I've been diagnosed with PV for just over 5 years now and my consultant has been managing my HCT levels with venesections and low dose aspirin during that time.
My ferritin levels have only been checked about half a dozen times since I was diagnosed and currently sit at 5.8ug/L.
Nobody has mentioned checking this in the past until I was due for another venesection and the Haematology Unit manager called and cancelled the appointment partly down to my being at my target HCT level, but also due to my low ferritin level.
It appears that the low ferritin levels may be implicated with my restless legs, palpitations and itching which have previously been dismissed by the specialist nurse who used to call me on a three monthly basis during the pandemic.
How does everyone else manage their levels?
Should I be concerned about this?
I have a consultant appointment next week and will be raising this with them.
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Like you I have PV which is being managed with aspirin and venesection. Only Dx's last year so early days. I have had 2 venesections with last one being in Nov, as it seems too much blood was taken causing anemia. They do not routinely check ferritin or folate which I am now going to ask for going forward. My ferritin is not below range but right on the low line so it is still causing symptoms but MCV, MCH, HGB, HCT all work to causing anaemia but not iron deficiency anaemia. All very confusing to be honest.
Thanks for replying. When I was diagnosed I was having venesections almost weekly for about 3 months. I even bought a pass for the hospital car park as I was going so often.
My ferritin was at 24ug/L at the start and has been around 7ug/L ever since.
I generally feel ok, the itching after showering is the worst bit and it is starting to happen a little when I go to bed.
by definition venisections are to make you iron deficient, haems tend to be okay with low ferritin, it has to be or you will produce too many red cells unless on on cytoreductive meds. Haems tend to follow MCV to assess your iron deficiency, and of course Hgb,Hct,RBC.
Some people are fine with venisecting and low ferritin for years and some many decades but others not. Not everyone gets the symptoms you mentioned, my itching didn’t vary with different levels of iron deficiency and never had restless legs with 7 years of iron deficiency. The only alternative is cytoreductive meds and there are pros and cons to them all as there is with venisecting. To drug or not to drug is a big subject and worth researching carefully. In the meantime be careful not t over venisect as this will unnecessarily lower your iron stores.
I know that venesections will make me iron deficient and I had been discussing starting medication with my new consultant when I met her for the first time a few months ago. I didn't see her on the next appointment and her colleague didn't give any support or suggestions on any treatment, just left everything in my own hands.
My ferritin has only been checked sporadically over the last 5 years, sometimes it appears to have been over a year between samples and I only have venesections to keep my HCT at or below 0.45.
Your low ferritin level would not be a reason to cancel a venesection as that is the intent in using venesection to treat PV; however; being at your HCT target would definitely be a reason to cancel the scheduled venesection. In addition, they always check my HGB immediately prior to any venesection to ensure I will not drop too low due to the procedure.
You are correct that chronic iron deficiency can have side effects even when you are not anemic. There are a number of adverse effects that can occur, including fatigue, loss of concentration, alopecia, reactive thrombocytosis - all of which I experienced. Restless legs and arrhythmias are also potential iron deficiency symptoms,
Each of our treatment options have a risk/benefit profile. We each respond differently. My own experience with the side effects of iron deficiency led to my decision to start on the interferons, Pegasys then Besremi. I have found the IFNs to more effective and much easier to tolerate. My quality of life has improved.
Since you may be having adverse effects from the iron deficiency, suggest that you speak to a MPN Specialist about your care plan. You can review all of your treatment option and make a decision about what is in your best interests.
Problem is that as I have been moved from one consultant to another as the Haematology Unit has been re-organised I haven't had consistent care for quite some time now. My last visit was a waste of time and I am hoping that I get to see my proper consultant this time as she has an interest in MPNs at least.
Nobody seems to monitor anything other than HCT and I've been more or less left to my own devices. It is my decision to visit the unit monthly to see where I am with HCT level, not because anyone has said that I should. Up until the last month or so, nobody has mentioned anything about ferritin and it doesn't seem to have been monitored very well either.
Maybe IFNs will be the way forward for me too. That was the discussion that I was having with my consultant a few months back, before she disappeared.
I think you are hitting an issue with the NHS. I have similar and am trying to educate myself so I can take a more active role in my treatment plan. I'm o. 4 weekly Venosection + 75mg asprin with the only real side effect being breathlessness when I work out at high intensity. Having read a lot on these pages I'm considering asking for Peggy as the prime treatment as there is evidence it also reduces progression and as a 59 year old that still feels important. I'd like any other thoughts on this.
I've been on venesections and aspirin for about 5 years now. My main symptoms are itching when I get out of the shower and occasional palpitations when out walking. Most of the other symptoms have previously been discounted by the "specialist nurse" who used to call me every 12 weeks during the pandemic as nothing to do with PV, even though I had seen others here with the same thing. Seems like some of my issues are down to low iron levels, but as I've mentioned before these have rarely been checked and I've never had a full iron panel done.
