Serum Ferritin High

Can't help about diabetes, but if I were you I'd definitely ask for a haemochromatosis test. Not many doctors are aware of it, and it's surprising how many people have hemochromatosis, especially if you are of Irish decent (also known as the 'Irish Curse'). The treatment is easy, you just have to give blood weekly, monthly, 6 monthly or yearly, to bring the iron in your blood down, if you don't have any health issues, your blood will go into the national blood bank to help those in need. Haemochromatosis (hemochromatosis in the US) is not dangerous per se, but in later life the high level of iron build up in your blood could clog your liver, heart, etc. You need to research it. See https://www.haemochromatosis.org.uk/

I had very high ferritin levels a while back. DN put it down to a biotin supplement I was taking and all the seeds I was eating. I read somewhere its not uncommon for diabetic though, I felt terrible. I thought I was lacking ferritin but apparently not. I have no idea if its dropped now but I feel better as far as the peeling hands and dropping things go. Will find out at my next hba1c if its really come down to normal levels.

High ferritin can also be caused by inflammation. ESP crp Transferrin and sol transferrin receptor tests can distinguish between genuinely high levels and inflammation. I have permanently low levels and have never heard that diabetes is directly the cause of either.

JenniferM55 said:

Can't help about diabetes, but if I were you I'd definitely ask for a haemochromatosis test. Not many doctors are aware of it, and it's surprising how many people have hemochromatosis, especially if you are of Irish decent (also known as the 'Irish Curse'). The treatment is easy, you just have to give blood weekly, monthly, 6 monthly or yearly, to bring the iron in your blood down, if you don't have any health issues, your blood will go into the national blood bank to help those in need. Haemochromatosis (hemochromatosis in the US) is not dangerous per se, but in later life the high level of iron build up in your blood could clog your liver, heart, etc. You need to research it. See https://www.haemochromatosis.org.uk/

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Weird, I was just talking about this in another thread and here we are.

Not so sure it's not dangerous per se. My sister probably had it 30 years before she finally got diagnosed*....it has explained absolutely LOADS of problems she's had with her health over the years, some of them quite serious. Sad to say we all thought she was a bit of an attention seeker for a long time. Humbling it was when we finally found the reason.

*When she was 13 or 14 she got strange health problems which ended up with a visit to Harley street.... which ended with nothing... mystery. Only 30 odd years later did she recall that our GP had commented once that 'she had enough iron for an entire family in her blood'...


[edit]. Incidentally, she is a diabetic type II (in remission) as a result of the haemochromatosis (or at least that's what they blamed it on). So I *have* heard that.

WaveyDavey123 said:

Weird, I was just talking about this in another thread and here we are.

Not so sure it's not dangerous per se. My sister probably had it 30 years before she finally got diagnosed*....it has explained absolutely LOADS of problems she's had with her health over the years, some of them quite serious. Sad to say we all thought she was a bit of an attention seeker for a long time. Humbling it was when we finally found the reason.

*When she was 13 or 14 she got strange health problems which ended up with a visit to Harley street.... which ended with nothing... mystery. Only 30 odd years later did she recall that our GP had commented once that 'she had enough iron for an entire family in her blood'...


[edit]. Incidentally, she is a diabetic type II (in remission) as a result of the haemochromatosis (or at least that's what they blamed it on). So I *have* heard that.

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My husband has haemochromatosis, he first found out though his younger sister who developed non-alcoholic fatty liver disease and with that diagnosis came the diagnosis that she has hemochromatosis, my husband was then invited to be screened for it. They were unlucky as it appears they had inherited the haemochromatosis gene from both parents, which meant they would most certainly develop problems later in life. My husband has crippling arthritis probably caused by the disease. Basically the iron overload which builds up in the body over the years turns 'rusty' and causes sediment in the blood which causes all sorts of problems later in life.

After Covid, and seeing that the NHS is under pressure, I'm not sure how often screening for hemochromatosis is being performed. There is continuous pressure being put on the NHS for screening for hemochromatosis at birth seeing that 1 in 150 in the UK have the problem. This is where being a regular blood donor can pay dividends to donor's health. Makes me think about the old days when doctors performed blood letting, looks like they were onto something.

It's a misnomer that haemochromatosis is known as the Irish disease as it's also very common in Italy and Scandinaiva so it's a good idea to get screened for it as it can cause quite serious health complications if not looked after.

I have been 'screened' for it. If having had one blood test, probably around 6-7 years ago now means anything of that sort. My GP refused to do the genetic test, which is what I'm supposed to have according to information from my sister's doctors passed on to my brother and I, 'you didn't have high iron' he said. Cheers, what a GP he was (he's retired now).

Good thread to remind me to maybe bring this up when I finally do get to see the nurse for my first diabetes appointment.

I have one gene for haemochromatosis and consequently had a very high ferritin reading which doc put down to too much boozing!

In the end, I just began to give blood regularly and that sorted it after 4 donations! Simples!

