Serum Ferritin

[Roxanne22]

After reading transporter's post re serum ferritin levels, I can't see that I am given these results on my usual 6 weekly visit to the hospital - none of the test figures seem to relate to this, just various blood cells and ratios... is this a reading that I need to request separately? Does it have an abbreviation perhaps, meaning that I can't spot it in the results? Thanks Sarah

[hunter5582]

Testing ferritin is a separate test. It is not on the CBC or CMP. t could be tested alone but is often part of a broader iron panel. Ferritin alone does not tell you what your iron status actually is that requires the full iron panel. You can often infer your iron status by looking at your erythrocyte levels on a CBC (e.g., RBC, HGB MCH, MCHC).

Periodically checking your iron levels is pretty standard care. It does not have to be done often unless there is an indication for a need. It is likely your iron levels have been checked at some point. You would need to check your medical records to be sure.

All the best.

[Roxanne22 in reply to hunter5582]

Yes Hunter I can see that they won't check them routinely as its a given that they will be low, 6 rings a bell from the last time. Thank you for all of your expertise and sharing so generously with us on this forum, I hope that you are doing well, Sarah

[hunter5582 in reply to Roxanne22]

I am doing very well. Thank you for asking. I feel much better now being on Besremi than I did when my iron levels were so low from the venesection-only protocol. I have my energy levels and concentration back. While I cannot prove it, I also think increased iron levels contributes to the decrease in incidents of tachycardia.

All the best

[MWxxxx]

Even though my ferritin is often low and i require iron top ups now and again, I often have to ask for a ferritin check to be carried out when my other bloods are done. They just write "ferritin" under other tests on the blood envelope. I often have to ask for the results in my appointment too and the result rarely appears on letter unless they are requesting iron tablets from my GP.

[Roxanne22 in reply to MWxxxx]

Thank you MWxxxx that is helpful to know. all the best, Sarah

[ainslie]

Haems tend not to focus on Ferritin or other blood levels of iron if PV on venisection only because in most cases it will be very low anyway, for venisections to work in keeping Hct at correct level you have to be depleted of iron, so they are hoping for low ferritin because with PV on venisection only you can’t have normal ferritin. They have enough on the CBC, they are of course looking for your Hct to be under 45 for male and some haems say 42/43 for female., that’s their goal and if that means low ferritin so be it. They see how iron deficient you are by the MCV, when you start venisecting MCV is normal but as you venisect it will drop. So effectively MCV dropping is needed for venisection to be successful, once the MCV is low people usually need less venisecting. The bottom line is you can’t have decent levels of iron if your PV is controlled by venisection only. That’s why generally most haems don’t bother measuring iron levels in blood and they can see the RESULT of the iron deficiency on you CBC mainly in MCV anyway.

[ainslie]

I should have added that my post was not intended to imply any view on the venisections only regime. Some have symptoms from iron deficiency on venisection only but many don’t. Venisection only plus aspirin is still the recommended first line for low risk patients as per European and US guidelines, well it was the last time I looked. I mention this as I see you are I think venisecting. I venisected only for 7 years but started Rux mainly because of iron deficiency symptoms (MCV56) and high WBC and itching.

[Roxanne22 in reply to ainslie]

Thank you that makes complete sense and thank you for taking time to reply - I am in similar position ie 7 years on and so now considering the extra meds now (other than asp + vene) but taking my time to evaluate the situ - esp with the Besremi coming into the frame - thanks again and wishing you well in your journey too x

[johoho]

Hi Roxanne, if my fatigue is particularly bad I ask for a ferritin test. I believe you can only have this tested once every 3 Months. I test for ferritin about once a year, then get prescribed iron, then a couple of months later they take it all away in a venesection. 😆

[ainslie in reply to johoho]

that’s the exactly issue with it, ie what can one do with the low ferritin reading on venisection only, if you add iron pills it’s like putting petrol on a fire ,ie it’s too much, Hct rockets so it’s then venisected back to where one was pre adding iron pills, probably back to the original ferritin reading. One thing I found which helped me on venisection only is to have smaller venisections ie have 125ml per month instead of 450ml or so every 3 months, that was Clair Harrison’s recommendation to me 10 years ago and it helped me personally to have less iron deficiency symptoms and a very even Hct. I was very sensitive to venisection and felt terrible after a 450ml one. Even on the 125ml a month (I always blood tested before any venisection to check I needed it) my ferritin jumped around a bit usually 8-13 and I could not say that how I felt was reflected in the Ferritin reading but it was reflected by how low my MCV was, I was okayish at MCV 59 but once it dipped to 56/57 it was horrible, hence the move for me to meds. I have to say though few will experience such a low as MCV 56, as far as I know it’s a record 😀