Any ideas about PCV symptoms and diagnosis?

[Thembe]

I have hovered around slightly elevated Hb, rbc and haematocrit for 3 years. Recently extreme fatigue sent me back to my GP. PCV was suspected but EPO level is in the lower part of the normal range and JAK2 is negative. No sleep apnoea, and no other causes which could lower blood oxygen levels. Covid 19 lockdown precludes further testing in the meantime, but the fatigue, headaches, nausea and dizzy spells continue unabated. Is there anyone who has some deeper insight and can help dispel my feelings of loss of vitality and hope for the future. I am 61, work fulltime and have always been quite active. However I currently struggle to envisage how I can continue working and functioning generally.

[Mazcd Partner MPNVoice]

HI Thembe, it is a shame that you can't have any further tests carried out to determine the cause of these symptoms and to give you a definite diagnosis. I would advise you to read as much as you can on our website about PV to give you an idea of what it is and how it can be treated.

mpnvoice.org.uk/about-mpns/...

It might also help you to read about the symptoms and treatment options available. I would also suggest that you read some of the real stories of people living with PV and how they cope with side effects, and working.

mpnvoice.org.uk/living-with...

Best wishes, Maz

[Thembe in reply to Mazcd]

Thankyou Maz, I appreciate your reply and have used the links provided to get a clearer picture. From your experience, do you think I could ask for a bone marrow aspiration? Would it be the final possibility of gaining a definitive diagnosis? Or could it also leave me hanging, not knowing anything with any certainty?

[Mazcd Partner MPNVoice in reply to Thembe]

Hi Thembe, glad the information has helped, with regards to a bone marrow biopsy, this might help,

healthunlocked.com/mpnvoice......

[Heidi-W]

Hi, the EPO is usually low or normal in PV but tends to be normal or higher in secondary PV- usually physiological and associated with smoking. You can still have PV if you are Jak -ve and with a lowish EPO I would def ask your GP to refer you into haematology -even if they can't see you for a while they can ask for a blood film and look remotely at your bloods to help get you the diagnosis.. Good luck and keep drinking plenty as good hydration is really important if it is PV.

Heidi

[Thembe in reply to Heidi-W]

Hi Heidi, thankyou for your reply. I have been to the haematologist who seems to believe that sleep apnoea is the cause of secondary PV. But I have since undergone a sleep test which shows there is no sleep apnoea. Also I have never smoked. Meanwhile the Covid 19 lockdown is getting in the way of further visits. (Perhaps I should be more insistent?). Your point about staying hydrated is well received,thanks.

[Heidi-W in reply to Thembe]

Ah I'm glad you are under haematology although not getting many answers. I think sadly not all medics listen to the actual symptoms people with MPNs have and just focus on the blood results. Some people can feel quite well with elevated levels but others can feel rubbish.

Have your levels stayed steady or have that crept up more recently to account for the symptoms? I know I probably had some vague symptoms for a couple of years but it was only when the Hb/HCT shot up that I started to get the headaches/dizzyness/fatigue/aquagenic pruritis and brain fog.

I would def keep in touch with your GP if the blood levels have remained the same for 3 years to explore other things causing your symptoms. Headache diaries can be helpful. Presume your BP and other bloods like thyroid/vit b12 etc ok.

Anyway good luck and keep in touch and def worth exploring hunter's list of recommended MPN specialists.

[hunter5582]

It is hard to say what is going on and whether this is a primary or secondary PV. I think you are correct in seeking further testing to figure it out. Something to be aware of is that not all docs, even hematologists, have the KSAs you need regarding MPNs. The MPNs are rare disorders and many hematologists only see a handful in their entire careers. If you have an atypical MPN, than the docs you have been seeing may have never seen anyone like you. Not the best way to be unique! The good news is that this can get sorted out. Here is a list of patient-recommended docs with MPN expertise mpnforum.com/list-hem./ . Do whatever it takes to see a doc who has the knowledge you need,

The constitutional symptoms you are having sound more troublesome than the mild erythrocytosis. That is actually pretty common for many of us. It can be a bit hard to sort out, but I wonder how much the worry and struggle to figure it out and deal with it is making you anxious and perhaps a bit depressed. Many of us end up down that dark rabbit hole and it is not a good place to be. Please do know that there is hope to get this all dealt with and to get yourself into a better place.

Please stay in touch and let us know how things go. We are stronger together. As you learn more about your situation, your journey may benefit others who can learn what you learn. You do have the power to make things better for yourself and for others as well.

All the best to you.

[Thembe in reply to hunter5582]

Thankyou so much for your informative, thoughtful and encouraging reply. Moroever, finding the name a haemotologist in my part of the world on the link you provided, has given me some hope that if I can't find answers within my current circle, I can reach out to someone who has experience in this field.

I am fighting the downward emotional spiral, but my current fuel for all of life's requirements, is simply determination and not physiological. Although the lockdown has given me a short reprieve (a blessing in disguise), I had hoped to regain some energy with good rest, hydration, diet and mild exercise. But this sadly has not really made much difference.

It seems I sit on a knife edge, on the one hand believing it's 'all in my head' therefore I can/should manage it and on the other hand feeling foolish for being so focused on a physical cause. All the while, knowing that the blood results do tend to be saying something.

This site is very helpful and I thank all those people who have contributed in some way, as well as those who have responded directly to me. As you wisely say, we are indeed stronger together.

Take care.