Understanding High Iron: Hi everyone. For... - Leukaemia CARE

Leukaemia CARE

1,031 members632 posts

Understanding High Iron

UhOhCKD profile image

Hi everyone. For those diagnosed with Leukemia, can you tell me what your Iron and Ferritin levels are? These are typically elevated in Leukemia patients. I have a follow-up and consultation with my doctor coming in a few weeks but am gathering a bit of information (aside from google searches) on my own. Thank you!

9 Replies
2003UK profile image
2003UKChampion

Hi Ya, I was diagnosed 17 yrs ago with CLL and I have never been tested, as far as I can see, for my Iron and Ferritin levels. So I am sorry I cannot help you, I hope others can be of more help. What I would say perhaps is to write a list of all your fears, thoughts, questions etc. you want to ask before your appointment and make sure you ask them all and understand and are happy with the answers you get. Some times I feel medical people speak another language!! Good luck and stay safe.

Hi UhOh!

I am inclined to ask why you are asking the question, albeit an important question.

The context of your inquiry would determine the response.

Do you have a blood disease diagnosis?

You may check my Bio - essentially CLL / FCR then diagnosed with Haemochromatosis purely by chance - inherited, and unrelated to my CLL.

Iron is a strange one - vital for building blood - red blood cells - BUT in excess amounts can damage any tissue in the body by evoking an inflammatory reaction - essentially the immune system fights high iron levels in tissue causing scarring.

The gut normally will self limit and control how much iron is absorbed and above a certain level will stop absorbing until more is needed. I lack that gene!

Vit B12 and Folate also essential for building red blood cells - do not have a toxic effect at high levels,

Iron is bound to a blood protein - its level can further affect the iron level - normally measured as Ferritin. It is an acute phase protein and may be artificially raised in say infection and other inflammatory conditions.

So back to my question - what is causing you to ask?

IF Iron / Ferritin is ever measured to be raised above normal it MUST be further investigated with "iron studies".

The treatment for high iron - like mine - is venesection. Blood is drawn, the marrow then replaces it using up excess iron, and so keeps the levels normal. Happy days.

Organs need to be assessed for iron damage to of course.

One further point - venesection in blood cancers for high iron does place pressure on the bone marrow. I had just completed 6 cycles of chemotherapy when I was diagnosed, and my marrow failed with the first 4 venesections (4 pints), and I became anaemic. Fortunately my marrow rallied and has been fine since.

This is bread and butter stuff for a Haematologist.

Does this help?

Best wishes

Jig (UK)

UhOhCKD profile image
UhOhCKD in reply to JigFettler

Hi JigFettler, thanks for your thoughtful response. I'm asking because right now I am experiencing several problems with my body including kidney and liver and a possible blood disorder. I am trying to speak with people who are experiencing these things to get an idea as to what organ/issue is causing what symptom. The doctors do not always have all these answers and while I'm consulting them, as well as doing my own searches online, asking others is part of my due diligence in taking some responsibility for my own health.

May I ask what symptoms you specifically experienced related to your CLL?

JigFettler profile image
JigFettler in reply to UhOhCKD

My CLL. I found an enlarged Lymph Node where one would not normal expect one.Ultrasound... found load more.

Blood test, node biopsy. Diagnosis.

Unless you are medically qualified beware of Google and self diagnosis.

It does not work well empirically.

Are you in the UK.

If you have undifferentiated symptoms, you don't specify, it's complex to sort out. Believe me I know.

One then creates ones own world of medical and symptom angst, when conveyed to a Dr further complicates. Especially if that Dr is inexperienced in medical uncertainty.

My advice is to talk to a Medical Generalist. In UK that's a GP or a Dr with Elderly Medical Care training.

Not all Drs know everything.

Jig

UhOhCKD profile image
UhOhCKD in reply to JigFettler

Thanks again, your wise responses are exactly why I ask questions in groups like these while I wait to see my doctor (I am currently working with two specialists). One more question for you; did they find your white blood cells were elevated? They recently found I have elevated Iron and are trying to find out why, for now they have suggested I stop eating foods with high Iron in it (I eat loads of spinach) but I'm not convinced. I may request they order me a WBC test as I have heard Iron can be elevated in some pathological diseases.

JigFettler profile image
JigFettler in reply to UhOhCKD

My white cells were normal at CLL diagnosis. Biopsy of LNode made the Diag.

Not sure I would be looking for a blood cancer as a cause for raised iron!

Not sure spinach would ever be a cause! I have a feeling it's iron while rich is not well absorbed.

How high is your iron level? (Ferritin)

You will need iron studies, routine for a general doc.

Only then can you tell if its really raised. Until then I would not be worrying about blood cancer directly!

Are you in the UK?

Jig

UhOhCKD profile image
UhOhCKD in reply to JigFettler

Thanks again and I am not in the UK

Hi. From what I understand, high iron levels in blood cancer patients are as a result of repeated transfusions. They are not a symptom of the disease itself.

The other cause of high levels would be genetic Haemochromatosis.

My ferritin and iron levels have been lower, so I have been put on folic acid. Good luck.

You may also like...