Hello everyone, I am wondering if anyone has been diagnosed with a high platelet count of 480 or 430 and what your doctor’s reaction was. My second visit showed a count of 430 which isn’t very high but he was on the fence about doing a bone marrow biopsy and starting an oral chemo medication. He decided to monitor things and recheck my count in November. At first I was happy but now a little panicked at the thought of not knowing what is wrong. He checked for a Jak2 gene which was negative. Has anyone been monitored before like this? Should I have the bone marrow biopsy to find out what is wrong or am I just over reacting? Of course I am thinking of a life ending situation! Thank you in advance for your opinions.
Hi, welcome to our community forum. A good question that perhaps there is no definitive answer to, but perhaps others experiences. I personally (not medically) believe that my medical team take so much more than one indicator into account before making a decision. Being on ‘watch and wait’ myself, I find that is often more one test is taken before seeing a trend. We are all very special, unique, complicated beings. The problem for me is living with the not knowing and yes, of course, soon after my diagnosis I had written my will and funeral music.
Don’t forget that the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day.
Take lots of care of yourself and please keep posting, we are all here to support you and seem to share similar fears, anxieties, thoughts and feelings.
Hello, and welcome to our forum! How are you? Your message mentions high platelet count, have they mentioned a condition they think may be the cause? Our booklet on MPN’s may be really useful, as there is a blood cancer called essential thrombocythaemia where the body makes too many platelets, usually as a result of a genetic mutation. JAK2 is one of them, but there are 2 others you may wish to discuss testing for with your doctor? The section of our booklet to look at is pages 33-41, which discusses diagnosis and testing in more detail - including other causes of high platelets which should also be ruled out.
Have you seen a haematologist, or is it your GP undertaking these tests? A bone marrow biopsy is an option in terms of diagnosis, but you may wish to explore further genetic testing, as it is less invasive, before a bone marrow biopsy.
Please do be reassured that you can live well with ET, and with the right treatment and monitoring most people can expect to live a normal lifespan.
Please feel free to contact our support services if you want to discuss any of this further, Erica has kindly shared our details. You can also email us if you’d prefer, firstname.lastname@example.org
Thank you both for the information and encouragement. It helps alot to know there are others who understand and share their experiences.
The diagnosis I was given was thrombocytosis since he is unsure what is causing this. I am seeing a hematologist. He’s one of the best in our area.
I have been having regular routine blood tests for a number of years as I take blood pressure medication. About 4 years ago, my GP told me that my blood count was elevated for red and white cells and platelets but not to be concerned as they would keep it under review.This is how things remained until last September when I suddenly went blind in my right eye and this lasted for about 3 minutes before my sight was restored. My GP referred me to the Stroke clinic with a diagnosis of Amaurosis and TIA .I had a very prompt response from the hospital followed by a very thorough health MOT including brain scan, echo, carotid dopplers, the results all good for a man of my age, which is 71. However attention was drawn to my blood results which were elevated, my platelets being around 520. The consultant thought for the sake of completeness to refer me internally to the consultant haematologist.Things really started moving at this point. I was very quickly diagnosed with polycythaemia vera with Jak 2 mutation. He decided that because I had had a retinal blood clot [Amaurosis] that wait and watch was no longer appropriate treatment for me. I was given 3 venesections at weekly intervals and this very quickly brought my blood count to within normal limits. I was also prescribed Hydroxycarbamide 500mg daily which acts on the platelets in particular, reducing their numbers. My consultant was very reassuring. He told me that providing my blood results stayed within normal limits, my life expectancy was that for any 70 year old. My readings are now within normal range, platelets 250-280. I realise that I am very fortunate in that my diagnosis has had little impact on my life. I get very tired from time to time and I have annoying bouts of intense itching particularly after a shower or bath. I have regular blood tests every 6-8 weeks followed by a phone call from the haematology department a few days later with the results and a decision whether i need a venesection or not .I am in a situation where I need a venesection about every 4 months which is about how often I used to donate blood, which of course I cannot do now.
I hope that I have given you some reassurance and good luck when you see the haematologist.
Thank you for information, you have been through a lot and done well. Definitely gives me hope.
I have been told that it is advisable to keep platelets below 400 but if that is impossible don’t worry unduly if it goes up a bit to, say, 460. I have essential thrombocythaemia and the standard treatment by daily pills is designed to keep the platelets low and the haemoglobin fairly high… Unfortunately it isn’t always possible.
Hi Ian, welcome to our community forum and thanks so much for introducing yourself and telling us the details of what’s gone on for you. I hope to read more from you, take care.
I’m pleased to hear this, I hope there is some more clarity for you with your next appointment. How are you feeling currently?
Thanks for sharing your story, may I ask how old you are? I have a situation in which my platelets are between 500/600 and am also Jak2 negative. However my consultant refuses to do anything as I’m under 40 and I have been told I’m not at risk.
