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Posted , 8 users are following.

jv666
jv666

Hi,

Just been told by my g,p that i have hemochromatosis, turns out i have irish great grand father!!

I am waiting for an appointment with the hospital, been told it could be upto 6 month wait.

The doctor said my ferratine levels were 0ver 2000 but liver not showing any damage yet.

I have done a bit of searching on the web and i am a bit worried as i am not sure whats to come if im honest.

Will i have to give blood weekly etc.

I havent eaten red meat since i found out, (do i need to cut it out completely)

I have reduced my alchahol (do i need to stop drinking all together) i do like a drink i must admit.

The reason i went to my g,p was due to dizzy spells, thats how i found out (through blood tests) these have now stopped.

Apart from really bad aching knees i feel fine.

Any advice would be appriecated.

Thanks

1 like, 18 replies

18 Replies

  • garrett82
    garrett82 jv666

    Posted

    Irish should have nothing to do with it..you have to chill on the drinking. my doc said 2 beers a session. well, that is candyplay to any one who drink so i quit. go crazy every once in a while, but i def pay for it. and red meat, im german and polish, thats our diet..doctor warned me about it, but im fine
  • zach76568
    zach76568 jv666

    Posted

    No worries - chill on the drinking until ferritin is below or around 50. Luckily they caught it in time before damage to liver. I would recommend going to Red Cross as often as they let you until you can get into dr and get phlebotomized on a weekly basis. I won't sugar coat it. In the beginning, doing it weekly is not the most fun in the world. But keep a good attitude and have a good support program at home. Just be advised that you get fatigued easily in beginning. I recommend chilling on the drink in beginning because you will just load up on iron and will cause more needles to go in arm. When you get to a maintenance phlebotomy and numbers look good- go back to normal. I eat red meat and drink beer. I just have to go on 3 times a year. My brother goes twice. I wouldn't do liver or certain seafood. As long as no damage is done to liver it will repair and heal. it took me about a month of every week, then every other for about 2 months. I was young and not symptomatic, so other than my blood pressure improved, I was just worn out from phlebotomy's. switch arms every time if you can. It will pay off in the end. Drink plenty of water and have someone take you for the first couple of times until you get used to procedure. No sweat. The needle is letting us live normal lives. Or wherever normal is. Hope this helped

  • jv666
    jv666

    Posted

    Thanks for the replies.

    Can i ask does getting phlebotomized often knock you about, what side affects can i expect. will i be able to go back to work etc.

    Thanks

    • zach76568
      zach76568 jv666

      Posted

      Im in a very physical occupation. What I have found is that fluids ( 2 waters for every Gatorade) helps, but your body is in shock with deironing and fluid loss. My own experience is that I was very fatigued in the first couple months. Nothing you can't handle, just felt like I did not have a lot of energy. I'm 40 now and go 3 times a year. Just like normal people donating blood. I still am wiped out the day of phlebotomy, but get better with fluids in the following days. It is definetaly a change, but nothing you can't handle.

    • abookreader
      abookreader jv666

      Posted

      I agree with Zach. Makes you tired more easily. But water, rest, good diet etc will really help. I think there are physical mental and emotional aspects to doing the phlebs on a fast pace. You may find one more challenging than the other.
  • Golak
    Golak jv666

    Posted

    Hello jv666,

    It's great that you found out about your night ferritin now rather than later.

    I'm not sure what your GP has done so far to assess the damage to your organs. there are a few things are a must at this point, assesement of the damage to your liver most of all, and heart need to be done.

