Last check up I was told I had anemia which did at least explain my lethargy. The Haematologist asked me about any other symtoms I'd noticed: Acid reflux, jaded appetite, night sweats were the most obvious. To my surprise, as I was expecting the anemia to be PV related, I was told that I was to be referred back to my GP to see why I might be anemic. At that point I surmised that maybe I had a stomach ulcer and this was preventing normal iron uptake. My GP consultation seemed to also hint at a stomach ulcer or some such stomach issue and referred me to gastro-enterology at the hospital. My appointment was yesterday. The gastro-enterologist seemed quite surprised that the hematologist didn't think that my underlying PV had anything to do with the anemia and rasied the possibility that I may be progressing to Myelofibrosis. He has arranged a gastroscopy and will contact the haematologist to ask why she doesn't think the anemia is PV related. He also checked my spleen which was 'noticeable'.
I'm feeling slightly despondent as I still don't know what's causing my anemia, and feeling lethargic and fatigued a lot of the time is not great. Only a few months ago I was feeling fine. I've had PV now for 12 years and have been doing well on hydrea. No venesections for atleast 3 years. The thought of progressing to MF at the age of 55 is troubling if I'm honest. If anyone has had anything similar I'd be very interested. Sorry, I've not posted for a while.
Written by
Dodders
To view profiles and participate in discussions please or .
hi, good question from Paul, even better if he could explain the implications to us?
i recently converted from pv to myelofibrosis age 59 but i have never heard that there was a link between this and anaemia. i was/am anaemic because, as i understood it, my bone marrow grabbed any iron and made red blood cells with it. as i progressed to mf, my spleen expanded until it could be felt, so i felt full up quickly, also had night sweats. The worst symptom was bone pain: but my haem said it wasn't connected with PV and I ended up seeing a rheumatologist who, like your gastro, was politely amazed that my haem didn't think it was due to PV....
I wouldn't expect a gastro to be able to tell u that you might be progressing in a disease that is so specialist and out of his field. Conversely, I think your haem should be able to tell you, and his actions suggest that maybe he doesn't think u r progressing? I didn't see any difference in my anaemia as I progressed.
So back to your haem?? He seems to be asking the right questions but you may want a second opinion if the iron issue doesn't resolve?
With MF you can become Anaemic because your bone marrow struggles to produce the red blood cells.
This is why often with MF your Spleen enlarges as it takes over the job of producing the red blood cells. (Which is why removal of the spleen is not recommended as it means other organs like your liver take over then). The spleen enlarges with PV/ET for other reasons, as your spleen removes dead blood cells or excess blood cells so it has to work harder and becomes enlarged (not always of course).
The reason i ask about iron deficency is because thats a different reason you would become anaemic as your body needs iron to produce red blood cells.
So I would say that if anaema is present alongside iron deficency it could point to other causes. I have PV but suffered with anaemia to start with which was as a result of iron deficency caused by slight bleeding from varices that have formed in the lining of my stomach.
If there is iron deficency which has no obvious cause i would expect an endoscopy to be carried out to check if there is any sort of bleed which might be causing it.
Of course it is possible you could have anaemia from MF and be iron deficent for other reasons so having both doesn't rule MF out but its something i would expect to be investigated before considering progression to MF.
I agree with your point of i wouldnt expect to be told by a specialist in a different field that progression may be occuring.
Of course I am not an expert and this is just my take on it.
Yes, got most of that thanks, but to go back to your original post, are you telling Dodders that if she/he has a low ferratin count there may be another underlying problem not linked to MPN, but if her /his ferratin is normal then the anaemia is probably MPN?
My take on it would be yes that if there is low ferratin with anaemia then there is possibly another underlying problem which I would be investigating first before suggesting any form of progression was occuring.
The problem could be linked to the MPN as mine was (my varices are as a result of my enlarged spleen which is as a result of my MPN), but not directly.
If ferritin is normal and anaemia is present in someone with an MPN then I would think it normal to investigate if any form of progression is occuring yes.
I wouldnt want to say probably because no doubt there are lots of reasons anaemia or low iron can occur.
Like i said i am far from being an expert, this is just from my experience around the time of my diagnosis.
I read somewhere that another form of anaemia can be caused by vitamin B12 and folate deficiency/imbalance and that folate supplements can mask a B12 deficiency.
Many thanks for all the replies and helpful comments and points. I'm afraid I don't know whether it is ferritn or HGB. My hope is that due to a gastric issue, which my syptoms would indicate does exist, my iron uptake is being inhibited, or there is some bleeding although the latter doesn't seem to be born out by my motions! I (foolishly) self prescribed both diklofenac and narproxen for a period of back ache and I suspect they may have exacerbated an underlying stomach issue. If it is incipient MF, well I'll just cross that bridge if it comes up.
The gastroscopy should shed light there. I am also going to have an abdominal scan. I see the haematologist again in about 8 weeks and answer what appears to be some unanswered questions.
I saw my hematologist yesterday and hemoglobin count was 10.1 (it was 10.9 for 4 years). I should be feeling weak, but don't feel bad. Doctor wants me to have a third bone marrow biopsy. I've been taking iron, baby aspirin, niacin, B12, Super B complex, Vitamins C and D3.
I took Hydrea for ET for 9 years until 2012. Platelet count is now in normal range.
I saw the haematologist yesterday having decided that I did not want to wait another 3 weeks and in the meantime be away on holiday. As the gastroscopy results were all okay the dignosis was that it must be the hydrea that is causing the anemia. I have now been taken off hydrea completely and will go for a check in 3 weeks to see what if anything has changed. The significant part for me was that the Doc was pretty sure that I have not started to progress to MF.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Have I progressed to PV?
Why am now being asked to have another vaccine so soon after the third?
Update and few questions because i have no reliable sources 
Doctor thinks I have PV
Is anyone else bothered with leg and foot cramps? I have PV Jak 2 negative.