Have you had your ferritin levels checked recently?
Mine have been in single figures for the last 3 years.
At my last three appointments I've seen three different consultants and been given three different opinions on treatment. Ranging from "you don't need to start treatment yet" through to "you need to start treatment as continuing on the venesection only route will only reduce your iron level further". Basically, how I proceed now is entirely up to me.
It sounds like you are already aware that there is more to monitoring PV than HCT. Erythrocytosis is the biggest risk factor for thrombosis, but there is more to treating MPNs than the risk of clots. All of the symptoms matter, including the adverse effects from treatment. Hopefully, you will get a better response from the doc with an interest in MPNs.
The tests we do on a regular basis are a CBC and CMP. We look at all of the numbers, not just HCT to determine PV status.
The tests we do periodically include, full iron panel, EPO, LDH. We are also occasionally checking the JAK2 allele burden.
Since iron levels are a particular concern, a full iron panel would provide more information than ferritin alone. This is what a full iron panel 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.
I was blissfully unaware that there was more to PV than HCT levels, but have discovered that there is a lot more over the last month or so. I will take the information that you have provided above with me next week as I have never had a full iron panel done so far as I am aware.
This is my first post...please excuse my ineptitude. My experience reflects exactly what Hunter stated. I experienced 2 major episodes of extreme fatigue, lack of energy, etc. which were resolved after iron infusions. Although my free iron, saturation, etc all were ok, UIBC/TIBC were graphed. The cuplrit was my iron reserve even though everything else as ok that as causing the issues. It was verified the second time as well. Iron infusions are contra indicated in PV patients. Dr's need to look furhter for the cause of the patient's symptoms and not treat just the tests.
9 years ago (see 2014 article below) it was already known that the drug interferon alfa (brand name Pegasys) could "decrease the need for phlebotomies in the large majority of PV patients" and in that way help the PV patient avoid low ferritin symptoms like heart palpitations, deminished exercise tolerance, etc. mpnforum.com/an-open-letter/
I have had a similar problem with low iron levels, itching and restless legs. This is partly managed by hydroxycarbamide, venesection and occasional iron. The iron stopped the restless legs and the itching is slightly better but I expect my ferritin levels are still below normal! Good luck with requesting iron tablets!
I don't have PV but I'm on this forum due to monitoring my platelets and gaining understanding for possible future need.
I do have a b12 deficiency and have restless legs. I was told by my neurologist that low ferritin can cause restless legs. It so happens that my ferritin was low. So I was prescribed iron tablets that did the trick to increase however I have since had them checked again and my ferritin is falling again. So I take an iron tablet every other day for maintenance.
Hi just a quick tip which is a huge help for me with itching post shower, before your shower, or bath, give yourself a self massage with organic body oil, for an extra treat you may get one with essential oils in which will add benefits such as muscle tonic, relax, sensual, invigorate - but the main point for this post is that I find it to greatly alleviate that irritation after bathing which can be especially bad in a hard water area I also find, so it will vary depending on your geography and water source - pls do be careful using oil before bathing in the shower of course - slip hazard. I do hope that this helps..... the 2nd part of my arsenal against the itch, is homeopathic hystamine, one tiny pill before bathing and bingo - ideal for sea bathing too where you are not able to use oil etc... I hope that this helps our beautiful circle of people. Love Sarah (now gonna dig out my ferritin levels and see, haven't considered this before)
I have PV and low ferritin. I have been on Hydroxy for about 4 years and no longer need venesections. My ferritin keeps dropping down and so they do test mine fairly regularly (sometimes at my request). I do suffer with itching - I take antihistimine which helps but doesn't get rid of it completely. When my ferritin gets really low I start to suffer dreadfully with restless legs and exhaustion. I will then normally be put on a small dose of iron tablets, usually taken for two weeks every other day which restores things somewhat. It is a fine balancing act and some Haematologists refuse flat out to prescribe iron, but so far it has worked well for me and not resulted in any further venesections (touch wood!)
Diagnosed with PV 15 years ago. HCT and Haemoglobin is measured every 3 months. Ferritin is measured about every 2 or 3 blood tests. My Ferritn level is usually about 3 or 4. My last HCT was 41and Haemoglobin was 121. I'm anaemic, but they won't give me iron tablets as last time HCT went from 43 to 49 within 4 weeks. Consultant has said as HCT went up so quickly that I was at risk of a stroke. So unless I'm breathless and on my knees they will let Haemoglobin come up naturally by eating iron rich foods. One being chocolate and especially dark chocolate. I can now say I eat chocolate on medical advice.
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