Haemachromatosis

He is 68 and has been a very big drinker all his life.  Drinking everyday.  He is constantly sick - is this a symptom of the overload Garrett82?

Unfortunately, yes. And with my ferritin high, i had such a high iron deposition i set off 3 metal detectors at the airport. All coming from my liver (was shown on mri c/the scan as well), so my liver had so much iron it couldn't process fat, protein, alcohol, sugar, etc. Properly. Need to cut back on all that. Next blood test have them test for lipase as well (pancreas enzyme). Does he have pain in his upper stomach area? Tough to eat? Abstinence from alcohol will tremendously improve his healing, though.

One more question. Does he vomit green/yellow morning, after meal and at night?

I was a very big drinker and they thought I had haemochromatosis, I was seeing the gastro. But when I stopped drinking, it went back to normal.

How much does he drink?

He says about 7 scooners per day.  Loves his alcohol.  He can also polish off  about 3-4 bottles of Shiraz a week in the evenings. 

Ah, Aus and it's many different measures for beer, all which vary from area to area. I once drove from Sydney to Cairns and I must admit, it was a pain having to keep adjusting to the different sizes. I take it this is the standard schooner, 15fl oz, about 3/4 of a British pint.

That would be about 5 pints (British) and two glasses of wine a day, so about 6 pints a day all in. That is a fair amount for someone his age. Weight loss and not feeling so good could be down to not eating properly. People who drink a lot, often lose their appetite due to the calories from the carbs in the beers.

I would have thought that would have showed in his blood tests, his liver should be squealing - it has no nerve endings so it shows no sign of pain. If he hasn't had a blood test recently, he should have one. That level of drinking is enough to affect his results.

Oh Elizabeth, I am so sorry to hear of Glyn's passing.  I have been following and responding to his posts for some years, and my last post to him was to insist he go to emergency as you wanted him to do.  So it was too late for him.  I  did not hear how he went.  I have been overseas the last 6-7 weeks and out of touch with Patient.

My sincere condolences.

 

Hi, thank you for your kind message.  I know you had been keeping in touch with Glyn over a  long period of time.  I did manage to get him to go to the Urgent Care and found a fantastic Doctor there who fastracked everything and after an endoscopy it was found that Glyn had a tumour on his gullet, almost 2ins.  The consultation we dreaded came on 21st March to say that it was terminal, with liver mets nd lymph node involved too and a week later on my birthday we sat with the oncologist discussing pallitive chemotherapy.   Eight weeks later on the 28th May 2017 Glyn passed away.   He wanted to be at home and I nursed him at home to the end.     That was indeed difficult and a challenge but I did it and kept my promise to him. Blackpool Victoria Hospital, Macmillan Nurses and Trinity Hospice were all outstanding.  Haemochromatosis is a disease that ideally needs to be diagnosed early in life but unfortunately Glyn wasn't diagnosed until he was 66yrs of age and the damage had been done by then.    I hope that you are keeping well and send you my best regards, Elizabeth

I am so sorry to hear that Glyn has passed away. Sending you my very best regards :-(

My husband so far has only had an upper abdomen ultrasound - all came back normal by viewing xrays.  He just had a cyst on one of his kidneys - which he said was "nothing".  His liver and pancreas appeared to be of normal size. 

It is criminal that diagnosis of haemochromatosis is delayed so long.  It is not a new disorder.  My gp ignored my symptoms for 9 years after having a hysterectomy and obviously I started loading iron straight away.  Google was not around back then, so I could not even search for myself.  Then my hips broke up because my blood was so thick with iron that it could not get into the fine capilliaries that feed the bone, so the bones died.

Looking after Glyn those last weeks would indeed have been a very hard challenge for you - so sad but still requiring all your strength.  My husband had Hodgkins Lymphoma with chemo and radium treatments so I can emphasise with you.  But my husband's cancer was survivable, and he did.

I am now waiting on news if my cancerous tumour from 5 years ago has metastasized to bone cancer - we with haemochromatosis are prone to cancer.  So much damage was done because my dr was in denial about my haemochromatosis.  I want to thump her but she is no longer in my town.  And honestly, she was the best female dr around!  But I am a lot more assertive with drs now.

Ever since, I am now involved in creating awareness of haemochromatosis, with drs when I can, talking to people running a support group, and being involved in campaigns locally, and attending conferences to gain as much information as possible about it.

The Patient haemochromatosis community will miss Glyn.

 

Hello and thank you for sharing your experiences with me.    I hope and pray for you that your tumour from 5 years ago has not metastasized   I too get very angry with Doctors who ignore symptoms such as arthritis, insomnia, impotence, constant clearing of the throat, and long gone are the days when we sat there in front of Doctors and listened to every word in the hope that they know what they are talking about.   Now, it is important to have an input into the consultation with the Doctor because illnesses like haemochromatosis have only one treatment, blood letting GP's just don't know enough about this disease.  I remember when Glyn went for his results to the surgery and the doctor asked him if he was an alcohoic, he said no, I'm not, and It was then he told him his ferritin level was way too high and this would need further investigation.   And then of course, all the problems surfaced.   The presdent of the regional haemochromatosis society telephoned me to invite glyn and I to the AGM and Lunch in early May and I had to explin what was happening.   He was so sorry.   He said he would be speaking at the Meeting and in light of Glyn's experience, he would emphasise the importance of early diagnosis. Haemochromtosis can indeed be a silent killer.

Take care and best regards to you both, Elizabeth

Thank you for your kind message.     It has been a difficult time but somehow you manage to get the strength from somewhere and cope.    I shall always have happy memories, which are priceless.   Kind regards Elizabeth