Hi, I’m feeling pretty confused and lost right now. I’m 38 and I went to the GP following a sports injury 7 months ago where it was found I had elevated platelets. The platelet count has been fairly erraticly jumping about between 520 and 700 since. The haematologist seemed fairly hopeful it was iron deficiency as I had several symptoms of it but after 6 weeks of ferrous sulphate my platelet count has only come down to the high 500s from 700 so I think iron deficiency is being ruled out. My JAK2 test came back inconclusive so I’ve now got to have a bone marrow biopsy but was told that could also come back normal and that I’d potentially be left without a diagnosis but I’ll likely still be put on aspirin and annual blood tests. I am just wondering if anyone else has found themselves in this situation? I’m getting pretty frustrated with inconclusive medical tests having been through multiple other medical tests this year which have all been normal but no causes found for other symptoms I’ve had this year (though anxiety and perimenopause probably have a lot to answer for). Also scared I’m about to find myself in that frustrating club of having a condition that GPs have pretty much never heard of and have been repeatedly telling me is unlikely to be diagnosed and that I was catastrophising over a situation that probably wouldn’t ever happen but I now find myself in.
Hello @Hayle1807
Welcome to our forum, and thank you for taking time to reach out.
I’m so sorry to learn about your circumstance, and I hear your frustration regarding the same.
The numerous tests your undergoing must be adding to the frustration you’re feeling, but that having been said, its a comfort to learn that your medical experts appear determined to find out what’s happening. I do remember when I was at a stage of test after test, and the worry that this brings, and although I cannot help you, and you can only wait for the results of the tests you mention, we are all here to support you and this is the right place for you to post. It must be horrible for you living with the unknown, and if you feel comfortable You can speak confidentially with our support services team for information and support on 0808 2080 888
Do feel free to let us know how you get on.
Take good care of yourself
Mike
Hi there @Hayle1807,
Welcome to the Blood Cancer UK Forum, glad you found your way here - though I can hear how draining and disorienting the last few months have been for you. I can see that one of our fantastic Forum Support Volunteers @GenesisDevice has already responded, so to add to what he has said:
What you’ve described (platelets jumping around, possible iron deficiency, an inconclusive JAK2 result, and now a bone marrow biopsy on the horizon) would leave anyone feeling stuck in limbo. It’s a lot to carry on top of other symptoms and the uncertainty that comes with anxiety and perimenopause.
You’re definitely not alone in this, and we regularly hear from people whose investigations for raised platelets aren’t straightforward, especially when the first round of tests doesn’t give clear answers. A few members have shared similar experiences in threads like these (and you can search for others, or look at the ‘Related’ suggestions list that should appear at the bottom of this thread):
• High platelets, no answers
• Raising platelets - should I be worried?
For many people, the process is very much ‘one step at a time’, ruling things out, retesting, repeating bloods, and waiting for patterns to become clear. It’s also completely understandable to feel wary about ending up with a label that most GPs haven’t come across often. Your reaction makes absolute sense in the context of everything.
While you’re waiting for the biopsy, please know you can use this space to talk through the uncertainty or ask anything that’s on your mind, whether that’s symptoms, the process, or just how you’re feeling day-to-day. There are people here who know what those in-between stages are like and will be happy to share what helped them navigate it.
As Mike mentioned already, you’re very welcome to call our Support Line on 0808 2080 888 or you can also email support@bloodcancer.org.uk if you’d ever like to talk things through with one of our brilliant Blood Cancer UK nurses. They can explain what these tests usually look for, what different results might mean, and anything else on your mind while you’re going through this.
Take things at your pace, and keep posting if it helps you - this is a wonderfully supportive community and we’re here and listening.
Take care,
Ceri - Blood Cancer UK Support Services Team
Hello there @Hayle1807, welcome to the forum. I’m sorry to read of your concerns but am glad you found us here.
I was struck by what you’ve shared and the anxiety you’ve described as it reminds me so much of my own experiences a couple of years ago. While I’m not a doctor, I also noticed my various blood cell numbers being out of range in annual blood tests, and went on to be tested for the JAK2 gene mutation and had a bone marrow biopsy (BMB). Not fun, no wonder I was anxious!
The waiting was excruciating, but thankfully the BMB was not as I was anaesthetised well. Do ask for anaesthetic as BMBs can feel uncomfortable, a bit like having a tooth pulled if you know that sensation.
It might be that while you don’t have the JAK2 gene mutation, there could be another one affecting your blood cells. There are many different gene mutations, JAK2 is most commonly linked to Polycythaemia vera (PV) and Essential thrombocythemia (ET). So the BMB should find out at the source what’s going on on a cellular level.
Hard as it is to believe, but some blood disorders can be treated with just a simple aspirin. I was diagnosed with Polycythaemia vera (PV) which is closely related to Essential thrombocythemia (ET) and other Myeloproliferative neoplasms (MPN) where a gene mutation, usually JAK2, causes too many blood cells to be made. WIth Myeloproliferative neoplasms (MPN) the proliferation of blood cells can increase risks of blood clots occurring, hence why aspirin is often prescribed as it thins the blood. So I take daily aspirin plus hydroxyurea to slow down my body’s overproduction of blood cells. Perhaps you’d like to read about Myeloproliferative neoplasms (MPN): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
In some ways it makes sense that GPs might not have heard of, for example, Myeloproliferative neoplasms (MPN) as they’re very rare. In my case my doctor happened to have another patient living with an Myeloproliferative neoplasms (MPN) which made it easier for me when I started testing. But I’d say the waiting in between tests and results is the worst part, that sort of anxious place where we haven’t found out yet and we imagine the worst.
If I may reassure you, even the worst case scenarios, in my case being diagnosed with high-risk Polycythaemia vera (PV), can actually prove to be tolerable. It took a few months to get used to taking hydroxyurea every day as it caused horrible fatigue, but 2 years later I’m back to my previous energy levels and am healthier in other ways as I try to keep active every day. All while living with a rare blood cancer! So, please try not to despair if you do get diagnosed with a blood disorder as there are many modern treatments available.
Sorry if that was a bit vague—you’re in that difficult spot of awaiting diagnoses. I see @Ceri_BloodCancerUK has shared some great links. Do consider calling Blood Cancer UK as you’ll get to speak to specialist nurses who are lovely and know what you’re dealing with.
If I may be so bold, I’d say now is the time to find some healthy distractions to help bide your time. Perhaps have a look around the forum as there are many of us living well with diagnoses that we never imagined tolerating. Keeping active can help burn off some of that nervous energy I imagine you might be feeling.
Please do let us know how you get on @Hayle1807, you’re not alone with those worries.