Raised mcv

[poly2]

Morning all. I have pv and taking hydroxycarbomide and apixaban. I've been struggling with breathlessness for some time now but haematologist says it's not down to the mpn and referred me back to gp for more investigation. The gp did more blood tests and called me the day after to go for another blood test as my mcv and mch is raised which after searching on Dr.google it could mean anemia or Down to the hydroxy. Has anyone else any thoughts. Thanks.

[mhos61]

I have ET and take hydrea, my MCV/MCH levels are slightly raised, it is a normal reaction to hydrea treatment. It’s also a way for haematologists to note patient adherence to treatment, so it is expected.

However, as you’re experiencing breathlessness, your GP will probably want to rule out macrocytic anaemia (B12/Folate deficiency), which is also indicated by a raised MCV/MCH level.

[poly2 in reply to mhos61]

Yes, I thought so but second blood test rules a b12 and folic deficiency out too . I was just a little worried that the pv is progressing to mf and haematologist is reluctant to do another bomb from 4 years ago.

[LittleLuna]

I don’t know a lot about this as new to MPN and potential PV but I do know that “shortness of breath” is a symptom. Is your haematologist an MPN specialist. I know from little contacti have had with GP while waiting for results, no knowledge and treat it like cold. Key advice here seems to be getting MPN Specialist and an understanding knowledgeable GP

[poly2 in reply to LittleLuna]

I'm presuming gp will follow up with haematologist. They profess to being knowledgeable but I do have my doubts due to previous issues. Thanks for the advice.

[Exeter21 in reply to LittleLuna]

Yes haemotology best experts as GPS knowledge of blood problems seems minimal. I wasted 4 months asking for bloods to be told they were normal. Pressed to get results readings to find they had not taken bloods I requested. Within 24hrs of those bloods I was in Haemotology getting more tested which resulted in me already having ET . No faith in GPS Since Covid mine treat anyone terrible. Lost all my hospital referrals as they sat in their computer indent 🙈Haemotology best 👍

[Wyebird in reply to Exeter21]

That’s awful.

[mhos61]

The breathlessness may or may not be related to your PV.

I don’t think your haematologist should be so dismissive of a connection. Forum members have complained of breathlessness and in the link below (highly reliable source) breathlessness is listed as a potential side effect of PV.

Has there been any dramatic changes in your blood counts or do you have splenomegaly which may also impact on your breathing?

As others have noted maybe time to consult with an MPN Specialist!

mayoclinic.org/diseases-con...

[poly2 in reply to mhos61]

I have portal vein thrombosis and splenomegaly. I've heard many reports of breathlessness and spoken to haematologist about it but he still rules it out as being a symptom. He says my bloods are stable even though gp is concerned about the raised mcv and mch.

[mhos61 in reply to poly2]

I would strongly recommend asking for a referral to an MPN Specialist. You can do this through your haematologist or GP.

I have recently done this, so glad I did after dithering about it for too long. I have opted for ‘shared care’ mainly due to logistic reasons. I am so impressed with my MPN Specialist team.

[ciye in reply to mhos61]

I was told by go they couldn't refer me as the nearest specialist is out of area.

[mhos61 in reply to ciye]

That’s a load of twaddle.

My MPN Specialist is 150 miles out of my area. They are few and far between.

Have you tried asking your haematologist? I sent an email to my haematologist asking for a referral, suggesting it was in my best interest going forward with my health care, as MPNs are rare.

[Wyebird in reply to ciye]

Fiddle sticks you are within your rights to ask for a second opinion. You can request a specialist anywhere in country. I’m afraid you have to protest. It’s not fair I know but you must. Good luck

[Jellybean129 in reply to mhos61]

I too dithered too long and eventually asked my GP to refer me to an MPN specialist. They were brilliant and agreed to shared care once they have me on an even keel. I found my haematology team in my local hospital slightly out of their depth with MPN's and never got straight answers to my questions, just "your bloods are fine, speak to you in 3 months..."

[mhos61 in reply to Jellybean129]

Glad to hear that. 👍

[Meatloaf9]

I can only tell you my experience. When my MCV and MCH first became elevated, maybe a couple of months after starting HU, the MPN specialist I see told me that it was expected with HU and that was how they knew I was taking the HU. After 9 months on HU the MCV is down slightly from a high of about 103 to about 101 now. Best to you.

[poly2 in reply to Meatloaf9]

Thank you for the advice. I've been on hydroxy for nearly 4 years now and yes you're right, I've dithered for far too long now thinking that they tell me my bloods are stable but I'm sure an mcv of 102 and mch of 33.5 isn't right

[mhos61 in reply to poly2]

Those numbers pretty much resemble my own from what I can remember.

What is your dose of hydrea, and has it been increased recently? Are these ‘new symptoms’?

[poly2 in reply to mhos61]

I've been on the same dose for the last 4 years and had breathlessness for a while but getting increasingly worse ,the dose is 500mg one a day five days a week. Haematologist doesn't think it's related and referred me back to gp for further investigation.

