Hi, my name is Diane and i live near Great Yarmouth in Norfolk. I was diagnosed with Essential thrombocythemia (ET) about 6 years ago and am being treated with hydroxycarbamide. I am also on Clopidogrel (blood thinner). My platelet numbers have been up and down all during my treatment. I am on 1000mg for 5 days a week and 1500mg 2 days a week. The specialist i saw 2 appointments ago is about at the end of her tether i think about why my numbers are so up and down and it feels like she is clutching at straws about what to do next. I was so stressed out after that appointment i just came home and bawled my eyes out. The letter she wrote to my GP was total BS as she put untruths about my family history and she told me to see my GP and get him to make me an appointment to see a respiratory consultant (after i have had a clear CT scan on my lungs, a clear chest xray and also a clear sputum test…)Sorry about rambling on but i just needed to share my experience with somebody.
Dear @DianeW,
Gosh what an awful experience you have had, I am so sorry you have been left feeling so deflated. Thank you for coming here and sharing with us, please never apologise for rambling.
As a first step would it be worth having a chat with your GP about how you feel? Perhaps making them aware that the clinic letter was inaccurate.
Could you ask to be referred to a different consultant? Perhaps there may be a consultant who specialises in Essential thrombocythemia (ET) locally to you who may be able to shed more light?
If you would like to call us on 0808 2080 888 we could help you work through some of these questions.
Best Wishes,
Heidi J (Support Services Nurse)
Oh @DianeW thanks for sharing your experiences and I really felt so upset for you
I know how stressed, upset and hurt I would be, words and untruths cut me to the quick.
As for untruths that is even worse.
How have your last couple of appointments gone?
Perhaps you might think about responding back to that letter and concisely itemise out the issues you feel are untrue and put them right.
If the matter is not resolved at that stage you might consider going to your hospitals PALS (Patient Advice and Liaison Service)
Perhaps explain to your GP what has happened and how you are feeling and consider finding another consultant
We are here so please do post on here and really look after and be kind to yourself