It started with haematocrit 12 years ago. Then came the ringing ears. I was living as a British expat abroad and couldn’t find a suitable haematologist. I tried to deal with the symptoms alone. Moving back to the UK my GP referred me to an NHS haematologist. He tested me for Hepatitis B and C without my knowledge. He didn’t do the Polycythaemia vera ('PV') tests he had promised during the appointment. Never said why. I moved to a Myeloproliferative neoplasms ('MPN') specialist. Symptoms horrendous - pounding, pulsating head, itching, burning fingers. Red cell mass 133 % predicted. JAK2 neg. I begged for venesection. Denied me because I didn’t have JAK2 or Exon 12. Specialist recommended bone marrow biopsy Moved to countryside to care for elderly parents. General hospital did NGS - neg. Symptoms through roof, like my head would explode, and couldn’t walk straight. Referred to tertiary centre London. Consultant told me ‘you can’t have a bone marrow biopsy, you’re not just large, you’re extremely large. We wouldn’t have a needle long enough to biopsy you. If we did, you’d only break it.’ I cried for weeks afterwards. Stayed indoors, humiliated and disappointed by the encounter. His words resounding repeatedly in my head. I eventually recovered my self-esteem enough to have the biopsy at my general hospital. Lovely kind staff, procedure successful, but it elicited a dry tap (aparticulate hemodilute aspirate) and a 3 mm crushed and crumbled trephine (core) and is suboptimal for diagnosis. Symptoms worsening - losing vision, flashing lights, falling over from dizziness, swishing head, waking up multiple times with finger joint pain and almost deaf from the pulsating head noise. So weak now and Hb plummeting. Haematocrit is still 0.48 and has been for 3 years (female) with no treatment. Ferritin is 10 (15 to 300), Tsat 14 - general haematologist told me to take OTC iron - unspecified amount -‘you work it out’. How can I take iron without raising my RBC and HCT? Told me to return in 4 months to have bloods checked. I have literally given up seeking a diagnosis or treatment. It has been an exercise in humiliation and frustration. Each symptom is dismissed as belonging to another specialty and as ‘not related to the blood’. But the other specialties say it is blood, it is hyperviscosity. One day I’m told I have triple neg polycythaemia, the next idiopathic, the next Secondary, the next day Masked Polycythaemia vera ('PV'). Endless blood tests, but zero treatment and everything I know about erythrocytosis I got from the internet. I haven’t been told to take aspirin, let alone undergo venesection. What am I to do? I am 61 and have dealt with the symptoms for 12 years now. Do I have to deal with them for the rest of my life?
I’m so sorry to read your post. It sounds like you’re having a really bad time at the moment.
I think your post really needs some expert response.
I would recommend you reach out to the @BloodCancerUK-SupportTeam to speak to the wonderful nurses.
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Call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
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I hope that helps and take care
Hello there @Pippilongstocking24
Really sorry to hear that you are still experiencing such awful symptoms and that you feel at a loss. It does sound like a second opinion would be the best next step in order for you to get some answers. I appreciate that this may be anxiety provoking for you with the previous haematologist but I would hope this would be a far better experience. You have had some very upsetting consultations and that is not acceptable, I am really sorry to hear this.
You mentioned that you were told that your symptoms are not related to the blood, may I ask whether in that case, have you been referred to other teams like neurology or ENT (ears, nose and throat) to assess whether they have any input on why you are experiencing these symptoms? I would suggest that you escalate this with your GP.
If you do need to talk, do call our blood cancer nurses and in the meantime I am sure the forum community will continue to support you.
Best wishes
Gemma
My appologies, I deleted my post in error. Thank you both for your kind responses.
I don’t have Polycythaemia vera ('PV') but I’m so sorry to hear how unsupported you are feeling and how you’re getting conflicting diagnoses. I would agree with @GemmaBloodCancerUK about getting an additional opinion - especially about being prescribed iron supplements - as you say, surely this is counterproductive in terms of your haemocrit and Polycythaemia vera ('PV')? I don’t know which tertiary hospital in London you went to for another opinion but Professor Claire Harrison at Guys and St Thomas’s is an expert in myeloproliferative blood disorders. And you might also contact Myeloproliferative neoplasms ('MPN') Voice charity for support and information about Polycythaemia vera ('PV').
Really hope you can get to the bottom of this and find some relief from your symptoms.
Hello there @Pippilongstocking24, welcome back to the forum., although it sounds like you’ve needed to express this rolling medical horror for a while. Thank you for sharing it here, what a lot you’re holding onto.
May I suggest, like dear @DuncanB says, that you give the nurses at Blood Cancer UK a call? They’re experts in all this and can offer medical advice and reassure you about the science behind what’s happening with your tests and potential diagnosis. Their free number is 0808 2080 888.
From my own experiences of going through testing first for a gene mutation and then the bone marrow biopsy, I can empathise with much of what you describe. I did end up being diagnosed with Polycythaemia vera ('PV'), which 3 years later is now stable. I am told my lifespan will not be affected by it. Please know that there are many people around the forum who live with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and it can be pretty tolerable, speaking for myself.
Your sense of frustration is very understandable and hopefully it feels better to let it out. Imagine being able to write to the doctor and tell them about the confusion caused by your treatment so far? Perhaps you might, maybe even just for yourself. Better out than in, I say!
I was lucky to change haematologist after my first one told me, confusingly, that the Polycythaemia vera ('PV') he’d diagnosed me with wasn’t cancer, and the chemotherapy he’d prescribed wasn’t chemo. It caused me greater anxiety at an already difficult time, and so I used that as motivation to seek a more accurate, caring specialist.
There are services which can help liaise between patients and the NHS in situations just like yours where a health concern has carried on. Perhaps you’d like to have a read about PALS in England/Wales and PASS in Scotland? NHS PALS: What is PALS (Patient Advice and Liaison Service)? - NHS and NHS PASS Scotland: https://pass-scotland.org.uk
If you find yourself still stuck in between testing and getting a diagnosis despite you seeking answers, there is the Jess’s Rule initiative where the NHS needs to act on someone’s health concern if they have presented with it at least 3 times: NHS England » Jess’s Rule: Three strikes and we rethink
And may I say, I do really hope you don’t end up being diagnosed with Polycythaemia vera ('PV'). Let’s keep some hope before any diagnosis! And if it is Polycythaemia vera ('PV') then you know you have support here.
Do have a look at MPNVoice that dear @ChrissyD shared, they have great information and resources. I’d also question taking “whatever” amounts of iron when we need less of it with these sorts of blood disorders, from my understanding at least. I had to stop taking a multivitamin that had iron, for reference.
Hope that helps a little. Do please keep us posted about how you get on @Pippilongstocking24.