Last update (at least for a while)

[nellietheelephamt]

I saw the NHS consultant on Tuesday. Apparently anaemia and blood clotting issues are not dealt with at haemotology.

She did send me for a blood test and I ended up being tipped out of my wheelchair and ended up in A&E where the bloods were redone. The blood test results not good (I had to do some teaching there!) and I got a unit of red blood cells.

Since then I have collapsed several times but no idea why. My Hgb has come up a couple of points after the transfusion but ferritin remains as was.

So a lot going on but very little to suggest MPN or not. I was negative for JAK2v617f and the local haemotologist says other mutations and anomalies are so rare as not to be worth testing for.

So that is me discharged with the private consultants (both of them) having their treatment plan disregarded and no further progress.

[nellietheelephamt]

I'd like to add that I have collapsed several times this week. My GP suspects Addisonion crisis which I have had previously. I will now research (myself) any connection between anaemia, erythrocytosis and adrenal issues. Could we have been wrong all these years looking for issues that never did exist???

[Mostew in reply to nellietheelephamt]

I do hope you get to the bottom of what is going on. Bad enough collapsing etc. But not knowing why must be stressful.

Best wishes to you

[saltmarsh]

So sorry to hear you are going through this. Can only hope you get some answers soon. Wishing you the best

[nellietheelephamt]

And after a further collapse I have been transferred to another hospital and have been in the High Dependency Unit for 2 nights. One (or more!) of my falls produced 3 fractured ribs, internal bleeding and a collapsed lung plus collar bone hairline fractures and shoulder joint displacement all missed at the local hospital A&E but picked up by specialist review. I thought I had just pulled a muscle and the pain was because I am a wimp.

I am getting 5* treatment and it's like a private hospital in here so I am being well looked after. The hospital consultant has almost quadrupled the conservative cortisol dose prescribed by my GP so hoping that helps. I missed my endocrinologist appointment of course but managed to get word to them about what was happening.

[RoundTheWorld in reply to nellietheelephamt]

I'm sorry that you're still having such a struggle to get treatment at first pass and have had such nasty injuries now. Is s there a senior medic dealing with you now that you can ask to advocate for you with your local 'team'?. You obviously shouldn't have to be taken further out to get adequate care. Glad you are now being treated better and hope you heal well.

[nellietheelephamt in reply to RoundTheWorld]

Thank you. I am sure there will be discussion and recommendations but how far those are followed up is a different matter.

A letter came for me on Saturday saying the appointment I was due to have in September would take place hopefully before June next year. I am glad it is a routine DEXA scan and not critical.

[nellietheelephamt]

Hgb now at 88, down from 98 post transfusion but probably due to internal bleeding.