A recent diagnosis of polycythaemia.

[Strauss]

I am new here. I was given a diagnosis of polycythaemia in January this year, and was told I had had it for quite a long time. I had never heard of it, let alone been told I had had it for a long time. I clearly looked it up, and and found this site and have been reading posts from a lot of people since.

I went to my GP because I was SO tired, and had a myriad of symptoms which have been described time and again by many people who contribute to this site.

My GP has been very supportive but has been confused by my "complex picture". She eventually did get in touch with a haematologist in our local hospital who specialises in MPNs. He requested various blood tests in April which included Jak2, erythropoetin levels, and B12. He said the results of these would determine if he needed to see me. My B12 came back as deficient, with a reading of 122 and I opted to start with B12 tablets because I was concerned that my HCT might increase quickly if I had injections.

I recognised when I researched B12 deficieny that many of my symptoms were classic. My GP sent him all the results which took a while as the JAK2 took about 6 weeks to come back

I saw the Haematologist recently and he said my JAK2 was negative and my erythropoietin was "within normal limits", so told me I definitely didn't have pv, but he was ordering whole body scans to totally exclude secondary causes. He also said he wanted me to have injections for the B12, and would confirm that in his letter to my GP.

I have to admit that I am confused. Does anyone else have B12 deficiency with polycythaemia? If so, did injections increase red cell production?

[JSKly]

Hello, I understand from what you have written that the Hem says you don’t have PV. Are you self-diagnosing from things you have read? It sounds as if your fatigue is due to something else. It would seem best to do as the hem says. Other things can cause fatigue as you are probably aware.

Wishing you well.

[Susana7]

Hi, it is good news that you don’t have PV, as that is a chronic blood cancer that can be managed well but not cured. As for polychythaemia, if you can find what is causing it, then it can hopefully be cured. It sounds like you are in good hands and your haemo is trying to find what is causing the raised HCT. I have PV but don’t have B12 deficiency, Good luck, I hope you get more clarity soon about the causes of your polycythaemia.

Susana x

[hunter5582]

There are a variety of issues that can cause secondary polycythemia that require a series of testing to rule out all of the various possibilities. Blood cell production can be driven by anything from exposure to high elevations, smoking, to a serious medical condition like renal clear cell carcinoma. You are really lucky to be in contact with a MPN-specialized doc. Most docs, even hematologists, do not have this expertise. I am sure the doc will look at other mutilations like CALR and MPL as well as other possible explanations for what you are experiencing. it does really help to educate yourself to better advocate for what you need, but Google University can be a bit alarming and misleading at times. All the best to you on this journey.

[mammared]

I welcome you to this site. Happy that you are in the care of a Specialist. You will find some help here and the folks are very empathic and understanding. Most of us have been where you are and have felt that uncertainty that you are feeling right now. While it is difficult to be patient, sounds as if your Specialist is following the diagnostic algorithm in search of finding an answer to your issue. Wishing you all the best in your quest for answers.

[Karen1970]

Hi. I have PV and have B12 injections 4 times a year. It doesn’t affect my blood counts, I also have to take 3000iu of vitamin D nightly again bloods don’t change because of it x