I feel like I’m being fobbed off by gp I Personally think I might have over as I had heart attack n 2020 at age 47 have sleep apnea mild emphysema and have ve had 3 blood tests all with similar results had a EPO test and it was 8.3 what can I do to force gp to order a jak2 test my nan had pv and she had massive stroke and died aged 60
are my numbers high: I feel like I’m being fobbed... - MPN Voice
are my numbers high
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djleighp
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and forgot to add diabetic type 2
What you are describing includes erythrocytosis with low-normal EPO, in the presence of sleep apnea/emphysema. This is consistent with a diagnosis of secondary polycythemia; however, in the presence of a family history of PV it is reasonable to require ruling out the presence of the JAK2 mutation.
The workup for secondary polycythemia includes doing EPO and JAK2 testing. emedicine.medscape.com/arti... This is not a matter of forcing a GP to do something. it is a matter of exercising due diligence in making a diagnosis.
While this may well be a secondary polycythemia, with your history of a heart attack and family history of PV/stroke, it would be prudent to rule out a possible PV diagnosis. The treatment for PV and secondary polycythemia are not the same, so this does matter.
Wishing you success moving forward.
My numbers have been like this for last 6 months highest it’s been is hb 18.9 but more concerned hct of 0.556 and I’m already on aspirin for life due to my heart attack and to note I get severe itching every time I have a shower feel knackered all time I put this down to the lasting effects of my heart attack also my eyesight has really got bad this last year I used to be able to read my phone without glasses up until my heart attack now I cannot see anything as it’s so blurred without glasses have headaches only way I can describe the headaches like tension headache and do feel nausea 50 percent of time but I cannot seem to get anywhere so frustrated
What you are describing with headaches and itching is consistent with PV but certainly not conclusive. You are not overthinking it.. Even if what you are experiencing is secondary polycythemia you need a clear diagnosis. Perhaps you need to see a different GP.
thank the go don’t believe me but I think maybe I’m overthinking it
You really need to see a new GP!
I had a stroke in 2012, the GP I had at the time constantly 'blamed' it on the fact I was an ex-smoker (I hadn't smoked since 2007) I knew there was something wrong but was fobbed off and diagnosed with depression/anxiety/perimenopause. The stroke aftercare I received was also abysmal.
I registered with a new GP at the end of 2014 and had to have a new patient health check which included an FBC. Within a week I received an appointment at haematology and in Jan 2015 I was diagnosed with Jak2 + PV.
My haematologist looked at historic blood tests and confirmed that I had high HCT since 2009 and he was in no doubt that it had contributed to the stroke.
Hope you get a satisfactory outcome soon.
Just get another GP and do the test.
As mentioned by Hunter, proper diagnose PV or Not, need for right treatment, specially with your history.
Wishing you all the best.
Cheers
Usually you need a referral to a haematologist of some sort - not nec an MPN specialist at this stage- to get tests necessary for PV diagnosis. Making a formal complaint through the practice manager ( or letting gp know that that’s the next step) is worth while.
I agree with all of the comments.
What I cannot understand though is your lab test results not showing guidance for ‘normal values’ or more importantly, highlighting ‘abnormal values’. If this were the case, you would be informed that your white and red blood cell counts are raised along with your haematocrit. This would normally be highlighted in red.
You are definitely not overthinking.! Your family history, past cardiovascular event and diabetes diagnosis adds urgency to a haematologist referral. I would suggest you advocate strongly for further investigation. Do not be intimidated by your GP.
the picture is a bit blurred by your other health issues which can raise red cells etc , I have never seen a CBC where the Hgb is estimated, I am not sure how they could estimate it.
Nevertheless your counts are high inc Whites, I think it needs further investigation and probably treating, eg venisection to reduce Hct etc , I think a visit to a haematologist is required. Itching is typical primary PV symptom in around 62% of MPN patients, you also mention PV in family so I would push for a haematologist and Jak2 test. If the Hgb reading is accurate you need venisecting, Hct at 55 might be the higher end of normal for someone without MPN but with your other medical issues even if not Jak 2 I think you need venisected. I don’t mean to concern you but I think action is wise and sooner than later, better safe than sorry.
I agree with everyone Your bloods need testing asap. My gp sent me immediately to haematologist and my counts were not as high as your - good luck
thanks for replies I shall make an appointment with the gp tomorrow and insist that I get referred to a heamotogist who specialises in mpn as well I just think the doctor think it’s secondary but I shall say no I want a jak 2 test due to family history and me having heart attack at 47 and if I get no joy then ll change doctors
Good. Even if it turns out to be ’secondary Polycythemia’ it still needs addressing especially so given your medical history.
Good luck
I don’t know if this matters I’m already on aspirin 75mg so if I wansnt on that would my numbers be even higher just a thought I had
Aspirin affects the stickiness of platelets rather than the number of them. Cytoreductive drugs (hydroxyurea, interferons, ruxolotininib etc.) reduce the numbers.
