I’ve been struggling with my Red Blood Cell count for the last few years but recently my Haemoglobin & Haematocrit have also increased and above the threshold of normal, I’m due an appointment with the consulant in December but i’m constantly googling to see if i’ve got Polycythaemia vera (PV) or not.
I’m really struggling with energy and I’m finding im falling asleep around 9/ 9:30 every night lately, it just hits me and my body turns off and im fast asleep, it can even be on the sofa watching tv and it comes on… Has anyone else experienced this?
I’m also under active thyroid but my medication is keeping that at bay so cant even blame that on the tiredness…
I just feel a little loss that I’ve got to wait till Dec to have further tests and with it being so close to christmas it just feels awful timing for anything! Everything I google it seems to come up with later in life ages but I’ve literally just turned 31 - anyone else in the same boat?
Also at what point are your Haematocrit and Haemoglobin classed as too high to be a clear sign of Polycythaemia vera (PV)? I know the JAK2 gene test is also an obvious give away but i’ve not had that yet…
Not sure if these will help anyone searching in the future but these are my latest tests…
RBC Count - 5.84 10*12/L
Haemoglobin Estimation - 180 g/L or 18 g/dl
Haematocrit - 0.539 L/L
Hi @Matt a great big welcome to our forum.
Your anxiety really comes through on your post which seems so natural to me.
The not knowing and the waiting are the worst feelings, aren’t they.
Perhaps the one thing I would say is ‘Google’ is perhaps not the best thing to do.
Also your symptoms might be many conditions.
Weirdly I have heard of a lot of people being diagnosed just around Christmas, I myself was diagnosed with a different blood cancer on Dec 16 and I sent a note in with my Christmas card to a friend in Los Angeles and her card crossed mid Atlantic with mine and she had been diagnosed with the same blood cancer at the same time as me.
18 yrs later we are still here enjoying life.
Yes, I also manage my energy levels and fatigue and have tweaked my lifestyle.
Last night I kept on falling asleep 9.30 on during 2 programmes I really wanted to
As you are so concerned why not try talking to your GP in the meantime about your anxieties.
Also if you would like to talk to someone the Blood Cancer UK support line is there for you and I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
I find stress and anxiety are really exhausting too,
Please let us know how you get on and really look after yourself
I’m in a very similar situation with similar results too, (normal ranges are slightly lower for women)
I haven’t got an appointment with a consultant yet, still with the GP, she said she’ll speak to haematology next. My GP has arranged a JAK2 test which i’m currently waiting for the result of. The test is done they’ve just made an error putting in the system so my GP and myself on the NHS app can’t see what the result is! It is very frustrating particularly as it has already been 3 weeks since I had the blood taken.
Sorry I have no advice or anything useful but just wanted to say i’m in the same boat with the anxiety, constantly googling, checking symptoms etc. I know its not good for my mental health but i’m obsessed! I’m 29 turning 30 in March so also feel surprised and I am needle phobic so not ideal!
I had raised HGB and HCT in 2016 but it was only slight so didn’t warrant any further investigation and this is year is thankfully the first time I have been to the GP since then.
Hope you get some answers, I will be interested to find out how you get on. Take care
Hi @Grace93 a great big welcome to our forum and as I so often say it is the not knowing and waiting that are the worst feelings and we seem to be in this position so, so often.
Some blood tests do seem to take a long time for test results.
Perhaps now you have found us it might be easier to cut down on the ‘googling’. It is so natural, but as you say it might not be the best for your mental health.
We are interested in hearing how you get on so please keep posting.
Perhaps the main thing is that you look after yourself but also be kink to yourself.
Since posting I’ve now had a constant side effect of pins and needles in my right arm to the point of contacting 111 and they also suspect it’s a Polycythaemia vera (PV) symptom I’m having - the GP have issued a blood test for Tuesday to check my levels and seeing if they’ve changed much since July.
Honestly it’s driving me insane having this feeling constantly for the last few days so I’m really hoping it’ll ease up eventually!!!
There’s been no mention of JAK2 test yet still either so unsure if they’re holding off till my consultation in December.
