1. Community
  2. Blood & Immune System
  3. Haemochromatosis

Meat eating-rapid symptoms

Posted , 8 users are following.

nikki25344
nikki25344

Hi,

I have recently been diagnosed with hemachromatosis and am waiting for the venesection to start.

Whilst on holidayrecently , I started to feel extremely unwell very swiftly after eating a T-bone steak . I will now cut out red meat . Has anyone experienced symptoms that can  be directly attributed to eating meat? 

When  I am feeling poorly, my eye lids swell up and droop. This was a symptom that led to my initial diagnosis. Has at one else experienced this? 

 

1 like, 10 replies

10 Replies

  • megan36105
    megan36105 nikki25344

    Posted

    What are your levels at the moment?

    I've never experienced something like this before. It should be said that while people with haemochromatosis should stay away from too much red meat, having a steak once in a while will not hurt you. I was even told by my specialist that I didn't really have to cut out any foods, just to eat them in moderation (except for raw shellfish because of the bacteria in it that thrives in high-iron environments).

    Is there a chance that the steak wasn't properly handled/cooked? 

    And I've never experienced swelling of the eyelids. I've never heard of that being a symptom, either. But that doesn't mean that it's not. Everyone experiences iron overload in different ways. 

  • sheryl37154
    sheryl37154 nikki25344

    Posted

    Hi nikki, I have a particularly aggressive 'dose' of HH, but no, I don't feel any worse after eating red meat.  HH organisations don't particularly advise giving up red meat or food with high levels of iron.  It makes no difference.  It is up to personal choice.  A lot of people don't want to eat red meat anyway.  Just don't have it every day, mix it up with white meats and fish.  Clams reportedly have the highest level of haem iron, it is so high I think it is a typo.  Then liver, but ordinary red meat is not particularly high.  Of the veges, dried beans seem to have the highest levels of non-haem iron.

    I run a support group for HH and no one has mentioned having the symptoms that you have (eye lids).  Having said that, I do know that HH can affect people so differently.  How is your liver?  Maybe it has been affected by the HH and it is giving you these symptoms.

    Do you have genetic Haemochromatosis, i.e. what are the two faulty genes that you you have inherited?

    By poorly, do you mean you become extremely fatigued, body aches, etc.  Perhaps it is caused by extreme fatigue.   When I can't continue any longer in the day because of the fatigue and pain, it feels like my body is falling apart and I just have to drops things to go to lie down.   Maybe my eyelids have gone swollen and droopy then, but I can't stop to look in the mirror!!! smile  And I have been 'de-ironed' for years now and now have 3 monthly maintenance venesections.

    There are foods that you can take that supposedly reduce the uptake of iron, i.e. polyphenols in (one small, because of potential liver problems) red wine, tannins in tea and coffee, calcium in dairy foods among others.  I always have some of them with my meals.  Do not take vit C supplements or OJ with your meals - they increase the uptake of iron.  Normal fruits and veges that have vit C in them are deemed ok, we still need the antioxidants.  Check breads and cereals, etc for added iron.  These are the 'bad' foods.  I do take a vit c supplement last thing at night as it keeps sore throats, colds, etc. away.

     

    • nikki25344
      nikki25344 sheryl37154

      Posted

      Sherlock,

      Thank you you for your reply and support. I am feeling very alone at the moment and it's so helpful, to get some constructive support. Because my family can't see the symptoms, they don't understand how debilitating they are. Some days I feel really exhausted but don't tell my husband as I don't want to be whingy. 

      Will the symptoms subside side once the v section start or wil, it take little longer?

      i hope that you are more stable and comfortable now that you are having 3 monthly treatment?

  • sheryl37154
    sheryl37154 nikki25344

    Posted

    Hi Nikki, I still have those fatigue problems but I have about 13 good days after a venesection then it starts decending on me again.  Most people don't have that same problem.  It took 9 nine years to get a diagnosis after the severe onset of the symptoms so a lot of damage was done in the meantime.

