Blood tests.... nervous

[Vicky_b]

At last I have my blood tests today for suspected Polycythemia. Dont like the look of the Barts Hospital haematological malignancy diagnostic form, sounds too scarey 😕 Seeing a consultant in 2 weeks for the results. Going to be a looooooong wait!

[mhos61]

Try and keep occupied with other things and hopefully the two weeks will fly.

Keep us updated too, thoughts are with you.

Mary x

[Vicky_b in reply to mhos61]

Thankyou. I'll be glad to actually know, whatever it is x

[mhos61 in reply to Vicky_b]

Yeah, you’re kind of stuck in limbo until you get a diagnosis.

I remember it was about six months for me. October 2015 showed raised platelets, then repeat test in three months, still raised! Referral to haematologist and eventually diagnosed with ET in May 2016. Anyone with a nervous disposition could be driven crazy.

Xx

[mhos61 in reply to mhos61]

ET, is short for Essential Thrombocythemia. It is classified as an MPN (Myeloproliferative Neoplasm), as is Primary Polycythemia.

Briefly, in ET there is a proliferation of platelets, and in Polycythemia a proliferation of red blood cells. The mutations responsible for these changes also impact the quality of the affected cells.

There can also be some overlap between both MPNs. For instance, I have ET (raised platelets) but at diagnosis my haemagloben and haematocrit were slightly raised too.

This is a very general explanation. I hope I haven’t confused you. Look on the MPN Voice website for more in-depth explanation. It is quite complex!

Mary xx

[Vicky_b in reply to mhos61]

Ahh thankyou. As far as I know my platelets are ok but my red blood cells are too high! X

[Vicky_b]

Its a long wait! What is ET? How does that affect you? Sorry, all new to me. I never knew so much could be wrong with your blood!

[Aime]

Hi Vicky, welcome to this forum where you will meet loads of lovely people who will help and support you whenever they can. Joining this forum was the best thing I ever did. As well as this forum, which is closely monitored by Maz and her team, the MPN Voice website will give you trustworthy information. Don’t trawl the net and look everywhere because then there is a great risk of getting bad advice.

It is a confusing time at the beginning of your journey but please take comfort from the fact that there are many people on this forum who have had their MPN for years and are still around. As long as your Polycythaemia is monitored and you receive any treatment you need you can expect a long and happy life. Yes, we all have days we are fatigued but someone is always there to help you.

Eat healthy, keep well hydrated and when you go to medical appointments, write down your questions and politely insist on getting the answers you need, otherwise you will worry unnecessarily.

Take care, kindest regards Aime.x😺😺

[Vicky_b]

Thankyou xx

[James53]

Hi Vicky.

Hope all goes well.

I am currently waiting in the car park at hospital- red cell mass tests today. Otherwise known as blood volume study!!

All previous blood tests over past 18 months have shown high haemoglobin and PCV. Not Jak2.

Guess this will be a long day with plenty of needlework.

Cheers folks

[Vicky_b in reply to James53]

Good Luck! Hope you dont collect too many holes today! X

Have you had treatment over the last 18 months?

[James53 in reply to Vicky_b]

Hi

No treatment

Had scans, various blood tests and now the blood volume study today.

Haematology say it’s Polycythemia but trying to determine cause and therefore best treatment

Best wishes for your results

What tests were you having done?

James

[Vicky_b]

That seems such a long time to not know what will happen. I thought it would all be decided fairly quickly!

I had some basic tests i think, I know one was the jak2 gene test. I've only just been referred to the haematologist as my haemoglobin, haematocrit and red cell count are too high and mean cell volume too low. I have an appointment to see them in 2 weeks & had to have these tests first.

Hope your tests went well. When will you get the results?

[James53 in reply to Vicky_b]

Hi Vicky

The referral I had was from my rheumatologist to Haematology because of high haemoglobin and packed cell volume. Rheumy monitored situation first for 3 appointments so time passes. I had then a 16 week wait for first haematology appointment. They wanted to test over a couple of appointments so again time lapses.

Things went ok today. Just lots of needle work lol.

My haemoglobin sits around 184 and PCV around 54.

Hope you get good news

Cheers

James