Morning everyone and happy Easter if you celebrate.
I’m so grateful for this board and the information and support you all share. Thank you.
I asked my gp to refer me to Guy’s and a telephone appt has come through for Tuesday 19th. I was confirmed Jak2 positive PV at Christmas and my haematocrit has been controlled by venesections. My platelets hover around 700-800 though and my haematologist has suggested I go on hydroxy to bring them down. I have not been told I have ET too. Do I?? I want to talk to the Guys team before I start any other treatment although I realise hydroxy is probably my best way forward.
Could anyone who has had an initial appointment with the Guys team let me know how it went please? Am I now under their team or is this a one off appointment? I am not keen on my haematologist. One of the reasons for this is that I had an unexplained cardiac arrest 11 years ago aged 41 and he keeps referring to it as a heart attack despite me correcting him and my gp sending my discharge notes.. He thinks it must have been the result of a stroke despite the fact that I was in hospital for 3 weeks following it, underwent numerous tests in Brighton and London and there is no mention of a stroke in my notes. It was an electric fault they think. Anyway, I’d love my treatment plan to be devised by Guys. Can I ask for this? Thanks all xx
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SarahPV
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Hi. I've only been seen by the Guy's people once so far (I was, and am, under their haematology unit in the same building, as well as the MPN unit), but the doctor I saw was super, and went to find me patient information leaflets about the condition, which, of course, I'd never heard of before. I'm sure they will answer all your questions, and want to be responsible for your continuing care, but you can double-check that with them when you see them. Be warned - they take blood about 45 minutes before they see you, at the time they have told you to report, so wear something suitable and bring something to read!
Thank you so much for your reply. Sadly only a telephone appt. Yet to meet a haematologist! Yes, will have my questions ready. Hope it will be an MPN team member I get to speak to. X
It is good news that you are being seen at Guys..They are on of the premier MPn clinics anywhere. Not sure whether you will be switching your care there or whether they will be in a consulting role. I should think that would be your decision to make. It could depend on how far it is to Guys for you. I see a MPN Specialist at Johns Hopkins, which is about 2 hours aways. This doc consults on my care plan. i also have a wonderful local hematologist who handles my ongoing care. This arrangement works great.
Like you, I experience both erythrocytosis and thrombocytosis. This is a function of how PV can present. It does not mean you have ET and PV. PV can present with elevations in all three types of blood cells, erythrocytes, leukocytes and platelets.
One thing to know is that venesections can increase the thrombocytosis. Your body reads a venesection as a blood loss, which can trigger platelet production. In addition, venesection induces chronic iron deficiency. this is the purpose as your body cannot make erythrocytes without iron. That is why it helps to treat PV. Unfortunately, iron deficiency can also cause reactive thrombocytosis. This is part of the balancing act of treating PV.
If I did the math right, you are about age 52. That is a bit younger than most MPN Specialists would start someone on hydroxycarbamide. When cytoreduction is indicated, most MPN Specialists would recommend one of the interferons (Besremi, Pegasys) for someone your age with PV. Some MPN Specialists now recommend the IFNs for most patients with PV. The docs at Guys can review your options with you should you need cytoreduction. This seems likely given your history of cardiac arrest.
The MPN clinic at Guys will certainly look at your cardiac history in their assessment. There is a possible link that should be considered. It is certainly a risk factor even if the issues are unrelated. Here is on article on this, just as an example.
Hi Sarah,You have had great advice already. I would like to highlight one point. For your first consultation I think it would be helpful to go in and see them. Discussions on MPNS focus on blood results and your other symptoms. If you were to have your bloods done at Guys they would have the results to discuss with you. Due to Covid I have phone appointments with Guys. I have a blood test at my local practice when Guys have instructed them to do so. Then I have to get the practice secretary to forward results to Guys. It's too long a story to explain all the pitfalls in this. I always get a print out of my results and have this on hand. I signed up to NHS app and I can read them there too. Bottom line there is no liason on records between my local practice and Guys or vice versa. Even though Guys send a report each time I have a phone or in person consultation my records are not updated. I am going to take them to task on this this week. So for your phone appointment you will need all your blood tests results to hand. I put mine on Excel and I can easily see the changes. Last point: I have PV since 05 and after a year of venesections my platelets and white count were rising excessively -reason in Hunter's post. I managed to get on Interferon. I believed it to be the best option and still do. It wasn't an easy ride but put simply it works. Let us know how it goes.