[mhos61 in reply to poly2]

You’re on the same low dose as me. I’ve been on that same dose for six years.

See what the GP suggests test wise, and take it from there. But I stand by a referral to an MPN Specialist.

Let us know the outcome

[poly2 in reply to mhos61]

Thank you. Yes I will see what the outcome is and also speak to haematologist again. If I don't get any joy I will certainly look at a referral to an mpn specialist, I think my nearest one frome stoke is Nottingham. I will keep you posted, thank you all.

[mhos61 in reply to poly2]

Not so sure there is an MPN Specialist in Nottingham (I live in the county). Sometimes a haematologist may register a ‘Specialist interest’ in MPN, which isn’t the same thing.

There is an MPN Specialist, Professor Tim Somervaille practicing in Manchester, about an hour from Stoke I believe.

[poly2 in reply to mhos61]

I believe her name is Dr Jennifer Byrnes and she is on the list of mpn specialists. If not Manchester is OK too. Thanks

[mhos61 in reply to poly2]

I think she may specialise in the ‘management of myeloid disorders’, but I’m not sure that makes her an MPN Specialist?

[Wyebird in reply to poly2]

Mcv110+ Mch37+ for years, they’ve just come down to normal range. I think it’s due to Peg. I’m under an MPN mega specialist and she wasn’t phased at all.

[DJW1 in reply to poly2]

Hi There. I have had pmf for at least 4 years - dx May 2018 - and my mcv is now 110. Personally, I would ditch the hem and go to a real specialist in mpns. It is too rare and different to be treated by a general hem.

[Wyebird in reply to Meatloaf9]

Yes I remember being told something like that.

[hunter5582]

The elevations you note are called macrocytosis, which is a normal reaction to hydroxycarbamide (HU). As mhos61 indicates, hematologists actually use this to monitor patient compliance. Breathlessness (dyspnea) is also a common reaction to HU. drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

Most GPs know very little about PV and the meds used to treat it. Unfortunately many hematologist also lack experience with MPNs. Your hematologists should recognize the common side effects of HU. Suggest you consult with a MPN Specialist regarding what you are experiencing,

mpnforum.com/list-hem./

Hope you find answers soon.

[poly2 in reply to hunter5582]

Yes, thank you, that's what I'd read too. Sometimes feel I know more about it than they do. I will see what transpires from gp to haematologist. Your advice and this forum is invaluable.

[EPguy]

My MPN specialist is very clear that raised MCV and related items are not a concern by themselves and as Hunter says, in absence of other factors, a normal reaction to HU.

[Kari1961]

Yes, it's a reaction to taking HU. All other bloods for me are stable and in range, my MCV at my last FBC two weeks ago was 115.0, MCH 41.3. They're always flagged as high on the results.

My GP noticed the change a while back after a blood test not relating to the MPN and put me on a course of Folate. My Haem wrote to her and said it due to HU, and it would do no harm, but likely wouldn't do any good - my Haem was obviously correct as MCV/MCH remained high.

I take 500mg x 4 days and 1000mg 3 days.

[Imkerin]

I have PV diagnosed a year ago. I too noticed an increase in breathlessness over the past six months which was raised with GP and MPN team. It was only in the course of being treated for pneumonia a couple of weeks ago that a large lung lesion was discovered. I'm not wanting to be alarmist just encouraging a full exploration of such symptoms and all possible causes.

[Heather270240]

I have had spells of breathlessness since I was diagnosed with ET 4 years ago. Iniatially I was on HU but it was stopped when breathing problems started. I was then given Ruxolitinib 15 mg twice daily. Breathing ok until 3 months ago when the problem returned. I went to A&E last Friday at the insistence of my Haematologist because it was so bad . Had blood tests, all normal, chest x-ray clear CT scan came back with the following comments "scan shows ground glass shadows which suggests they are inflammatory, caused either by drug reaction or secondary to a viral infection". It didn't require any further investigation and I was sent home with Apixaban with no further action. A&E wanted to stop the Ruxolitinib but Haematology said no as that wasn't the cause of the problem!!!. I supposed to be having a leg operation on the 11 April after waiting 12 months but while I have breathing problems it won't go ahead. I have found for some reason Haematologists will not accept that MPNs and the medications have side effects much worse with some than others. I'm sorry to say this also includes "The Specialist". So my advice is insist you have your breathing problem investigated.

[poly2 in reply to Heather270240]

I'm sure that most of us on this forum feel the same about being pushed from pillar to post and not being listened to. I'm also on apixaban due to previous portal vein thrombosis. I'm hoping that when the gp speaks to me and when she gets in touch with the haematologist it will get sorted, I'm not one for being fobbed off so I shall insist it gets investigated further. I was also told by haematologist that the pv would most likely to have progressed to mf but doing another bmb wouldn't change the treatment. I'm also struggling with arthritis of the spine and had to give up work so feeling really down at the moment. This is just another add on. Thank you all so much for your advice.

