hope

It stays that way, stay strong till you get a diagnosis, and deal with it then

Cheers Phil