I initially presented at the GP with increasing migraines with aura, then was diagnosed with hypertension which I’ve been treated for and haven’t had migraines since. I had routine blood tests which showed raised platelets.
I’ve now been referred to haematology as my platelets are persistently raised (currently over 600) and the GP marked it as an urgent referral. Today I rang the referral number and the closest bookable appointment is July 31st. Is there a difference between an urgent referral and a cancer referral, which I know is two weeks?
Many thanks
We are so sorry to hear that you have been having issues with migraines and hypertension, as well as a blood result showing raised platelets.
It is likely that your GP will of made this referral for you and that you will receive a letter with an appointment in soon for haematology.
We would advise perhaps calling the GP surgery to see if they have more information about this referral as what usually happens is that GPs will send off referrals, they will get assessed by the team within that speciality and then will be marked as either ‘urgent’ or ‘routine’.
You are correct in saying that for majority of cancer investigations this will be under a 2 week wait referral, however, it will depend on what has been decided when this has been triaged by the haematology team. Perhaps check this with the GP receptionist as they will usually be able to see what this has went through as and if a date or time frame has been given.
Hi @Barry1 I cannot better @Emma_BloodCancerUK response to you, but I wanted to welcome you to our support forum.
If you are anything like me the waiting and not knowing are anxious times.
I hope you get your referral as soon as possible, whether it be July 31st or not.
In the meantime I would suggest you write all your fears, questions and practicalities for the appointment and don’t forget all investigations are to rule conditions in or out.
Perhaps with very generic symptoms it makes it more difficult to make a diagnosis.
Please do look after yourself and do let us know how you get on.
Thank you both for your replies. I’ve spoken to the GP receptionist and they said the referral had been marked urgent from their end but then it would be triaged by haematology like you mentioned above Emma.
I took the option of being referred to my local hospital which doesn’t have bookable appointments so it will hopefully be before July (they mentioned there might be cancellations etc). I really hope so as the wait is definitely something I will struggle with.
Just wanted to give an update on this.
Haematology referred me back to the GP as they hadn’t done some other tests and they thought it may be reactive thrombocytosis as my MCV was low. They did tests for iron deficiency and my saturation is low and ferritin at the lowest end of normal so I’ve been prescribed ferrous fumerate. I thought this may be due to giving blood possibly, although when they measure my haemoglobin it’s always ok, so felt quite reassured that is was due to iron deficiency. However today I had an ultrasound scan which showed my spleen is at the upper limit of normal. They did say that’s still normal but it’s still worrying me to be honest. I’m having my bloods repeated after I’ve been on iron for 3 months to see if my platelets have been brought down. I’m foolishly looking things up and scaring myself now.
I’m also due to travel to Europe next week and I’m stressing about DVT. It’s only a short flight so I know I’m probably being silly.
Just would like a definitive answer but know this might take a while.
Hi @Barry1 yes everything seems to take a while.
You yourself say that you are ‘foolishly looking things up and scaring yourself’, so I will not comment on that.
Perhaps enjoy your trip to Europe and wear your socks and keep moving your legs if you can. Look after yourself.
Thank you for keeping us updated.
We can imagine it is worrying not having a definitive answer, but hope that with further check-ups you are able to told the reason for your high platelets and hopefully these start to come down.
Do keep us updated with how you are getting on
Please enjoy your holiday & take care, if you would like to chat through anything further with us on your return and think it may be easier to speak to one of our support nurses, do feel free to give us a call on 0808 2080 888.
I’ve had my bloods rechecked and although my ferritin is higher now (52) my platelets are still high (605). On my notes it says abnormal but expected and no further action needed which I think is positive but I’m a bit confused and will ring the GP next week. I just wondered if platelets take a while to come down once the underlying issue has been treated (low ferritin in my case)?
Thanks for letting us know how you are getting on.
Platelets can be raised for a number of issues and some of these include iron deficiency and recent infection or inflammation.
It sounds like a good idea to get back in touch with your GP.
They may want to repeat these bloods in 3-4 weeks time to check that your platelet levels are returning to normal range, if they don’t suggest this, you could perhaps ask them for this and hopefully this will provide some reassurance.
Hello again. My platelet situation is still ongoing and I think like other posters on here I’m getting a bit frustrated and worried with the back and to. I was referred to haematology back in September following me querying my results but the waiting list seems to be really long. A lovely GP shared my concerns as my platelets remain high and I’ve been getting increasing migraines and they asked for the referral to be expedited in November but still no appointment.
