Hello all, I had high HB and HCT about three years ago and had venesection approx 7 times over the next year. I was then advised that the consultants would monitor levels, so to have a blood test every 3 months for the next year, where it would be reviewed. After the first blood test, 3 months later the consultant discharged me saying there was nothing wrong with me!!
Anyway, this was just over a year ago and 3 weeks ago I had a blood test where the HB was 17.9, HCT 51.5 and red cell count 58.2. Dr advised that I drink lots and have tests again in 3 weeks. I have just had the second blood tests and HB has gone down to 16.3, HCT 51.6 and not sure about any others yet. Receptionist says that the Dr says no further action required.
In your opinions, should I worry about the high HCT level as this was the one that the previous consultants advised they look at and it needs to be kept below 45. I know the HB is just into the normal range again, but I am not convinced that this is all just "normal" again now. Previously I had had a headache constantly for over 2 years and this miraculously went away when I started running back in October, but the headaches have come back in the last 5 weeks, which seems to coincide with the blood levels going back up again.
Sorry to go on and on, but feeling confused and not sure if the GP is really on top of things?
Thank you in advance, Chrissie
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Hi Chrissie, I am not a medic but I think you should be asking for a second opinion and a referral to haematology. You are not happy with your blood counts so I would push for further advice. Kindest regards Aime xx😺
Hi Aime, thank you for your response I have already got an appointment with the GP on Thursday for results of an xray, so I think I will see what he says about the blood levels too. I do feel that I should take what the GPs say as right and not question them, but I do have a feeling that the GPs are not particularly experienced enough with PV etc.
Hi Chrissie, my GP had never dealt with a patient with PV before but at least he admitted it and agreed with requests, etc. It would be worth emailing Maz directly at MPN Voice to get a medical opinion but personally I would be insisting on a second opinion and referral to haematology but as I say I am not a medic.
I have become more assertive since being diagnosed with PV because I feel it's me that has to deal with my illness and for the sake of my family, I will push if I am not reassured. Take care Aime xx😺
Thank you so much Aime for your advice, I will see how the appointment goes with GP on Thursday and see what he has to say. I am quite willing to be assertive if I need to be.
Don't bother maz. Once your HCT passes 45% brain circulation starts to get sluggish and you are at increased risk of thrombotic episodes such as stroke or DVT. If your WCC is also elevated then it is very likely you have either PV or ET. This is based on the knowledge i have from a degree in physiology as well as medicine. Your platelet numbers would also be interesting. The advice to get tests repeated after drinking a lot of water was justified as dehydration can mimic these diseases. I hate to keep saying this but I was a GP who did not self diagnose but simply did a non rash itching screen on myself. Most GP's never see an MPN just like they don't see meningoccal disease thus they don't recognise it and stick to what they are used to . Part of any medical students training is common things are common and most sets of symptoms have a single explanation. The medical equivalent of Ocrams razor.
You need a haematology assessment not just a second opinion from another GP in the practice.
I self diagnosed in a sense that i had intractable itching and fatigue, knew the tests to do and also remembered reading an author who had wrote a story based on PV from a fictitious cause.
Take this with you as well as my private message with personal details.
What great advice! My GP whom I love dearly and have had him for many many years and believe me he is a great Doctor,overlooked my ET. It wasn't until during a wellness test at work that I looked at my results and saw platelets high, "Dr called". I brought it up and he did not seem too worried said my platelets had been high since my surgery. So we went several months of re-testing before I said what next??? don't you think I should go to a specialist? He then sent me to a hematologist who was also very nice but not well verse in the MPN's, handed me a paper from the Mayo Clinic, told me age plus Jak2+ and ruling out everything else makes me ET, take a chemo pill and call me in a month. Yikes! Then I found this site! Thank God! BTW I did end of going to an MPN expert.
