Just another update

[Notdiagnosed]

I had my telephone consultation today and it was a haematologist pharmacist. She said all mutations are ok (which I knew of) but there is something called triple negative et. I said I had heard of it.

She said the only way to know for sure was a BMB but regardless of bmb or not they would still only monitor anyway because of my platelets being stable and no treatment. I said I didn't want one if they are monitoring. They would have done one though for a definite diagnosis. But I'm a wuss and my platelets are not that high so I am OK without knowing.

I asked about a copy of blood tests and she said sternly "no". She said she once tried to print some off for someone and there was too many pages. I said we'll can I view them if I come in. She said next time you come to clinic and see the haematologist you can ask then.

She asked about folate levels which are quite high and whether I took supplements. I do take a multivitamin for menopause but nothing else. She said its unusual to be that high.

She said my last weeks bloods were quite a bit different to my others and I explained I have covid and tested positive that day. My lymphocytes have been 4 since beginning December but now 0.9. Whereas before lymphocytes were always 2 before december.(or 2015 as that is when I have records of and I've never had it mentioned at hospital) . Something happened for them to double since december. They are low now . Because of covid I expect. (I'm still very positive 9 days into it and been quite rough with it if I'm honest)

All in all I am happy they are still going to monitor and I also am having a spleen scan and abdomen and that might reveal more reassurance anyway.

My next appointment will be a few months down the line. I explained that I felt ill and not myself from when we 1st locked down and I think I got covid that week and everything else just followed one thing after another. And got it again just as bad as last time now.

Like I say I'm happy with the monitoring. I can live with that.

[Otterfield]

You have a right to see your blood test results, I'm quite shocked that she refused. When I have mine printed out it's generally one page, two at the most. If you are in the UK, there is a way of logging on to your NHS record to see all your medical data, but I have never used it as the team always provides anything I ask for. On the subject of a BMB, there is nothing to fear if you decide to have one - just some discomfort and some aching afterwards, for most people. I've had five!

[Notdiagnosed in reply to Otterfield]

Thanks Otterfeld. Seems I'm at a loss with copies of my blood tests. I have asked and she told me quite bluntly NO. And a big no too. She said I would have to ask at haematology at my next appointment. I was just shot down completely. I don't want to seem like a trouble causer but I feel she was wrong too. Very wrong

I will have to write maybe to haematology and ask. And I am now wondering if they have done the mutations at all. Makes me wonder why she was so blunt.

I have emailed pals to ask for copies now.

Let's hope I get to see them. I'm just wanting to see everything for myself. There is nothing wrong in that. They are all ok so I can't see a problem in it. Would help my stress levels too.

[JP1952]

I get my blood test results by email. Could you request that?

[Hopetohelp in reply to JP1952]

Me too. I email my haematologist secretary and get results by return

[beetle]

The nurses who print out my blood results seem to treat it as though they are doing me a secret favour. Maybe they don’t want to print everybody’s but it’s more a feeling that they don’t think they should be doing it!

[Notdiagnosed]

Hi. Thanks all. I emailed pals and pals have sent me a subject access request thing.

They are really being as awkward as they possibly can be if I'm honest. My advocating for myself has now caused them to be as difficult as they can be. I must be down as a trouble causer. I'm quite upset by it now.

I just wanted copies of the tests because the other week when I called I was told quite a few tests were done and quite a few in the red then yesterday when I had my telephone consultation she said all were OK. And she was very dismissive of me having copies. And about the bmb too saying after asking for sedation IF I decided to have one she said no. We only give a bit of gas and Air.

I may email the secretary asking for copies. Although I don't know her email address. And pals told me the other week that if I ask for results I would need a very good reason to do so. I think I'm doomed where the nhs is concerned now.

Edit. I cannot find any email address for haematology. I'm just going to have to leave all this. It's not whether or not I have et that's making me so anxious. It's how the hospital are making things very awkward for me I wish I had never been more assertive now.

[Exeter21 in reply to Notdiagnosed]

Yes insist . Mine were high without me knowing since 2016. Always told fine . Asked for bloods this year re injury & again told fine. Still never released them to me eventually found them on nhs app. Platelets high. Kicked up & few days later Haemotology send for me to be told I have ET JAK2 . I suspect I would never have known until too late with a clot or worse 🙈

[Cakeface]

If you can't find the details on your hospital website, maybe you could ring the hospital and ask them for your consultant's secretary's email address?I can't believe that you're having so many issues! My blood results and consultations are always reported in a letter to my GP and I get a copy sent to me.

