Hi everyone, I had high platelet count since September . My GP was completely ignoring me, I had to get one blood test done privately, then really push for one, then for the referral - which they completely messed up, so I won’t have an appointment with a Heamatologist till mid February ( only a phone one). I am getting really worried actually, I initially thought they are ignoring me because it probably isn’t a big deal, now I am very scared. I have two children in two different schools, ( no bubbles in secondary ), Tier 4, I don’t know what to do. My platelets were 480, 500, 500 ( latest in December). I do have anxiety, I have sleeping issues- but no other symptoms. Can I push somehow for a quicker appointment? Thanks
Welcome @WorriedM to this forum. I am glad you have found us. Thank you for sharing your story. I can really understand your concern especially with the current Covid pandemic. If it is any consolation a platelet count of 500 is only slightly higher than the normal range and we are all individuals and some people have a slightly higher level that is normal for them. It is good that you don’t have any other symptoms and if the doctor was really concerned I think they would have asked for an urgent appointment. Sometimes a slightly high platelet count can just be due to having had an infection. I am not medically trained and so obviously the haematologist will be the best one to help you. Hope this helps a bit. Thinking of you. Please let us know how you get on. Warm wishes. Willow.
Hi @worriedM, a great big welcome to our community forum, I find it very informative and supportive.
@Willow has given you a good response and I am also not medically trained either, all I can think of is to ask for a last minute cancellation by others appointment if one becomes available, although that is not doing me much good at the moment !! Telephone appointments seem to be the normal now.
It is no good telling you not to worry, because that is easier said than done. However I have found in Covid times my emotions are heightened and all over the place and sleep pattern upside down…
The Blood Cancer UK support line number is there for you above.
Take care and spoil yourself and let us know how you get on and we are here to support you.
Thank you for your replies, I am trying not to worry. The whole situation is quite frustrating. I tried to ask for an earlier appointment, there is nothing available. I asked for at least some guidance regarding shielding ( children at schools ), I was told to check online guidance or ring my GP ( who are useless). So it feels like I am stuck.
Hi @worriedM, yes, I think the education and shielding information is changing by the moment and depending on where you live even with Tier 4.
Yes, it really is frustrating isn’t it and appointments are like gold dust because the medical services are still trying to catch up with cancelled appointments during the first lockdown.
The good news is that you have no other symptoms.
I remember a nurse saying to me that if they do enough blood tests they will find something out of the normal.
I think you are in a limbo situation at the moment without a diagnosis, if there is one. The not knowing is the worst and a horrible place to be, so please keep sharing how you are doing on here.
Hi if it’s any consolation I have had platelet count over 500 since 05/19 at present am 597 however was 723 in 07/19 also have monocytes at 2 which is classed as abnormal I have been diagnosed as CMML 0 since 08/19 .I am just on watch and wait my specialist thinks may have had since 2011. I am 71 years old and still in good health. Don’t panic be positive of all the blood cancer websites you read more success stories than not so good ones. If it’s only the results that worries you but you feel okay that’s a positive I am sure if that’s the case a few weeks for consultation isn’t too far away, be positive .
I’m the same as you ! Platelets raised since September 512, 508, 565 then 508. GP not bothered. Did a CRP check which was raised but he just said keep taking your iron even tho I don’t have anaemia. I’m sure they are hoping that at the 6 month mark after all this it will have disappeared and they can just pretend it never happened. I’m worried it’s an inflammatory condition or worse. Never had a discussion about any symptoms with a GP. I think at the levels ours are it looks like it’s a reactive issue and they should be finding out the source of the problem. Easier said than done in a pandemic though! Keep us updated how you get on. I’m trying not to overly worry about it and trust the professionals but when anxiety is involved that’s out the window !
Hi @Kitty a great big welcome to our forum and I think it is so comforting to know you are not alone.
You have made me think and although not as high as yours, @Kitty, @grahamcheyne, @Willow, and @worriedM my platelets do vary by quite a lot at different blood test results.
I have found during Covid times that my emotions are really heightened and all over the place and anxiety and fear are my main ones.
Has anyone else got experiences about platelets?
Glad to see that you have found us @worriedM . I hope the other responses you have had reassured you to some extent. It’s understandable to be worried and I hope you are able to get the right kind of appointment to put your mind at rest.
If it’s any help to you I like you wanted answers to having a raised platelet count when it was flagged up at a routine medical for a job interview many years ago before I had my second child. ( she is now almost 34 )
Mine was raised but not too much and my GP had no concerns ( as others have said platelets can raise with infection or inflammation)
I asked a midwife again when pregnant months later about my levels to be told “ ooh they are a bit high “ again noone was concerned.
Being a nurse , but not by any means an expert in such medical matters , I was more curious than concerned.
My GP at the time referred me to haematology (because he knew I wanted answers) but it does involve a wait unless you have symptoms or it’s sky high.
I underwent tests but as I was young in my 30s and levels were only slightly raised was told nothing would be done or need to be done and they simply monitored me from time to time.