Hi Mickey, thank you for you response. It is quite scarey when your GP does not refer until quite late on. I knpw they cant possibly know everything, but perhaps they should seek advice earlier, when they are not sure. I am glad you got to see an expert in the end
Thanks Chrissie but then the MPN expert confused me even more, he goes against the grain as I will call it, he does not treat until over a million unless you have prior problems, he also does not go strickly by age for medication, although he did say that is know that older people have different problems. He did not like the medicine HU for various reasons. He was an expert, he is head of hematology Dept at a rather large prominent teaching hospital but his views on the medicine and treatment are totally different for ET. He was very confident which made the visit comforting. Best of Luck Mickey
Hi Skodaguy. Thank you so much for taking the time to respond to me. I have not seen the latest WCC and platelet levels, but they have always been generally good when I had high HB and HCT previously. I am intending to ask the GP when I see them tomorrow evening to get a referal to a MPN specialist as I feel the Haematologist that I saw about 3 years ago was not particularly knowledgeable of MPNs. I never really got a diagnosis previously after having Jak2 test, BMB and spleen all being ok.
I would have thought there would be a reason for these levels to have risen again and would like to find out what it is. I gave up smoking nearly two and half years ago, lost 2 stone in weight and have got much much fitter than I was, so quite disappointed that this is happening all over again.
My husbands hematocrit was 58 for one year & now its 64! His hemoglobin is 22. He is 59 years old & smokes. BMB & JAK2 showed negative for PV. But he does some phlibotomies & his numbers are high....what do u think>>?
Hi Jane, No I was not diagnosed really and the BMB was fine, so asprin and venesection was the treatment. Very frustrated that the levels are all going up again and not knowing why.
Hi Ruby, thank you for responding. When my levels were first discovered to be high about 3 years ago, I had to have venesection weekly until the levels were reasonable again.
your GP is just plain wrong HCT should not go above .45 as it increase the risk of stroke or heart attack. You really need to be under the control of a competent Haematologist.
Hi Catkinspolymer, thank you for replying. This is exactly how I felt but as this was the GP that originally sent me to a Haematologist 3 years ago when the levels went up, I was quite surprised at the "no action required" comment with the HCT at 51.6. Will see what the GP says that I am seeing tomorrow evening. Fingers crossed that he is a bit more clued up.
I don't know where you are in the world or if systems differ, all I know about is the procedure for the UK. Where, if you are discharged from a Consultants 'list' it just means you are no longer called for regular clinic appointments. But you can still request an appointment to see them via your GP.
My GP knows very little about my PV ~ in fact she's told me that she's been reading up on it due to the fact that I'm her patient.
It is my opinion that if your HCT is over .45 then you need a venesection. Have you had any other tests to diagnose whether you have an MPN?
If I were you I would definitely request a referral to haematology.
Hello Karina, thank you for taking the time to reply. I am in the North East of UK and about 3 years ago my HB and HCT levels went up to 16.5 and approx HCT of 50. I was referred to a Haematologist who bit by bit started checking different things. So I had BMB which was all ok, Jak2 negative, spleen all fine. I did have venesection approx 7 - 8 times over the year and about December 14, my hct actually went down a little all on its own for the first time. I then was seen by a different Consultant who was extremely rude and dismissive and said - we dont need to see you again as there is nothing wrong with you. This did take me off guard and left me not really knowing what was the cause of the high levels that kept happening. This consultant then discharged me.
I had some blood tests at the beginning of Feb to check how my cholesterol was and that is when the high HB and HCT was noted again. I am really feeling these high levels are affecting me as my headaches are back, brain seems to be very fuzzy and concentration all over the place, itchy legs back and lots of different joint pains.
Quite frustrated with it all really as I stopped smoking over 2 years ago, have lost over 2 stone in weight and have started getting much fitter and running approx 15k and walking 15k a week.
Sorry to go on, it is just so nice to speak with people who know what it is all about. xx
I haven't read the other replies but I'm sure they're all the same.
In my opinion this doctor should be sent back to med school!
Suggest you find yourself a haematologist who specialises in MPN's - you don't say where you live, it would be so useful if this site listed home town under names.
