I had a consultant appointment on Monday 16th Sep. I had been taking interferon from March this year and since have had 5 nosebleeds. The last one resulted in me having to attend A&E as it would not stop. Roughly 6 hours after it started they managed to stop it. I decided to stop taking the interferon. I had told the CNS this at the time but it appears the message wasn’t passed on. The consultant told me that interferon was not the cause of the nosebleeds but as I hadn’t been getting on with he’d recommend I took Hydroxycarbamide. I was concerned that this may result in the same issue but was told categorically it wouldn’t. I decided to not take Hydroxycarbamide.
I mentioned that I had been off work due to not been able to concentrate on the simple things such as writing emails. I was told this was psychological and nothing to do with Polycythaemia vera (PV) or interferon. He also told me that my fatigue was noting to do with Polycythaemia vera (PV), venesections or interferon. The first time I ever suffered from fatigue was after 6 months of near weekly venesections. This resulted in my ferritin dropping from 225 to 24 in three months May-Aug 2022). Since then it has not been above 23 and has mostly been around 14-17.
I left the appointment confused and also thinking that maybe I’m wasting their time attending these and that they could see patients with real issues instead. Currently I’m unsure how to move forward although I am thinking of asking my GP for a referral to another haematology team.
I have left a message with the CNS but so far I have not received a reply.
Hi @Adw265 I am sorry to hear that you have been through so much since we heard from you last.
Perhaps write a clear diary of events, sort of like you have on here, and your fears, thoughts, questions and practicalities and then discuss it with your CNS and/or your GP and if you are still not satisfied then request a referral to another haematology team, which would also give you another perspective.
Please do let us know how you get on and take lots of care of yourself.
Thank you for reaching out to us. I am so sorry to hear that you are feeling this way.
Unusual bleeding such as nosebleeds and fatigue are well known symptoms of Polycythaemia vera (PV) Symptoms of PV. I am sorry your symptoms have been dismissed by your consultant and you were made to feel that they were not real issues.
Hey there @Adw265, just wanted to chime in to say that hours-long nosebleeds are not something psychological, cancer-related fatigue is not psychological, and I’m so sorry you’ve been treated so poorly.
You are within your rights to get referred to a decent haematologist who cares about you and can treat your Polycythaemia vera (PV) adequately, and certainly without gaslighting you into thinking it’s something you’re doing wrong. Your doctor is wrong, and trusted global blood cancer research on Polycythaemia vera (PV) and other MPNs show this.
Ask yourself, would you want to go through another health crisis with this doctor tending to you and being in charge of your life?
Check out PALS as they can help you liaise with this terrible doctor who should really know better. Personally I would get referred to a different haematologist.
Please let us know how you progress and what support you’re offered going forward.
Hi @Adw265 and @Duncan we are not medically trained on our forum and cannot comment on the advice or treatment given by a medical person.
Be ever so kind to yourselves and please do keep posting how you are getting on
Good point @Erica, thank you. I should always preface my rants by pointing out I’m not a doctor!
This does seem a particularly poor example of a haematologist sharing inaccurate Polycythaemia vera (PV) information, from what my own haematology specialists have told me since my own diagnosis with Polycythaemia vera (PV).
I wonder if @BloodCancerUK_Nurses could confirm that the current medical understanding of Polycythaemia vera (PV) is that nosebleeds and fatigue are definitely known side effects? I’d hate to lead anyone astray!
When it comes to treatment of Polycythaemia vera (PV) I don’t think it is a case of one size fits all we are all individuals . Ihave just had a telephone consultation with my haematologist, it had to be postponed for a month as the medical centre put my blood in the wrong tube.
It seems my haemaglobin count is low and is. Probably responsible for the waves of utter exhaustion I have been experiencing due to anaemia. My Hydroxycarbamide dosage has been reduced and another consultation in 6 weeks time. It is difficult to remain positive all the time, social services have recommended that I needed 18 hours care a week but my attendance allowance doesn’t even cover half the cost and am finding it impossible to manage without using what little savings I have left. My dentist recommends refilling one of my teeth as it may become infected. It certainly has Not been my best week. Hopefully the weekend will be better as I am lunching with a very old friend on Saturday. MyJack Russell has taken herself to bed, so I guess I should follow her example. Good night. Marylin
Oh @Marylin what a time you are having and then the dentist on top of the medical checks.
Yes, your Jack Russell seems to have the right idea.
Have a brilliant lunch with your friend on Saturday.
Thanks for your comments. Just a quick message to say that @Fiona_BloodCancerUK has indeed confirmed above that unusual bleeding such as nosebleeds and fatigue are well known symptoms of Polycythaemia vera (Polycythaemia vera (PV)) Symptoms of PV.
CNS called today but it was difficult having a conversation as there was quite a delay. We have agreed to chat on 30th Sep.
Thanks for your support and advice. It is very much appreciated.
Take care All and have a good weekend.
Adw265 sorry to hear about your experience with the consultant, it is horrible when you feel that you are not being listened to. Glad you got to talk to the nurse and that you have another call coming up.
Marylin yes you are correct its not a case of one size fits all. I hope the reduction in hydrea helps. Lunch with an old friend sounds great. I am not familiar with the english health system but I hope someone can advise you on how to get assisstance.
Hi @Adw265 sorry to hear about the delay on the phone, I hope the call on the 30th call will be better.
Be very kind to yourself and please do let us know how you get on
I spoke to the CNS last Monday and she was apologetic that we had left the recent consult confused by the information given by the consultant and also that my concerns, regarding nosebleeds, were not really listened to. She said that the consults were necessary to ensure that treatment and concerns could be discussed. She also said that she would speak to the consultant.
They have agreed to go with venesections until I feel comfortable with taking Hydroxycarbamide or unless it becomes necessary.
Glad not to be giving inaccurate advice 