    Ask to be referred to a haemotologist and make sure you are de-ironed down to at least <50, or="" even="" better,=""><30.

    contact your country's hh association to get some literature, advice, and find out where your nearest support group is.  when you get this literature, give it to your husband to read so that he understands what you are going through.  none of my siblings have it, they are carriers only including my mother.  i am sure my dad had the two genes but died of cancer without being diagnosed (of hh).  none of my family understand or give it a second thought because they are not feeling it.

    my husband and son also have hh, my husband has weaker faulty genes (h63d) and, although he got hodgkin's lymphoma, he is now in remission, and his hh does not appear to be affecting him anymore.  from his experiences, he knows what i am going through. contact="" your="" country's="" hh="" association="" to="" get="" some="" literature,="" advice,="" and="" find="" out="" where="" your="" nearest="" support="" group="" is.=""  when="" you="" get="" this="" literature,="" give="" it="" to="" your="" husband="" to="" read="" so="" that="" he="" understands="" what="" you="" are="" going="" through.=""  none="" of="" my="" siblings="" have="" it,="" they="" are="" carriers="" only="" including="" my="" mother.=""  i="" am="" sure="" my="" dad="" had="" the="" two="" genes="" but="" died="" of="" cancer="" without="" being="" diagnosed="" (of="" hh).=""  none="" of="" my="" family="" understand="" or="" give="" it="" a="" second="" thought="" because="" they="" are="" not="" feeling="" it.="" my="" husband="" and="" son="" also="" have="" hh,="" my="" husband="" has="" weaker="" faulty="" genes="" (h63d)="" and,="" although="" he="" got="" hodgkin's="" lymphoma,="" he="" is="" now="" in="" remission,="" and="" his="" hh="" does="" not="" appear="" to="" be="" affecting="" him="" anymore.=""  from="" his="" experiences,="" he="" knows="" what="" i="" am="" going="">

    contact your country's hh association to get some literature, advice, and find out where your nearest support group is.  when you get this literature, give it to your husband to read so that he understands what you are going through.  none of my siblings have it, they are carriers only including my mother.  i am sure my dad had the two genes but died of cancer without being diagnosed (of hh).  none of my family understand or give it a second thought because they are not feeling it.

    my husband and son also have hh, my husband has weaker faulty genes (h63d) and, although he got hodgkin's lymphoma, he is now in remission, and his hh does not appear to be affecting him anymore.  from his experiences, he knows what i am going through.>

    • nikki25344
      nikki25344 sheryl37154

      Posted

      Hi Sheryl.

      My apologies for the mis spelling of your name in my last message.

      Thank you for your advice. I will find a HH support group and this will help me to get answers to the questions that I still have. 

      i was very relieved to find that my brothers and children are not carriers or affected with HH although I cannot understand why I have the faulty genes and not my brothers. With the same genetic make up I would have expected that they would also be carriers.

      I was sad to read that your dad died of cancer and that your husband has also battled Hodgkins Lymphoma. It certainly puts things in perspective for me. Like you, my own father died of cancer quite recently and he had bowel, liver and lung cancer. I am seeing my consultant tomorrow for the result of my liver scan , and hoping for the best.

      All my best wishes to you.

  • sheryl37154
    sheryl37154 nikki25344

    Posted

    If both your parents have 2 faulty genes each, then your brothers could not possibly miss out.  It sounds possible from your father's health issues that he had the 2 faulty genes, and your mum is the one with one positive and one negative (i.e. a carrier).  You inherited her pos gene and one of your father's pos genes, and your brothers inherited your mother's neg gene and one of your father's pos genes, making your brother a carrier.

    As you have been diagnosed and had a genetic test to prove it, your mother would be entitled to a genetic test too.  (Sorry, all assumptions re above, but that is how it generally works.)

  • marie86421
    marie86421 nikki25344

    Posted

    Hi Nikki

    I get this eyelid swelling and drooping too.  I asked my doctor about it and was told that he didn't know what it was.  It does not happen as often as you experience but it is a weird sensation when I do get it.

    I hadn't thought that it might be linked to haemochromatosis.  Do you also get the sensation that there is something resting on your eyebrow or across the forehead directly above the eye?  When I get this problem I am constantly trying to wipe away something that isin't there although it feels like there is. 

    Marie

  • hannah25440
    hannah25440 nikki25344

    Posted

    Hi Nikki 25344 I'm in the process of being diagnosed with Haemochromatosis.I had steak for dinner last night i must say today i have awful cramps in my shoulders upper arms and especially my wrist I've had a few good days with not feeling so tired and crampy my eyes feel like they have not opened properly today my top lip even looks puffy so i wanted u to know ur not alone and i get very similar symptoms to u

    • miller.jones
      miller.jones hannah25440

      Posted

      This is nothing to do with the streak.

      Look at what you had to eat with the steak I bet I can guess straight away something which is high in carbs.

  • samantha27302
    samantha27302 nikki25344

    Posted

    hi nikki,

    every time i eat a steak im violently sick. Ive come to the conclusion that i cant tolerate steak anymore. Alcohol does the same thing .

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.