Iron Supplements

[Buttons42]

Good Day Everyone

Does taking iron supplements increase red blood cells in CLL patients ?

Thanks

Ken

[AussieNeil Partner Administrator]

We may need iron supplements, just as people without CLL sometimes do, particularly if we don't eat red meat. With the median age of diagnosis for CLL being around 70, the need for menstruating women to replace lost iron is obviously not usually a requirement.

However, when we have CLL, the more usual reasons for developing anaemia (low haemoglobin and red blood cell counts), are due to the CLL infiltrating our bone marrow thereby reducing its production capacity and our CLL enlarged spleens filtering out our red blood cells before they need replacing, increasing the demand on our bone marrow production. So if our anaemia results from these CLL induced causes, boosting our iron isn't going to help.

As should be the case before we start taking any supplements, there needs to be a valid medical reason for doing so. We should ask our doctor (GP or PCP) to provide us with a (fasting) folate/B12/iron studies blood test request. That will provide us with an analysis of whether we lack these common nutritional causes of anaemia. Our anaemia might be due to insufficient foliate (leafy green vegetables are a good source), B12 (dairy is a good source) or iron (red meat). We might have enough B12 in our diet but not absorb it well because we lack sufficient intrinsic factor (a glycoprotein normally present in our small intestine) and may need B12 injections. Likewise we might have enough iron in our diet, even from non red meat sources, but drink caffeinated-drinks (usually tea, coffee or cola), so that the caffeine, tannins, polyphenols bind to the iron, significantly reducing absorption.

Finally, some of us can have haemochromatosis "a genetic or acquired disorder in which iron-binding protein accumulates in various tissues, typically leading to liver damage, diabetes mellitus, and bronze discoloration of the skin". Taking an iron supplement in this case is exactly what you don't want to do. Haemochromatosis is arguably more likely to be a potential issue when we have CLL, because we are more likely to need red blood cell transfusions to support us during and sometimes for quite a while after treatment. When we have haemochromatosis, we can't excrete excess iron, so the resulting iron build up from the donated blood, can lead to organ damage if not managed.

So in summary, there are some very good reasons to first find out if we actually need additional iron, or other means by which we might be able to reduce our anaemia and see if that can be addressed by dietary changes without buying any supplements. If we do need to take an iron supplement, be aware that they commonly can cause digestive upsets. That discussion is probably worthy of a separate post.

Neil

[Buttons42 in reply to AussieNeil]

Thank you for the information

[Panz in reply to AussieNeil]

Neil, would you address the hemochromatosis more fully.

I am awaiting the results of testing for this hemochromatosis. My Ferritin has reached 800. I have been a vegetarian and have not eaten any thing with eyes I. 30+ years. They have pulled me from my prescription iron capsules and I have had 3 iron infusions.

I am currently working with a nutritionalist and I am no longer using cast iron cookware. I drink coffee or green tea with each meal as I was instructed to do as will as I take a Tums and a Vit. D3 to help block the iron. This all seems to be slowing the increase in Ferritin but I fear my percentage of iron saturation is dropping and I will need more iron infusions. We are now discussing blood letting.

I am searching for ideas.

I have had CLL for 34+ years and am currently on Calquence as my third line treatment and I receive IVIG every 4 weeks and am doing super great….just this elevated Ferritin level and I do nor drink alcohol of any kind but am very concerned about fatty liver issues as a result of the Ferritin level.

Thanks so very much for being here for all of us. All the very best to you!

Panz🙂👍💕🙏☘️🌻🌴☔️

[AussieNeil Partner Administrator in reply to Panz]

Sorry, but we have others with actual experience of hemochromatosis that are better able to answer this than me.

[HopeME in reply to Panz]

I have one of the genes for hemochromatosis which has resulted in moderately elevated iron levels for a number of years. Individuals with two parents with the disease have a bigger issue. Before blood transfusions my iron levels were high normal. After they were high slightly above normal. I think I had 2-3 blood transfusions with my first treatment (2019) and 2 transfusions with my second treatment (2023). Between treatments i had a series of therapeutic phlebotomies. Perhaps five or six. I have also been severely anemic twice. Once before my first treatment and once during my second treatment. Hence the need for blood transfusions. My CLL specialist says it is a balancing act as CLL and hemochromatosis can work against one another. I also see a hematologist specifically for hemochromatosis and he said it is almost impossible to control hemochromatosis with diet. In fact, he recommends against trying since avoiding certain foods in an effort to lower ferritin can do more harm than good. My recommendation is to get a competent CLL specialist and a hematologist who specializes in hemochromatosis and keep an eye of your ferritin level. Both ends of the spectrum can be managed so please don’t let it worry you too much.

Best,

Mark

[Buttons42 in reply to HopeME]

Thank You

[PurplePotato69 in reply to AussieNeil]

thank you

[Louis33]

After 18 transfusions June and July 22 which I believe saved my life, I am now on one tablet a day of acalabrutinib. But the negative side effect of the transfusions is that my ferritine is very high, 2400. Consequently, I have had my first Venesection last week. My consultant wants the number to go down to 300. Next one first week of September. Always hope!!!! You will be alright!!

[Buttons42 in reply to Louis33]

Thank you, and best wishes

[JigFettler Volunteer]

Short answer, only if you have iron deficiency.

Longer answer, it's more complicated, see AussieNeil reply above. Good summary.

Jig

[Buttons42 in reply to JigFettler]

Thank you