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Haemochromatosis and Alcohol intake

Posted , 5 users are following.

jamie87239
jamie87239

Hi Guys,just thought it was about time I signed up to the conversations and expressed some of my thoughts on Haemochromotosis.

I was first diagnosed with the homozygous C282Y Mutation only about 18months ago,I have suffered with quite a lot of changes in my life since turning 40 considering the amount of alcohol I used to drink which I believe is what probably contributed to my high iron absorption to the point when I was diagnosed I had a TS 87% and a SF 2542ug/l which explained why I was so sick,one thing I have learnt since having this condition is it is imperative to bloodlet regularly and limit the intake of alcohol as I do notice when I refrain from doing the right thing,I get al those symptoms like aches and pains in my joints,very tired and no energy or motivation,spaced out and my skin changes colour,these are things I have noted for others reference.My levels dropped from 2542ug/l - 963ug/l in the first 12 months and now I am at around 630ug/l with 48%sat so I am getting there,constantly being aware of what I eat and drink are a pain especially if you like alcohol,I also have had 2 ultrasounds done in my time,fortunately no cirrhosis or scarring smilebut fatty liver deposits not so good sad,I guess at the end of the day you can live a normal happy,healthy life if your prepared to put in the hard yards initially and accept what you have to live with for the rest of your life.I would like to hear other peoples comments that struggle with there alcohol intake.

thanks for listening

cheers J

1 like, 12 replies

12 Replies

  • sheryl37154
    sheryl37154 jamie87239

    Posted

    I never had a struggle with alcohol intake.  Some people reach those levels without excessive alcohol intake as well.

    I have been 'deironed' for many years now and on 3 monthly maintainance venesections.   My optimal ferritin iron level is 34.  My TS% is always high though.  I now have a medicinal small glass of good red with dinner to help reduce the uptake of iron.  Tea (tannin), milk products (full of calcium) does the same.   I.e. have cheese after dinner, rather than a sweet. Find cakes, etc made from almond meal and no flour.  That is best time to take a calcium supplement too.

    I don't know what you have stopped eating (it is not advisable to stop eating foods with iron in it - every food as iron in it anyway, but certainly not foods that have been fortified with iron), but if you eliminate sugars, and starchy foods (you know the drill, no bread unless it is seedy and looks like sweepings off the floor, no cakes, bikkies, etc. no potatoes, esp. no chips, root veges, pasta, rice, corn, fruit juices - all sugar, soft drinks, etc.) you will reduce your fatty liver.  It is not fat that causes fatty liver (except for bad fat, like that soaked into hot chips), but sugar and starch - which converts to fat in the liver when you don't run marathons, or chop down forests every day.

    Avoid packet foods, frozen ok, if not check if carbohydrates are higher than protein.  If it is, leave it on the shelf.  Look for recipes where protein is higher than carbs but eat plenty of greens (even the proverbial spinach), cauliflower.  They are carbs but not starchy.  If you miss pasta, rice, look for Slim Pasta made from Konjak root - no carbs, all fibre.  Don't have more than one serve, or you will burst.  It is also marketed by Slendier now.

    There are 'power balls' made from ground dates, nuts, coconut - leave out the syrups, dates are too sweet anyway.  Good oils are XV olive oil to drizzle over veges, salads, and cook with coconut oil.  Macadamia oil and avocado oil good for veges and salads too.

    Once you are deironed (<50), treat yourself to one glass of good red and make it last all night.  binge on water instead.  you will soon lose the craving for sugar and alcohol.

    good luck. treat="" yourself="" to="" one="" glass="" of="" good="" red="" and="" make="" it="" last="" all="" night.=""  binge="" on="" water="" instead.=""  you="" will="" soon="" lose="" the="" craving="" for="" sugar="" and="" alcohol.="" good="">

    good luck.>

    • jamie87239
      jamie87239 sheryl37154

      Posted

      Hiya Cheryl,thanks for your invaluable advise on HH,you sound like you have educated and disciplined yourself well,especially with your strict diet but I suppose that's what it takes to keep the rust at bay.I will definitely adopt your views on the tea drinking and cheese as I love both,i think the sugar and carbs could be a challenge though,no problem with proteins and greens as I do eat like that now,I gave up citrus to,but my naturopath wants me to drink a freshly squeezed warm lemon juice in the mornings,says it is great to kick start the liver,green tea and black tea after  meals full of phytates and tannin? I want to buy a HH COOKBOOK I saw on kindle,and learn to make those protein balls Yummy!! And never heard of konjak root but very interested ?I will keep you posted

      Cheers J

  • sheryl37154
    sheryl37154 jamie87239

    Posted

    That should be frozen VEGES ok, not frozen dinners (they are full starch and sugar).