If you're anywhere near Manchester say within an hour and a half I 'd ask my doctor to refer me to Tim Somervaille at the Christie. You can find his details on the hospital website. Otherwise have a look at mpnvoice.org.uk and contact them for referral list.
Don't hang around. If nothing it will put your mind at rest.
An MPN by the way is nothing to be frightened about, there are a lot of us out here with one! Most of the posts on this website are from concerned people , but remember, a bit like customer comments, there are probably far more complaints voiced rather than good comments. I've met many folk with an MPN ( I was diagnosed with PV 6 years ago, I'm 62) all of whom are absolutely fine.
An MPN is treatable but at the moment not curable. This doesn't mean that you can 't lead a perfectly normal and healthy life with the right treatment. That's the key. Find yourself a good haematologist who knows all about MPN's.
Hello Louise, Thank you very much for your reply. I am in the North East and I believe there is a MPN specialist at the James Cook hospital, so my plan is to ask GP to refer me there if possible. I did see a consultant 3 years ago when the HB and HCT were first discovered to be high. I had Jak2 test, BMB which both came back negative and spleen was also fine, so think consultant decided that there did not seem to be a cause and on the first occasion that my hct went down on its own I was discharged. So never really got a diagnosis. I have been fine for just over a year, but levels are up again now higher than they were before, so I was very surprised to be told "no further action" with the HCT up at .516
I am seeing a GP again tomorrow evening, so will see if I can get a referral to a MPN specialist.
I trusted my GP for many years, and the following is why I suppose I'm a little scathing:
I was patient of one particular GP for 25 years, She knew that we as a family didn't make a fuss unless something was wrong.
Three and a half years ago I was diagnosed with a UTI and treated for 9 months with almost back to back doses of a ghastly antibiotic called Nitrofurantoin - used commonly to treat ecoli in UTIs.
During those 9 months I reported to said GP on five occasions that I was experiencing most of the side effects in the packet ranging from nausea and dizziness to flu like symptoms and dry cough. I was told that I probably had a virus and not to worry, and that the flu like symptoms were due to the UTI.
I trusted my GP, rather stupidly as it happens.
Finally, I saught help from a private urologist, who found in his words " the largest burst abscess at the neck of your bladder I have ever seen - it could have caused sepsis and massive problems with your kidneys"
UTI sorted.
However, that was the least of the problem, the Nitrofurantoin has caused a very rare side effect called peripheral neuropathy - the most ghastly stabbing pains in my arms hands and legs that I've ever experienced, along with almost constant pins and needles in my feet.
If my GP had listened to me, or if I had insisted on a referral at the beginning, this wouldn't have happened....
If you have a MPN eg PV,ET or MF then males should keep their Hct below 45 and female below 43, all experts agree that above this the thrombotic risk is greatly increased. You need a good haematologist asap to help you. In the meantime maybe you should get some venisections to get the Hct down.For people without a MPN Hct can run higher and be normal.
In 2008, my CBC test shows, HB - 17.7 and HCT 51.2 and RBC 5.62. After two years in 2010 my CBC test shows, HB - 19.5 and HCT 56.2 and RBC 6.12.
Then I Have gone for JAK2 and not deducted and erythropoietin is normal. But I have been informed by hematologist that I am under Polychythemia.
Thereafter past seven years I am drawing my blood 2 to 3 times year when my PCV cross more than 50 but no having any symbtoms.
In Dec'2017, I have drawn blood. After that My PCV goes upto 49 and return back 44. Mostly between 44 to 46. In Polychythemia, whether it is possible to reduce PCV from 49 to 44? Today my PCV is 44.5.
But I have been informed by hematologist that I am under Polychythemia. We belive doctor.
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I have already got an appointment with the GP on Thursday for results of an xray, so I think I will see what he says about the blood levels too. I do feel that I should take what the GPs say as right and not question them, but I do have a feeling that the GPs are not particularly experienced enough with PV etc. 
Besremi Allele Result
So confused....
Newbie with Primary Polycythaemia
Blood counts and fatigue 
jak 2 positive
