I'm being investigated for polycythemia and had the JAK2 gene test yesterday (through my GP). How long have people waited to get a result? I gather it might be a while but just wondered what others had experienced.
At this stage unsure whether it is secondary polycythemia or PV. My Hb is 169 and Hct 0.53 at last test 2 months ago. In my area haematology asks for a repeat FBC at 8 weeks before the GP can refer, if it is still high. I have been feeling unwell for quite a while. I don't have any risk factors for secondary polycythemia except for taking an anabolic steroid (prescribed by my consultant for hereditary angioedema) which I have been on for 12 years. I was diagnosed with b12 deficiency last year and been having injections but didn't feel better so had FBC in December which flagged high red blood cells, but not white cells or platelets. My ferritin is low at 13, but this is in range in my area. My GP seems to think this is suspicious.
Thanks for reading 😀
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Curlygal
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I should add that I'm a woman so fairly high Hct (I understand the range sits higher for men). If it goes above 0.56 then you get an urgent referral to haematology.
I hope you find out soon, it's really horrible waiting. Do you have an inkling of which kind you may have?
I have not even got to the stage of being referred, I am hoping the wait time is not six months or something! I fear I may go mad in the interim. I keep ricocheting between being convinced I have PV, then equally convinced I am silly to think I may have something so rare. I am only 42 and fed up not having any energy and feeling dizzy etc especially if I overdo it. I can't go on walks any more as I get breathless and light-headed. 🙁
I'm similar age to you and diagnosed with PV in december. The Jak 2 should take about 3 weeks to come back and if it is positive then I think your GP should be able to get the referral off then without having to wait for a futher FBC in 8weeks. Good luck. In the mean time I'd get drinking lots of water and consider going on low dose aspirin 75mg after food with the symptoms you've got to reduce the risk of any blood clots. Hope you start to feel better v soon.
Thankyou Heidi, how are you feeling about your diagnosis? Are you having any treatment yet?
I do normally drink a lot of water anyway but lately find I have to drink even more than usual. If I get even the tiniest bit dehydrated I feel terrible, light-headed and foggy etc. I think I will hold off on the aspirin though, I don't want to jump the gun and self-treat while I'm waiting on the JAK2 result. If I understand correctly, it's not usually recommended for secondary polycythemia which I may still have. If the result is negative I will ask the doctor though because I am a bit concerned about blood clots, as you might imagine!
Hi Curlygal- glad you are drinking plenty of water- the excess thirst was one of the signs leading up to my diagnosis. Hope you get the JAK 2 results in the next 2-3weeks. I had headaches/dizziness/brain fog/almost double vision at times/nausea/fatigue and the aquagenic pruritis in lead up to my diagnosis in dec 17 at 41. My Hb was199 and HCT 0.6 so I put myself on aspirin straight away as blood so thick (I'm a GP). I've had 6 units of blood off and started the hydroxycarbamide last month to try and help reduce my platelets which were over 600. At our age with no risk factors for clots etc they don't tend to rush in with the hydroxy but I'm due a hip replacement imminently and Prof Harrison at Guy's felt the ortho team would want my bloods more normal prior to any op. I've also got quite moderate to severe spleen enlargement impacting on my liver and with the nausea I was keen to try the hydroxy to see if helped with that. I'm now also very iron deficient from the venesections so hopefully now I'm on the hydroxy it will reduce the frequency of the venesections to allow the iron to pick up a bit.
I'd been feeling rubbish for a while and thought I may have it as spleen slightly enlarged 3 years ago and I've always had excessively rosy cheeks! I had to stop my hip pain killers due to the brain fog. I've ended up going off sick for the last 2months for 1st time ever in 17years of NHS joy but at occy health today to try on a phased return till my hip op. I don't think I'll be able to do my previous intense 12hr +days in the future so at least thats one positive from all of this. I have a 7 year old girl so just really keen to try and get energy and get better so I can be a more active mum again.
