My platelets are now under 600, just! A big improvement from when they were over 1000 a few weeks ago. Local doctor wants me to carry on with Momelotinib and hydroxy, plus EPO injections. My haemoglobin had dropped from 109 to 98 though, still a lot better than the 75 - 85 it was for a very long time.
My doctor is obviously miffed I contacted Guys when my platelets were over 1000 and he said that was ok, I didn’t think so! He said there is no need for me to be in contact with them! I think there is every need!
I have a phone consultation with them next week, I asked for my latest blood results to be sent to them, he said I should be able to get them on my NHS app, I can’t, hospital results aren’t available, just GP’s. So I’ll have to ask the specialist nurses to send them, that depends on which one answers the phone whether they get them.
I can get all details of any contact with Guys on their My Chart, but getting anything from my local hospital is nigh on impossible.
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lizzziep
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congratulations, sounds good, any doc who is miffed because you are trying to get the best answers to your situation has got it wrong, your health should be his priority not his ego, he should welcome any input from Clair Harrison and Co, everyone knows they are fantastic there.
Great to see your results going on the right direction.I've the same problem with my local heam still miffed with the Guys referral!!! My GP will download the bloods for me and then emails them across to.Guys , maybe yours would be willing to do so?
I called in at my GP’s surgery today and they said they don’t get any results or information from haematology. I have no idea why as I am also under another department at the same hospital for something else and they send letters to the GP and copies of those to me.
Is the GP going to.chase it for you?( Your medical records are incomplete at the surgery and that could be dangerous.) Or are you going to have to battle with your heams Secretary?
I’m already armed with a sharp stick to poke the secretary with, that’s if anyone actually answers the phone of course. I’m going to make an appointment with the GP to ask about it. You’d have thought they’d have picked it up. I actually bumped into him a few weeks ago and he asked me about the MF, so obviously he has some info.
Good news on the PLTs. Too bad the doc is letting ego get ahead of patient health. Good docs encourage a second opinion. Expert opinion from a MPN expert team should always be welcome.
GPS do not have the required knowledge about MPNs as our conditions are so rare. I cannot advocate this enough - as even specialists who ARE haematologists in other areas ( eg lymphomas) do not have the requisite knowledge. I know this to my detriment as had a heart attack when the wrong medicine was approved!
I insisted on finding an MPN specialist and when I did - he advised he would never have put me on the meds the lymphoma specialist had prescribed.
My own excellent MPN specialist that I have had now for 4 years in Liverpool is not unhappy with me if I wanted to go to Guys to see Claire Harrison- he has told me that! But I have no need as he is an excellent specialist.
If you live in the North of the UK you could ask to be referred to him in Liverpool Clatterbridge Cancer Centre which is where I go. His name is Naumen Butt- he is brilliant along with Rachel Wells who is also brilliant!
Stick to your guns though if you want to go to Guys - you have a choice! Good luck!
Hi, you can ask for your bloods taken at hospital to be sent direct to Guys. Either the hosp can do it or your GP surgery can do it when they get the results sent to them. That’s what I do. X
I have had them sent to Guys from the hospital before, I checked with my GP’s surgery today and haematology aren’t sending any results or information tmy GP! It depends which nurse is on whether the results will be sent to Guys when I ask.
Hi Lizzziep , so sorry your platelets went over 1000 , I been worried mine shot up to 528 which I thought was high pleased to hear your are going down in the right direction 😀I only deal with the Nurse over phone since lockdown I attend Medway in Kent they do there best like all hospitals they cannot cope all the best to you with guys
In Devon, there is a program called Patients Know Best that the surgery can set up that will allow you to see results through your NHS app. I don't know if it's throughout the country but you might check.
Good news and better news is that you are your own advocate and seek the best care for yourself. My local hematologist was also a little miffed when I sought out a MPN specialist but now is fine with my decision. Continue your pursuit of high quality care!
When I changed from Anagrelide to Rux I took a low dose of both for a month but my platelets dropped too much so then just carried on with Rux, with Momelitinib it was just a straight change, finished Rux one day started Momelitinib the next. Ok, so far except for platelets rising so now on hydroxy as well! Hope that helps.
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Update on appointment 
Pegasus side effects episode 2!
Interesting appointment today.
TRYING TO FIGURE OUT IF ITS POLYCYTHAEMIA OR PV-UPDATE 2/7/2013
new to elevated platelets