    Only foods with no iron in them are cream, some cream cheeses, and scotch whiskey  and we can't live on that!!!

  • dillinger
    dillinger jamie87239

    Posted

    Hello Jamie, I am a 44yr old Male who was recently diagnosed with HH.

    My ferritin level is 1421.

    I had a biopsy 2 weeks ago and although I have no cirrhosis my liver is fatty and there is some scarring.

    I too was quite a heavy drinker. Since being diagnosed Ive more or less cut drink out. I used to drink about 40/50 pints per week. Guiness to which has more iron in than any other alchoholic drink.

     I used to love going to my local  for a few pints. It is difficult stopping completely. Personally I cant stand in a pub drinking a soft drink.

    When I do visit the pub now , which is only once or twice a week I'll have one pint of bitter or ale and go for one no stronger than 4%.

    I sip it slowly, my record so far is making 1 pint last 3 hours.

    It does get easier and Im noticing that Im putting on weight in the wallet dept.

    Fortunately I like red wine so once I start my venesection and get my ferritin levels down I'll be able to enjoy the odd glass.

    • sheryl37154
      sheryl37154 dillinger

      Posted

      I cannot understand why they take so long to start you on venesections.  It should be treated urgently once diagnosed, especially at that level of ferritin iron.

      Hats off to you for making your pint last 3 hours - although I have made my glass of wine last 4+ hours having taken it to bed with me because I get busy and forget about it.  Sipping allows you to savour the taste a lot more.

      And I like the fattening wallet side effects too.

       

    • jamie87239
      jamie87239 dillinger

      Posted

      Hi Dillinger,thanks for your support mate,sorry to hear you have the dreaded Celtic curse to,but to be honest better the devil you know than the one you don't know about,to be honest I still struggle with the drink personally but I admire your courage at being able to go to the pub and sip on a pint.I wish it was that easy for me,I did try hard at the start but ended up with severe anxiety and nocturnal panic attacks and ended up on alepam and prozac because my body and mind were just freaking out from withdrawals it was out of control and I didn't realize the extent of what I was going through or understand HH.I don't go to local boozer anymore,but I still have a drink at home with mates,my biggest problem is my addictive personality and I end up going on binges from time to time when it gets a bit much,because I feel I am depriving myself of that feeling I like and I do miss it ,but then I pay for it,I need something to take me away from reality, on a brighter note,I got a venesection done today,a new record 4min 5 sec and feel a lot better for it,do you notice the difference to ? I am getting 1 a month at the moment For another 6months and then get my blood tested again,it's hard to know where your at when your new to this condition and how long it takes and what it's like to feel normal.Sounds like your enjoying the 3hour 1 pint beer challenge ha ha smile! go hard stay strong mate,anyway that's enough from me speak soon.

      Cherrs J

    • dillinger
      dillinger sheryl37154

      Posted

      Hello sheryl,

      Yeah I don't know why Im waiting so long either. Once diagnosed you would think they'd get the venesection started ASAP.

      I like the idea of drinking wine in bed, it's where I spend most of my free time lately as Im so bloody tired all the time. 

  • michael1960
    michael1960 jamie87239

    Posted

    It appears to me that some of this quest to ''leave out this and leave out Alcohol'' does seem to be getting on the Silly Side. I was Diagnosed Feb 2000, and having spoken to many of the Dr's and Consulants in the Blood Dept, it seems there's only a small amout of Foods that one SHOULD avoid.  Breekie Cerals, (foritied with Iron and Vitamins). Spiniach, we all know about that one i take it. WaterCress, well thats not been proven,and many Chef's i see on T/V say it doesn't have a lot in there.  Liver,and again we all know that one is full of it,and finally Guinness. 

    Jamie say's that he was a fairly heavy Drinker, well i do, but its the kind of ''one off'' a binge on one day.  Is that good or bad, well i dont know, but it comes to a point were we all have to enjoy life,and jamie also said that as long as the Blood letting is kept up,which,lets face it, we all are going to need this for the rest of our lives.   Everyday i suffer with so many Aches and pains, always tired, and no motivation. Swollen Knuckles,ankles,and painful kness. No skin color change,but everyday my legs ache and feel like Jelly.  ( something i've had from day one,and no one else gets)   I guess all i'm saying is, Live your life,keep the Venisections up,and dont worry about ''not eating this and that, and well, not to much alcohol.cool,as that was never spoken about to me. Getting p*ssed every day will have an effect, so maybe spread it out. And Drink some water with it.