Thank you for sharing your experience, it sounds like you went through an awful lot on your road to diagnosis! I hope you’re well now, and doing okay? And a big welcome to our forum, we hope you find it welcoming! There is a thread for people living with an MPN you may wish to join in, which you can find MPN's - living with.
Hi, I was put on watch and wait at first because I was diagnosed with CMML, but due to advances in testing they have found that I am at high risk of turning acute. I would think a bone marrow biopsy would be a good idea if only to put your mind at rest.
Hi @colin56, @Blue_Box. @Beachchik. @Helen1 and @jumbo4. I think reading and re-reading your posts it has really come over to me that although we all have blood cancers, we also have other conditions, age, differing blood tests readings and medical histories and are very special, unique beings. Personally I think my medical team take into account all those things and probably other things I do not even realise when considering the best way forward for me. Personally I have given up ‘Google’ ages ago. What I have learnt is to write down all my fears, questions, symptoms, thoughts and feelings and ask my medical team everything I want answers too. I am also big and brave now and ask the follow up questions too. Please let us know how you get on all of you as we are all here to support each other.
Hi, I am new to the forum and can relate to this thread. I experienced numbness in my left arm that lasted for a couple of minutes each time. I was referred to the stroke clinic with suspected TIA. At my appointment on 7th November I was admitted to the ward with possible crescendo TIA. But following an MRI scan it was found I had had several small strokes. The only thing that could be found wrong was a platelet count of 1181 I was prescribed aspirin and statins and referred to Haematology with possible thrombocythaemia. On 28th November i had an appointment in Haematology and was told they were pretty sure it was essential thrombocythaemia but needed to do further blood tests and possibly a bone marrow biopsy. I would then start taking Hydrocarbamide. I was some what panicked the following day when the doctor called me to say my blood test the previous day had come back with a platelet count of 1700 and she wanted me to start the Hydrocarbamide straight away. I had the biopsy last Thursday and I am awaiting the results of the weekly blood test. At the moment no news is good news. My next appointment is on 9th January, when I hope everything is confirmed and my platelet count is shown to be dropping. So fingers crossed.
Hi Andrew, welcome to our community forum, you must have been all over the place emotionally in the last few weeks and now you are left in limbo for the next 3 weeks. We are all here to support you as I expect nearly all of us know the feelings and emotions of not knowing. If you would like to speak to someone the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Bloodwise will not be available on the Bank Holidays. Take care of yourself and please do let us know how you get on.
Hi there @Andrew1, wishing you a very warm welcome to the forum Thank you so much for sharing your experience with us. It sounds like you have been so much in the last month, I do wish you all the very best with your appointment in January. Often awaiting the results of blood tests can be a worrying and uncertain for many, so please do feel free to offload on here about how you are feeling. Take care, Su
Hi, Erica and Su, thank you for your comments. I am especially interested in how people have coped with the side effects if any from taking Hydrocarbamide - what are they, how severe, how soon can I expect them. I have been taking the capsules for 17 days so far and haven’t experienced any apart from feeling a little tired on Monday. I thank the community in advance of any reply.
As others have said, it’s a difficult question to answer, because every patient seems to be different. The risks associated with ET depend on age, general health, presence of other conditions and so on. It’s then confused by the fact that different consultants also seem to vary a bit in their recommendations. We thrombocythemia patients are pretty rare birds, so it’s even more difficult to make statistically valid recommendations!
I’m 75, been living entirely normally with ET for getting on for 7 years, on 1000mg Hydroxycarbamide and 75mg aspirin daily. I have the deletion form of the CALR mutation, which seems generally to be regarded as the least “nasty” of the mutations, although it does seem to carry a greater risk of Myelofibrosis, but apparently of a form relatively susceptible to treatment. The HC did give my gut flora a bit of a shock when it started, but they’ve adapted happily and there are no significant side-effects apart from brittle nails (a bit of a problem for an active gardener) and occasional itching, which Aveeno skin cream seems to control. The only other thing to watch is getting sunburned; HC apparently increases susceptibility to one of the skin cancers. Over-exposure to sun is difficult up here in Aberdeen, but it’s still wise to keep slathered in sun-cream and to keep skin covered. But nothing helps the brittle nails!
With regard to the specific question about platelet levels, mine hover around the 600 mark and, from memory, since starting treatment have never dropped below 500. The consultant in Aberdeen, and his predecessor, both suggest that the risks associated with raised platelets doesn’t increase linearly as numbers go up, and they would only start to worry once the levels get above 1000. When first diagnosed, I was pretty fit and healthy; they would be more worried about precise platelet levels if there were other conditions present. As you note, the problem with raising the dose of HC to suppress platelet numbers also hits haemoglobin, so it is always a balancing act.
Hope that helps; maybe you could let us know if you have any other health problems, which might cause your doctor to be more cautious about precise platelet levels.
I am 53 and healthy up until this point. I have no other medical conditions, don’t smoke but do like a drink within reason. I like to walk which keeps me active and reasonably fit. I hope, with no other complications I can cope with ET and continue to lead a normal life. Or am I fooling myself?