Only diagnosed with ET 2nd April so right in the middle of the Covid situation. So I’m a little left out of the loop at the moment with relation to speaking to the Consultant.
I have now received copies of my letters from the consultant sent to my medical centre and I have indeed got a Jak2 mutation. I need to research this more but I see this a lot on this forum.
People on here also seem to know what levels are good and bad. I have no idea and won’t until I’m allowed to go back to speak to the Consultant when the restrictions are lifted. If I wrote them on here, would anyone be able to help me out interpreting them?
Much obliged.
Haemoglobin 137
White cell count 12.1
Platelets 669
Neutrophils 8.3
GFR 85
I don’t know what “normal” levels are so am struggling to get a baseline in my own head. If this makes sense.
I’m currently on 75mg aspirin once a day.
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MadamCholet1
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Sending you lots of support. I remember how scared I was when I first received my diagnoses. My journey became a huge numbers game. This increased my stress which increase my numbers. To me an unqualified patient with PV, JAK2 positive, your numbers look fine. I would advice phoning your GP for reassurance. You might be your GP’s first ET patient but i found it good to reach out to my GP and have them involved in my MPN journey. How your treatment will go is individual. How are your symptoms? Have you found the Mpn voice website? Lots of helpful and accurate information there. Including information on a buddy system. There are many websites which will give you the uk labs average range. For example. webmd.com/a-to-z-guides/com.... Lastly welcome to this blood family. Where living with an MPN is enjoyable. I’m happy for a chat, if you ever need.
Why don't you ring the consultant's secretary and ask her to tell the consultant how worried you are and that you need re-assurance?
Sadly I have found that you have to be pro-active in dealing with the NHS. You could also try your GP but many of us have found they have very limited, if any, experience of our problem.
Try not to worry. I did at first but here I am 9years later and it does not impact on my life very much. (I too have the JAK2 mutation.) Good luck! Sallie
HI MadamCholet1, it is very scary when you are first diagnosed, trying to understand everything and come to terms with it. Do you have the contact details for the haematology specialist nurses in the hospital, you can contact them and ask for advice on your blood counts, haematology departments may be busy but you can still contact them for advice and support regarding your MPN. Best wishes, Maz
All the above give excellent advice. Your results are not that dissimilar to mine. On baby aspirin too and JAK2 .lucky enough to have no symptoms really apart from tiredness after eating. This really is not as scary as it first sounds and is a case of managing the condition and NHS should check your blood results every 4 months although with the Covid situation there may be longer waits. Normally an appointment is made for you by telephone with your haematologist nurse and results discussed over phone with a yearly appointment to see the consultant. GP’s should be reassuring and I find some of mine in my practice are quite up on ET. I found myself researching everything when I was first diagnosed last year and then got fed up and carried on with life as normal. Knowing we have check ups regularly probably means we are at less risk of anything going wrong than the average person who rarely goes to the doctors. Please try not to worry and we are all here to help x
I agree with the others, they look fine to me, but it’s always really reassuring to speak to your haematology/Macmillan nurse and if not get in touch with your consultant’s secretary and ask for an appt over the phone to go through your results and ask questions.
Greetings from Fleetwood England. Welcome to this web site.
It is a safe space where you can find support with your condition.
Advice is a funny thing don t you think.
At the moment you may feel like your swimming backwards and getting no where fast.
There is a temptation to goggle everything and become an instant expert.
Remember that you are not alone.
First your condition is unique to you and your symptoms although strange and unfathomable Will be explained.
The aim of management is to reduce the inconsistancy of your blood levels to keep you safe from other complications.
Treatment will be finely tuned for you.
Try not to get stressed out on terminology .
The main thing is that once you are under the care of a consultant specialist team you will feel much better in your mental well being.
Maz our administrator May send you some leaflets explaining your particular condition. All of us on here have been in this space where you are now and although you may think this is frightening and has made you feel very vulnerable. This is a normal reaction.
Ask questions and try to remember you are not alone in your search for answers. Keep safe and take care.
Hi. 669 for platelets is quite high, think an ideal is around 300ish. Don't know about the other levels. Mine weren't particularly high, around 400ish when diagnosed, then they went up to 500ish. Had a bone marrow biopsy and the nurse said platelets had gone up in the 800s, which surprised me but she said they do go up.
Had a phone consult yesterday and Dr said platelets were 470! I am just on Aspirin, but they want to put me on a drug to lower them further. I am 68 and have controlled high blood pressure so am classed as high risk.
They are leaving it 4 months till next appt.
Am being to think if all these tests were worth it as platelets are quite low now and they have been since 2003 before diagnosis!
It can be a bit scary to hear the word 'cancer' but it means the platelets are multiplying quite fast etc so try not to worry. I don't feel too bad. Cassie11
Must admit I don't take much notice of the figures that my haematoligist says at my appointments. My gp spent half an hour explaining it all to me when I was first diagnosed. My haematoligist usually says my blood is good or it is a bit thick. If thick she says I need a venesection or 2. Always asks how I'm feeling and if I say I'm fatigued, even if blood is ok, providing it isn't going to cause any problems she arranges a venesection as I always feel much better afterwards . I've had PV for nearly 12 years and have 3 monthly appointments. I guess because i don't take much notice of the figures I haven't really stressed too much about the condition. I have total faith in my haematoligist. If im not well between appointments i only have to ring and she will see me, usually next day or so. I'm also on aspirin. Each one of us reacts differently and this works for me.
It is the Platelets count that is a little out of range, which makes the blood a bit thicker, but this is easily controlled with Aspirin and the occasional Venesection where some blood is taken out.
It is scary when first finding out but you will find lots of support here - wishing you well on your MPN journey
I was diagnosed with ET Jak2 in 2008 with similar numbers. The platelets are a little high, but otherwise, everything else in “normal” range. The only thing I don’t recognize is GFR. I’m not sure what that is. Treatment is very individualized, depending on age, how symptomatic you are, risk factors, etc. This site has taught me so much and there is so much support here.
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