Thank you for all allowing me to join this forum. It will be so good to correspond with people who have already "been there".
A bit about me. I am a female, mid-60s and living in Scotland.
About 16 years ago I was diagnosed with erythrocytosis and had regular phlebotomies which kept that NHS under control. 12 years ago my haemo retired, and in line with the regular practice of the hospital, all his patients were discharged back to the care of their GPs. I had other serious health issues at the time and my GP also retired so the blood count issues slipped off the radar.
Fast forward to about 30 months ago and I was feeling dreadful. My GP ran blood tests and found I was very anaemic. Over the last 2 years I have had tests repeated over and over - all negative so the conclusion is that the anaemia is not related to a GI bleed. The only treatment I have really responded to is packed red blood cells transfusion.
Due to incompetence within my local hospital the urgent haematology referral has been lost so there is another delay there. I have little confidence in the haematologist in any case due to a number of issues. In Scotland we can request a second opinion but this can be refused.
Just to further complicate matters my last GP has also left the practice so I need to start a new relationship with someone new when I am feeling so awful myself.
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nellietheelephamt
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Sorry to hear about the troubles accessing competent healthcare. You deserve better. It is your prerogative to file a formal complaint. You can also contact an advocacy service to access assistance in getting your medical needs met. Here are a few of the services available.
All that has been done and the usual warm replies received but nothing actually done. Even the SPSO advice is that it depends on the local health board and consultant.
Sorry to hear about your experience and that you have been so ill. Depending on which NHS Board you are with you can submit your concerns via their local complaints department and ask also if they have any MPN Specialist in their Board or can refer across Boards.
As my local Scottish Board had no specialist and had long saga to diagnosis I paid to see a private MPN Specilist. I saw him twice and it was fundamental in obtaining that expert support. I am now with my local Haematology department who thankfully have MPN Nurse which is a great support. I can opt at anytime to return to the Specialist if my condition worsens, progresses etc. It was well worth the small investment in my health to see him.
There are also the in-person MPN Voice Forums which we have been lucky to have in Scotland this year too. They are very supportive.
I too have PV and phlebotomy was one of the culprits for my low iron & anaemia. Its a catch 22 where sometimes the treatment exacerbates or causes more symptoms.
I do hope you navigate the system ok and get the care you deserve. Let us know how you get on.
Thank you. There is no MPN person here and the haemotologist only does 10 hours a week so it's all a bit dire. Could I ask who you saw privately as that would be a definite step forward? Unfortunately I can't get to the in person forums as they clash with other things and being in a wheelchair plus not driving means transport is a real issue as I have to get accessible taxi which is not easy in a rural area. I live 6 miles from the nearest place of any size and 26 miles from a train station.
I should also say that due to budget constraints there is no referral outside the health board area. A friend of mine has a pancreatic tumour which should have been referred to Edinburgh a year ago. He is now at stage 4.
You have really been failed by your local NHS institutions. I am so sorrry. I am by no means an expert but what you say resonates with my own diagnosis of MDS/MPN. Perhaps I should, but I'm not worried about my platelets. They are not very high. But the MDS - refractory anaemia with ring sideroblasts. In other words, my haemaglobin has immature cells (the blasts) and this means less oxygen is pumped round my body. Those immature cells never mature and appear deformed. These diseases are very rare and are often caused by a mutated gene, though not in my case, or if so, the mutation hasn't been recognised yet. GPs rarely know about them. But specialists do exist in the UK. These diseases are on the same spectrum as leukhaemia and can evolve into that condition.
Blood tests and bone marrow tests are they way to diagnose these complex and very varied conditions. You can ask to see a specialist near you. I might be wrong but it doesn't look as if you have received any intelligent probes into your condition.
I went to my GP with loud thumping in my ears. I was lucky because the GP I saw was not the one I normally saw. He immediately said "This could be a symptom of anaemia. I'll send you for some blood tests". I thought - oh, a course of iron tablets will fix me, or eat more dark green veggies, so I was shocked to receive the diagnosis of something that, at the time, represented the sword of Damocles dangllng over my head! For me, it's not that bad, but your condition sounds much worse and should not be dismissed simply because they can't identify it. Fight for a diagnosis. It sounds as if you need medication that is a bit more than "watch and wait and an aspirin a day".
You are so right. I feel stonewalled at every turn.
I have both large and small red blood cells which are funny shapes and abnormally coloured.
I do not respond to iron supplements and had a severe adverse reaction to iron infusion.
Hoping to be referred on by the haemotologist in September but expect her to shrug and discharge me as I have had to fight tooth and nail to get the appointment. If I can persuade whichever GP I will be assigned to (my previous GP just left the practice) to make a private referral it will be money well spent.
"I have both large and small red blood cells which are funny shapes and abnormally coloured". This is what they've told you your RBCs look like. I think medical science has to go further than that! I found out that anaemia doesn't automatically mean you need iron! In fact, infusion of iron would have adverse effect. The other thing is that MPNs are what they look for now but they forget there are also MDS (myelodisplastic syndromes). You may not have ring sideroblasts; perhaps the funny shapes are due to some other kind of squashing or squeezing or whatever, but do go on line, if you haven't already, and see if you can find a specialist (it will have to be an MPN specialist) in Scotland and don't let them tell you you can't go outside your own local authority. MPN specialists are spread very thinly over the UK. London, Leeds, etc. Professor Harrison comes highly recommended - like a godess if you like! You have to fight or get someone else to fight for you.
