I’ve stumbled across this group while trying to use google to get some answers for ongoing issues with my blood test results.
My gp had been testing every few months as my platelet found was raised, it still fluctuates a bit but varies between low 500’s-600’s. I have been referred to haematology who after cancelling a couple of appointments have now run some more tests but keep cancelling the follow up appointment and my gp can’t see the results of their tests.
After haematology cancelled my original appointment I then received an appointment for an abdominal scan which they had ordered but then I did see the haematologist who said they wouldn’t have ordered it without seeing me. When I told him exactly who had booked it and when he had to accept it was them but then just dismissed it and cancelled it, so I never got the scan. My confidence in them is so low as they seem so unorganised and I still haven’t been given a follow up appointment 4 months later.
My gp is still doing regular blood tests and most other results are within normal range. My test in July showed low ldh but elevated alt. Then in September my ldh was back to nearly in the low end of the normal range, alt wasn’t tested. My CRP was 9
My latest results still show elevated platelets , alt is now normal but my ldh is now elevated at 323 and my Crp is 38.
Other than the general feeling of not being myself that I have felt for a while now I haven’t had an infection recently so can’t explain the elevated Crp with that, the ldh is also rather worrying.
Can anyone advise me if I am worrying for nothing or if there is another route I can take to actually get some answers. I’ve had to resort to google to try and get some answers as don’t seem to be able to get them from the professionals and of course that throws up all sorts of worrying answers.
Has anyone else been through anything like this trying to get answers?
Hi @Tweetypye, thank you for your post and a very warm welcome to the forum. I’m sure you’ll be welcomed by others with open arms, but I just thought I’d check in to see if you’d like to talk this through with our Support Team? Our support line is open 10am to 1pm at the weekends, 10am - 7pm Monday, 10am to 4pm the rest of the week (the number is 0808 2080 888).
I’m so sorry to hear of your experiences. It can be so anxiety-provoking to have blood test results outside of the normal range and difficult when we feel we are not getting the answers we are looking for. Might there be a GP at your practice whom you feel comfortable with, that you could speak to about your results? Do you have a Clinical Nurse Specialist via the haematology team that you may be able to contact to share your concerns? If you have not been provided with a contact, it may be worth getting in touch with the secretary to ask about this. I’d certainly say that you don’t have to wait until your next appointment to seek support around this as it’s so important to get the right advice for your circumstances.
Please do let us know if you’d like to go through this at all- we’d be happy to support you.
Hi @Tweetypye a great big welcome to our forum.
@TanyaBloodCancerUK has given you good thoughts.
Hospitals might have a PALS service (Patient Advice and Liaison Service) that might be of assistance to you and it might be worth keeping a diary of events showing the number of changed appointments you have had and stress how this has made you feel I.e. anxiety levels, stress, let down, no confidence etc. and it’s impact on you.
I have found being 'pleasantly assertive works for me.
Perhaps ‘Dr’ Google sometimes isn’t the best thing, although most of us have done it.
I have found since my diagnosis I have entered a world of waiting.
Please keep posting as I look forward to hearing more about you.
Look after yourself.
Thank you both for your welcome and suggestions. I will contact the PALS team at the hospital and see if they can help.
I will try and avoid Dr Google and hopefully get some answers from a real Dr soon. In the meantime I am grateful of the support here
Hi, So an update.
My local hospital posted a tweet about not carrying the worry of cancer and get test to get answers. I responded and they asked me to contact the General Manager of Haematology directly to give them the details. Turns out that the original consultant I was booked with resigned, so I was put on the list of the other consultant I then saw. After that I was put back on the list of the original consultant that had left hence why they again cancelled my appointment. I wonder if I hadn’t made any noise if they would have ever rebooked it?
Anyway I got to speak to the consultant this afternoon who was really short with me and quite dismissive of my concerns and just said they genetic tests they had run were negative and it basically wasn’t their problem.
Ok so maybe it isn’t but he agreed there is something wrong, I have also noticed on my last results that my MPV was low too, again he just said that’s because there is an issue somewhere.
I appreciate that perhaps now the ‘blood cancer’ forum might not be the right place for me as he seems to not think it isn’t a bone marrow issue but just wanted to update you.
Back to the drawing board I go and hope that my GP can come up with some answers!
Oh @Tweetypye I can tell how frustrated, upset and let down you sound.
Please let us know what your GP says. Perhaps be ‘pleasantly assertive’
Be kind to yourself
Hi @Tweetypye I have been thinking about you, how are things going?
Look after yourself
Hi Erica, thanks for asking. My gp has referred me to haematology at another hospital as she hasn’t been able to get answers from this one. I am seeing them at the beginning of December so hopefully will make some progress then. My gp has also referred me for an ultrasound scan to rule out liver/kidney/spleen and she has run bloods which rule out rheumatoid arthritis.
It sounds as if you are being well looked after @Tweetypye.
Please let us know how your appointment goes at the beginning of December.
Look after yourself
Hi Erica, just a quick update, saw the new Haematologist on Friday and she arranged for me to have a bone marrow biopsy on Monday. Feeling a little sore but hopefully this will mean we get some definitive answers in the New Year.
Hope everyone has a good Christmas and gets to spend time with their loved ones.
Got everything crossed for you that you get some answers in the New Year! Please do give us a shout on the support line if there’s anything we can do to support you at any point.
Great, @Tweetypye but sorry you are in limbo over the festive period, typical.
Please do let us know how you get on.
Look after and be kind to yourself
Just an update, I have received the results of my bone marrow biopsy and they have come back clear.
Such a relief the haematologist has just said to monitor bi-annually but feels the raised platelets are reactive so the monitoring will be sufficient.
Thank you for all the support on here, it’s so nice to know there are people out there to help when you need some comfort
Take care all