I have recently been diagnosed with both Polycythaemia vera (PV) and pernicious anaemia. I thought anaemia was associated with low hemoglobin and so really surprised to have both at the same time. Has anyone experience of both?
I have had my first B12 injections for my anaemia and my symptoms have got worse. I guess my anaemia was masking the Polycythaemia vera (PV). I have my first venesection next week and so am interested to see how that afect both my Polycythaemia vera (PV) and my anaemia.
A really good question @spedge and I am sorry that I cannot help you, perhaps others can and I will copy this to @BloodCancerUK for you.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I am really glad that you have posted.
I bet that your diagnosis was a great shock to you.
All those medical terms to get your head around.
I found it helpful to write down all my fears, questions, symptoms etc to ask someone at my next medical appointment.
Do you have any support from family and friends, well you are now part of our forum family anyway.
Aren’t we complex beings.
The main thing is that you really look after yourself and take care.
Erica. Many thanks, i have already had a very helpful email from Gemma with loads of information. I am getting good support from my family and fortunately my symptoms are mild at present.
However I get the feeling there is more to this diagnosis. I have just had a letter from my consultant with the results of my ultrasound. They show liver nodularity, so not sure where this leads. This doesn’t sound like Polycythaemia vera (PV) or anaemia.
Hi @spedge I am glad that you have good support from family.
It sounds as if you have more questions for your list, why do consultants letters have information we cannot understand in them.
They have no idea the impact emotionally and physically that they have.
Be kind to yourself and keep posting.
Thanks Erica, i think i might try my GP to see if they can shed any light.
Ive been struggling with my anaemia since I was 14 and having low iron.
I was diagnosed with Polycythaemia vera (PV) in August 2020 and agree on reflection it mayve masked an earlier diagnosis but according to Google Polycythaemia vera (PV) without treatment has a prognosis of 2.5years.
I had numerous venesections before moving to treatment but my iron is still been low, ridiculously low at times which I think the symptoms of being aneamic is more prominent than having blood cancer.
Though Im given iron tablets they simply don’t work and the only thing that did was having ferinjects (iron transfusion) but the problem is that my haemotologist is against having this as an increase in iron will raise my haematocrit levels and that is more important apparently.
I totally empathise with your position and though you’re early in your diagnosis you are not alone with this.
Happy to stay in touch if you need it
@Rammie18 , it is good to hear from you. I am sorry you are struggling with the conflict between your iron levels and Polycythaemia vera (PV). I am very fortunate my symptoms have been very mild. In fact I only got a diagnosis by chance when being preassessed for a shoulder operation, which was cancelled because of my high Hb.
My anaemia is due to my inability to absorb vitamin B12 through my diet. So I have regular B12 injections to compensate. It was when I started these injections that the symptoms of my Polycythaemia vera (PV) started. But now I have started venesection I hope these symptoms will reduce.
I can’t believe that I acquired both conditions independently and simultaneously and that they seemed to have cancelled each other out to some extent.
I think its all happened so suddenly and so few symptoms that I haven’t yet realised the full impact. I guess it will take time and become more routine once my haemocrit is down to my target.
But its great to know you and the support team around if I need you.
Look after yourself
Both my parents take b12 injection along with a lot Asian people so it could be something that’s underlying
It’s things like this that make having access to your blood results and having regular checks is so important as doctors tend to request blood test for a specific thing and just look at that rather broadening their horizon.
I noticed my potassium was increasing over a period of several months gradually which has now got my med team looking into it more
I had heard anaemia is more prevalent in some communities but i am told mine is acquired not inherited.
I see its important to follow your test results. I am struggling to get mine. My GP claims not to have my hospital results and i have to keep asking for mine. I will meet my consultant for the first time next week, previously its just been by phone, so hopefully i will learn more and get a a full picture.
It’s crazy that the system has two separate files, the NHS app only holds data from your gp, but you can ring up your go surgery and request from the desk or doc to upload your results so you can see it. It takes a bit of time explaining it all to them but they can do it and it’s very useful to keep an eye on.
Gemma the nurse here is going to be doing a webinair session on reading your blood tests… hoping I’ve not missed it but their is definitely a post where you can post questions and queries regarding all things blood tests there
Thanks i realise i have to pay more attention to my test results and assume less everybody is going to do that for me. I will certainly attend Gemmas next webinar as they sound really helpful.
Hi @spedge yes good advice and info from @Rammie.I ask the secretary at my surgery to e mail my results, I print out and file, they used to print out for me ,you are entitled to get your copy then you can keep track for yourself. Re the Hospital info my GP can access this with a password so I expect yours can too .
All the best
Thanks @Bannanacake i clearly need to get more organised. I’ll talk to my GP surgery and the consultants secretary next week.
Hi@spedge ,thats great and re questions to Gemma,if you message @GemmaBloodCancerUK with your question on here you are still in time ,I haven’t heard when the webinair is but Ive asked her my questions.I hope youve got yourself a large folder for all your notes ,laughing
Hi @spedge My old GP told me soon after my diagnosis for me to take responsibility for my conditions.
I always make sure all medical departments know of my other conditions, medical history, medications, allergies and even family history. This also applies to dentists, opticians osteopaths, gym etc.
As I keep on saying we are complex beings.
Look after yourself and aren’t we lucky to have @GemmaBloodCancerUK
@Erica, yes I am realising that I am the only one present at every meeting and have the most invested in a positive outcome. But they don’t make it easy do they?
No, they certainly do not make it easy @spedge, we often say they missed that training course module !!!
Hello there @spedge, I am more than happy to answer any questions you have or at the very least point you in the right direction. At present there is no concrete plans for a webinar but we are keeping the thread open regarding blood counts but you can always privately message me on the forum if that is easier.
When you do speak to the Haematology team, do ask how best to access your blood counts, they should include in your clinic letters but they can take a while. Perhaps you can ask if the Clinical Nurse Specialist can enable you to receive them for your reassurance.
Hope this helps and so contact us iof you need more support: How to contact Blood Cancer UK | Blood Cancer UK.
@GemmaBloodCancerUK many thanks for your advice. I’ll take this up with the team when i for for my next venesection. They are always very helpful and caring when i go.