getting diagnosed

I have just had a well being blood test and was found to have high red blood cell count. I received a phone call from receptionist with message from doctor. Nothing to worry about you have high red blood cell count and you need to repeat the blood test in 6 months time. Is this normal to wait 6 months to check them again? I don't smoke or drink. I am a little overweight. I am 47 years old and not taking any medication. Been looking what causes high red cell count and realise I could simply have been dehydrated, however there are other causes and the worst one could be kidney tumour so why do I have to wait 6 months for further checks? I have been feeling tired and blamed it on my busy life. For years I have bruised easily so do have some symptoms but these could easily be related to other things. If I was dehydrated another test in a week might reveal this and issue over. Did anyone else have a prolonged diagnosis?

22 Replies

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  • hi, yes because mpns are rare, clinical protocol usually dictates that they eliminate other causes first. suggest see yr GP and ask what he thinks is likely cause.

  • thanks

  • I had a routine well woman blood test 10 years ago and the high red cell count resulted in venesections within days.

    So in your case you dont know how high they are. You could ask for a copy of the results. The range for red cell count that is normal for non MPN people is higher. So if my results show HGB 44 I need a venesection. The results are stamped normal at my local surgery. But the range goes to 45.

    I think there is a way of working out if you are dehydrated in the relationship between HCT and HGB. You could post your results here and someone might know.

    You could also ask for a retest in a week and ensure you are sufficiently hydrated this time.

  • thanks for the info

  • I had a routine blood test last December that came back with high platelets and HB. My GP did three more re-tests, over a period of 6 months. For one of the tests I drank huge amounts of water throughout the week before. The results were the same. In July he referred me to a haematologist. Last month I was diagnosed with PV. The only obvious symptom I had was tiredness, over quite a few years. I'm now on medication but likely also venesection from next month. I'm a 58 year old woman.

  • Thanks for sharing

  • Don't wait 6 months. For your own peace of mind get tested again. You will only drive yourself mad thinking the worst and if your GP thought it was worth contacting you it's probably worth having another look. Those of us that have regular blood tests know how variable they can be!

  • Thanks will do

  • Hi

    Its hard to say without knowing exaclty what other results where shown in your test, for example when i have mine they always look at things like kidney, liver function etc too, so its possible they have already with you and have seen nothing there to suggest anything to worry about.

    It also depends how much over your results where i guess....dehydration can show an increase RBC count but my understanding is only so much. I would book an appointment if your worried and ask to see the doctor to discuss your worries, he may be able to alleviate some of your worries, google is great but can lead us to think we have all sorts wrong if you start 'googling'.

    It can take sometime to get a firm diagnosis.

    Paul

  • Thanks Paul.

    I did restrict my googling to just the NHS site. I only did that because I was told my results in the way I was and wanted to know what it meant.

  • Hi, like others have said don't wait 6 months. Go back and talk over your fears with your GP, go armed with your questions written down so you still remember them even if you get flustered. I was diagnosed with polycythemia in 2012 and did have to wait 3 months, during which time they took one set of bloods per month.

    It is a worrying time for you but even if you have polycythemia, there are many people on this forum who have lived with it for years. Everyone is an individual so our symptoms and severity will vary but you have come to the right place for support from a great bunch of people who know exactly how you are feeling! As well as that you can access the MPD Voice website and Maz who will direct medical questions to the experts.

    Keep in touch and keep us updated on your progress. We all support one another and you have now found a group of new friends. Best wishes Aime x😺

  • Thanks Aime, I will get back to my doctor and ask for an earlier retest.

    It is wonderful all the support everyone gives people on this site.

  • Same happened to myhusband in the March his red blood cells were too high but they didn't say he needed a repeat test.

    However, we moved gp surgeries and that was 7mths later he had a well man's test by this time his red blood cells had rapidly gone up to 65 it was 28 when we first knew it was high.

    So in all I would recommend your blood tests shouldn't be left as late as 6mths may be 2 months.

    Speak to your GP!

    Tracey

  • Thanks Tracey, I will get back to the Doctor in a month or so and ask for a retest.

  • That you have been put on a watch and wait suggests that your red cell count is not that high, and as you already know, there are many reasons why your count can be slightly high, most of which are easily fixed. Remember only one in 50,000 are diagnosed with PRV each year in the UK, so the odds are well in your favour.

    Even if this is the case then there are lots of us living happily with MPD's . I am sure your worst fears are unlikely to materialise.

  • Thanks for your response. I am not presuming the worst, but feel it would be good to have a retest sooner and find out it is nothing just a blip in the test or dehydration than spend 6 months wondering.

  • I have PRV JAK2+ diagnosed a year ago after having a blood test for Rheumatoid arthritis. I was referred to a haematologist within days! (which was when the JAK2+ was identified). I had a very high Haematocrit and high-ish platelets.

    I am 64 and therefore 'at risk' but since MPNs are rare the average GP can't be expected to be particularly familiar with them so I would suggest that you get the full story of the blood counts as soon as you can and possibly ask for a referral to a haematologist - I track my Haematocrit, platelets, Haemoglobin and White counts and as others have already said, they go up and down like a loo seat in a unisex lav and the level of meds I need to take is still not settled.

    Get the info from the professionals! there's too much scary chaff on the internet I fear and sorting out the right stuff requires the professional's grounding first.

    Incidentally, I beleive it's much more common that kidney tumours make one anaemic rather than give you a high red count

  • Thanks, wish you all the best with getting your meds right for you. Fear not I am not trawling the internet. I merely looked on the NHS site wondering what my test result was all about as I had been given so little information. I am not presuming the worst but feel like an earlier retest would be good if it shows that it was just a blip or needs monitoring. Thanks to the advice on this site I feel confident to approach my doctor to request one.

  • 1 did my second test after 2 month , was still high then did another 2 month later higher still then i was referred to heamatolgist so yea maybe best for your peace of mind to ask for earlier blood test

  • Thanks

  • Hi SueMic, I would suggest that you speak to your GP about this and raise your concerns with him/her about having to wait 6 months for a further test, your GP has access to the results of all the tests so will be able to advise you. Maz

  • Thanks will do

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