Iron supplement & other vitamins on CLL patients?

[Gerardo1959_go]

Can patients of CLL use iron supplements when the hemogram shows lower than normal values of hemoglobin and hematocrit?

[cllady01 Former Volunteer]

Welcome to CLL Support site, Formoso!

Your question is a very good question to ask before you do take any supplement.

Iron (ferritin) levels are not the only reason for low hemoglobin and hematocrit readings. Also, there is a danger in taking iron supplements when you do not need to do so.

It is best to talk with your Dr. about what is happening with your blood levels.

[lankisterguy Volunteer]

In 2010 before my first treatment, I had severe fatigue, so we tested for Iron and D3 and found I was extremely low in both, so supplements helped relieve some of the symptoms. Others in our discussion groups have found Vitamin B 12 to help.

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Don't just add some random amount of these supplements, get your PCP or Hem/Onc to test you for Iron & Ferritin, Vitamin D3 ( Cholecalciferol, 25-hydroxyvitamin D ), Vitamin B 12 since the correct amount to supplement may be drastically different than non CLL people.

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I supplemented with 85 mg iron (325 mg ferrous sulfate) for over 12 months, but my levels barely budged, so my doctor added a "bag" of iron liquid to one of my infusions, and everything went immediately to the high end of normal, so I stopped the oral supplement for several months to avoid a dangerously high iron level. Since that we test Iron and Ferritin twice per year and adjust the oral supplement accordingly.

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Len

[GMa27]

My hematologist said iron supplements do not help CLLers. Always check with your hematologist & PCP.

[Britam]

I have had problems in the past with low hemoglobin because of AIHA (Autoimmune Hemolytic Anemia) where my body’s immune system attacks and destroys red blood cells faster than my bone marrow can make new ones. My CLL specialist at Moffitt Cancer Center recommended taking folic acid supplements to help with my hemoglobin level as it helps make healthy red blood cells. You might want to ask your doctor if folic acid might benefit you.

[LeoPa in reply to Britam]

Best source of folic acid is eggs.

[LeoPa]

Synthetic vitamins don't equal natural ones. Best vitamin source is animal livers.

[cujoe]

formoso - As you can see from the replies already posted, there is no uniformity of "opinions" from patients about iron supplementation. That said, I'll offer the positive results of my own decision to supplement for low red blood count labs.

Three years ago (June 2018) my RBC, HG, & HCT all dropped below low-normal levels. They had been slowly trending down over several years. At that time I was about four years into a transition to what is now a 100% WFPB diet; i.e., no meat or dairy products. Upon doing some research on iron and WFPB diets, I found that the iron from plants (non-heme) is less readily absorbed than is the heme iron form found in animal sources. I decided, therefore, to try supplementing with a modest amount of chelated non-heme iron (18 mg). When I had my next semi-annual labs, all red blood labs had risen back into the normal ranges. I was probably supplementing +/- 5 times a week at first and have continued to the present, now doing so at +/- 3 times a week. If you decide to supplement, taking the iron on an empty stomach and with some Vitamin C will significantly increase absorption.

Taken for what it is (an individualized n=1 personal experiment), my experience does seem to support the effectiveness of modest supplementation to improve serum red blood counts. If eating animal products, the same results could possibly be obtained by increasing one's intake of heme-iron sources. Take note, however, that non-heme iron absorption is limited by the body, whereas non-heme iron is not; i.e., difficult/impossible to get too much iron from plant sources, but easy to do so from animal sources. Regardless of what route you might chose to boost your iron intake, it would seem advisable to go slowly and see what results you get over time.

For reference, I have attached historical graphs of my RBC, HG, & HTC labs. (Note that the three spikes down are labs taken the day after three surgeries that would have resulted in some blood loss and lower red blood labs. Also note the gradual downward tend -ignoring the spikes - that bottomed in 2018 and the continuing upward trend since I started the iron supplementation at that time.)

Here is link that discusses the difference between heme & non-heme iron:

Heme Iron Vs. Nonheme Iron: What’s the Difference? explore.globalhealing.com/h...

And one that discusses the benefit of combining iron with Vit C:

Improve Iron Absorption With Vitamin C

anemiacentral.com/iron-abso...

Good luck and Good Health to you.

Be Safe, Eat Lots of Plants, & Stay Well. Ciao _ K9

RBC - HG- HCT Graphs

[tropicsurvivor]

Thanks very much!

[janvog]

I just had the same problem and it is for now resolved: On IMBRUVICA for CLL since 3 years , my HgB had always remained slightly below normal. Two month ago it dropped to 11. The hematologist prescribed FOLIVANA PLUS CAP . After one month the HgB was normal at 14 and I was told to suspend the FOLIVANE. (Some additional tests had been done). The hematologist told me: "Your iron stores were low and have now been restored. If necessary in the future we repeat the FOLIVANE ". It is not covered by my insurance and costs $ 22 for one month at the pharmacy.