You need to see a hematologist/oncologist to get a proper diagnosis, demand it of your GP.
Best to you
had appointment and they gunna do bloods on 15th and if they come up high doctor said he will order jak 2 test and do a referal
Excellent - glad you have got a more helpful response. Best of luck.
just had results my heamocrit is now 0.58 and hb 19.3 and they saying it’s secondary my epo was 8.3 so feel like I’m gunna have to pay for a jak2 test myself
Was it the same Doctor you spoke to before and if so did he/she explain why they aren't sticking to their original offer to Jak2 test if the results come back high?
Regardless of cause, what did they say was the plan for reducing the HCT? That seems the urgent thing to sort out (although I have no medical training and only know of the significance with an MPN).
I'm not sure what to suggest, other than go back to the Haematologist or GP again and spell out exactly why you are concerned (personal and family history and knowing high HCT can be risky) and how much stress you feel at not being able to rule MPN in or out. If they won't offerJak2 testing then you can ask them during the conversation how you go about arranging it yourself as a self-paying patient and likely cost?
He said it’s definitely secondary with epo of 8.3 I thought secondary would be a lot higher number and he said I didn’t need the test so stop worrying which as made me worry even more
I said about reducing my. Hct he said stop smoking
tested positive for jak 2 v617f mutation
my heamocrit is now 0.58 and hb 19.3 and they saying it’s secondary my epo was 8.3 so feel like I’m gunna have to pay for a jak2 test myself
Doing a JAK2 assessment would be needed to make a definitive statement that the erythrocytosis is secondary. Did this never happen?
no it didn’t just had a epo test when referred
They are presuming in my opinion as I do have type 2 diabetes mild sleep apnea copd and ischenimic heart disease had heart attack in 2020 aged 47
There are valid reasons to be thinking secondary erythrocytosis; however, it would be expected for hypoxia to elevate EPO. Your current 8.3 is on the lower side of the reference range. I am not sure why there would be any reluctance to test for JAK2 as a rule out for PV. That would seem a prudent thing to do.
I would advocate strongly for the rule out testing. There is no reason to not order the JAK2 test.
I’m done with my gp can anyone point me in right direction to get a private test and if it does come back negative least I know and if it comes back positive I’ll can stick 2 fingers up at them I just feel stressed with this want to know one way or another I’m based in Birmingham if anyone can tell me where I could get tested would be a relief
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he said epo test was normal so its definitely secondary but I’ve read anything up to 23 still doesn’t rule it out or am I wrong
The reference range can vary by lab (2.6-18.5) (4.0-26.0). Your lab results should show the reference range they use. Regardless of the reference range at your lab, you are in the low-normal range. Many people with PV will demonstrate erythrocytosis with low normal EPO. That is why subnormal EPO is a minor criteria and not required for a PV diagnosis. My EPO ranges from 5.7 - 7.8. I definitely have PV.
Suggest it is time to consult with a provider who knows more about MPNs.
I’ve paid for a private test cost me 225.82 all in think this include venesection as well
That is a very good decision. It is well worth the investment to have peace of mind. If it turns out positive, maybe your GP will pay for the test, 🫤
Will be done at the spire hospital birmingham
TESTED POSITIVE for the v617f mutation what would be my next steps
Your Dr is wrong to rely on EPO to make such a definite statement. My EPO has gone up to ~24, way over my provider's limit. No idea why but I do have a PV dx. I've been low, normal and high on EPO.
You should show your Dr Table 1 from this WHO reference. In the 1st column for PV EPO is a minor criteria. So PV cannot be ruled out from an EPO result. But you need results for lines 2 or 3. This is the Jak2 test or bone biopsy (BMB). Jak2 test can be a regular blood draw. If it's positive a BMB is worth doing also.
pmc.ncbi.nlm.nih.gov/articl...
Well just ordered a private test cost me 225.82 least I’ll have peace of mind
Good investment. I've become familiar with paying for certain care my self.
Did the test guys tell you what they will look for? Be sure your mutation test will provide the % mutated (quantification ) not just yes/no. It should also "reflex" (if the 1st is negative keep looking) to Exon 12. I've seen some tests will charge extra for this.
Think this is just for jak2 v617f
Well blood test for jak2 is tomorrow and they have said should have the result within 2 weeks using spire healthcare
no it didn’t just had a epo test when referred
They are presuming in my opinion as I do have type 2 diabetes mild sleep apnea copd and ischenimic heart disease had heart attack in 2020 aged 47
I’m done with my gp can anyone point me in right direction to get a private test and if it does come back negative least I know and if it comes back positive I’ll can stick 2 fingers up at them I just feel stressed with this want to know one way or another I’m based in Birmingham if anyone can tell me where I could get tested would be a relief
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