EXTREMELY HIGH FERRITIN SUDDENLY

[valeriej43]

My son has been diagnosed as an alcoholic, he has been in rehab and it didnt do him any good, partly because of the awful attitude of the man in charge, too much to go into at the moment, but he has Haemochromatosis, as has his brother [twin] and myself, he has a ferritin level od almost 4000, but it suddeny jumped within a couple of weeks from 2.800 to 3.800, has anyone any idea why this could happen,

His stomach is also bloated and painful, he had loose bowels for a while ,but the Dr gave him something to help with that for now,until he has more blood tests next week

I am very worried, as my daughters friend has Cirrhosis, and this happened to her

I am not sure if this site is English or American as i know the liver readings are read differently

Thanks in advance for any advice

[AyrshireK]

Hello there valerie, this is a British based site (hosted by British Liver Trust but we have members from right around the world. Is your son seeing a liver specialist? - If so I would suggest you try and get an appointment to seek answers regarding your sons current condition. If he has genetic haemochromatosis as well as excessive use of alcohol his liver is possibly beginning to struggle. Both conditions can lead to cirrhosis and associated issues so he needs to be getting treatment for his GH plus completely stopping the booze.

You can read up about Haemochromatosis on the main BLT site at:- britishlivertrust.org.uk/li...

& also about alcohol and the liver at:- britishlivertrust.org.uk/li...

Katie

[valeriej43 in reply to AyrshireK]

So sorry, Katie, i missed your reply earlier,yes he is seeing a specialist, and having venesections, i just cant undertand why he hasnt had a biopsy,i think he has had one scan after which he said his liver was alright, but when that was im not sure

It is the sudden very high spike in his ferritin that is worrying,plus the bloating, as suggested it could be inflammtion, we will have to wait for blood tests to come back, [ which he hasnt even had yet] he couldnt see the nurse until the 18th, which i think is wrong when its so urgent.

They are doing a more indepth blood test this time

[Porphyriamaniac]

Hi Valerie, I'm very sorry to hear of your sons troubles. This is a uk site but we have people from all over the world on here. This is something I've been reading a lot about lately, I'm no expert but I do know that alcohol can cause very high ferritin levels as it increases the absorption of iron from food which is not great if you already absorb too much anyway from having haemo. Also inflammation anywhere in the body can cause it too, with your sons alcoholism it could indicate inflammation to his liver but I'm sure the Drs will be testing for that and checking it out. Also with the gastric symptoms you mention it could indicate some inflammation in his bowel? I think it's just a matter of waiting for the next tests, a nightmare I know. Those ferritin levels are very, very high though, id be pushing the Dr to start venesection straight away if possible. I do hope you get to the bottom of it soon, keep us posted. All the best, Stacie. X

[valeriej43 in reply to Porphyriamaniac]

Thank you Stacie,yes he is already having venesections, and his ferritin suddenly jumped from 2.800 to 3.800 within the 2 weeks after the vs,

The only thing he has taken differently is paracetamol, which i know is toxic especially if you already have liver problems

He is taking folic acid too, which i cant understand why, he has been prescibed it, surely that cant help,

He is on loads of meds, vit B, Thiamine, Clopidogrel, too i think its called,

He has had a few TIAs too,

He is very worried i know, but still wont admit it could be his liver,

I cant understand why he has never had a biopsy,i have had a biopsy, liver scan, colonoscopy etc, and i dont have any problems,and my ferritin is 67, at the last blood test, yet they are always sending for me to have more blood tests

[Porphyriamaniac in reply to valeriej43]

If it's still rising after the venesections it could point to inflammation somewhere then, it may or may not be his liver. The vitamins and folic acid are probably as he's alcohol dependant they are usually malnourished and lacking them and don't absorb them from their diet, my sister's Dr prescribed them too. I can't believe he hasn't had a liver biopsy either, I think they should offer him one in due course now though, I hope he takes them up on it and you get some answers soon. X

[Porphyriamaniac in reply to valeriej43]

Just to add if you're ever looking for advice/info about HH rather than liver, I've found the haemochromatosis forum on patient.info to be a big help, some on there really know their stuff, a lot more than I do. Here is a link patient.info/

X

[valeriej43 in reply to Porphyriamaniac]

Thanks again Stacie, i have been looking on the Haemochromatosis forums for a long time, as its about 25 years since he and his twin were diagnosed, but i dont know what alt and ald mean, we never get any info in writing as to what means what, all i know is what ferritin levels are, and they never seemed to be mentioned as such

The other twin will have the same problem soon im guessing as he is also a heavy drinker, not been diagnosed as an alcoholic as far as i know, but their father is a big drinker too, i dont drink, unless its an odd glass of baileys, at a social event

[Hidden]

A jump in ferritin may be caused by a rise in inflammation in the body. My blood ferritin levels were always a bit above normal when I was taking painkillers. The more painkillers I took the higher my ferritin blood level tended to be above the normal range of 30-300 ug/L. Ferritin is a non specific marker for inflammation so it isn't necessarily the liver that's become more inflamed. To determine if it's the liver a blood test to check liver enzymes would help to ascertain if the spike in ferritin is due to liver inflammation.

[valeriej43]

Thank you Edward; yes i have a feeling its due to the painkillers, but more worried as his stomach is really bloated,he was very thin and has also seemed to put a lot of weight on at the same time

He actually looks very healthy, more than he has done for years, but that could be due to less stress,he has had to give up work, due to the strokes he had and feeling ill, his job was very stressful and heavy work, also long hours staring very early mornings [3am], and not sleepng properly,

Hopefully will get sorted out after blood tests, and more venesections,

His digestion has been poor also loss of appetite

Inflammation does sound like a possibility

I know he is really worried now, as he has cut the drinking right down

[Hdon]

Link to UK Haemochromatosis Society - haemochromatosis.org.uk/

and their Facebook support group - facebook.com/groups/haemoch...

Both excellent sources of information and support

[valeriej43 in reply to Hdon]

My son has been foe a venesection this morning and his ferritin level has dropped back to the previous 2800, he has to have a test now for Osteoporosis,which his twin brother was already diagnosed with a few months ago

[valeriej43]

Thank you, i do look at HH forums, but didnt know there was a facebook one,i will have a look

[valeriej43]

I had a look at the facebook page for Haemochromatosis, and joinerd, but unjoined again, as the comments were coming up on my normal facebook page, which i didnt like,as it was public to everyone

[Hidden]

I'm with you Valerie, hate facebook! I hope you find the answers you need and that your son manages to give up drinking. I would recommend 1 to 1 councelling at home. In Norwich we have the Mathews project. Your GP should be able help you find something like this in your area. I wish you Good luck and good health.

[valeriej43]

Thank you laura009. if the comments had been on another seperate page on facebook i would have stuck with it, but dont want all and sundry to read about our health problems,

I dont paticularly want to join A HH group, i just want to find out about this problem of my sons at the moment

He goes to Horizens but i dont know of any one to one counselling home based, or i think the Dr would have told him,