I was diagnosed with PV in Dec 2015. I used to be quite active on this site and received so much reassurance and good advice in those early confusing days. Since my husband's death in Sept 2020, I have not been active on here, however I read posts occasionally. I have not had a face to face consultation since before lockdown. This morning I had my telephone chat with a person who did not give me the impression that she specialised in haematology. Luckily I have kept well on a dose of 1gm of hydroxycarbamide daily and maintaining a hematocrit of 39 ish for a long time. Today my white cell count is 7, haemoglobin down from 125 to 114, hematocrit down from 397 to 356 and platelets from 547 to 478. Should I be concerned? The person to whom I spoke did not offer any advice other than more iron rich foods and rest. I asked about a face to face consultation and she said that my next appointment in 3 months could be arranged as face to face.
Face to face consultation: I was diagnosed with PV... - MPN Voice
Face to face consultation
The PLT and WBC numbers look OK. The erythrocyte numbers indicate a very mild anemia (HGB<120, HCT<36% for female). In the context of PV, increasing iron intake is something to be discussed with a MPN Specialist. It may be a viable plan but consultation with a MPN-expert provider is advisable.
It may be that you will need dose modification of the HU or consideration of an alternative treatment strategy. This would be ideally done in a face-to-face consultation with a MPN Specialist hematologist.
Thank you so very much Hunter. I knew I could rely on you for sound advise. I have been more tired and less focussed of late which could be related to the mild anaemia. Thank you again, I feel reassured.
I would ask for a second opinion from an MPN specialist .I would also insist on face to.face appointment with your local hospital there is now no reason for them to refuse this.
Thank you, hopefully I will see a specialist at my next appointment. In the meantime I will seek medical help if I feel it is needed and maybe request an earlier appointment.
You need to be a Little demanding to get anywhere with the NHS sometimes!!
I didn’t have a face to face appointment for over 3 years, even though I was getting more and more anaemic and had to ask to see a doctor instead of phone calls from a nurse. I think it’s detrimental to patients NOT to see doctors in person at least occasionally. You certainly have to push for things in the NHS, including asking to see an MPN specialist.
Thank you Lizzie, you are certainly right about having to push to have face to face consultation.
your counts don’t look a issue so far but if the trend continues down it needs checking, seeing a expert is always a good idea to check if anything is going on , the expert can then set direction and from time to time keep you and your Haem going in the optimum direction.
Thank you so much. I appreciate your comment.
Have I progressed to PV?
Encouraging consultation
iron overload 
PV Haematologist Discussion**UPDATE**
Not a good consultation