Thanks for useful advice . I have phone appointment at Guys next month . Do you think I could email them some information before appointment so not wasting time during appointment?
Prior to my first appointment at Guys (very recent) I emailed the CNS at Guys my two most recent blood test results along with my initial (2016) Jak2+ results and ET diagnosis confirmation.
That sounds like a good idea. Why oh why aren’t all our results in front of these doctors before we speak to them.! My haematologist kept asking for my results from different dates and I didn’t have them in front of me because I thought he would!
If you have access to your initial diagnosis and some recent blood tests you could still email the CNS these results in the hope they can be accessed in time for your appointment. It is helpful to the consultant.
I have a telephone appointment with Guys in May, so obviously have to arrange a blood test with my GP. It’s impossible to get through on the phone lines 🙁 So, I wrote to the GP (delivered it by hand) explained everything and I had a call back to arrange a blood test for early May. Hopefully I’ll receive the results to email over. They’re always so slow to update my patient portal, but I’ve made the GP aware of this too.
Hi MPortI would love to go in and see them but have only been offered a telephone appt. Yet to meet a haematologist since diagnosis. Thank you for your advice. I too have the nhs app but don’t think my most recent bloods go on there. I have blood taken with my venesection at the hospital and if my haematocrit on target I have it taken at my gp surgery a fortnight later. Early days. I will ring my haematology dept tomorrow and see if they can give me my latest results. 9.30 am appt at Guy’s so we’ll see! Many thanks for replying. Really grateful for this community. Feel so alone sometimes. X
Sorry to hear it is telephone only, but better than nothing. Suggest you inquire about a tele-vieo appointment instead.. They are just as easy to set up and definately better than just a phone call. Every provider I have offers tele-video therese days.
I’ll ask, Hunter. I agree it’s nice to see someone’s face. When I first met my haematologist he seemed so dismissive. I couldn’t see his face but perhaps if I had been able to I would have seen that he was carefully considering my every word!
Hopefully so, but the reality is that it is more humanizing when you can see them as you talk to them. Doctors are human beings who respond differently to people when they can actually see them. It is just human nature.
Hope you get good answers from your appointment with Guys.
You can ask the question at the end of your consultation with regards to the following options.
a) transferring your care completely to Guys.
b) second opinion.
c) shared care.
I recently asked for a referral to Guys. I was also unsure of the process. I emailed the CNS prior to the appointment and discussed the options. I decided to opt for ‘shared care’ simply due to the 150 mile travel involved and Covid restrictions. I am happy with that option for now.
Ah that’s interesting. I’m in Brighton, so only an hour down the track. I will definitely ask for the options availabyo me. I’ve felt so vulnerable. Don’t know what you can ask for. That’s why this forum is invaluable. I do like having my venesections locally and have felt supported by the team at Brighton. The haematologist not so much as I’ve said! Thank you all again. I’ll let you know how I get on. X
I actually got to speak to Dr Claire Harrison. I hadn’t dared get my hopes up so nearly fell over when she introduced herself.
We spoke about my treatment options. She asked about my cardiac history and is going to request more info from my cardiologist. We areed that we need to establish whether I am a high or low risk patient before we decide on whether medication is the way forward. She said if we did go down the medication route I could decide which option I thought best for me once we’d discussed the pros and cons of each. We are going to speak in 6 weeks after my spleen scan/ once she’s seen my notes.
I felt like I was being listened to instead of being dismissed and dictated to. I would urge anyone in the U.K to ask their gp to be referred to an MPN specialist if you are not happy with your haematologist or even if you just want another opinion. Thank you to this forum for giving me the confidence to tell my gp what I wanted doing instead of just asking him. X
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Some more advice please!
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Diet Advice for ET please
