Low ferritin

[M1ndMyB100d]

I was diagnosed with PV in November 2020. Initially, I had a few phlebotomies to reduce my hematocrit but thankfully I've passed my last three blood tests and haven't had one since January 2023. I take aspirin, a spoonful of cod liver oil and half a tin of grapefruit every day to keep my haematocrit within range. My blood profile is good and my circulating iron levels are within range but my ferritin level is 5-6 ng/ml. Does anyone have an opinion on the effect of low ferratin on tiredness, motivation or mood? I suspect I have lost some of my drive since I was diagnosed.

[hunter5582]

Iron deficiency without anemia can ha e adverse effects. These can include fatigue, memory/concentration impairment, cold intolerance, alopecia and more. The iron deficiency symptoms I experienced were worse than the PV symptoms. That lead to my decision to treat with Pegasys. Later switched to Besremi. My quality of life improved significantly. I feel better now than I did 10 years ago.

[M1ndMyB100d in reply to hunter5582]

Thank you for sharing your experience. I will look up those treatments and ask my consultant about them. Presently I just take aspirin and would like to keep it at that for as long as possible though the improvemets you describe sound tempting.

[Bariton]

With PV, your body produces to much hemoglobine and red blood cells. The objective is to reduce that and bring it to normal levels. The hemoglobine proteïn is built around an iron atom. When there is less iron, you will produce less hemoglobine. My ferritin was below the absolute minimum during more than 25 years. ButI was able to avoid Hydrea. I had a pretty hectic job, and twice a week I ran Between 12 and 15 km. I heard some of my fellow patients complain about the low iron levels, so yes it can be a problem. Would you try to do some sports? Just start walking or cycling several times a week. Do not exagerate and gradually build up a condition. With a good physical condition, I was able to better cope with the disadvantages of my PV.

[M1ndMyB100d in reply to Bariton]

Your experience is really interesting and relevant to me. I have a very busy, absorbing job that I love, am very active and reasonably fit for my age. I find that if I am interested in something I can keep going but if I think about myself I realise that I am tireder than I care to admit. In Winter I walk (a little), swim (once per week) and cycle (~15-20k ~three times a week). In June I did a couple of cycling sportives (>100k) but haven't been doing as many short cycles or any swims and my fitness is down hugely. I suspect you are correct that exercise is key to feeling well. Many thanks for your insight- it's back to the pool and bike for me....

[Ebot]

Hi there.

Yes, low Ferritin levels can certainly mimic all the symptoms you find with other low iron markers (even if those are normal).

I’ve experienced both together (so completely floored!). However, my daughter’s Ferritin levels were just outside of normal when she was about 7 / 8 and the effects were remarkable. Hair falling out, found asleep on the classroom sofa during breaks - and this was a super active, athletic kid.

So yes, it’s definitely a thing! It took quite some months on iron supplements to right itself and we had a few relapses over the years.

However, iron supplements are tricky if you have PV so talk over with your Haem before taking anything. It’s also worth noting that the symptoms you describe can be part of the MPN ‘package’ even if all bloods are normal. So again, chat with your doc or CNS. Wishing you all the best.

[M1ndMyB100d in reply to Ebot]

Thank you for your comments. I think I will bring this up with my haematologist, I know I am not supposed to take oral iron but there might be merit in getting my ferratin to from 6 ng/ml to 11 ng/ml which is the lower limit.

[mark382]

Yes, very fatigued and concentration levels low when ferritin was low. Mine was between 3 and 4 for years. The person I deal with in haematology discussed it with the consultant who said they didn't know hiw I was functioning. They won't give me iron tablets even though I was anaemic for 18 months. Readon being last time I had them my hematocrit rocketed and apparently put me at risk of a stroke or heart attack. They suggested I take Spatone - iron rich water with apple juice about 3 times a week. Leaving a day between doses. It raised my ferritin to 8, without a big jump in haematrocrit.

[LIGEBA]

I'm curious about the "half a tin of grapefruit". Is this canned grapefruit? Did your dr. recommend grapefruit and cod liver oil to keep your HCT low? I have read omega-3 helps with HCT but did not know about the grapefruit.

[M1ndMyB100d in reply to LIGEBA]

I read (one small study) that naringin, those little white bitter tasting dots that you see in tinned grapefruit, can help to lower your hematocrit so I thought I'd see how it goes for me. I did mention it to my haematologist but she thinks that the aspirin is doing most of the work in keeping my hematocrit low. I've gotten to like the grapefruit so I'll keep going with it. Grapefruit interferes with some medication so probably not a good idea for everyone.