Very odd conversation with haematologist today!

So, just saw my 3rd haematologist today. Very odd conversation. Interested to hear what anyone thinks? I was diagnosed ET JAK2 +ve 2016.

Capillary blood was taken via finger prick today. Platelets were high around 1300+, (haven’t got exact figure). This led the doctor to say that with my high platelets I can get van Willebrand disease?! (I’ve already been tested for vWB and am -ve for that) Has any one else been told that? Not sure its true?

I then asked her about the reliability of blood tests, because usually they just take capillary blood. However, I pointed out that back in 2016, there was one occasion when they did both capillary and venule blood on the same day and the difference between the two was huge: 869 capillary v 1306 venule.

The doctors explanation today was that capillary blood samples were only reliable if your platelets numbers fell within the normal ranges. If they are elevated, they should be tested by venous blood. Yet they don’t routinely test venous blood.

I live in the Netherlands. What happens in other countries? Do people have capillary of venous blood taken?

Has any one else seen differences between the two ?

I am seriously thinking about looking for a different haematologist.

[h2ogal]

I have venous blood taken every week for CBC. My platelets have just dropped into the normal range but Dr. still wants blood tests because I'm on hydroxy. Something does not sound right.

Good luck

[Rachelthepotter]

Hi

In the UK, I've never heard of finger prick blood being used for anything except diabetics testing for blood sugar.

All my blood tests have been taken, with more or less degrees of skill, by having a hollow needle put in a surface vein, and several small test tubes of blood collected. Different blood tests need the blood to go into different types of collecting fluid, or be handled differently, so the test tubes have different coloured tops.

I agree with H20Gal's reply -this sounds very odd.

all the best

Rachel

[Hidden in reply to Rachelthepotter]

Thanks Rachel, helpful to hear how other countries test.

[Marossi]

Hi I’m in Switzerland. My haematologist does the finger prick when he just wants to check the haematocrit. This was when I was still having frequent venesections. Now that blood counts are under control thanks to Pegasys I only see him every 3 months and so he draws several phials of blood from a vein in my arm for a more complete check-up.

[Hidden]

Thank you Marossi. Seems like I might need to question their testing procedue here.

[fee13]

For a start, if the doctor knew your platelets were high then why was a venous test not performed? They rather contradicted themselves there. I think in New Zealand we only do venous, never heard of capillary testing.

They do say there is a slight chance of developing vw when your platelets are over the 1 million mark, but once over this mark the blood becomes extra "thin" and more haemorrhage than clotting may occur.

[Hidden]

Hi Debra

All my tests in New Zealand are venous blood. Never been asked to give capillary.

Regards

Guy

[Hidden]

Thanks everyone. Helpful to know what is normal procedure in other countries.

[Boriqua]

Hey Deb, you need a second opinion another heamatologist /oncologist, I was diagnosed in 2015 with Jak2, Myelofibrosis and know I am taking Jakafi but there are a series of test they perform when blood is drawn and they need to get blood from your bone marrow directly ounce at least. Good luck.

[Hidden in reply to Boriqua]

Hi Boriqua, thanks. I am thinking along the same lines of a second opinion, in my home country UK. I had a Bone marrow test 2016.

[Boriqua in reply to Hidden]

I hope we both do better, the new medication comes out in June Fedratinib should help us to be around for many promising medications to stop the disease progression best of luck, God Bless.

[Tomaj]

I was diagnosed with E.T in November last year. I have never heard of this VW disease before. My platelets were about the 1200 mark and nobody told me of any other disease. However, I am still waiting on my bone marrow biopsy results.

[Lab-Rat]

I had Von Willebrand Factor (VWF) when my platelets were >1000. Aspirin is then contraindicated due to bleeding risk with VWF. VWF was normal once my platelets dropped to <700. Abnormal VWF and bleeding risk are associated with high platelets > 1000 - the reason aspirin should not automatically be given to those patients without a prior VWF test. Have only had venous blood drawn in South Africa.

[Hidden in reply to Lab-Rat]

So were your other blood tests done with capillary finger prick tests?

[Lab-Rat in reply to Hidden]

No, I have never had a finger prick test for my MPN, all my tests are venous blood.

[Hidden]

Hello Debra. My wife's platelets hover betweem 450 and 500 and the result is even effected by the age of the blood sample. When blood was collected by local GP and tested later at the hospital the figure was at the higher level. The convers of this was towards the lower figure when sample tested immediately at the hospital. Doesn't really mater really once known!

[Hidden in reply to Hidden]

Interesting. Thank you

[Hidden]

So, things just got stranger. Haematologist just phoned with yesterdays venous blood test results. This time they are lower than the capillary test, only 998. (Capillary test was 1300+.) So on 2 occasions, when i have had both capillary and venous blood tested on the same day, the results are hugely different and in the opposite directions. Can we really put any faith in these blood tests to be accurate??

[Sheryljean]

Hi..

I am I. The US and my hematologist has my labs done both one week and the day of my appointment.. this is done via vein. Never a finger prick.

Hope this helps addressing the issue with your hematologist.

Sheryl

[Cando67]

I have never heard this before.I saw 3 different heamos after diagnosis with ET a year ago.I have not had capillary blood taken only venous blood. Saw heam last week and my platelets now back within normal range at 386. It sounds like a second opinion would be worthwhile.

[Cmg5935]

Hi, I’m in New York, USA. I have ET and see my hematologist every 3 months. My platelet count is in the low 500’s. I’m currently being treated with aspirin.

All blood draws are venous and platelet results are given to me during my appointment. They also test my white cell count, Folic acid, vitamin D and B levels every visit. The results of these tests are given to me within 2 days.

Hope this helps.

[Hidden in reply to Cmg5935]

sounds like you have an informed haematologist. Mine roll their eyes when i mention vitamins.

If i hadn't been low in vit.B12 which gave me lots of symptoms, i would never have been to the GP in the first place. ET was discovered by chance. Despite high platelet levels, i don't have any symptoms for ET and since sorting out vitamin levels myself, feel really well.

All the best.

[Jschwab]

I think it's good that you continue your search for the best Heam for you. I have been through two, now going back to the first who's bedside manner is at least better than the second....that is, until I can find someone who really understandsMPN's, and me.