I have today received my next blood tests forms sent by haematology and Erythropoietin is one.
Now my red cell count has never been high or low (4.54) Its been normal always and my hematocrit is normal about 41 ( has been at highest 45 in 15 odd years) and my haemoglobin is normal around 136.
What are they thinking. It cannot be secondary polycythemia because my red cells have never been a problem.
It's my white count and platelets and mostly neutrophils although lymphocytes have been a problem.
I have never thought this has been polycythemia but had wondered et. Although right from the beginning of this latest bloods I thought something to do with covid and the vaccines.
I'm day 11 now and still testing positive wirh covid. Although I have read I should not be transmitting it.
This nightmare just goes on!!! They are thinking something. Could this test be covid related do you think. It certainly isn't mpn related because my reds look to be OK don't they????
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Hi EPguy. I haven't had it done yet. I'm going to wait maybe a week or so for this covid to go. I'm still positive and it's been 11 days now. Do you think that's the right thing or go next week but I'll still be bloods out because of covid? It's been a bad time with it tbh.
If I had active covid I would wait till it's negative and symptoms fade. Otherwise we never know "was that result the covid or the MPN"
I had some liver failure with long covid. My husband also had some liver failure, this was from the original Wuhan strain at the very start. No doubt my CMP would have looked really bad if I had one then. I think it influenced my LDH and WBC too. It's all fine now.
Yes. I think you're right. I had my last blood tests on the day I tested positive and they were very different to previous ones.
How do you know liver damage?
And yes I got covid on the day we actually locked down. And I got quite ill too but never seeked any help because I couldn't see a gp. I got shingles 4 weeks later and other weired symptoms and i wasn't too good after jabs too.
They are doing u and e and liver function agsin too. Do you think they know something? My ldh was 208 last month I think. So within range.
Liver was apparent from both of us having light grey poop. Hubby had it for months. That indicates trouble with bile and related things. I also had liver pains.
Usually with infection it gets better on its own, we got lucky there, and we didn't get the next stages (jaundice etc) My CMPs are good.
When we got covid there weren't even tests available. We were certain only in hindsight.
Is this your 2nd covid infection?
It seems you're getting what is called CMP (complete metabolic panel) in the US. This is commonly done along with the CBC so by it self their plan to do that is not unusual. For those on interferon (me) it is done especially often when starting since INF can affect the liver/kidneys.
My Dr doesn't think much of the LDH test, I think he feels it's too unspecific, but I have had it done. It broadly tells us whether our body is "on fire" with inflammation from any of many bad sources.
Yes the same. I couldn't get tested as it was the start of lockdown. We had to ring the doctors for my granddaughter and I told them then but they just said to isolate which we did.
4 weeks later I got shingles. I thought it was pleurisy at first as I had sore bits. But I came out in shingles type rash in the bath. And I was prescribed tramadol.
I know now after having it now that it was the same as start of lockdown.
Are you still feeling any effects from the Shingles? You should have some natural immunity now. My brother had it years ago so I got the shot, then they said that shot is not good enough so I got the new one. (Shingrix) .
Hi again I was diagnosed shingles via video link with my gp and not sure whether it was shingles as it acted different yo shingles? The gp said it was. . I am prone to complications from the shingles virus and previously I had ramsay hunt in 2013. I take daily antivirals due to this. I haven't got any pain there still but my face does still give me problems. I don't want a live virus type jab so havent had a vaccination against it.
I had a facial eyebrow problem after the covid jab.
I agree MPN patients are not supposed to get live vaxes. The current shingles vax is non-live, see reference here. So at least in that regard it's an improvement over the old one if one were to get it. I can say it does hurt going in and you need two of them, and they usually give it in Fridays to keep the weekend free for recovery.
But even if you did want it, I think the new one is not yet available in all countries.
I looked up Ramsay Hunt, not fun, wishing you well. It seems to be a category of Shingles, so you could have some immunity from that.
<<Shingrix is a new adjuvanted, non-live recombinant shingles vaccine.>>
I was having surgery to stop a benign tumour that was growing close to my face nerve on the left side and came around with my right side of my face paralysed. Very unlucky they said.