[EPguy in reply to Heather270240]

Ground glass in lungs is well known to associate with Covid, less so with Omicron, but did they rule that out?

[Heather270240 in reply to EPguy]

Most definitely. It started before COVID.

[EPguy in reply to Heather270240]

Good to be sure what it isn't, that's always a start.

I've also had mild breathlessness since my MPN Dx. Since switching from HU to Besremi no obvious change. But many of my symptoms are wrapped in my Covid and long covid from early Mar 2020.

[Mujer in reply to Heather270240]

I too was taking Ruxilitinib but had to be weaned off due to breathlessness. It was at a point where I was afraid to go out in case I didn’t manage to walk home. Now back on hydroxocarbonide but still get breathing difficulties - some days worse than others. Next blood tests will check vitamin levels, iron and B12.

[Heather270240 in reply to Mujer]

I was originally taking HU when the breathlessness started, switched to Ruxolitinib but problem has returned. Like you I am afraid to go out even to walk the dog. I used to cycle at least 80 miles a week at present I can't cycle at all but no one will accept it's the meds. I was told that a lot of people can only accept small doses of these medications before toxins build up and cause the breathlessness and other side effects which made sense in my case. Who stopped your Ruxolitinib? My Haematologist Guys is quite adamant that Ruxolitinib is not causing the breathlessness.

[Mujer in reply to Heather270240]

It was my haematologist who stopped it. Added to the breathlessness I had put on weight and my blood readings had dropped dramatically too. I don’t have an MPN specialist as I live in Scotland and there is only one who consults at the Beetson in Glasgow. I don’t even have a clinical nurse specialist either. I have depended on the MPN Voice conferences for support but these had to stop due to covid. It’s been a lonely path, Heather but I am not giving in. Stay safe. X

[Heather270240 in reply to Mujer]

Poor you. I expect you are glad of the support from this forum. Thinking of you. Heather.x

[Mujer in reply to Heather270240]

Thanks Heather but with my situation as it is it has only served to make me speak out at every turn as there is no doubt I am not alone. My haematologist is lovely but funding seems to be one of the difficulties. He is well aware of how I feel. I am not for giving in just yet. Lol. X

[Wyebird]

I’ve linked my shortness of breath to fatigue and anaemia. All to do with my ET.As is quite a lot of blood readings. Hydroxicarbomide not only lowers the platelets but other blood components. Do get checked out by the doctor though.

[ciye]

My haemo also insists neither my ET, hydroxy or interferon cause breathelessness, yet I am breathless just doing normal things, the fatigue is awful.. Haemo says speak to gp, who advise me speak to respiratory who advise... and round and round we go.

[Hopetohelp]

When I was a bit breathless my haematologist ordered a chest X-ray which was thankfully normal and tested B12 and other things. My point is she didn’t send me back to GP, she investigated it herself. Some haematologists are much better than others. I thought she was an mpn specialist but I am not sure now but she seems to know what she is doing so I am happy staying with her. Might be worth changing haematologist if you don’t get the answers you need. Good luck

[gvibes]

I agree with above posts... clearly breathlessness is typically related to the MPN or its treatment. Breathlessness, which I have been dealing with as well, would seem to be related to your ability to get oxygen from your blood to portions of the body that need it. Once we have an MPN, this once, well-oiled system is compromised first by the disease and then by the drugs we take. For example for my p-vera, just managing hematocrit below 45, puts my red cells and hematocrit quite a bit lower (10-15%) than my pre disease baseline. It seems the blood is further compromised by lots of immature cells from the unchecked production of red cells (p-vera) and the blood "stickyness" caused by all this. This will effect your ability to get oxygen to where its needed in the body. It seems to me that this deficit results in the need for increased oxygen through breathing. We have also aged and lost some of our conditioning as we deal with the disease. - maybe another factor. Fatigue would also seem to be related to this compromised oxygen distribution system.

It feels like this (in milder cases anyway) is something we just have to deal with. Maybe management of drug doses or type of drug will help some. I'm trying to keep exercising and maybe start a yoga practice focusing on breathing.

Not as sure how this works for ET.

Please tell me if I don't know what I am talking about.

Best to all. Take care....

[SilverET]

Hi Poly2,

Were you having the breahtlessness before being on apixiban? I was on apixiban for a while and found I had significant side effects while I was on it that disappeared if I came off it for a month (with specialist approval ) and then began again almost immdediately after resuming treatment with it. It is not well documented and very rare as a side effect but I was finding I really had to concentrate to draw air in deeply to stop feeling like I couldn't breathe properly. It also caused me to suffer from disorientation and mental confusion. There is one paper I have found that documents this in one other patient. As soon as I stopped taking the apixiban everything returned to normal including the breathlessness. It is a horrible feeling so I hope you find something that works for you but is worth trying to figure out when you started getting these symptoms as it can narrow the possibilities.

Regards,

SilverET