Hello
Can anyone please tell me if they have had high ferritin levels and whether it is connected to CLL? I am on the W and W programme since diagnosis in 2011. Ferritin levels 170.
I believe this is stored iron. Dr Google has left me somewhat alarmed though my own doctor doesn't seem bothered.
I have not read about a linkage between CLL and high ferritin before in my research, but that doesn't mean there isn't one. I do know that some of us with CLL have ended up in a very high ferritin position due to repeated blood transfusions we have had, and those transfusions were due to the CLL making us anemic.
In my own case, my ferritin went way up for the few months I was transfusion-dependent before beginning treatment in September. But once I no longer needed transfusions, my ferritin returned to normal range. (It was 97 on my last test.)
For 2 years prior to receiving treatment, I had very low ferritin no matter what quantity of iron supplementation I took. I was taking 900 mg a day of ferrous fumerate for many months, and still could not raise my ferritin above the 30s. My hematologist told me my inability to absorb iron was due to my CLL and the inflammatory effect it was having on my gut, reducing nutritional absorption. So in my case, my untreated CLL caused LOW ferritin, which briefly became high ferritin for the few months I required blood transfusions.
You say your ferritin level is 170. At my lab, that is comfortably within the normal range of 15-247 ug/L. Iron overload does not become a concern until it is persistently higher than 600.
kim
I have high B12 (1500).I (normal is 400-600).Hematologist is not reaction.?
are you supplementing with B12? It's hard to see how B12 can be high in anybody unless it is from supplements.
No! Never.Only D3.
well that's very strange. i can't think of how one could develop high B12 from diet alone, since we get such tiny amounts dietarily.
When initially tested my B12 was low, but my other B levels were high. When I started supplementing my B12 it shot up. My endocrinologist told me that that was common and the dose has been reduced, more than once, but the count is still high. She is not concerned.
Тhanks!
Kim. It is very interesting in my case treatment (Imbruvica) has caused low ferritin. During W&W I had no issues with low ferritin. Now my potassium levels are constantly low and supplements are helping very little.
That's interesting. I'm sorry to hear that about the low ferritin and low potassium. I have been on Imbruvica 3.5 months. I am curious to see where my ferritin bottoms out. It is still falling I think from when it went so high from the transfusions. I am hoping it doesn't end up low again. But who knows?
Hi Kim
Last year I too was below the accepted level. I am not on any treatment but have been taking turmeric tablets for a while. Maybe they have helped - but a little too much!
Hi Ingatrams,
Your ferritin is only just above the upper limit of normal.
As well as being a carrier protein for iron, ferritin is also an inflammatory marker and can rise and fall in response to infection, inflammation (such as arthritis), liver prolems and other things.
The best way to estimate your iron status is to measure serum iron, iron binding capacity and transferrin levels.
Hi, I have hemochromatosis which is high iron in the blood.
Hi Janice
That's the condition I had read up on in Google. How does that affect you physically? I have not been feeling too good lately
Hi Jm954
Thanks for your reply. 150 is the top level here in the UK but my other serum levels are all Okay. ! Might ask for liver blood test as have not been feeling too well lately?
If you've not been feeling too well then that needs investigating and a liver screen could form part of the investigations. It's all like a jigsaw puzzle, one piece of information on it's own, like the ferritin level, isn't much help in trying to see the full picture and diagnosis.
A simple genetic test for the HFE (haemochromatosis) gene mutation is positive in over 95% of those affected by inherited haemochromatosis. Testing is using a blood sample from which DNA is extracted and analysed.
You need a doctor to do some investigations, guided by your clinical history and symptoms, then to review all the information together and make a diagnosis or reassure you that you're all fine.
Hi Inga, I was diagnosed when I was 38, about 21 years ago. it is more prevalent in Irish descent. I had to have a pint of blood taken out evey month for a while and then every four months or every year. since I was diagnosed with the CLL I haven't had a phlebotomy. I don't know if it effected me. If you have the blood removed you may be fine. It only damages organs when you don't do anything. There is a gene test that they can diagnoses it with. It is just a nuisance for me at this point. You probably just have a fluke in your blood test from the CLL but either way it is not that difficult to deal with. Good luck. PS I have read other people on this site who have both cll and Hemochromtosis but not sure if it s correlated.
Thanks for the info. Given up telling dr not feeling good. Looks don't pity me. Always being told i look well! Never go anymore but may try again!
Wow that was young. I am 73 so am very lucky to have got to this age without too much breaking down. I too am of Irish descent.
Good luck to you
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