Good luck

[Notdiagnosed in reply to Cakeface]

Well I've just rang and asked the secretary and she said they are not allowed to send results out. I said cam you email me then. She said no.

She said the only way is via your gp surgery. But my gp says that they don't have access to the hospitals blood tests. So there I have now exhausted the options. My only option is via a sar. And I really cannot be bothered. I give up with it. I can view my gps blood tests but not the hospital ones. And obviously our hospital isn't going to allow me for some reason. They are making themselves sound so suspicious to a reasonable request.

[Cakeface in reply to Notdiagnosed]

No wonder you are so frustrated. I'd be furious.😤Can your GP not contact the consultant? Did he refer you? If so, surely he/she will get feedback?

[Notdiagnosed in reply to Cakeface]

He has got feedback but I just wanted copies of the actual reports of the blood tests. Not just a yes positive or yes high or low. I wanted to look for myself. I honestly am beginning to think they were not done. I know that sounds strange but the nurse practitioner who called me a couple of weeks ago seemed to be trying to tell me that most likely only jak2 was done because they don't usually do the others.

I went in 2004 2008 and 2009 and there is nothing on their system they say regarding apparent jak2 done then.

I honestly don't want trouble. Just peace of mind snd I am not going to get it ever. They really have not treated me as they have others on here. In fact I honestly wish I'd never attended the gps or anything and left things be. My anxiety levels are nothing to do with physical health. They are that my trust in our hospital is now zero. And if you cannot afford private health care then you are doomed. I feel more low at how I'm being treated. I only wanted to see my test results. Nothing else. Just view them . If they have done these tests they have nothing to worry about my seeing them. Unless they haven't done them anyway and then they should have told me so.

And ironically I've just had a text for feedback of my pharmacist appointment I had yesterday. If I wrote what I really want to write and was truthful I would get worse care from them. I think I'll decline to pass comment.

[Cakeface in reply to Notdiagnosed]

The Jak2 test is separate. I had mine done recently at a haemotology appointment with my consultant and 3 phials of blood were taken by the nurse and a different form along with the normal bloods one were completed by the consultant. The Jak2test usually takes up to 4weeks to come backI'm sure you will get answers eventually

[Notdiagnosed in reply to Cakeface]

Yes I had 5 vials or 6 taken back in April that were mutations but I've never physically seen the results. And lots more blood tests were done but I never saw results. I just thought that patients could view blood results. I know a receptionist said that lots of the results were in the red (quite a few she said) but pharmacist that rang me yesterday said they were all ok. I just need to see these.

I rang whilst waiting for the results and was told that jak2 was negative but others not back. I rang again and was told that maybe the others were not done because they only usually do jak2. But then I had a copy of a letter sent to my gp saying they all come back nagative and that she did them just for my peace of mind. But I honestly think they never did them. Why would the pharmacist be do blunt that I couldn't see any of my bloods. And even pals have said I would need a very good reason

[rebeccaxxx in reply to Notdiagnosed]

You will get them if you do the SAR. Maybe fill it out when you are less fed up by the whole ordeal that is dealing with the bureaucracy.

[hunter5582]

The plan to just monitor for now makes sense. If you are fine with no BMB then that is the right choice for you. Glad to hear you are going to do the spleen scan. That is standard of care for MPNs.

I must say I am quite appalled at the response you received when you asked for your records. You do not need to justify the request. This is your legal and moral right. Denying you access to your records is illegal and unethical.

Suggest you not worry about being labeled a "problem patient." You are simply making a very reasonable request that many of us ask. It is standard of care to provide the patient a copy of all reports and labs. I never need to ask. I can access all of my labs and reports via the patient portals my providers maintain. As others on the forum have indicated, there is a NHS patient portal. Perhaps you can access the records you want to see without even asking.

If you suspect that they did not check for CALR and MPL then you definitely need to follow up on that. That is standard of care when you are JAK2 negative.

Assertive patients receive higher quality care. Passive patients do not. We have to be our own best advocates. This is both our right and our responsibility. You are absolutely 100% correct to request to review all of your labs and reports. Any provider that denies access is 100% wrong to do so. This sort of wrongful behavior can only continue if it is tolerated. Hopefully you can just find out how to access your records in the patient portal. If not, you are certainly entitled to do whatever is necessary to access your records.

All the best my friend.