    Iron usually starts depositing into your organs when ferritin goes beyond 1000, so if your ferritin is indeed 2000, then it is unlikely that your liver is spared ( please do not think I'm trying to scare you, but hemochromatosis is not very well known even among the physicianS and the latest data is only gathered from only a handful of studies that have been done worldwide, my advice to you is: learn about the disease as much as you can) having said all of this; it is crucial for you to start venesection (your doctor will exctract blood from your vein) ASAP!!! please don't take this lightly as phlebotomies are the only means of controlling the disease, yes you will have to have weekly venesections for now with a control of your blood tests (your doc will make sure that you don't become dangerously anemic meanwhile) IT IS NOT OKAY FOR YOU TO WAIT ANOTHER 6 months to start your phlebotomies (I'm hoping that's not what you meant, and you've already started giving blood)

    There will be a genetic testing done for you as a confirmation of the type of the disease.

    Lay off the alcohol completely for now, until you have firm evidence of your liver situation, unfortunately checking the enzymes alone is not sufficient and you will have to undergo a special kind of MRI or liver biopsy to make sure what he extent of the damage is. This is important since alcohol will further destroy your liver cells if it is already damaged by the iron and take your liver towards failure faster.

    In terms of diet, it's better to reduce your consumption of red meat and cut organ meat altogether. Also no raw shellfish, since it cause a fatal infection when the serum iron is as high as yours. It also helps if you drink tea (plain black ) with or right after your meals, this will not reduce your already high iron but will help reduce the absorption of new iron from your gut.

    I hope you will have a fast reducing iron.

    All the best!

    • jv666
      jv666 Golak

      Posted

      Thanks for your detailed reply. At this moment in time i have only seen my G.P i have had 2 blood tests, to confirm the disorder, the 2nd test took a few weeks to come back. That was approx 6 weeks ago, i have heard from the hospital and they say approx 30 week waiting time before i get an appointment. I have heard noth about blood being taken etc. The G.P said my liver reading were slightly high, not sure how they know this by just blood test alone!!
    • Golak
      Golak jv666

      Posted

      You're very welcome. I'm glad to be able to shed some light on a situation that I know is very confusing.

      When is your first scheduled phlebotomy?

    • Golak
      Golak

      Posted

      Your GP has checked your liver enzymes, which is easily done through a blood sample.

      You can wait 30 weeks to see a specialist (I'm assuming that's what the waiting time is for)

      You CAN NOT afford to wait 30 weeks to start your phlebotomy, for your body will be harmed so much more through this time than it already is. )

      Your GP can start you on a weekly phlebotomy schedule with a follow up on your hemoglobin level (that's the index that shows when you become anemic). That would be 30 weeks of you on treatment already! See the difference?

      You don't have to see a specialist to do that. Please talk to your GP and Insist on a phlebotomy schedule starting immediately. (Take this as a second opinion, I am also a GP, whose husband was diagnosed with the same disorder over a year ago. I've already gone through the stage you're at, know how confusing everything is even for the professionals and I have had a lot more focus on hemochromatosis than we do as average GPs. I have since made it a mission to help patients like yourself) I wanted you to know this since it's hard to take any opinion online from a total stranger.

      Speak to your GP and start your treatment.

    • ruth51315
      ruth51315 Golak

      Posted

      Hi Golak,  please forgive me for butting in, but I see that you are a GP with a mission to help HH sufferers, so may I ask your advice?  I was diagnosed homozygote H63D 8 months ago through a DNA test I obtained privately, when the gastro doc I was referred to because of my raised liver function tests refused to test me for HH stating "if you had HH your skin would be orange and your ferritin would be around 1000".  My ferritin hasn't been higher than 277 and my saturation has fluctuated between 53% down as low as 20%.  I am a 61 year old female.  I have numerous symptoms of HH (iron fist pain, metabolic syndrome, recently diagnosed type 2 diabetic, hypertension, browny/orange  blotches on my skin, Hashimotos thyroiditis, palpitations,  breathlessness, NAFLD, dizziness, blurred vision, early menopause ( i was 43 ), hair loss (head as well as body) , raised "bad" cholesterol in spite of eating oily fish and being a vegetarian for the last 29 years.  I do not drink, I have always swum, cycled and done my best to keep fit and like a lot of piscaterians, I have always been mindful of what I put into my body.  To be diagnosed with NAFLD, diabetes, hypertension and high cholesterol has come as a huge shock as I had hoped that my good diet and lifestlye would help stave off these ills.  MRI scan of my liver showed no iron deposits more than normal and X ray of my hands showed no reason for why I have iron fist pain.  My question is, is it possible to feel as rotten as I do, not be storing iron in my organs but still be feeling the effects of ferritin of just 277 with a saturation of between 20% (just once it was in the normal range) and 53%.  My last % was 41%.   My GP only referred me to a haematologist because I made a fuss when he could offer no other explanation for all my symptoms.

