I have all the symptoms of anaemia and although my red blood cells have dropped whilst taking hydroxycarbomide my haematologist saysthey don’t go by them only by haemoglobin and if I don’t feel well to see my gp. RBC currently 3.6 ( range 3.8-5.8) haemoglobin 132 )range 115-160). I have indeed made an appointment with GP albeit in 3 weeks time . I have tried to research anaemia on the net and find it somewhat confusing, I know my folate is also low. It also says you can be anaemic with low RBC and ok haemoglobin as your body stores iron as ferritin . Thoroughly confused and would like to understand a bit better before appointment with GP. Although from past experience they won’t be helpful and will say discuss with haematologist. Meanwhile I’m struggling with everyday life , seems to have crept up on me .
Anaemic ? : I have all the symptoms of anaemia and... - MPN Voice
Anaemic ?
I am in the same position as you. All bloods low and have been so for 3 years, during which time my energy levels have decreased drastically. This is since I have been taking Ruxolitnib. My haematologist recognises my anaemic state but when the dose is reduced the itching returns, so for 3 years dosage has been up and down like a yo yo. At my last appointment haemo said that I couldn't continue like this and he would be looking to add another medication but at that appointment I also had a BMB so he wants to see results of that because he suspects my disease has progressed .I'll post again when I have the results and next step in my treatment.
My problem is the haematologist won’t recognise it’s something to do with the HU and has told me to see my GP. I have tried to research but it’s too complicated. I just want to know what supplements I can take as I don’t want to drop dose . Platelets are still in the 700-800 but I’m not increasing my dose unless I feel better than this
I just wish the suggestion about adding another med had come sooner but I've been doing a clinical trial so important I only took Rux and aspirin, not even allowed any supplement. However, I have no regrets because I only got Rux by doing the trial and I need it for the itching. I never want to go back to itching days. So unfortunately, I cannot advise on supplements. I understand that lots of MPN patients experience anaemia type symptoms because of the MPN regardless of their blood results.Perhaps, others on this site can help you more. Good luck.
Thank you, I have been on HU for 5 years but this is a fairly recent thing and the symptoms have really crept up on me together with the lowering of red cells. My mother had the unbearable itching and was happy to take high doses of HU , she had the MPN that affected white cells so I do sympathise . I had no symptoms from my ET , So am finding it hard to be feeling unwell . Best wishes to you and thank you
It will be important to understand the basic terms that you need to dismiss with your care team.
Iron deficiency and anemia are not the same thing, Anemia is a deficiency in healthy RBCs/HGB. There are different types of anemia that can be caused by different factors, including iron deficiency, deficiency in Vit B/folate, and medication side effects. One form is hemolytic anemia, which occurs when RBCs are destroyed faster than they are created. Hemolytic anemia is a known side effect of hydroxyurea.
I would not want to guess at what is causing the symptoms you are experiencing. The body is a complex system and factors like folate and iron levels could certainly play a significant role in what you are experiencing. It certainly seems that a complete nutritional assessment, including a full iron panel would be warranted. You may be dealing with a number of factors. It is important to understand the iron deficiency in particular since this can mask a case of PV, causing it to be mistaken for ET. This is the province of a MPN Specialist to assess. It is beyond the scope of a GP, thought he GP could order some of the tests that will help sort things out.
I would be sure to review your situation with a MPN Specialist for the most accurate answer.
Thank you Hunter, My haematologist says I am not anaemic as they go by haemoglobin so I don’t really know what is gained from testing red blood cells if when they go below range it apparently doesn’t matter. I also asked the gp last year as they’ve been below range for a while. I also don’t get their obsession with being “in range “. My opinion is that symptoms should be taken into account, I also have this issue with a long standing thyroid condition. The range for T3 is 3-1 -6.8. So if your T3 is for example 5.5 and you feel well then it goes down to 3.6 and you don’t feel well they shouldn’t say you are fine because you are in range! Equally if you feel well with harmoglobin at 140 then it goes down to 132 and you don’t feel well then put the pieces of the jigsaw together to raise harmoglobin again. And RBC of 4.7 drops to 3.6 and the patient says they aren’t feeling so good don’t disregard what they are telling you . I am just not listened to and previous visits to GP have been a waste of time as they don’t like to interfere. I’m going to try a different GP but am not holding my breath
Good points here re being in range not often the answer, I see you have ET so it’s a pity they won’t let you add iron to raise the reds while keeping the dreaded itch at bay
There is more to treating a MPN than having numbers in the reference range. Constitutional symptoms like fatigue can occur even when HGB or any other number is in range. Good MPN Specialists are aware of this and will work with you to treat all of the symptoms you experience, not just the numbers.
It is important to be specific about the symptoms you are experiencing. Feeling unwell is too vague to respond to. Symptoms like fatigue (dyspnea or asthenia) , brain fog, difficulty concentrating, and insomnia, are more specific and can yield more specific interventions. Suggest keeping a daily log of the specific symptoms you are experiencing.
You would benefit from a second opinion from a a MPN Specialist. Your situation is more complex since you also have a thyroid condition. The symptoms can overlap and possible exacerbate the issues you experience. Your endocrinologist should also weigh in on what you are experiencing.
I think you have seen this before, but just in case, here is a list of MPN Specialists. mpnforum.com/tsr-the-list/
Thank you Hunter. Very clear explanation.Jodary, I think if I were in your position I would do as Haemo and Hunter have suggested and go to GP and whilst there request a referral to an MPN specialist.
Let us know how you proceed and get on.
There are 3 drugs fedratinib and momentalib that do something similar to rux which nay be suitable. Perhaps discuss with your haematologist
anemia and iron deficiency with MPN can take many forms ( quote from Clair Harrison), I agree it’s tricky, I struggled with it for 10 years. My Hgb was near 150 and Hct 44 but I was extremely iron deficient because my MCV was down to 56. So it’s a bit complicated, I hope but doubt your GP can help , it maybe wise to get a opinion from a expert Haem who understands it better
I had a somewhat similar experience a few years ago. I was very fatigued due to anemia. As Hunter and others have pointed out, this is a complicated issue. I switched to another MPN specialist who immediately put me on an iron supplement. He also stopped my venesections. Subsequently he also added vit D. I get very comprehensive blood panels every other month and more recently he further reduced the iron but added Vit B. It is very much a juggling act but I'm fortunate to have a doctor who really thinks about his patients. I'm 77, went for a long bike ride this morning after walking my dog so I'm feeling pretty good. I can only wish for you to get the help you need that allows you to get on with life. There is a solution for you - trust me.
I’ve been suffering from an iron deficiency since 2021. Since then my platelets have almost normalised (ET). I haven’t seen a consultant since the start of Covid. It’s always been phone appointments. I was referred to have a second bone marrow done and attended a clinic yesterday — a junior doctor proclaimed I didn’t have an MPN, when I asked “so I don’t have ET” he then said oh you do. He was insistent that I go for scopes (no gastro issues ever) to find out why I’m anaemic. I’ve also been told to stop my aspirin (I have previously been on Interferon and hydroxycarbamide). According to him it’s because my platelet levels are “normal” (485). I’m now getting an Iron IV (which I am pleased about) - but really worried that I’m suddenly off something that I’ve been on for a very long time. I’ve actually reached out to Mark Drummond for a private consultation.
Does this sound fishy to anyone? I’m not a medical expert and certainly not a google warrior with these things
P
High Red blood cell count
An explanation for why I am fatigued.
Haematologist / outcome 
Platelets and haemoglobin
