Ferritin Level

[mark382]

Hi All, hope you are all keeping safe. Had my first of 2 venesections yesterday. Must admit I never take much notice of my blood levels and only really get my Packed Cell Volume. Anyway yesterday the nurse doing my venesection asked me what my results were, as usual I had no idea other than PCV. She checked letter from haematoligist and haemoglobin in range but Ferritin level is apparently 4. Does anyone with PV know what their Ferritin level is for comparison. Apparently normal range is 15 to 250 for men and slightly lower in women. I'm not concerned about level as haematoligist knows what she is doing. Asking more out of curiosity.

[EleanorPV]

For the average PV patient, the lower your ferritin the less venesections you will need. My ferritin was at 3 for 2 years. I'm now on medication which has stopped me requiring venesections. My ferritin has returned to within the 'normal' range

[harleydavidson]

Hi Mark. Mine is always between 6 - 8. It is normal for us to have low ferritin whilst having venesections but it does add considerably to the fatigue. Try to eat iron rich foods, lots of vitamin C and plenty of water. Mel x

[hunter5582]

Ferritin is one of several measure of iron in your body. The range of tests includes:

•Serum iron. This test measures the amount of iron in your blood.

•Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.

•Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.

•Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.

•Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.

webmd.com/a-to-z-guides/iro...

Iron-deficiency is the goal of PV treatment. Mine rides right around 7. It is what the venesections do to help us. Iron-deficiency is not the same thing as anemia. Anemia is a deficiency in red blood cells that reduces the ability of blood to transport oxygen to the body. With PV, our body's do not respond normally to iron. The KISS version is that due to the PV, our body's suck up all the available iron and use it to make red blood cells - not much left to store as ferritin. If you take in enough iron for your body to store it - it increases erythrocytosis and you need more venesections or increased medications to reduce RBCs.

The key RBC to track for treatment effectiveness is HCT<45%. Alternatively, some docs will track Red Cell Mass. The goal is to control erythrocytosis to minimize risk.

Hope that helps.

[Alex9621 in reply to hunter5582]

Thanks for that information. So every time you go for HCT should they check you Iron and Ferritin levels? I've had PV around 3 1/2 years now and found they only checked mainly initially being diagnosed and again when I went to an MPN specialist in 11-19.

Thanks again!

[hunter5582 in reply to Alex9621]

The MPN specialist does not bother checking iron very often. He knows I am going to be iron deficient since that is a goal in treatment. He does monitor the red blood cell levels, with HCT as a good shorthand number. They do want me to be iron deficient to control the erythrocytosis, but not so iron deficient taht I become symptomatically anemic. Ideal HCT range = 40 - 45%. We do not quibble about the lower number as long as it is not too low and I am not symptomatic for anemia. Whether the HCT = 38 or 40 - who cares as long as it is not causing me a problem. The regular hematologist does periodically check iron levels just to keep an eye on the situation. I am not sweating it. Feeling good = being good. One of the things I have learned in the last couple of years is to not sweat trying to sanitize lab numbers. Focus only on the lab numbers that really do matter.

[Alex9621 in reply to hunter5582]

That makes sense as to why they don't check iron levels all the time. That is a good attitude to have not sweating the numbers. I like to know what is going on but I do at times still get a little freaked out if I don't know something or some new symptom pops up. You seem very well versed and a good handle on your journey which is a good thing!!

[mark382 in reply to Alex9621]

I don't think they check my iron level every time. Earlier this year they said my blood was good, but I was very tired. They checked the sample again and said blood cells were small, which is a sign of iron deficiency. Had another blood test and I was short of iron. If I wasn'tsymptomatic they wouldn't have done anything. But because I was symptomatic they put me on 1 iron tablet twice a day for 2 weeks. HCT went from 42% to 44%. At routine appointment 2 months later it was 46%, hence 2 venesections, 3 weeks apart.

[SoledadBarcelona]

Hi

I don't know how the ferritina works, I would like, but I have the same. I am worry about this issue because iron levels wirk in the main functions of the body. I think if it dosen't work properly, our body wont be able to work well.

Thanks

[hunter5582 in reply to SoledadBarcelona]

Ferritin is a measure of how much iron your body has in storage. With PV - your body does not use iron normally. It cranks out too many red blood cells with the iron that is available. Maintaining a certain level of iron deficiency helps to control your erythrocytosis and keeps you safer from thrombosis, hypervisocity and spelnomegaly.

[Bluetop]

I too am PV but I have not had venesections for several years, instead I am treated with hydroxy. My ferratin is currently 10 but has varied over the last 3 years. Once as high as 40, but overall trending down and in the teens and not correlated to variations in the dose of hydroxy. One haematologist said they would have expected the ferratin level to have rebounced after I finished the venesections, another has said it is a result of the hydroxy. It is something I have been pondering! My haemoglobin is within normal levels.

[mark382]

Many thanks to all for getting back to me. Nice to know others have/had low Ferritin levels. I knew they kept my iron low, but I never asked what level. I always assumed my PV was not very bad I only had 3 venesections a year. The last 12 months I've had 3 venesections but 2 at a time, so 6.

My Ferritin at 4 was after taking iron tablets for 2 weeks. I only had them as I was symptomatic. If wasn't symptomatic they wouldn't have done anything. Might ask at next appointment what it was before iron tablets.

Hunter5582 - many thanks for comprehensive reply. I always learn something new and now understand what anaemia is.

Take care all.