There are various reasons why your platelets are raised and as others have said some people have a normal slightly higher.
I’m sure your appointment when you get one will give you answers and I’d advise going in with pen and paper in case they throw lots of information at you .
I fully understand you being anxious but pretty sure they would have acted promptly if they had big concerns.
Mine turned out to be my bone marrow being too over productive of platelets, but it’s only been recently aged 67 and a half that I’ve been given medication for it as my levels did go much higher about 2 years ago . If I tell you it upped to over 800 yet it was 6 months before I started any medication as it lowered a bit naturally and it was hoped it would continue to I hope that makes you feel better ? I had no clue my levels were this high , no symptoms ,
I am generally very fit and well and have no other medical problems.
Easier says than done I know as I fully understand you wanting answers. I felt the same way many years ago but try to trust that they don’t consider you urgent. The clinic appointments can move slowly - at the moment mine are all by telephone .
Shielding advice can be very varied . It’s not for me to say but my personal case I’ve been advised no need to shield as such just to take all the gov advice seriously, especially at the moment . In my case all my other blood test results are fine so I’m at no greater risk than any other 67 year old but some patients may be more prone to infections due to treatment making them immunosuppressed in which case they do need to fully shield.
I had a spell last March where I was very confused and unsure about shielding like you possibly are now . My advice would be until you’ve been seen just stick rigidly to the gov guidance of hands , face and space. Maybe with extra caution around shopping etc the Yelp hint helpline may be able to help you further.
Try to stay calm. Good luck
Thanks Brenda for taking the time to post so comprehensively I am sure you will help many people.
I look forward to hearing more from you as I think you write so well.
Has anyone else got a platelet story?
Don’t forget there is also the MPNvoice site which is specifically for MPN patients, which the OP appears to be.
For what it’s worth, my platelets have been fluctuating around the 600 mark since I was diagnosed with Essential Thrombocythemia 7 years ago, when I was a mere stripling of 69. Been on 1000mg of hydroxycarbamide ever since with no problems and haematology say it’s not worth trying a higher dose to try and reduce platelets further.
But one odd thing; I’m starting radiotherapy for prostate cancer this week and so got a baseline blood test to see what nasties it might do to bone marrow. Lowest count I’ve had since diagnosis - 475!
@DickM, thanks for the MPNvoice site reminder.
I will be thinking of you next week when you start your radiotherapy for prostate cancer Please keep posting how you are getting on, us special blood cancer forum are here to support each other.
Take care and stay safe.
Best wishes for your future treatment. You’ll be in safe hands I’m sure as oncology are pretty on the ball with the haematology aspects and will I’m sure do what’s best for you .
Thanks Erica , I only tend to dip into the forum but I do know how anxious I was before I accepted to take hydroxycarbamide and know only too well how much it helped me to read other people’s experiences .
Hopefully it will help others to read mine . ( even if I do ramble on a bit )
I think fear of the unknown is often the most stressful thing. Once on a roll with any treatment and having good support and explanation from the medics was so helpful to me in my situation.
If it’s any help my platelets have never been lower than 500 for 7 yrs…They’ve risen fro…the high 500s to 818 .1200 then.1300 to 1700 plus. With medication they dropped To the 800s and went back up …then dropped again to 600 were they remain…I was on aspirin for many years but took the medication as platelets were rocketing . I take 1000 mg of Hydroxycarbamide and 1.5 mg Angralide a day …drink lots of water and try to stay calm. I have been diagnosed with ET and Calr positive…I find I get tired alot but I take each day as it comes…don’t worry about the numbers and stay hydrated …I hope you get the answers you need and there are many people who are happy to advise you if you need help…it’s a worrying time for many …this pandemic doesn’t help…be kind to yourself and don’t worry to much . Some really good advice given already and lovely to hear people’s own accounts to help you…
Thank you everyone for your comments. I do come back regularly to read personal experiences. At the moment I am just waiting , and trying to stay calm:)
Actually I do have a question.
Once you had a high platelet count , did you all get CT scans to investigate the possibility of various cancers? According to research people with high platelet count had a higher chance of being diagnosed with cancer within 6 months. Is a CT scan part of the routine investigations? Just to rule out the possibility the of tumors causing the rise in the platelets? Or what other investigations did you have to determine the possibility of a secondary cause ?
Hello @worriedM. I can understand your concern regarding your raised platelet count. I don’t think a CT scan would be performed in the first instance. From my experience I think the haematology investigations would be done first to see if it was your bone marrow that was slightly overactive, producing too many platelets. I think it is a case of eliminating the causes one by one. Hope that makes sense. As has been said before, it is good that you don’t seem to have any symptoms to cause concern. Warm wishes. Willow
Thanks, Brenthebaker; I hope you are right, but my confidence has been rather dented to find that the specialists involved didn’t have a clue about the interactions between RT, Thrombocythemia and Hydroxycarbamide. Fortunately, I was warned by another specialist, did some digging in the literature and found a number of refereed papers which finally convinced them. Just occasionally 60 years as an academic scientist can come in useful!