I have joined this site for some advice and it seems to be a great support network. My story is that before the start of Covid I was unknowingly referred to the Haematology Department at my local hospital due to having high platelets. It turns out that the GP had checked several past Blood Tests and they all showed high Platelet levels. I only had an initial face to face appointment and since then either 6/12 months telephone consultations. As of yet my Consultant will not provide a diagnosis , I have had gene testing which was negative. However yesterday I received in the post an invite to arrange my Shingles vaccine , I turned 50 last year. I contacted the GP surgery today to arrange this and was informed I was sent the invite due to being immunosuppressed and advised me to speak to the Nurse when I go for the vaccine. I do have some symptoms , fatigue, palpitations, dizziness, pins and needles , itchy skin.
I also emailed my Consultant for further clarity last summer but again had a response of “ no diagnosis yet “ my platelets are stable in the high 400’s
I am just wondering if anyone has any advice or thoughts.
Hi @Kath a great big welcome to our forum.
I am a bit confused as your post is titled ‘Essential thrombocythemia (ET)’ but you say you have not had a diagnosis yet.
If you are going for a Shingles vaccine it is worth contacting your surgery first and telling them your dilemma because if you are immunosuppressed you might need the ‘non live’ shingles vaccine Shingrix and when I had mine it had to be ordered especially for me, it might have changed and they might be stocking it now for the immunosuppressed.
Perhaps when you have contact with your Consultant/GP next it might be worth writing down your fears and questions and say what it is like for you living without a diagnosis. I have learnt to be pleasantly assertive and make sure I get answers or reasons and a way forward.
Really look after yourself and please keep posting how you are getting on.
Hello @Kath
Welcome to the Forum.
Thank you for posting about your situation, I am sorry you don’t have all the answers you need currently.
My suggestion would be to request your next appointment as a face to face appointment, and not as a telephone consultation (you can do this by ringing the Haematology secretaries and stating you have not been seen for a long time, and you wish to discuss things in person as you have many questions you don’t want to ask over the phone).
Are you in a (geographical) position to ask for a second opinion? Are there other hospitals near by with a Haematology department, that you could go to?
You can request a second opinion by asking your current Haematology team to refer you, or you could ask your GP to do it. Ask for a referral to an Myeloproliferative neoplasms (MPN) specialist, they can discuss your diagnosis with regards to genetics and blood results.
If you ask your GP to do it, they will want a name and hospital that you choose, but the Haematologist will already know someone and this can be easier.
As @Erica has said, discuss the shingles vaccine at length before you have one, as you need to know the correct one to have.
Do call our support line if you wish to discuss anything further: 0808 2080 888
Take care, Heidi.
Hey there @Kath, welcome to the forum. I’m sorry to read about how long you’ve been living with these uncertainties and lack of diagnosis. Although my wait between finding I have the JAK2 gene mutation and being diagnosed with Polycythaemia vera (PV) was relatively short, it was excruciating having some but not all the information. I can empathise with how it might feel for you now, in this Schrödinger’s cat type scenario of neither being diagnosed but knowing something’s not right. I’m also sorry to read that you’re experiencing those symptoms. If you have tested negative for gene mutations linked to Essential thrombocythemia (ET) and other MPNs then consider that a positive. We can still end up diagnosed with all sorts of blood disorders without having the typical gene mutations, but I’d say try to err on the side of relief.
Like @Erica and @Heidi_BloodCancerUK say, try to get more direct information from your haematologist. All this waiting without knowing is bound to cause anxiety and worry. Stress can actually exacerbate blood disorders. While you don’t yet have a diagnosis I would steer clear of reading up on MPNs like Essential thrombocythemia (ET) and Polycythaemia vera (PV). There’s a lot of inaccurate nonsense online, but current information and research tends to be found more easily with blood cancer organisations like this and LLS.org.
Keep us posted how it goes @Kath and don’t be shy about asking for more information from your doctors about what is on file but not yet shared with you about your own health.