    Cheers. Mike.

    • sheryl37154
      sheryl37154 michael1960

      Posted

      When you read the HH cookbook you will find out why it is not necessary to leave out spinach and watercress.  Liver, definiately, and according to the book, clams - the level is so high it seems to be a typo to me.

      We are trying to improve our 'health' lot in life - it takes education.  Unfortunately for you, latest research says venesections are not going to reduce your arthritic pain, if that is what it is, but to reduce how you are feeling right now, you might feel better off reducing inflammation causing foods as well as venesections.

      I have just recently come across research by googling 'muscle iron overload' and disappointingly find that iron overload in muscles does cause weakness and atrophy.   I have a lot of reading to see if there is an antidote, as they are mentioning different types antioxidants, but which ones are proven!  That might be why you legs feel like jelly.

      Mine have become so weak that I felt I was heading for a wheelchair.  So I have sought out a rehab referral and am working with an exercise physiologist.  The aching legs I had were an undiagnosed message leading to osteonecrosis and both my hips broke up which meant I had to have both hips replaced.  Unfortunately one was botched and I was left in severe pain walking, standing, sitting, lying down.  I had to drag myself upstairs.

      So ask you doc for xrays of the legs, esp hips.  If you still have muscle, keep working it, strenuously, if you don't - do it anyway.  I feel rather dashed that maybe all my efforts to regain muscle could be a waste of time and effort but I have to keep pushing on just in case it is not.

      Really you have the choice to keep doing what you are doing and getting worse and worse or going to Plan B and doing something else about it, and helping yourself.

  • dillinger
    dillinger jamie87239

    Posted

    Hello mate, how long after you were diagnosed did you start the venesection ?.

    I've been diagnosed for around 8 weeks now and Im still waiting for an appointment.

    My consultant sent the venesection dept at the hospital where he's based a letter 10 ays ago saying it was urgent I get started ASAP but Ive heard nothing.

    I phoned them myself today and they say they have no record of a letter or email from my consultant.

    They're due to call me back later today with an update.

    Im starting to loose my faith in the National Health Service.

    I feel like getting a stanley knife and doing a bit of D.I.Y venesection myself.

    Im sure it wont come to that. It's enough to drive a bloke to drink.... If only.

    Oh well , sure itll get sorted one way or the other.

    I've got the Haemochromatosis Cookbook. The pictures make it all look very appetising but the ingredients are a bit 'hungry 30's'.

    Trying to fill the gap left by not going out as much is tough. Like myself you sound like a very social bloke.It's not easy sipping a beer while all your mates are getting on it.

    Im going to be doing a lot more fishing and a lot less boozing this year I recon.

    I'm also getting around to reading the tons of books Ive bought over the years and never got around to reading.

    Good luck with everything mate, if its any consolation ; theres a few of us out here going through it with ya. 

  • sheryl37154
    sheryl37154 jamie87239

    Posted

    I bought the HH cookbook too - it is very informative.  I didn't take to the recipes though but it gives us the idea.  It was very interesting to read those where the meat is marinated/cooked in tea.  It sounds like we should be ingesting tea with our food in order to reduce the uptake of iron.  Makes sense, as it is in the stomach at the duodenal end that the iron is absorbed.

    Coffee ok too but if I drink at night or late afternoon, my head won't sleep but my body is knackered.  I have very short days then my body starts crumbling and I have to head to bed (despite being deironed for years now).  Greek plain yoghurt is good after dinner too (for calcium) - add some dark berries.

    I really notice the impact of eating sugar/starchy foods now (I am only human).  I suddenly feel like I have been hit by a truck.  I did notice it before but did not connect it as I was eating sugar and starch (for energy, they reckon) all the time, so I felt hit by a truck all the time.

    Yes, it was difficult to give up those foods as they were habitual (and addictive).  Potatoes and bread with each meal.  I started with eliminating them from dinner.  Then arvo tea, then lunch, morning tea, then finally gave up my porridge for a protein breakfast.  So unbelievably better.  We with HH just can't digest those foods properly.

    Dillinger, I am glad you chased up your appointment.  Gee, they take years to diagnose then delay action.  We have to educate ourselves and be assertive because you will find the medical profession do not know much about it themselves, so we cannot rely on them.

     

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