As such I’ve paid for a private consultation with a haematologist this week. Has anyone else gone down this path and has any tips for getting the most out of it? I am self funding so there is a limit to what I can afford following the consultation. I also realise I’m in a very privileged position to be able to pay for anything at all but I was getting so anxious and I already have OCD so my mental health hasn’t been the best.
Morning,@Barry1It is completely understandable that you’ve reached this point. When you are dealing with high platelets, physical symptoms like migraines, and the added weight of anxiety, the “wait” for an appointment can feel impossible. Taking control by booking a private consultation is a very proactive way to manage that stress.
I know many of us have shared here are tips to help make that appointment as effective as possible:
• Tell the consultant: “I am self-funding this visit to get answers, but I need any further tests or treatment to happen on the NHS.” Ask them to write a clear recommendation to your GP for the specific blood tests needed.
• Write a Symptom Log: Mentioning your migraines is important.
• Prepare Your Questions: Write down exactly what you want to know. For example: “What is the likely cause of my high platelets?” or “What are the next diagnostic steps?” This helps keep the conversation focused if you feel anxious during the meeting.
You don’t have to deal with this uncertainty alone. The Blood Cancer UK specialist nurses are there for everyone, including those who are still waiting for a diagnosis.
Thank you so much for your very kind and helpful reply.
I do feel a bit better taking some sort of control, but is also an unknown in terms of what to expect at the appointment, but what you have advised has reassured me. It’s hard to see the wood for the trees sometimes!
I will let you know how it goes. My appointment is later today.
Hello, just an update. I had my consultation with the private haematologist; it was quite a lot of me discussing my history and blood tests and concerns regarding essential thrombocythemia/polycythemia vera and them agreeing that something isn’t right and it is unlikely be reactive. So it was nice to be listened to, if a little scary that my concerns are probably not wide of the mark.
Blood tests for the genetic mutations have been ordered and I’ve also had another blood count done which shows platelets have gone up a bit, haematocrit is also a bit high (this has been variously the high end of normal/high throughout) and haemoglobin is also high so this potentially indicates polycythemia vera which was probably masked by my iron deficiency, but obviously won’t know until I have the genetic tests.
I have to say, with the exception of a couple of GPs at my practice who have also been concerned about my blood test results, I have been quite unhappy with how this has been dealt with. Once my iron was corrected and my platelets remained high, the GP who reviewed my test results stated in my records that no further tests, no referral and no treatment necessary. It was only when I queried this that another GP thought I should carry on with iron and have more blood tests, which again showed higher platelets and I was put on the haematology waiting list. I also had blood tests in December which showed higher platelets again plus high haemocrit and these were marked satisfactory by the reviewing GP. I can’t fault the GP who I saw most recently and who chased my referral, albeit unsuccessfully but I am concerned that had I not had access to my results and understood what they may indicate (I am a scientist in an unrelated field so have some knowledge) that nothing would have been done. Sorry that turned into a bit of a rant!
No need to apologise this is the place to get off your chest whatever you need to.
I know that through various apps like the nhs app and patient access and a specific portal linked by my local hospital I can see every test result ,every scan result ,every letter that is written about me. Sometimes it’s useful others it can actually be confusing as I am no medical expert and interpreting results isn’t black and white.
For anyone else struggling to get their data, here are some ways to access your results in the UK:
1. The NHS App (For GP Records)
Most people can see results automatically in the NHS App.
• If you can only see a summary (just meds/allergies), ask your GP receptionist for ‘Coded Access.’ This gives you the right to see the actual lab values and the doctor’s notes.
2. Hospital Results (Patients Know Best / MyChart)
Hospital tests (ordered by your Haematologist) don’t always show up on the GP app. Many UK trusts now use portals like ‘Patients Know Best’ (PKB) or ‘MyChart.’
• You can often link these directly to your NHS App under the ‘Your Health’ or ‘Health Data’ tabs.
• If your hospital isn’t on a portal, you can ask your Clinical Nurse Specialist (CNS) to email you a PDF of your ‘Full Blood Count’ (full blood count) trends.
3. Your Legal Right to Records
If you hit a brick wall, you have a legal right to your records via a Subject Access Request (SAR). You can email the Practice Manager (for GP) or the Hospital Trust’s Data Liaison and ask for your results from a specific date range. They must provide these for free, usually within 28 days.
