Hi All
I use the forum quite a lot especially to ask questions it had been extremely helpful to me. This time l need advice on bone marrow biopsies. I had mine last week (Tuesday) after being referred from my local hospital to Guy’s Hospital where there is a specialist MPN team. I went into the biopsy with a platelet count of 1790 which had gone up 200 in 4 weeks. I had a blood test back at my local hospital (Thursday) and my count had gone down to 1200 that’s down over 500 in 9 days.
Is this even possible?
My current medication is Interferon once a week and Hydroxy 9 tablets over a week. Although l hadn’t had any injections for 2 weeks before latest blood test.
My biopsy was both liquid and an actual piece of bone marrow?? l know that the doctor showed me both.
I also had an ultrasound on my liver and spleen yesterday.
Can a platelet count come down that much in 9 days? I having another blood test on 6th July as now they have increased the interferon to 135mg a week they need to keep an eye on me.
If anyone has had any similar numbers and experiences of numbers dropping drastically and what were their experiences with the biopsy could you please let me know.
It has been a difficult couple of weeks 3 different hospitals last week but if my count is dropping all will be worth it.
Thanks I’m advance for any advice and or replies x
Hi @Maureen31 very interesting question as I have often wondered about fluctuations in my full blood count variations over the 19 yrs I have been having them.
I am not a medical person.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses for you.
I wonder if anyone else has any experiences.
I wonder if using different testing facilities makes a difference.
Do they all test to the same normal ranges.
It will be interesting to know what your specialist nurse or consultant says.
Please let us know. what they say.
This is something that the old graph paper showed up so clearly!!!
Be kind to yourself
I echo what the amazing @Erica has said but readings are easily contaminated either by staying stagnant for too long, or the bottles etc. I think it is wise whenever you see a big drop or increase in readings that the test is redone to confirm the original findings. I am constantly checking with my levels and though I’ve not seen such a drop as you have they have fluctuated with no explanation. There are so many factors and influences and not sure if it’s the maths/stats in me that know anomalies and freak results can happen with easy and complex explanations. That being said hydroxy and interferon is designed to lower your platelets and maybe that you body has process more than usual.
I would definitely encourage further tests and communicating with persistence with your medical team. If anything for your own anxiousness and concern, I know the people at st Thomas and their mpn team are a great and supportive bunch of people so you’re in good hands!
Keep us posted
Maureen
I had a platelet level of 46000 on the 12 of may on the nineteenth of May it had climbed to 58000. I am a CMML sufferer. I was very surprised. Hopefully your question and concern will enlighten me as well.
Best wishes
Unclejack
Thank you all so much for your replies. @Erica,
@Rammie18 and @Unclejack. That’s why l love this forum, you think you are on your own but you really aren’t.
So l spoke to the doctor at Guy’s today l have to have another scan on my liver and l asked her about the change in numbers she couldn’t really say why at the moment but that maybe l am sensitive to changes in medication etc. she said she will know more after the next blood test and all the results from the biopsy.
UncleJack l have ET and thought my numbers were high. Yours are soooo high. I hope you are keeping ok with such high numbers. And Rammie18 thanks for the advice it is much appreciated and Erica you are always there with encouraging words again much appreciated. Take care everyone x
Maureen
Sorry to confuse you with my platelet numbers. On the NHS website and mayo clinic they say 150,000 to 450000 is the normal range I think that probably means 150 to 450 in some experts way of assessing platelet levels. My levels although quite low are not as yet dangerous. As an aside thrombocytopenia started my journey. BUT after suffering a minor stroke I was prescribed clopidogril blood thinners everything was Okay for two years then a short while after my third covid vaccine shot thrombocytopenia arrived. In April haemotology took me off clopidogril and within a month thrombocytopenia symptoms disappeared, no penachet or bruises since that decision. So all a rather confusing situation. Thanks for your reply and concerns but as yet my platelets are low as are nutrifils
but manageable. Just the way they are measured is different.
Best wishes
Unclejack.