Re the aspirin for you worth considering once you get the results back as its only low dose and millions people on it. The only slight issue is with you being on steroids it could increase your risk of gastric irritation and possible bleeds there- if you are on something like omeprazole or lansoprazole to protect your stomach from the steroids they will work for the aspirin too.
Anyway good look and try not to worry too much-there are so many positive people offering support on here who have had PV for donkeys of years.
Hi Heidi, thanks so much for your kind words, I have been feeling unwell the last couple of days or I would have replied sooner. You definitely have a lot on with PV, work, kids and your op coming up so hope you are ok. How are you feeling on the hydroxy?
I have all the symptoms you mention except the itching, I was interested that you mentioned nausea as I have been getting this too but it doesn't appear on any list of PV symptoms I've seen. I am on lansoprazole after getting h-pylori (treated) a couple of years ago but the acid never went away after. I don't get a bad tummy from the steroids, they are anabolic steroids/androgens (oxandrolone) but dunno if that is common? Upset tummy from taking them, I mean.
I am quite stressed and worried at the moment, mostly because I have no idea if I have PV or not and having to wait on the JAK2 result. I know steroids can cause polycythemia but the question is if that is actually the cause! My Hct was 0.44 in 2016, 0.47 in May last year and then jumped to 0.53 in Dec after having B12 shots. Apparently B12 doesn't raise red blood cells too high in normal healthy people but it can in PV. I don't know if similar applies with androgen use.
I don't know if you've heard of hereditary angioedema (most doctors never encounter a patient with it), but I've found that when I have an attack, the dizziness is much worse now than it usually is. I am a bit concerned about this because as far as I understand it, plasma leaks out of the blood into the tissues during an angioedema attack, which would presumably raise the Hct even further, temporarily.
Of course I have been googling like blazes because it's so complicated with me and I am trying to work out what is going on! I need a hotline to a haematologist! 😀
Hope you are feeling well and thanks again for replying to my post, it is not easy to find someone to talk to about such a rare condition. My other half is fed up hearing about it so I am trying to ration my "medical worry" conversations!
Ah bless you. Fingers crossed you get those answers soon. Interesting re the b12.. when you are low in that, the size of your red blood cells tend to be large. Think the Haematocrit is calculated from your red cell count and the mean cell volume so in theory having had the b12 treated your MCV should reduce and therefore have a knock on reduction on your HCT.
Afraid the steroid stuff is more complex and hopefully the haematologist can make sense of the impact on those on your bloods.
Re the nausea mine is from having a large spleen squashing my stomach a bit so might be worth asking for an ultrasound scan of your abdomen to check your spleen size- your GP could easily organise that from the surgery as may explain that symptom.
Anyway good luck and fingers crossed with everything.
I'm tolerating the hydroxy fine but just very tired whilst my iron is still low. Saw occy health last wk and they are recommending I stay off work to get my bloods fixed prior to my hip op so am now busy painting some zoo animals for scenery for the local Rainbows/guides etc gangshow event so at least some silver linings to all to this as would never normally have time to do this kind of stuff!
Apologies for not getting back to you. Still waiting on my JAK2 result, but been distracted by the snow we have had here (Scotland) - things slowly getting back to normal!
I did speak to my GP last week, my recent FBC actually showed my Hct has fallen to 0.49. I had been supplementing high dose B12 until January but have reduced that a lot, this was to treat the neuropathy in my feet, it improved significantly so I stopped, but had begun to suspect it may be raising my red blood cells. My MCV is still 106 so no idea what's going on. Plus my ferritin is borderline despite high haemoglobin so who knows?! Apparently the wait for haematology is 11-21 weeks but they will advise the GP before that. I hope so, because I feel pretty rough!
Glad you are able to do more things now, despite the unfortunate reason for it! I managed to go visit my son before the snow hit, he is in his first year at university. We had a nice walk, not too strenuous, as I was feeling sort of ok that week. I don't have a car so going anywhere when not feeling great is a bit of a nightmare.
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