(I'm PV. Diagnosed 14+ years) Finally this week my consultant agrees to give me a course of iron. Does the following dose sound right/enough? 300mg ferrous gluconate once a day for a month.
I'm on day 4 and don't feel any better at all.
(Blood test 4 days ago: ferritin 6, Iron 3.8)
Im considering doubling the dose.
Generally speaking, iron supplementation is contraindicated for people with PV, unless you are anemic. Note that iron deficiency and anemia are two different things. Anemia is a deficiency in RBCs/HGB. Anemia may or may not be related to iron deficiency.
Iron deficiency may or may not cause anemia. It is normal to be iron deficient when you have PV. The body is using up the iron to make too many RBCs. When you have PV, the body is going to try to use all of the available iron to make RBCs, not just store it. At the core, PV is an iron dysregulation disorder.
When venesections are used to control the erythrocytosis, iron deficiency is the intended outcome. More iron = more RBCs. This is what is used to reduce the RBC production. It is worth noting that iron deficiency without anemia can have adverse effects. These can include fatigue, memory and concentration loss, cold intolerance, alopecia and more.
The adverse effects I experience due to phlebotomy-induced iron deficiency were worse than the PV symptoms. That is why I changed my treatment plan. I am currently using Besremi to manage the PV. It has been very successful. My quality of life has improved.
Note that in the past I took a low dose of iron when my HCT dropped to 32%, clearly anemia, due to being over-phlebotomized. This was very short-lived. I could not afford to take iron in the long-term. Note also that iron is not easily metabolized by the body. It will take some time for any supplementation to be effective.
Wishing you success in finding the right balance in managing your case of PV.
No offence intended, but this is the clinical response I really didn't need. With respect, I'm aware of the points you make. It's all I hear when I share my symptoms.
I appreciate you taking the time to reply. I'm just feeling quite hopeless, fatigued with zero energy 😕
There is no offense taken. Sometimes we just need to vent and feel heard. I have been there too. It is hard to move forward when you just do not have the energy to do so. Please know that there is hope and things can get better. Wishing you success in finding the approach that will make it so.
I was feeling exactly the same the hospital put me on iron tablets 1 a day for 3 months feel loads better more energy
Thanks Hunter I finally get it I took have PV n my Hematologist advised against the iron n you have explained that very well. Thanks
did you also have your vit B12 and folate checked as these work closely with iron.
If not, maybe worth asking for these tests, and vit d .
Deficiency in any of these can cause symptoms .
You say you are not feeling better, but what are your symptoms?
hi MancMermaid, sorry to hear that you are not feeling any better, it's awful when you are fatigued and have zero energy. Get in touch with your haematologist or your clinical nurse specialist and tell them that you don't feel any better, they can then advise you on how long it might be before the iron tablets will start to take effect, or whether or not the dose needs to be changed. I hope you do feel better soon. Best wishes, Maz
best be careful supplementing with iron if not on meds for PV, Hct can rise a lot very quickly in my personal experience, wise to have blood tests very often until stabilised, if it was me I would test weekly to check Hct.
Ferritin of 6 is not uncommon on venisection only, do you know your MCV , that’s the one haems tend to pay attention to when on venisection only.
When I was on venisection only for 7 years my MCV dropped to 56 ie extremely iron deficient, not a nice place to be so I emphasise with how your feeling, it drained the life out of me. I started meds (Rux) and feel dramatically better with all counts normal eg ferritin 90 and MCV 88.
I’m sure you have thought about it but maybe it’s worth considering meds , meds can have their issues but they can also for a subset improve the bone marrow and make people feel much better.
I might be wrong but having played the balance between venisecting and watching iron intake for seven years would say I would not be confident that adding iron when venisecting only is a long term sustainable solution.
I hope you feel a bit better in the meantime, we’ve all had that hopeless feeling from time to time but there are options to consider which can change that. It’s important to have a good Haem or a good expert you can consult from time to time that can set direction and work with your local Haem.
My wife has a ferinject IV yesterday and has another next Thursday, her Christie's consultant insisted on them to try and up her iron reserves. Wales are doing as they are told which is lovely. I imagine with your name you may well be in Manchester, if so only expect the best treatment, but it will take upto four weeks to show up in your Hgb.
I have PV for 16 years. A few years ago my ferritin was 3 or 4 and low haemoglobin. Hematocrit 43. They agreed I was anaemic, but unless I was literally on my knees or severely breathless they wouldn't give me iron. Last time I had iron my hematocrit went up so fast and high I was at risk of a stroke or heart attack. They said if I was given iron it would be low dose for a week. Blood test and an appointment for venesection just incase.They suggested taking Spatone a could of times a week to raise my iron level very slowly. As others have said iron is a touchy subject for PV.
I am so sympathetic in a similar boat. Ferritin of 5 after phlebotomies left me feeling like garbage. Once all my cell counts were in normal range with besremi my doctor allowed me to take 324 mg ferrous gluconate for a month. I think you will need more than 4 days to feel better because it takes time for the ferritin level to rise with iron supplementation. As others have mentioned it’s a delicate balance with iron and you don’t want to encourage your cell counts to rise, so best to stick to the dosage prescribed. I hope you feel better soon!
I've been dealing with PV for almost 5 years and had a similar experience to yours a few years ago. At the time I also switched doctors who I faulted for allowing me to get so anemic. My new doctor put me on iron for a month and stopped the venesections. (I haven't had one in over 2 years.) I do occasionally get very fatigued so my doctor put me on b12 a month ago and I'm pretty sure it has helped.
I was on a similar dosage of iron as you for about a month and still take a pill or two a week when I feel the need which is probably silly but I do it anyway. My doctor does not want me to overdo it though.
Give the iron some time to work. I wouldn't increase your dosage though. You didn't mention the venesections but if you're getting them, just recognize that it could be working against what you're trying to achieve. Good luck going forward. Hoping you can start feeling a bit better soon.
Hi MancMermaid, I don’t know much about your condition, but from an iron deficiency point of view, you are not being cared for correctly, a ferritin level of 6 is extremely low…. They haven’t got you on a big enough dose, the iron your taking is non heme iron which is poorly absorbed by the body and they’ve only give you 1 month supply which is no where near enough….
They need to put you on a dose which is a least equal to your weight, they need to put you on a heme iron which is obsorbed much better by the body (NHS doesn’t supply heme iron so you would have to get your own, try three arrows simply heme), or even better get an iron infusion, and it also takes on average 6 - 12 months to fully recover from an iron deficiency, anything done naturally takes along time to fix… I wouldn’t be surprised if alot of your symptoms are being caused by your deficiency.
You will need to get iron panels done at least every 3 month, just to monitor your levels to make sure what your doing is working…
Hope this helps, don’t give up… I know how it feels, order the iron tonight and you can start feeling better again soon
P.S. optimal ferritin levels should be at least 100ug, but higher would be better, get yourself on the Iron Protocol Facebook group, big community with lots of good information
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