      The haematologist refused to see me saying my levels did not warrant venesections.

      In an attempt to try to help myself and see if venesection would help me feel better, I went to a blood donation appointment.  They refused to take my blood because they were worried about a suspected angina attack I had in the summer, even though I had cleared it with the donation service doctor over the phone and read him out my nuclear heart scan result, which said my heart was basically ok.  The blood donation centre made me sign a form giving permission for them to contact the cardiology dept at the hospital for further clarification.

      I feel like no-one is listening to me or taking my symptoms seriously.  All I hear is "H63Ds don't store iron" .  I know I'm not but might I not benefit from venesections with ferritin of 277 and saturation of up to 52% but currently 41%?   I have read articles, and posts on this forum from people who HAVE been given venesections with ferritin levels less than mine, and they have seen an improvement in their symptoms.  I feel like I am beating my head against a brick wall.  As a GP who knows about HH, please may I ask your opinion?

    • Golak
      Golak ruth51315

      Posted

      Hello Ruth51315,

      I'm sorry to hear that your suffering from all these symptoms. I understand that life becomes very frustrating dealing with all these issues.

      The good news is that your MRI (I am assuming that they did a special MRI method to detect iron) has not shown any depositions which is a true blessing, also as your Doc has confirmed with you, your ferritin and your saturation levels along with your age ( you're still maintaining a semi healthy ferritin despite years of menopause and everything else you mentioned, does not warrant phlebotomies.

      Your symptoms can only be justified by hemochromatosis when your ferritin/liver show iron excess. So at this point they are just multiple ailments that people like yourself commonly suffer from.

      My advice for you would be to stay on top of your cholesterol specially considering you've had anginal symptoms before. It's great that your maintaining a healthy diet and life style, you would have probably been symptomatic earlier otherwise.

      I hope you can take take this as good news that you won't have to worry about your positive genetic predisposition to hemochromatosis.

      Hope you will find this helpful.

      All the best

    • jv666
      jv666 Golak

      Posted

      Thank you once again, Golak. I will go and see my G.P tomorrow and insist on treatment straight away.

      Thx

    • sheryl37154
      sheryl37154 ruth51315

      Posted

      Ruth, I would also work on reducing a NAFLD.  Current medical science points to sugars and starches which convert to fat in the liver when not used up as energy.  Sugars and starches are in what we considered at one time to be healthy food.  Obviously with your metabolic and diabetes problems, they have ganged up on you.

      Good luck.

       

    • ruth51315
      ruth51315 Golak

      Posted

      Hi Golak,

      Thankyou so much for your reply which was most reassuring.   I shall try to stay on top of the cholesterol issue, but I was baffled as to why it is high.  About 15 years ago when I had a test done, it was only 2.59 and I haven't changed my eating habits.  It's old age creeping up on me,LOL

      Same with the NAFLD.  My diet can't have been as good as I thought.

      Thankyou once again,

       

    • ruth51315
      ruth51315 sheryl37154

      Posted

      Hi Sheryl,

      Thankyou so much for replying.  I shall definitely follow your advice.  I guess my diet hasn't been has healthy as I thought.

      Could do better, as my school reports used to say.  

      Happy New Year to you

      and to everyone on this forum

       

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