I have had raising platelets for years since i had my spleen removed in 2012 (I have Hereditary spherocytosis) which is why i had my spleen removed.
Since 2012 my platelets have been raising for the last five years, last year my platelet were in there 600’s and my recent blood work showed them at 738.
My white blood count is 12.4
My GP has been great and i have had loads of blood tests to check my kidneys, diabetes etc and i’ve just had Jak-2 and a BCL-ABL and ferritin test just over a week now, not sure how long it takes for the results to come in.
My blood pressure has been raising too over the last few years and i am on 2 lots of medication for this as it been 160/110 for the last few months it’s now coming down to a normal range.
How long does it take for the test to come back?
Hi @GemT and welcome to the forum. Now, that’s an question for a Tuesday morning. I would hope your test results wouldn’t take too long, however I know it varies from person to person and depends on the test. Has you GP given you any idea of when they expect them to arrive back?
I know that a lot of us on the forum find the waiting so difficult - especially when you are waiting for quite a few. It sounds like you have a lot going on all of a sudden and I can imagine that’s hard. How have you been?
Hello Gem sorry to hear you have not been too good and the higher platelets - I know this period of finding out what’s going on is a difficult one - you certainly have an excellent GP to order in-depth and good blood tests for higher platelets as often that doesn’t happen til you are under a hospital haematology team ! Ferritin test should come back quickly, the Jak-2 etc can take longer so just check with GP how long they expect. Ferritin great to check as low levels of this element of iron bumps up platelet levels high and is easily solved by high dose iron treatment! The other tests are more in the areas of what many here live with and once you get your results we can point you in the right direction of support. As you may gather I am a high platelet person, I have something called an MPN which your Jak-2 test will be looking at. It may take some time to get a clear picture for you but once you have good help will be available to help you get those platelets lower and feeling easier. Keep us posted !
Hi @GemT, a great big welcome and I am glad that you have found us.
As others have said tests results take varying times to come back and that many of us find that the waiting time is the hardest.
I think that we are also such complex beings and nothing is straight forward, also the same symptoms can be differing conditions.
We are here to support you through this and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at firstname.lastname@example.org.
The main thing you can do is to be kind to yourself and look after yourself.
Please keep updating us.
Did you know that you can access your blood test results as soon as they are assessed?
If you download the NHS app and then given written consent to your GP to give access to your medical records you’ll be able to see recent and past blood tests ordered through your GP.
I have regular blood tests and though I’m no expert in interpreting them… I am being more knowledgeable which makes me more confident to ask questions and query things they mayve missed.
It’s super easy to do and may ease the waiting game… esp with backlog and demands of GPS with things opening up
Just a thought
Thanks, already done, @Rammie18, thanks to you.
Thank you I didn’t know you could do that so i’ll do that straight away.
No my GP hasnt giving me a date he just said they can take a while to come back.
Thank you everyone for you help and i will keep you posted on my blood results.
I know everyone is different and has different experiences and symptoms.
At the moment i am feeling very tired and in lot of pain especially my knees and feet, I have started writing down daily dairy of my symptoms to report back to my GP as he has been amazing.
Hi @GemT a brilliant idea to write a diary of your symptoms and how you are feeling.
I have also found it is a good chance to write your questions down, otherwise I come away from an appointment wishing I had asked something.
Fyi… I don’t work for the NHS app…
I just find it really interesting what all the numbers mean
How are you doing @GemT?
Hi everyone. I just found out that ive had high platelets for 10years. I was refered to the heamotolgist and he mentioned the word thrombocythaemia and then said but we will check a blood sample of marrow and go from there. Ive been left in limbo of what actually is going. He said we would discus the results of the marrow at my next appointment in 6 weeks time.
I havent been feeling myself for a long time and convinced myself that everything i was experiencing was normal.
I came across this site by googling the word thrombocythaemia and can see a lot of people mention about having high platelets too and hope its ok to post. Has anyone got any advice/thoughts on what i should expect in my next appointment? X
Good morning @Neelia_38 and welcome to the forum. I’m sorry that you find yourself here. However, I can promise this forum will be here to support and listen whenever you need us. I’m glad Google led you here as the information on this site is all correct and up to date.
Wow, ten years where you thought things were normal - how are you feeling now you have a possible diagnosis? Did the doctor say there could be other reasons for your raised platelets?
It’s understandable that your emotions will be all over the place. I think everybody on here has experienced that throughout their journey.
Although I have a different blood cancer, I remember the initial appointment and how I came home wishing I’d asked so many more questions - I don’t think I took anything in!
You may have come across this information on the site already. If not here it is https://bloodcancer.org.uk/understanding-blood-cancer/essential-thrombocythaemia-et/. There are additional links here to other sections of the site that will provide you with great information around diagnosis and what to expect at your first appointment.