I am both a Type 1 diabetic (almost 50 years now) and a Haemochromatosis patient. I can't stress how important it is to have this tested and confirmed as the disorder can give rise to further complications in liver function and other organ issues through iron overload and retention. Like Diabetes, there are actually multiple forms - the 'classic' one which is alluded to above is characterised by a combination of high serum ferritin levels and a high iron saturation value as well; this can also be validated with MRI and, if really required, a liver biopsy (the MRI's can now have iron load evaluation carried out on various organs to see how widely distributed the iron actually is). In my case, I am a 'Type 4' - also known as Ferroportin Disorder - which is unusual in that it is characterized by very high serum ferritin levels but NO increase in iron saturation. it is the 'least worse' variant as the iron is 'locked' in the macrophage cells in the liver (and elsewhere) rather than being widely distributed; the genetic error here is in the release of the rion from these cells in a normal way. Treatment is the same in both cases - venesection (as in giving blood) to reduce blood volume and iron concentration which then is corrected by the body and brings the ferritin levels down (though Type 4 takes a lot longer and it's important to get this diagnosis 'nailed' as the venesection routine needs adjusting to stop you becoming anaemic). All types can (and should) be confirmed by genetic testing and this is available on the NHS (I had to pay a few years ago...).
The biggest hurdle is getting your GP to test for it: I had a long standing issue with inflammatory response (shoulder, neck and back pain; swollen finger joints - all typical of Haemochromatosis) and my GP added the ferritin test as a 'throw away' assay with all the usual inflammation type markers. It was the only positive result we got back! The story was the same with my sons - both had to 'push' for the test as they didn't show any signs ('no signs; no test' is the mantra these days...). One is Type 1 diabetic; the other is Haemochromatosis.... Nothing like a sharing father....
A few more asides: Inflammation does create spikes in ferritin levels - I used to see that during my venesection days where a 'bad' few days of, say, back pain preceding the procedure was reflected in a higher than expected ferritin result for that week. Venesection is straightforward - though if the values take a long time to reduce then the genetic test for ferroportin would be good; I did 18 months of venesection each week and it reduced the levels very, very slowly indeed, but made me very anaemic as well; post diagnosis we went to a once every 3 weeks program which improved blood count and also, curiously, still reduced the ferritin levels. I now maintain myself at a ferritin level around 50; I started with a level of approx. 7600! The accepted 'max' depending on country is around 100 - 200....
I hope this is useful - whether it is related to diabetes is a mute point (there is a variant related to juvenile onset diabetes) but I can't stress enough how important it is to have this confirmed and treated - like Diabetes, it is purely a 'management' process (simpler in fact!) but has such long term value for you and your health. Good luck and take care.

That's brilliant info. Thanks, I will push for it harder now.

Victoria933 said:

Good afternoon is it normal when you have Diabetes to also have high levels of serum ferritin. Thank you victoria

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Type 1 and my ferritin levels are around 25 yep abnormal for anyone but GP and Diabetic clinic at hospital don't see an issue. Have huge insulin resistance and exhaustion. Given up with local health authority after checking NICE guidelines and have an appt with neighbouring health authority.

Victoria933 said:

Good afternoon is it normal when you have Diabetes to also have high levels of serum ferritin. Thank you victoria

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Hello. I suffer from Hemachromatosis which in turn caused me to become diabetic . Excess iron gets stored in the pancreas which then fails and you become diabetic. In America the complaint has a nick name of Bronze diabetes because the skin can get a tanned look and you become diabetic due to the excess Iron in your system. My GP new very little about the illness. Why was your ferritin being checked ? Are they looking for Hemachromatosis? If not ask them to immediately. It can kill if left untreated. I was diagnosed in 1989.
GjM.

CaminoTurtle said:

It's a misnomer that haemochromatosis is known as the Irish disease as it's also very common in Italy and Scandinaiva so it's a good idea to get screened for it as it can cause quite serious health complications if not looked after.

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It's a Northern hemisphere ailment. And the Celtic curse is a name for it because it is very prevalent in people of Celtic origins. Also called Bronze diabetes in the USA. I was diagnosed in 1989 and used to be a contributor to the Haemachromatosis society. Also used to be invited to hospital for trainees to examine me and come up with a diagnosis.

WaveyDavey123 said:

I have been 'screened' for it. If having had one blood test, probably around 6-7 years ago now means anything of that sort. My GP refused to do the genetic test, which is what I'm supposed to have according to information from my sister's doctors passed on to my brother and I, 'you didn't have high iron' he said. Cheers, what a GP he was (he's retired now).

Good thread to remind me to maybe bring this up when I finally do get to see the nurse for my first diabetes appointment.

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You need the genetic test. 1 gene your ok , both genes and it's looking dodgy.

I had serum ferritin of 800 and had the genetic test…negative. It is still way over high when they actually test it but I get no treatment and nobody seems concerned. I gave blood but now I am on insulin I can’t

Chrissy8 said:

I had serum ferritin of 800 and had the genetic test…negative. It is still way over high when they actually test it but I get no treatment and nobody seems concerned. I gave blood but now I am on insulin I can’t

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My ferritin was over 4000 when diagnosed. I then had a bag of blood drained off every Monday for about 12 months . It is now limited to a maximum of 25. Anything above that and I have a bag of blood drained off. I would try ringing the hospital direct and ask to speak to someone in heamatology dept. Or do some research on the net and print it off and take to GP. Try contacting The Heamachromatosis Society and ask their opinion.

Well I am of Irish/Polish decent so perhaps that has something to do with it. I also have the AB blood type not sure if that's something to do with it, either way vampires would love me lol

I’m a diagnosed type 2 diabetic (diagnosed for 2 years) and my ferritin levels have gradually been increasing over the last 6 years. My current ferritin level is 530 and my CRP is 10. I’ve had the Tstat test for Haemochromatosis but was only 34% so it doesn’t look like it’s that, next stop will be the genetic tests which I will have to pay for via Haemochromatosis UK as the GP won’t do them. Other than that, they have no clue what it is and I feel dreadful every day!

It's such a sad predicament, I know for a fact that many doctors have no idea what haemochromatosis is. Even my surgeon son-in-law had no idea. It's such a shame as I really believe if we are screened at birth, those that are positive for it could take avoiding action for severe illness later in life. Imagine how much the NHS could save, let alone the misery and pain that this illness can bring.