CLL and low serum ferritin: Hi, Recent results... - CLL Support

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CLL and low serum ferritin

SAT_poet profile image
11 Replies

Hi, Recent results from a blood test show that I have low serum ferritin (10ug/L), but my haemoglobin levels are normal (146g/L). I believe this is referred to as iron deficiency without anemia.

I was diagnosed with CLL 2 1/2 years ago, but the consultant believes I've probably had it for 5-6. I'm on W/W as my WBC & lymphocyte counts are above normal but still low.

Although my GP (and not the consultant) had requested the blood test for other reasons, is there any connection between CLL and iron deficiency?

Best wishes,

C

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SAT_poet
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11 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi SAT_poet,

I have had a history of low iron and low ferritin, with resulting fatigue. I believe that ferritin changes very slowly but I am not familiar with the connections to anemia & haemoglobin.

>

Here is a link to 87 past discussions on ferritin: healthunlocked.com/cllsuppo...

>

Len

SAT_poet profile image
SAT_poet in reply tolankisterguy

Thanks very much for these! They've been very helpful.

Suzie42 profile image
Suzie42

Yes, I believe so

Thursday45 profile image
Thursday45

My ferritin level was borderline when I was first diagnosed I had Covid six weeks previously and believe now that I was suffering from Long Covid as I had several unexplained symptoms. My ferritin levels remained low for the next year but by making changes to my diet with the help of a nutritionalist I have now doubled it. It is now in the normal range.

SAT_poet profile image
SAT_poet in reply toThursday45

That's really good to hear! I've never had COVID--or I've been asymptomatic. And my wife and youngest child have kept us on a very good plant-based diet for the past few years. Well, they're plant-based/vegan and I have the occasional portion of meat added in. 😜

egg001 profile image
egg001

Hi SAT_poet,

My story is similar to yours. Had low ferritin but the other numbers were not that bad. I had serious heart palpitations which caused my cardiologist to refer me to the hematologist. The hematologist then found CLL/SLL.

I probably had CLL for several years before diagnosis. I have been taking iron pills and the ferritin numbers have improved, as did my palpitations. At first I was told to take an iron pill every other day, and now I am on a once a week regiment. Seems to have helped.

Bluesinthenight profile image
Bluesinthenight

Iron deficiency is not exclusively a CLL issue, it is a common problem in general populations. Gastrointestinal loss of blood is the most common concern to be ruled out. Screening colonoscopy picks up polyps, early colon cancers, and other problems when treatment is most effective. Upper endoscopy is done to find problems causing blood loss from stomach and upper small intestine. Have you undergone recent endoscopies to look for a bleeding source?

SAT_poet profile image
SAT_poet in reply toBluesinthenight

Yes, I've been reading quite a bit about iron deficiency without anemia and its various causes, including hypothyroidism. A colonoscopy is next on the cards as some other tests have also been done. However, given my numbers, I was just curious whether CLL could be an influencing factor.

PoisonDwarf profile image
PoisonDwarf

Hi SAT_poet,

I haven't found any evidence of causal links between iron deficiency w/o anemia and CLL. I suspect that there could well be a correlation between the immune dysregulation caused by CLL and iron absorption, if not causation.

Treatment can be controversial between differing medical specialities. That I do know because I am currently stuck in the middle between my hematologist and gastroenterologist. I have a separate post for biopsy results though.

The first link is to a 2021 Australian review of Non-anaemic iron deficiency. It's a simply written article:

pmc.ncbi.nlm.nih.gov/articl...

If you want to do a little deeper dive into the mechanics this paper is also from 2021:

pmc.ncbi.nlm.nih.gov/articl...

The conclusions amount to the same. More research is needed, along with a clinical consensus and clear guidelines. I found the first few key takeaways relevant:

Within the body, iron has roles other than haemoglobin synthesis.

Iron deficiency (ID) and anaemia are not synonymous; patients with ID can present with symptoms without having anaemia. Therefore iron deficiency without anaemia (IDWA) must be recognised as a clinical diagnosis on its own.

Haemoglobin ranges are based on averages and should not be used as strict cut-offs. Haemoglobin levels in the low normal range may not be normal for some people as they may be accustomed to higher levels.

Im am not a doctor so I would recommend a conversation with your GP to establish the root cause of your ferritin, if you haven't already done so.

SAT_poet profile image
SAT_poet in reply toPoisonDwarf

Thanks for the info and the articles--I'll check them out. I have a follow-up with my GP to discuss the ID and other recent test results. With so many possible contributing factors, it will be good to find out what's causing the ID.

PoisonDwarf profile image
PoisonDwarf in reply toSAT_poet

Best of luck finding answers! I don't know what or if you're having any gastrointestinal issues or major fatigue but it's a drawn out process here in Ontario, Canada.

My doc's are following latest protocol. First line 90 days oral supplement, ferrous fumarate 300mg. My ferritin levels halved, HGB stayed the same.

Next step was gastroscopy & colonoscopy to rule out internal bleeding or establish a cause for malabsorption & a different supplement. The gastroenterologist described the scopes as abnormally normal.

Now I am scheduled for CT Enterograpgy with contrast. Biopsy did show serious & active H. Pylori gastritis, but they still need to rule out any bleeding in the small intestine.

I was hoping for a quick fix with IV iron infusion for my fatigue. That's not happening!

Please keep us updated.

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