I got a call back from GP 5 minutes ago. I asked her if my file had been checked because I had Polycythemia and shouldn't be taking iron. She told me my iron level was in my boots at 7. When I asked what was normal she said anywhere between 41 and 400. She said my haemaglobin was okay and asked when I last had venesection, which was 5 years ago. She told me to take the iron tablets urgently until I could talk to the haematologist (June 2nd) for advice. She told me my iron results had never been high (around 26) but this is unacceptably low.
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jillydabrat
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Just had this exact discussion with the MPN Specialist. The type of Iron level it sounds like the GP office is referring to is Ferritin, a measure of the iron reserves stored in your body.
The full iron panel is:
•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.
Iron Levels and anemia are related, but are not the same thing. Anemia: The condition of having a lower-than-normal number of red blood cells or quantity of hemoglobin. Iron deficiency can certainly trigger anemia, but it is more complex than that - especially for those if us with MPNs. Do note that anemia can increase thrombocytosis, but not always.
My Ferritin level is currently at 7. The MPN Specialist is not concerned because my HCT is back up to WNL. When HCT was way low, there was a concern as more severe anemia is its own issue. I was over-phlebotomized, which is what depleted my iron reserves and triggered the anemia. That and the fact that I have PV - my body does not deal process iron normally. After a brief course of low-level iron, I stopped due to the side effects. I elected to eat an iron-rich diet to gradually deal with the anemia. This worked fine for me with the form of PV that I have. The solution that is right for me is not necessarily what is what is right for someone else. Do bear in mind that treatment for PV is not necessarily the same as for ET. Iron deficiency is a goal in PV treatments since it controls erythrocytosis. Not the same situation as someone with true ET.
It sounds like you should look into what is going on with the iron deficiency ASAP. I would not take anything without speaking directly to the hematologist, preferably a MPN Specialist. The line between ET and PV is really more of a continuum of MPN disorders. You need a specialist who truly understands MPNs to look at the totality of what is going on, including: your individual MPN profile, side effects of medications (note hydroxyurea in particular), and other cooccurring medical conditions.
In summary, based on my KISS understanding - we have MPNs. Our bodies do not respond the same to some things (like iron). With PV, my body sucks up all the available iron and uses it to make more erythrocytes. More iron = higher HCT = more venesections. Storing iron as Ferritin will only occur if I take a bunch of iron - more than my body can use - which will just drive up the red blood cells in the end. Since I am now asymptomatic due to the iron deficiency, I am going to just ignore it. Based on the advice from the MPN Specialist, with concurrence from my hematologist - we will keep an eye on it, but so long as my HCT does not get too low (or I am symptommatice for anemia) then we are just not going to worry about iron levels per se.
I really have no idea what the right answer will be for you. I am sure that this is something that a hematologist with MPN expertise needs to be involved in. Most PCPs just do not have the expertise to properly advise and manage this situation. Hope you can get some answers soon.
Thanks for forwarding this article. I will have to reread it 2 or 3 times to more fully understand it. I have seen some similar research indicating potential benefit for Hepcidin in the treatment of PV. This article does a nice job explaining the dysregulated iron metabolism inherent in PV. WIll definitely need the medical dictionary to really process it fully. I found the comprhensive review of how it all ties together very intriguing.
I did note this comment. "Thus, if iron restriction normally serves as a brake on erythropoiesis when iron availability is limited, aberrant inflammation-insensitive erythropoiesis in PV may hijack iron for hemoglobin synthesis at the expense of iron requirements for all other cell functions, depleting iron stores." This is confirmation of what I understood, but now understand better.
This does sound like s promising line of research into helping to control the symptoms of PV. Certainly could be preferable to the toxin-based chemotherapies if it turns out to be viable. I am hopeful we will learn more as the research unfolds.
Thinking about red blood cells, iron, etc it occurred to me to wonder if people in places such as Nepal or Tibet ever get PV - or are they protected by their adaptation to life at high altitude with thinner air and thicker blood? I haven't found much by searching online, perhaps because the populations are small, the health/research institutions in those countries less advanced ... so it may not be easy to find people with PV rather than altitude-induced secondary polycythaemia ...
I was told by my haematoligist that if I was offered iron tablets I was to refuse them. It was suggested by my GP some years ago that my iron was low and to take, but fortunately my GP checked with haematoligist. I didn't take tablets but ended up with a venesection. I have been prescribed iron by my haematoligist, but a very low dose of 1 tablet once a day for 2 weeks. Personally I would speak to haematoligist. I'm lucky as I can always contact her and under normal circumstances get an appointment in a couple of days or phone call.
A great reply from Hunter. I have PV and was told to never take iron (not even multivitamins containing iron) , and never eat liver because of the iron content; also, don't eat beef more than once a week (I now don't eat beef at all) . The important blood result for PV is the Hct. People with PV need low iron or your body will just convert it into more red blood cells - that's the basis of the disorder. Then you can get clots and may need a venesection. I believe that you need specialist advice rather than from a nurse. MPNs are rare and a specialist field. I also would not take anything without speaking directly to the hematologist, preferably an MPN specialist who will know about all this. Sending best wishes.
Hi jilly, I had always been under the impression we shouldn't take extra iron but there are exceptions. It all depends on blood numbers. I gather that regular blood tests don't include detailed iron info. If the hb is OK then they tend to look no further. Several months ago my fingernails were curling down and twisting. I knew this was a sign of low iron and spoke to my Gp who carried out a blood test to measure my iron stores.
Serum ferritin 8
Serum iron 4.3
Serum transferrin 3.71
Transferrin saturation 5
I was put on 1 iron tablet every other day for 2 weeks. Then had the same dose again a couple of months later. So far so good. Blood test at 9.30am first time leaving my home since the last one 9 weeks ago. Phone consultation on 8th June.
Ha, what telephone consultation. After waiting 3hrs for the call I finally rang them. They told me I was definitely on the list to be called but somehow I had been missed. They wouldn't even have known if I hadn't called them. All the nurse on the phone was able to tell me was that my numbers were OK and that she would inform the consultant so that my ruxolitinib can be issued and sent to me. Not pleased.
A nurse rang me back later and said the consultant had tried to call me several times but the line was engaged. Bullshit. I had a call five minutes before the appointment but got rid of the caller quickly. So I can only assume that was the one and only time the consultant tried, and like I said that was before the appointment time. The nurse just said my bloods were OK and she would post a copy of the results to me and next telephone appointment in 8 weeks
I have not had much luck with telephone appointments either. Both of the scheduled calls from my Haematology Clinical Nurse Specialist never came but I did get e-mails from her with the most important information. The face-to-face clinics with the Haematologist, at least in my experience so far, always run well behind schedule (and indeed the letter advising me that the previously arranged face-to-face appointment would now be replaced by a telephone call mentioned that telephone clinics can overrun just as real ones do) ... but when his call came it was before the appointed time (as revealed by 1471 on the 'phone) and I was unable to take it. As far as I can tell he made no further attempt to call me on my main current number (to be fair I think he did try another number, relating to an address where I am not currently located).
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Saw my Haematologist yesterday 
Possible transformation to MF?
now my local Heme/onc says I have ET not PV and it matters how they treat me. 