It was growing very close to my brain too. They had to take some of my skull bone to mend where this thing had eaten my bone away. In fact they say when they got in my head it was everywhere.
Ramsay hunt was a complication from the shingles virus. They said I must have caught it before my surgery. I looked like I had a stroke. But afterwards we weren't sure if my left side started off as ramsay hunt too. Nothing would shift the infection in my ear. It was called cholesteatoma. I went to infectious diseases and immunology but nothing was found as to why I got opportunist infections. Really not a nice time.
They gave me the pneumonia jab because functional antibodies were low. And then discharged me.
I think checking EPO is just standard monitoring for someone with an unclear MPN diagnosis. Just one more piece of the puzzle to factor in. It will almost certainly be WNL.
Sorry t hear the COVID drags on. It took me 12 days to shake the symptoms. Having COVID is not nearly as much fun as it sounds like! I would expect to see some elevation in WBCs, particularly Lymphocytes with COVID.
It is normal for EPO to cycle up and down in response to your body's need for oxygen. EPO is a ligand produced by the kidneys and liver to stimulate the production of Red Blood Cells needed to deliver oxygen to the body.
EPO that is higher than reference range would typically be a response to hypoxia. There are a number of reasons why this could occur. time at high elevation, smoking, sleep apnea and other conditions can cause this.
Hi again hunter. Apparently my lymphocyte count when taken on my 1st day of testing positive was actually low. 0.9. Before that all other times been around 4. But prior to this and looking back they were never out once.
So after covid first time they were raised for months staying steady at 4 and during second lot of covid they are 0.9.
Isn't erythropoeitin a WHO minor criteria that if you are JAK2+, and have one of the major criteria like high Hematocrit, then the hematologist would like to know your erythropoeitin level as part of and to complete the diagnosis? All the best to you!
I was being checked for et. My red blood cells count normal. And hematocrit normal although has been a little high maybe once or twice and my haemoglobin normal too. And my gene tests normal they say. I didn't know you could have polycythemia with jak2 negative. Isn't there another cause if you do??
I believe 95% of people with PV have JAK2 and 5% are JAK 2 negative. They have to fulfil other criteria to be diagnosed. Not aware if they know the cause in the 5%. My guess would be they will find another gene some time in the future.
Thankyou for that. I believe that for polycythemia your red blood count has to be out and hematocrit and mine are normal. I wondered et in the beginning but they say not???
My hematocrit is normal and hasn't been out. Just whites and platelets.
Neutrophils. And lymphocytes. I honestly believe something to do with my first covid and the jabs. It all started then. That's when I felt like I do physically drained.
I have never ever suffered breathing problems and tachycardia and general feeling tired as I do now. I went from being physically fit to this since having the first covid infection and then after each jab. My face went distorted after the 1st jab and I had random tachycardia after the 2nd one I suffered prolonged vertigo etc and the raised lymphocytes which had stayed raised until my most recent tests when I actually had covid (although I didn't know until I got home) again that day. Of course they said nothing to do wirh the jabs!!
I honestly think covid has damaged something. I couldn't test. I got what they called shingles 4 weeks later. I had my hand swelled to double a few weeks later. And was very red and painful. I thought I had a spider bite as I had all the symptoms of it. Could well have been a clot looking at photos. I itched like mad. And my hands and feet both came up in hives and hurt. I also had random red patches on my face just before we locked down. Like sunburn. Maybe it's totally unrelated I don't know. Just can't see why they eould do epo levels when my red counts are ok.
I was apparently checked for polycythemia in 2009 and discharged with no diagnosis. And I only had blood tests last done 2015 before this last lot
I expect the EPO test was just the doc being thorough. You may be right about COVID having some role to play in what is going on. Infections can raise platelet levels.
The issue of "triple-negative" MPNs continues to be explored in research. it does happen with both ET and PV. I expect one of the issues is that there are noncanonical mutations of JAK2 that are not tested for on current panels. Time will tell as we learn more.
ALl the best my friend. hope you are feeling back to 100% soon.
Thanks once again hunter. I've received an appointment today for 31st August. It's with a named haematologist and when looking him up he specialises in leukemia and myleodysplastic syndrome.
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