ferritin level too high

Posted , 4 users are following.

diagnosed with haemochromatosis in april 2015 and diabetes mellitus and following further tests I had a 1.8cm tumour on my liver, caused by the haemo.   I had a liver ablation operation to destroy the tumour.   My worry is that the ferritin level started at 5265 (the doctor nearly fell off his chair) and started blood donation immediately and it seemed to be reducing, it reached 4500 and suddenly went up to 7001 but in the last month it has reduced again to 4265 and last week went up again to almost 4600.    No one seems to understand why this is.    Does anyone have any idea why the ferritin level should fluctuate so much?  

1 like, 10 replies

10 Replies

  • Posted

    R u on a lot of drugs as they can get your ferritin levels up 
    • Posted

      Hi, the medication I am on is metformin for diabetes, four a day, but this doesn't seem to be reducing my blood sugar level, as it is currently 14.5 and of ideal would be between 4 - 7    Blood donations fortnightly and I thought that having started them the ferritin level would slowly, but gradually, come down but it has been a case of up and down, as high as 7001 and currently 4600      Any advice on haemochromatosis would be most welcome
    • Posted

      Only metformin for diabetes, four a day.     I watch my diet but still the ferritin level fluctuates.   I attended a meeting of the Haemochromatosis socieity a few weeks ago and had the opportunity to ask a question to a Consultant Doctor at the meeting about why the ferritin levels go up and down albeit I am careful what I eat, and he simply didn't know why.    Haemochromatosis is a disease that little seems to be known about it, other an the iron in your body is too high and the only treatment is blood donation.   I was shocked to speak to some sufferers who, after years of blood donations, are still having to give blood.    The Consultant Doctor said, there is no cure and it is more common that people think.     The other side affects are growing too, severe arthritis, memory loss, and so on.    My wife whilst not a sufferer herself, is suffering on the sidelines and this I found at the meeting to be the case in many patients.
  • Posted

    Are you a smoker,Do you drink much,are you eating a lot of red meat,Have you had a sats test?
    • Posted

      never been a smoker but as a tradesmen I liked a few pints after work but retired 7 years ago and still enjoyed a pint or two.  But since diagnosis, I don't drink but do understand that probably some of the damage has been done prior to diagnosis.     My doctor asked me if I was a drinker.   Yes, but not a heavy drinker.    I have cut out red meat, shellfish, etc. but I am still having fluctuating levels of ferritin and my blood sugar level is too high.   Diabetes diagnosed april 2015 as a result of haemochromatosis.      What exactly are sats?     
    • Posted

      Saturation test will tell you how much of your iron intake will be absorb by ur body.Some people are heavy loaders so load less.Im a heavy loader at 99% sats which give me a iron level of 23000, 
  • Posted

    How and why were you diagnosed?

    My Doc says diet is key but can't say that I can agree. I have mainly cut out red meat cereals and other high iron items but still have seen fluctuAtions in my iron levels. I'm still new at this so I may not be the best to advise. I'm trying to determine if skipping a week might help. How often do you have venesections?

    • Posted

      Hi  I moved house and registered with a new doctor here in Blackpool and he is thorough to say the least .    Countless blood tests and when the results came back he sent me for a liver biopsy and also told me I was diabetic and started me on metformin straight away.   He referred me to a consultant at Blackpool Victoria who was amazing, wasted no time in organising further tests and procedures to determine the root cause of my ailments and it was discovered that I have haemochromatosis and again started blood donations straight away.  Blood donation every fortnight.   He wanted me to have one the day of the appointment.   Results from more tests showed I had a 1.8cm tumour on the liver and he immediately referred me to Leeds University Hospital, where I have to say I had the best treatment ever. A liver ablation was carried out to destroy the tumour and now I am working on reducing the ferritin levels but this is going up and down all the time.   Blood sugar levels also too high.    I watch my diet and avoid iron, sugar, red meats, shellfish, you name it.    But, still can't bring the levels down.
    • Posted

      Hi, I will ask about sats test because it would be helpful to know how much intake of iron I have.     The Consultant did say that the haemocrhomatosis caused the tumour in my liver as the overload of iron in the body tends to find an organ to store itself and in my case it chose the liver but, having said that, it may well store itself in other organs too.

      It would appear to be a silent disease but if caught early enough, then this would prevent other ailments such as diabetes mellitus, and of course tumours.    I thought 7001 was high but 23000, well that is quite something and I only hope and pray that this iron overload reduces to an acceptable level but wonder, being as it is an hereditary disease, and the fact that I have been told there is no cure, I will just have to live with it.

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.