There is quite a lot of waiting around which makes things tough at the beginning, as like you said, you are left in limbo. Did they give you any information at the hospital or a contact if you had questions?
I would suggest writing down all off your questions ready for your next appointment. The support line may be a great place to start and could help with this. Blood cancer information and support by phone and email | Blood Cancer UK.
There are others on this forum who will be able to share their experiences of thrombocythaemia. If you type this into the search bar it will also show you the conversations that have been started on the forum regarding your possible diagnosis.
The next six weeks will be hard. Have you got a good support system around you and people you can talk to? We will be here every step of the way. It’s important you take care of yourself and are kind to yourself. Share on here whenever you need to and use the support service as well - they are invaluable.
Sending lots of special wishes X
Hi @Neelia_38 I am so glad you have found us and had the courage to post.
I can only really duplicate @Nichola75 's words.
Yes, a lot of tests, a lot of waiting around, a new medical language, none of which are easy.
This does give you the opportunity to write down all your fears, thoughts, feelings, questions, symptoms etc to ask your haematology team at your next appointment and many of us on here have learnt to ask follow up questions until you understand everything.
At your next appointment you might be told results of tests, have more ordered, further monitoring over a period and discuss the way forward.
You are not alone, I think we are very supportive on here and might share the same fears, thoughts and feelings as you and the support line is wonderful if you need to talk.
In the mean time you must be in shock so perhaps look after yourself, give yourself time and spoil yourself.
Hello Neelia and as said above it is good you have found this wonderful forum and the lovely Blood Cancer UK, touching base with those that understand and care is invaluable. I do have high platelets under a condition called Essential Thrombocythemia I was diagnosed 15 years ago although like you had had high platelets for some years before and various symptoms that I just thought was one of those things until a good GP put it all together sent me off to hospital and in due course the diagnosis was made. Do know if this is the diagnosis you receive that it is a very treatable condition. It does take a while for a diagnosis to be made and yes a bone marrow biopsy often is done as part of that. There will be much support available to you too both through this wonderful charity and the one that deals specifically with ET which is a type of MPN which is MPN Voice. Let us know how you get on in due course at your appointment and we can support. If a diagnosis is made then you can expect a plan of what to do next, some are kept on a watch and wait with checks being made regularly in blood counts and others are suggested to have some medication treatment - we can point you in the right direction at that time for more information. All the best
It’s so good that you can share your experiences with others. How are you doing at the moment @Jilly20? X
Hello @Neelia_38 I do hope you’re doing okay. I imagine it’s a very uncertain time for you. Of course it’s okay to post on here! Please do feel free to share as much as you like. If you might find it useful to talk things through with us on the support line, please don’t hesitate to get in touch with us. Take care, Alice
Hi @Neelia_38 and a big welcome. You should always speak about how you feel and this is the perfect place to do. A new diagnosis can be perplexing and frightening and it’s comforting to talk to people who have had similar experiences even if you’ve got lots of friends and family. Let us know how you get on.
Hi there, this isn’t a reply to your problem, I hope it works out for you.
I was hoping for some advice for myself as I’m worried. I went to the GP over a month ago complaining of sharp hip bone pain. They did an xray but I’m presuming it was fine because they never said anything about it to me. The doctor asked me to a do routine blood test because they noticed id put on a lot of weight, although that was actually false, I did it anyway.
I got a text saying to book a follow up appointment about my bloods - I did and they said there was signs of inflammation in my results. They said it wasn’t really bad at that point and to book a repeat blood test because it was ‘borderline’. I did and it was slightly higher inflammation. Again, booked a follow up and they said to book another blood test in 3-4 weeks to see if it was a temporary thing or not. Has that test on 2nd August and it was slightly higher again.
My patelets were 507, then 491, then 522. My basophils were 0.1, then 0.11 then 0.12 most recent so a bit high. Then eosinophil were 0.38, 0.4 and then 0.35. So borderline high. Monocytes 0.72 at highest, 3.72 lymphocytes, 10.4 white blood cell count, 4.49 red blood cells, 134 hemoglobin and 0.385 hematocrit. The rest were just borderline or normal.
My symptoms are deliberating fatigue, bone pain, rashes all over my body but especially on my arms, very warm all day no matter the temperature and night sweats and I’ve just started noticing some small weight loss without trying but not as such long term weight loss yet.
I’m really anxious about all of this and I’m worried I could have blood cancer as of course, I can’t help but anxious google symptoms etc. Its giving me existential dread, I’ve being slowly strung along since 9th July and I just want answers. The doctor said Hematology want me to do a repeat blood test of ferritin and B12 which I tried to do today but they couldn’t get blood out of me so I’m going back in a few days. I’m just an anxious ball and starting to drive me crazy.
Does anyone have any insight? Thanks:)