Worried about my son

I have HH and not any symptoms, i dont drink either, but i have 3 sons who drink quite heavily, but one in particular has lost a lot of weight, he used to be quite muscular, but his weight has dropped, he went to see a Dr in Spain where he lives, he has had every test under the sun, but they couldnt find anything wrong

I saw a programme called GPs behind closed doors on TV and a patient had the same synptoms as my son, he had pancreatitis, my son has the same pain in the same aea

I have told him about this and suggested he goes back to the Dr

The Dr did say he should cut down,[or out] the alcohol, as his liver didnt look too good, but that is all he was told, he said, but i am worried that he didnt understand everything the Dr said

Has anyone on here got or had this condition,

The patient on this TV programme was give something called Creon and put weight back on and was back at work

Just curios to see if anyone here had the same symptoms and the out come

My other 2 sons, who are twins are heavy drinkers, one has a fatty liver, and the other one hasnt kept up his appontments due to work hours being awkward, [he say] but i think he doesnt want toknow,he says all his tests have been ok, which ni dont believe, his ferritin was over 300

Thanks in advance

9 Replies

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  • I can't comment,

    but all i can say is often when the liver is identified as the problem organ it is often to late to be completely

  • Haemochromatosis is, by definition, a hereditary condition and one that is easy to test for. Your son's ferretin score of 300 could suggest GH or it could raised because of alcohol use. Either way, it would be acceptable for all of your children to be tested because you have the condition.

    Mike

  • I wrote a whole long paragraph, but its disappeared, so i will make this short, all children were tested, and twins diagnosed long before me

    My eldest in Spain rarely drinks now, but sill has stomach pain, the twins wee diagnosed at 18, i was tested at about 45 and told i didnt have it, only by chance and a blood test years later, discovered i did have it

    The one whose ferritin was over 300, has it, but not kept up with appointments

    All my children are aduts now, sorry if i didnt make that clear

    What is GH by the way,

    Thankyou for your reply

  • Genetic Haemochomatosis (or HH). He should be advised to recommence venesection because the consequences can be serious (up to and including liver cancer).

  • Thanks Mike,yes he needs to have more venesesctions, he says he had a letter from the hospital, to make an appointment and another the day after cancelling it

    I do keep telling him that he should get onto the hospital again,, but i know we have no consultants like we used to have, they only come here on odd days, its disgusting really,

    I had 4 blood tests and each time i was told they were out of date , so had to have another,

    My ferritin builds very slowly, its over 2 years since i had a venesection, then this time was told my ferritin was 172, i had 1 enesection 2 weeks ago, and told i needed one every 2 weeks, now its down to just under 100, so cancelled my next one for this tuesday

    My Dr frightened me to death 2 years ago, because i had a spike in my liver

    Just had blood tests again at my Drs for Thyroid and diabetesreading, he said it could signify Cirrhosis. when i saw my consultant he said liver counts do spike smetimes and the Dr shouldnt have said that,

    I feel fine in general, but a bit worried because im getting a bit breathless ,but i have put a bit of weight on

    Just had blood tests at my Drs, for thyroid and Diabetes,so waiting for results of those now

  • Hiya valeriej43. I was diagnosed in 2000 with HH.I have a constant problem with the symptoms. My serum ferritin was through the roof & I have liver Cirrhosis plus osteoarthritis. I was 36yrs when diagnosed. The Haemochromatosis Society is extremely useful & informative. I wish I had been dxd younger as I too have battled with alcohol. This site is also invaluable to me & has soon fab people who will help. We are all with you. Best wishes x

  • Thank you very much , i am sorry you are having to cope with these health problems at our age, are you dry now?

    My daughters friend she has known from school has gor Cirrhosis, she has to have fluid drained every now and again, shes very lucky shes still here, she as found more than once in a pool of blood she vommited up

    I hope you are feeling ok just now,

    I think my younger son is in denal, because he says he feels fine and his liver readings are ok, when he has had blood tests, but i cant see how he can be, he has a very demanding job in a bakeryand the store he works at keep him run off his fee, he is constantly tired,

    He also lose about 2 stone, but puts it down to work, he is very thin, a consultant once asked him what drugs he was on, he looks ill to me and is very red in the face,but he doesnt touch drugs, hates medicaion of any kind

    My eldest son has constantly got pain in his stomach, so obviously something not right,

    He often just drinks water, his partner always has a glass in her hand on facebook photos, but says shes fine

    Some people will just not listen

    Thanks again for your input;

  • It's sounding like your son is exhausted & I would try again to get him to see the Doc. I hope everything works out well. The pain in the stomach that your older son is getting would suggest there is something amiss there, so off to see the Doc I would suggest. I'm doing OK with the drinking. I've had to go "back to the drawing board" with it, as in wean myself off slowly. I know from experience that to just stop makes me feel really ill and can be dangerous. I'm doing exactly what I did last time which worked great so onto the lemon&ginger tea for me! I also love Tonic Water! It's also a case of changing my habits into good ones with a positive mental attitude . ..... easier said than done! God loves a trier !

  • Thank you for your reply, i can understand why my younger son drinlks, you wou not believe how unlucky he i, if anything can go wrong for him it will do

    He had an abusive partner for 8 years until h coud put up with her no longer, she use to claw his face and was or seemed totally unhinged, he never hit back, he came back t live with me fo a while, then he met someone else and while staing with her one night ,her ex broke in and stabbed him, that was when he started drinking really, as he wouldnt go out for quite a long time, after that his car caught fire, he fell in the snow and broke his ankle

    I could go on and on, he is o unlucky

    About 9 years ago he met a nice girl, woman really i suppose, and helpeed her to get a divorce from he husband she had been parted from fr 7 years, helped her to get hers and his property sorted out so she could by a place of her own, as everything was in joint names and he was a con man, in the meantime she was staing with my son, but as soon as she got her own lace she didnt want him with her, so now he feels lik hes been kicked in the teeth so to speak,

    He is such a good natured man, hewill help anyone, but too much in my opinion, as he gets used,

    He has a good job as a baker in a big supermarket, but again he is taken advantage of, because of his good nature,

    He is nw hoping to get a transfer and start afresh,

    If the last girlfriend hadnt ditche him i think he woud have had an incentive to try to stop the drinking, nw she hs a lovely flat and he is in a dump of a place still,

    Sorry for the ramble,

    My older son has almst stoped drinkng,he has one now and agai, but hs partner doesnt help, as she drinks like a fish, and although fine now,i am sure will suffer later and doesnt help seeing someone drinking when he is trying not to

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