Oh @Matt I will stay tuned with anticipation.
Hi Matt I understand your frustration as I have been through something similar wrt CMML on top of my Polycythaemia vera (PV). Try asking your GP to do the JAK test so the consultant has it for your appointment. My GP did it for me.
I’ve had news that they’ve moved my consultation from Dec to Nov, so that’s a 5 week cut of waiting time thank the lord! I’ve also had blood tests done this week and all three results are sitll showing abnormal and are very similar to my first post. Got a doctors call next week and will ask about the JAK test to see why they’ve not done this already as I also half expected that to be one of the first things to do!?
Does anyone else have a high platelets count? Mine keeps coming back normal range but know that can also be a sign of Polycythaemia vera (PV) sometimes, is it always the case?
Right, as you say @Matt things are moving in the right direction although you still have to wait.
We are such individual, complex being.
Firstly, comes the doctors call and you can ask them all your questions.
Then the consultant’s appointment in Nov.
You will have more questions to add to your list for then.
The main thing is that you look after yourself and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Please let us know how you get on
My platelets are around 500. Most of the medication you take will focus on driving this down.
Interestingly my platelets count has always been around 240-260! With the highest only ever being 292… The plot thickens!
If there is one thing I’ve realised is it’s amazing how many different conclusions you get when you start flirting in and around level ranges and what’s classed as “normal”
Like with covid… I always feared if I caught it that maybe the end or at least feel the worst on it but so far I feel lucky not to be too bad compared to some generic healthy people who have been proper struggling with it
The days of uncertainty can be the very worst but it all depends on your mindset and your physical management that can help massively.
Hi @Matt I hope your medical team are able to give you some reassurance and completely understand the frustration at having to wait. Sounds easier than it is but I’d just get on with life for now and do normal stuff until someone tells you otherwise.
Hi @Grace93 I just wondered firstly how your anxiety levels are now and wherther you had any updates.
Look after yourself and take care
Thanks for following up, thats very kind of you!
I recieved a text from my doctor that my JAK2 was normal so it is ‘highly unlikely to be Polycythaemia vera (PV)’.
Shes still trying to track down my xray results from 7 weeks ago checking my heart and lungs so my anxiety is still pretty high.
She expects if its normal just to have me back for another FBC in a year but I dont feel like we should just stop there. Hopefully ill get to talk to her soon. All this texting from a no reply number is highly frustrating!
I hope things are well for you?
Hi @Grace93 I have learnt to be ‘pleasantly assertive’ over the years, so perhaps that is a hint for when you actually get to talk to her hopefully soon.
I am sure you are really anxious, for me it is the not knowing, the frustration, feeling out of control and the interminable waiting.
Please let us know how you get on and be kind to yourself
Hi @Grace93 have you got to speak to your doctor yet?
Take lots of care.
Yes finally she called me to say my xray was all clear which obviously is good news but doesnt help explain the blood results.
She has written to hematology for advice whether I just need to be monitored with annual bloods or if I need further investigation now. More waiting for this response. She confirmed ive had polycythemia for at least 6 years so thats kind of reassured me that its not caused me any real trouble in that time but I really would like to know why I have it.
Hope you are well too?
Hi @Grace93 I am so glad that you got the call at last.
Good news about your x rays.
As we always say on here it is the never ending waiting that is the worst feeling.
The watched phone never rings in my experience, it waits till you go to the loo.
As for the ‘why’ perhaps sometimes we never get that answer, we are such complex beings, but please do keep asking.
Please do let us know when you know something.
Look after yourself.
Had an update, haematology think it might be secondary Polycythaemia vera (PV) but are pretty confident it’s not primary. Testing me for JAK2 to be safe.
I’ve also had a Venesection yesterday and they managed to take 200ml before my body went into shock and began slowing shutting down so they had to abort. We’re trying next Monday with additional fluids being inserted before they try as apparently the blood coming out was extremely slow which was unusual for them to see.
Also waiting on a MRI for potential nerve damage now too. So still a waiting game for me unfortunately as no clear outcome still!