Hypoplastic Bone Marrow No Problem?
Following a routine blood test my GP noticed that my neutrophils were low at 1.5. As my neutrophils continued to decline over the next year, I was referred to the haemotology dept of my local hospital.
Over the following 2 years my white blood cells steadily decreased & the neutrophils went down to 0.8. My symptoms are shortness of breath, sore throat, mouth ulcers, itchy rashes, thrush & tooth abscesses. It was decided they'd perform a bone marrow biopsy. I was called back & told that "unfortunately your bone marrow is hypoplastic". The consultant added that he didn't think I had MDS, "as it is very rare"! He said that the trephine sample must have been inadequate which would result in too few cells available for analysis hence the diagnosis. I asked if he needed to do another biopsy but he didn't think it would be necessary - I lost confidence in the diagnosis from that moment. He said that he'd do another blood test & if the neutrophil count was any lower that I'd be referred to Kings College Hospital for further investigation - they had in fact risen for the first time in 3 years to 1.3 so it was decided to review me in 4 months.
I went home & started to research hypoplastic/hypocellular bone marrow & asked for a copy of the biopsy report which quite clearly stated that the trephine sample was 'very good'. By this time I had completely lost confidence in the consultant.
I asked my GP to refer me to Kings & was seen fairly quickly by Professor Marsh. That day 33 vials of blood were taken. I was told that another bone marrow biopsy would be necessary & a CT scan of my lungs due to my shortness of breath.
I asked the two young doctors performing the second biopsy if the diagnosis could be different as the sample site was on the other side of my pelvis - they said it was unlikely to change & that cellularity would be uniform throughout the bone. I was keen to know why another biopsy was necessary. I asked whether two labs could have differing reference ranges so that Kings might not consider mine to be hypoplastic, they said no. I then asked if my bone marrow could spontaneously recover to which one replied 'not without treatment'. This was an enormous blow but I thank him for his directness as up to this point I hadn't been given any straightforward information.
I called the clinical specialist nurse a few days later who confirmed that the second sample was hypoplastic. My internet research had referred to percentages of cellularity & I wanted to know to what extent my marrow was lacking stem cells. The nurse told me that my cellularity was 10-15% - I gather that for my age it should be 50-60%.
The two week wait for my next consultation was a bit of a worry as I assumed my bone marrow was failing & that I'd almost certainly need treatment.
I'd been told from the first biopsy that there was 'nothing sinister' in my blood or marrow reports. This was confirmed by Kings. The doctor said that my bone marrow was managing to cope with producing a normal range of red blood cells & platelets & that the neutrophils appeared to rise to the occasion when presented with infection. I was told that I seemed quite well & that 3 monthly blood tests to monitor me would be all that's required.
I am of course delighted that I don't need treatment. I can live with a sore throat & mouth ulcers. Since I've lost most of my back teeth to abscesses, I shouldn't be troubled by them too much more in the future. I am however still bothered by my shortness of breath although I know that my oxygen carrying red cells are unaffected & that the CT scan on my lungs was ok.
I am a fairly fit 53 year old. I go to keep fit twice a week & cycle quite a bit too. I would be interested to know if anyone out there has received a similar diagnosis. I'm also keen to tell my story for anyone like me who spent hours trawling the internet. Wrongly assuming from all the available information that I'd need treatment for my apparent failing bone marrow!
Last edited by Shazza : Sat Dec 7, 2013 at 08:13 AM.