Thank you. The very best I can hope for when I finally get to see the haemo is that she refers me on. At the moment due to budget cuts the local hospital just isn't referring out of area.
Depite recommendations, I have not seen an MPN specialist; My prognosis is fairly low i.e. not much chance of progression to leukhaemia, and I have no reason to doubt the skill of my haematologist. Fingers crossed you see yours soon and she refers you on. If not, you have to see your GP and fight for your right to health. You have not caused whatever blood disorder you have.
Hopefully you can get a referral to an MPN specialist. If you can’t physically get to them you can have either a video or phone consultation. Blood tests can be taken locally and the results emailed to them. I’ve just done that with Guys in London.
I think it will be worth paying to see an MPN specialist, providing the price isn’t extortionate! However your GP should be able to do an urgent referral, it was a locum GP who sorted my referral to Guys after my haematologist kept saying they would write to them (they didn’t!) I know the NHS in Scotland works a bit differently to England. Hope you can get diagnosed properly and get some treatment.
Hi not sure where you are in Scotland but there are def MPN specialists in Scotland. Albeit I went private but I see Mark Drummond out of Spire in Edinburgh and he is fantastic. But he specialises NHS out of the Beaston in Glasgow so you could ask to be referred there . I also have a friend who went private to him for diagnosis and then got treatment via NHS so might be a way to get help . Good luck
To my dear friend in Scotland, greetings from LA (LOWER ALABAMA) America. Lol. I am sorry 😞 to hear about the care given over in Scotland. I won't be much help not knowing how the bureaucratic health care works over there. For now here in America we can get as many opinions as needed but most people will have to pay 20% of the bill and with specialists it is expensive. Just a side note about me.I was diagnosed the first part of the year with early mylofibrosis an ET. Platelets at the moment are 938,000 and I am taking hydroxurea for it. Just had carotid artery surgery Friday due to a 80% blockage which I believe came from the platelets being high for the last two years. My only advice would be to keep bothering them till they do something and also you would be directed to a great GP that can get you to the specialist you need. Glad you are here. I have gotten a lot of great advice here and you are with people that actually care and have love ❤️ for one another. Have a blessed day and I pray for your healing. We all need that and right soon I might add.
Hello and welcome nellietheelephant! I am now in Scotland but luckily near Edinburgh and I see Dr Koutsavlis at Western General. I've actually had very good treatment since I moved here. I was originally referred to Dr Mark Drummond in Glasgow and he arranged for me to see Dr Koutsavlis who also works with the transplant team there. I have to say that I am lucky in that I was under Prof Harrison's team in London before I moved and Dr Koutsavlis keeps in touch with them. I am so sorry you're having such a struggle to get properly diagnosed and cared for. If there isn't a decent haematologist locally, could your GP refer you to the team in Glasgow? You could always do a zoom appointment maybe? All the best to you. Hilary
If I can get an agreement for referral to a private consultant money isn't really an issue (no pockets in a shroud). I have waited 2 years already to see a haemolotogist after an urgent referral and both I and my previous GP were stalled at every turn.
Not long to wait until I see the haemo at the local hospital and I have a long list of questions. I don't expect much from her so won't be disappointed. The three outcomes I am expecting are she will refer me on (unlikely), order a bone marrow biopsy (also unlikely) or discharge me. However I also have at the back of my mind she will cancel the appointment at very short notice.
Well I saw a haemotologist yesterday in my local general hospital. A rocky start with "Why have you been referred here? This is a GI issue", then she read the summary I had prepared and the attitude changed. No blood tests taken as no phlebotomist on duty even though it was the monthly haemotology clinic (go figure) so bloods to be done tomorrow as there is no egress / access from my house today due to The Tour of Britain cycle event. The haemotologist also found quite a lot in the written notes that had not been followed up , but should have been, after the previous haemotologist and my then GP both retired 10 years ago. As I said to her a lot of things fell into a crevasse and with the lack of communication which is still evident it isn't too much of a surprise.
Bone Marrow biopsy to be done a week tomorrow which is so quick I do wonder if she suspects something or if it is embarrassment as to lack of answers so far. She admitted she had made an error in cancelling previous treatment and apologised plus will make enquiries as to why the ward request and referral to her went astray in May/ June.
So what was a rocky start has resolved somewhat and I feel she will refer on if necessary. I am to come off my warfarin on Friday ready for the biopsy but will need to do daily INR checks (I have my own machine which confused the specialist as she was unaware of any self monitoring patients in this area). I have a supply of emergency heparin in case the INR falls too low.
It is a round trip of over 50 miles to the hospital and I don't drive, no public transport, so a nuisance having to go back for things that should have been in place. At least I no longer work for an employer so don't have to beg for time off and produce paperwork in support.
Quick update. I was supposed to have my bone marrow biopsy today but there was an issue at the hospital ( my notes not read and no local anaesthetic available) so it didn't happen. I am now waiting for a further appointment or transfer to a different hospital.
The blood tests show my iron stores are now fully depleted.
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