Worth investigating Polycythaemia ?
Posted , 3 users are following.
I have posted before with questions re: pv and secondary pv and everyone has been very helpful, thank you.
I don't know if my problems are worth investigating because I do have high hgb/heamotocrit and my RBC is just over normal but I do not suffer from the itchyness that some with pv do. In fact I'm not sure what symtoms I have as I've been like this for so long now - how I am is normal for me ! Almost every FBC I've had for at least 14 years has mentioned Polycythaemia but my general doctors don't think it is enough to investigate. The whoozy feeling that some posters mentioned recently are common with me though and I get tired easily, sleepy, have 'wobbly' days that are physical/mental, bruise extremely easily (big purple ones). I blame all this on my senior age though!
I have had gangrene twice - and boy it is painful! Once years ago from insect bite and more recently after a severe accident and I wonder if these were because of polycythaemia, blood not circulating normally etc? I survived both events btw. but not without lasting effects.
Well now I am due for a spirometry next Monday having had yet another chest xray recently. GP blames my FBC results on COPD as I was previously a smoker though never suffered breathlesness, bronchitis or chest infections.
I'm intolerant of aspirin, a heamotologit referral has been considered irrelevant by GP (in fact he said he has patients with hgb of over 170 = I want to ask are they OK ?)
Sorry this is long but I dread making a fuss/being thought a
hypochondriac so not sure what to do now. My spirometry results may give answers I suppose.
Grateful for any suggestions.
0 likes, 5 replies
keith28441 jessie2150
Posted
Not everyone gets pruritus (itchiness), it’s just one of many symptoms that suffers can get. Tiredness, feeling dizzy and bruising easily are other symptoms associated with Polycythaemia although they can also be a result of other conditions. COPD can also cause Secondary Polycythaemia, so I think it’s worth having the spirometry test in order to cover all basis. Where I live, a Haemoglobin count of 170 is within range but bang on the higher limit. Higher and lower thresholds vary depending on where you live in the UK and also vary from country to country. The World Health Organisation’s criteria for recommending further investigation of Polycythaemia is a Haemoglobin level of 18.5 (185) or higher in men and 16.5 (165) in women. There are other factors that have to be taken into consideration as well and not just based on your Haemoglobin readings. What are your Haematocrit and Red Blood Cell count readings? Also do you know what your Platelet and White Blood Cell counts are?
Keith
jessie2150 keith28441
Posted
Thanks for your helpful reply keith. The WHO criteria for women of above 165 hgb almost excludes me then ! Hgb 162 - heam 51 - RBC 501 - platelet 261 - wbc 6.5, for me but they are variable.
I suspect secondary and am OK with that, polycythaemia is mentioned on all my blood test results by the lab.
It's just reading about the whoozy/wobbly symptoms here recently that so struck a cord with me.
Nothing much to be done even if I am secondary, but I'll see what the spirometry results are and I've just had yet another blood test and waiting for results.
best wishes, j
keith28441 jessie2150
Posted
Hi Jessie
Well your platelets and other readings appear to be within range with the exception of your Haematocrit, which is high. The limit is 0.52% in men and depending on where you live between 0.47% & 0.48% in women. If your GP believes you have Polycythaemia then he or she should really refer you to a Haematologist as from my experience GP’s have very little understanding of this condition whether secondary or primary. Furthermore, they can run more intricate tests, which would help in identifying exactly what may be causing you to have secondary polycythaemia. As mentioned in my earlier posting COPD can certainly be a factor and it’s good that your GP is undertaking a spirometry test but why should you have to put up with the dizziness, fatigue and bruising if a Haematologist can help alleviate these symptoms? If your Doctor has said you have Polycythaemia then my argument to him/her is, “then I need to see a specialist who can help treat and monitor this condition”. If they can find the cause of what is causing your Secondary Polycythaemia, then there is a good chance of curing you. - I feel for you Jessie and hope your GP acts accordingly should the spirometry test yield no results.
Take care
Keith
harrishill1 jessie2150
Posted
Hi Jessie. I don'w why your Gp didn't send you to a hematologist he thoght you may have PV. The hematologist is the one who would diagnose it. If you have a high red count, you shd see a hematologist. Hope this helps. Good luck.
harrishill
jessie2150 harrishill1
Posted
Hi harrishill1 : As I understand it I do have polycythaemia. Most likely secondary diagnosed by my gp. I think cost may factor into my not being referred to a haemotologist frankly, and also that as I don't complain of many symptoms (no pruritis certainly) my gp lets it lie.
thank you for your reply though, this forum is such a help.
best wishes j