Persistent symptoms even when HCT is OK?

Hi everyone

Since September 2016 I have had constant PRV symptoms - Severe pruritus, headache, fatigue, joint aches and bruising easily. Even when my HCT level has been in normal range.

I go to the hospital every 8 weeks for a blood check and tend to have to have venesection due to raised HCT at every other visit - so venesection every 4 months.

During my 8 weekly visits, I'm asked about symptoms and how I'm feeling generally...and I always let them know about the symptoms but nothing is made of it. They only say (not verbatim) "That's strange as your HCT is fine..."

I've seen my GP about it and she tested for thyroid, diabetes and kidney function and all came back OK. So I'm puzzled, fed-up and losing sleep due to the ever present itching and headache - I make sure I'm well hydrated, never take a bath (as I haven't got one) and make sure I use only non perfumed products in the shower.

My question, does anyone else suffer symptoms even when bloods are OK?

Karina.

20 Replies

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  • yes, esp bone ache (related to over active marrow not blood counts) fatigue (no one seems to know why). Not so sure about the headache....

  • Hi, I'm afraid yes we all seem to keep having the symptoms regardless. My fatigue is even worse, my head is fuzzier and my ability to think things through and to concentrate is poor just prior to venesection.

    It's so annoying as like someone else said, you get told you are looking well but you feel crap! Every sympathy and some E hugs Aime xx😺😺

  • Thanks Aime

    It's frustrating that my Consultants and Dr are of the thinking that I should be symptom free if blood levels are 'normal' :(

    It used to be a steady climb of symptoms for me in between venesections, but now it's just constant, with a real debilitating high two weeks prior. x

  • Yes its common, good blood results dont always equate with feeling well, which is a fact sadly a lot of people in the medical profession dont understand.

    Keep at them.

    Paul

  • Hi Kari,

    I'm at this stage as well. My HCT level was good for the first time but I have been feeling terrible and seem to be getting worse so I put my haematologist on the spot about the symptoms and really backed him into a corner in regards to confirming if they were PV related which he said they are not.

    Fatigue and confusion which I know are after talking here them here.

    I've also been back to my GP and they are now referring me to a fatigue clinic.

    I'm still receiving venusections but will you posted about the fatigue clinic :)

  • I tried to question my consultant last week,re fatigue,my G P wrote him a letter as she is very sympathetic regarding the constant fatigue,tho my H C T is 50 and not reducing in spite of higher Hydrea dose.He is kind and understanding,but said ,all he could do was help with the drugs,he could not not cure the fatigue and other symptoms as that was the nature of the P V, that really I must adjust life to manage it. All else is good spleen,BP,all other organs.....There is no answer is there to fatigue and bone pains,head aches etc,it is I fear just having an M P N

  • Forgot to add,I do not have venesections now,I did when first diagnosed ,but here in France they are not keen to do them if a stent is fitted,which I have after an artery blocked just after diagnosis,before I was stabilised. I do remember the intense care and monitoring after the venesections,staying in the hospital each time until the Drs were sure I could walk steadily(supported by hubby),the tea ,juices ,cakes fruit chocolate,for me and hubby,Dr sitting with us until sure all was well !!! Tv to watch,beautiful couches to lie on...could stay longer should one wish!!!! That is Fr Health Care !!!!

  • Hi yes I am tried and get very bad headaches had pv for two years get venesection every 12 weeks but had to have two pints taken last month and the itching can be bad at times see doctor at hospital in may hope you feel better soon the sunny weather does make me feel a bit better I don't like the cold best wishes Poppy

  • Thank you for all of your replies... I've just finished work and ready to collapse and sleep the day off.

    I suppose at least I know now that I'm not the only one. Does anyone know whether there has been any research in this? Mazz do you know of any? I've been lead to believe from personal research and speaking with my Consultant that venesection, good diet/hydration and daily aspirin should relieve the symptoms... which is obviously not the case.

  • Hi everyone

    My first time posting. Pv since November 16. Taking aspirin and had venesections weekly as HCT was 68 then twice weekly and now not had one since January and staying steady at 42.

    I really related to what u r all saying re symptoms of pv. Everyone feels that now my HCT is low I should feel fine but the itching and sweats seem worse. I'm lucky I'm free of headaches but have pain in my legs.

    I felt better tho having read an article about reasearch into MPNs and that they r 'symptom heavy' and that consultants etc need to b aware of this. I will try and send the link.

    I manage the itching by showering whilst covering myself with E45 shower and putting lots of cream on after or not showering !!

    I do have a sympathetic consultant but he doesn't have any suggestions other than bone marrow biopsy to see if I have MF.

  • targetedonc.com/conference/...

    Here's the link to the report I spoke of earlier re mpn being symptom heavy.

  • Thank you Sanga. An interesting read.

  • I still get all the symptoms even when my bloods are ok. Dr told me not to worry , it really doesn't help. I find most people,including Drs don't really understand .

  • Hi karina.. I raised a similar question yesterday as my case seems quite similar to yours and I still suffer with fatigue, ringing in the ears, sensitive bones and bruising. Will be interesting to see how others respond. Take care x

  • Yes I do! I'm trying to work out whether it's the hydroxy or just symptoms of the PV. My HCT is now 43. I'm not sure whether the haematologist can hep. Il ask at my next visit which is next week. I find it all very confusing and difficult but people on this forum are brilliantly helpful.

  • Hi, I have PV but not on any meds but increasingly have fatigue, itchy skin and bone pain even when my bloods are ok. Kind regards Aime xx😺😺

  • It is so frustrating! I'm Self Employed so have to work however ill I feel... don't get me wrong I love the work I do. Many people say I look well, healthy and fighting fit ~ some who really know me know this is farthest from the truth. 90% of the time I feel like I've been run over by a train and left on the tracks. I used to really enjoy social time spent with friends and family, recently I either say no straight away or cry off at the last minute. As after work and at the weekend I just feel the need to rest... A few weeks ago I could barely type [and it's my livelihood] as my right hand was very bruised and sore - I lightly knocked it on a door frame, the next day it was black and swollen. :'( and my HCT was OK 4 weeks ago! 'It's all just getting to me'.... :(

  • Hi Kari, I know I feel the same just now! I was self employed for 16 years so know what it's like!

    It annoys me too getting told how well I look, so every sympathy there. I'm working from home today, the laptop has updated and screwed everything up so IT have asked me to go to an office to get it sorted which is a 58 mile round trip for me which I'm too fatigued to do today. I'm going to email my boss and explain the situation (he is on holiday) and if there's a problem, I'll take a days sick leave. He will probably have a problem with it!!

    Every every sympathy and E hugs too - I know exactly how you're feeling and hope things improve soon. Aime xx😺😺

  • I had the exact same thing yesterday Aime as did one of my clients. I love being my own boss and working from home... but the Techie issues are a nightmare. It was stress city in my office yesterday! lol x

  • I agree with "stress city" which I don't think helps our condition or state of mind.

    My hct is .43 just now so ok but it doesn't feel like that! I'm sleeping about 11 hours a night and I'm still tired throughout the day. Hope you feel better soon. More E hugs Aime xx😺😺😺😺

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