[Notdiagnosed]

I downloaded a patient knows best thing that you can access via the nhs app. It says all your test results are on it. And appointments etc. BUT there was nothing on. Just things for you to add your own test results. A little diary lol.So I rang pals about it because our nhs pays for this but pals told me it wasn't able to upload things to it and virtually said it was useless. In fact it's just another data collector piece of heap.

Hunter my only way is the sar request and I have to know the exact tests they did and times of them etc. Pals sent me a form. I have to know everything but I don't because they won't tell me so catch 22 again. I have tried to be assertive but itz not worked for me. Its only made them more difficult with me.

Plus I have to have two photo ids. And I haven't got any now. My passport ran out last year and I don't drive. So that's me stuffed

And I'm still very testing positive with covid after 10 days. I have had it rough tbh.

[mhos61]

I feel for you.

It does sound slightly suspicious that they would test for all three mutations together. The usual course of action would be to test for Jak2 first, and if negative then test for CalR and MPL.

You could always ask “Pals” to escalate your complaint.

[Notdiagnosed]

I understand better now mhos61. Maybe they did it that way. I think maybe 5 or even 6 vials were done at once. I know they took them all at once. Maybe they did jak2 first and others after. But my argument is that I just want copies of all the bloods but they will not allow it. Just to see the numbers. And to see what are out. I understand they are busy but to shoot me down in flames for asking is not right. The pharmacist yesterday just said a very blunt no you can't.

I haven't got a complaint with pals. I just asked pals to ask haematology to send them but they sent me subject access thing instead.

I think its best leave it for now. I was only trying to do what others have done on here but our hospital seems a bit behind.

[mhos61 in reply to Notdiagnosed]

Absolutely you want copies!

I think my local hospital is similar to yours. I have to ask my CNS to send out the ‘full results’, as the GPs have a habit of just putting hgb/wbc/rbc and platelet results on my patient portal, it’s annoying.🤔

[Notdiagnosed in reply to mhos61]

Hi. It's not my gps fault. They don't get copies of my blood tests from hospital. In fact half the stuff I've ever been hospital with isn't relayed back to my gp. It's purely the hospital being awkward about my having copies. I haven't got a consultant as such. I just saw a locum. And she seems to deal with covid vaccine issues from googling her. There isn't much about her and she's not a named haematologist at our hospital.

And I haven't got a nurse specialist either. I don't know who I'm under. If anyone. I spoke to a pharmacist the other day. And it wasn't about medication either. It was my results. And I don't think that's right tbh. If it was about medication then I can understand but it was about my blood tests. She wasn't an mpn specialist either . Just a regular pharmacist. I understand they are good in their expertise but as I said..this was about relaying my results. I would have thought an haematologist would be better placed.

I am going back to see a haematologist in a few months time when I'm allowed to ask for copies of my bloods!!

[rebeccaxxx in reply to Notdiagnosed]

Maybe you could ask your gp to refer you to a less crap hospital. Where can you travel too? There is a list of good specialists on here somewhere.

[Hidden in reply to Notdiagnosed]

Your treatment is appalling, I'm so sorry, as if you're not going through enough without not being able to access your own blood tests. Your bloods your life, it's absolutely terrible.Make sure you see and deal with a heamatologist only or change hospital.

Take care 🤗

Just to say years ago I called my thyroid consultants secretary and asked for 7 years of blood tests to be printed out. And she did it and sent them right away.

It the law you have access to them

[EPguy in reply to Notdiagnosed]

mhos61 says it well, standard MPN allele tests (Jak2, CALR, MPL etc) start with Jak2V617F. If none they next look for Jak2 Exon 12 and then CALR and MPL. If they suspect MPN the procedure calls for this series of tests. There are more mutations they should look for too (nex gen sequencing) esp if you're really triple negative. This info is good for future reference.

You mentioned permission to "view" your results. I would come in with a camera and take pics of the screens if this is their way of operation.

[MAP44]

Hi,

There are signs when I give blood that ask you to not take biotin or a multivitamin containing it for a few days before your blood tests. It can do funny things to your levels. We already have funny blood, just something to keep in mind.

[Notdiagnosed in reply to MAP44]

Hi. I've checked my multivitamin and biotin is in it so I will stop taking now. Also didn't realise how much b12 is in them. So maybe my folate is masking a b12 deficiency. That is what I read when looking at folate being as high as mine. Don't think they actually do anything anyway. Might ask haematology when I go to redo my folate and b12 now.

Thanks so much for that MAP44