I have just been looking over my posts from 2008 2009 on another site when I was last at haematology with persistent high white count. Raised platelets and clotting out.
I have read through my 7 page thread and in 2004 I had been referred with the same thing.
After being discharged back then I had told my gp I was fed up that I had spent a year going backwards and forwards for a diagnosis snd not got one and she had said to me. You have one. It's thrombocytosis of no known cause because they have ruled out everything else. I had scans chest xrays etc.
This was going back before the criteria changed for et. And he had told me he had done the jak2 (because I was going to pay for it) but on my recent visits they cannot see that he had. Was that just a name they gave to et all them years ago.
My platelets have been raised a long time. But my haematologist back then said he treated leukaemia and I hadn't got that. In fact he was mad I had been sent to him. Said he hadn't hot a clue.
My thread is here from my site before. I hadn't realised but when looking on the Internet it came up .
And I haven't died yet lol. Even it I do have et. So 2004 was my first visits. I think I need to find something out now. Or maybe it is just normal for some people. Although back in 2004 you had to have a sustained 600 plus platelet count.
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Notdiagnosed
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As you have already heard, it is definitely time to see a MPN Specialist. Most docs just do not have the KSAs you need to get a clear answer. Did the results of your CALR/MPL test come back? If one is positive you will have a clear answer. If not, you are back to whether this is a triple-negative ET or something else. It is unlikely you will get an answer to that without consulting a MPN Specialist.
You have waited long enough I think to get an answer. time to make it happen!
Thsnkyou so much hunter for your reply. I have had this problem since 2004 it seems. I honestly had forgotten how long tbh. I have today rang about whether my tests are back (I rang last week and was give a number of a lymphoma nurse practitioner to ring which I did). I was told then about jsk2 and makes it most likely no mpn.
I asked today someone else and she said that she couldn't see any mutations had come back. She said there were lots of tests. I then asked what tests. She mentioned ferrarin. I said and is that ok. She said "yes 55". I then said and are any of the others out and she said a few were red and mentioned proteins blood tests but wasn't confident enough to tell over the phone. She was just the general haematology reception number.
I then rang the number I had been given to ring and again left a message but no one has called me back yet.
I honestly do need to speak about these soon. It's making me crazy tbh. And especially after finding my 2008 thread whereby I thought my whites were the problem and didn't realise high platelets were. I didn't remember until reading it my haemacrit was also high. It's been 45.2 just recently so normal and then 42.
I do feel so tired. And more like 90 than my age. I need some answers. Perhaps the not knowing is making me more tired. We just aren't allowed copies of our tests like in America. I remember asking my gp once and she said "they won't do you any good". Well I disagree. I have lost confidence now.
I should have at least been followed up annually maybe.
If I don't get sny answers I will definitely ask that my bloods are shown to an mpn specialist hunter and ask for a referral. (Although I think if it's now classified as cancer even with a little "c" they should educate themselves at all hospitals in the UK maybe.) Surely they changed the criteria for some health reasons and bought the diagnostic criteria down to 450 plus.
There is absolutely no question that you need to be seen by a MPN Specialist. This is not just about having confidence in your care team. it is about them having the competence to assess and treat for a MPN. It is a fundamental issue of ethics for medical providers to know the limits of their own competence and refer the patient when the needs exceed their own scope of practice.
It sounds like the Ferritin (measure of iron in storage) is within normal limits. The issue with proteins is difficult to assess as they were not specific. There are measures of proteins on the CMP which measure liver and kidney function. Impossible to know what was being referred to. Could be nothing more than a tempest in a teapot or part of the equation of what is going on.
Your mutation results should certainly be back by now. It may be that the person you spoke to simply did not know what to look for.
It is not correct that you are not allowed copies of your medical records, including lab test results in the UK. This right is codified and a matter of law. Here are a couple of links to the law.
Others on the forum have discussed having difficulty accessing their own medical records. Know that this is your legal and moral right. You own your medical record, not the hospital/provider. Some hospital systems make this accessing the record more difficult than others, which is unfortunate. There are some hospital systems in the NHS-UK that do have a patient portal where you can access your own record. 100% of my providers have a patient portal where I can access my own record. All providers will give me a copy of anything I ask for if it is not in the portal. It would be a patient rights violation if any provider failed to do so.
Note - I would fire any provider who told me "they won't do you any good" if I requested a copy of my labs or any other part of my record. I would never tolerate such an arrogant and condescending attitude. That sort of disrespect should never be tolerated. In fact, it should result in formal disciplinary action.
Note 2 - Do not let this drive you crazy. Suggest doing something about it. Feeling disempowered and unheard is unacceptable. Feeling empowered and figuring out what to do will make this far easier to deal with. Suggested action steps.
1. For now, assume you have some form of a MPN - possibly a triple negative variant. Go with the theory until proven otherwise
2. Do not bend yourself into a pretzel over having a MPN (or not). You have had this since 2004. Whatever it is, it is relatively indolent. It is something you can manage. Knowing what it is will make it even easier to manage.
3. Consult with a MPN Specialist. Do not wait. Make it happen ASAP. Do not take "No" for an answer. The is no "No". Do not just try to make this happen. Yoda says "Do or do not. There is no try." Just do it. mpnforum.com/list-hem./
4. Tell your current care team that you will expect a hard copy of all of your labs. Set a deadline. If you expect them to mail it to you, I believe the law requires a response within 21 days. It may be easiest to let them know that you will expect hard copies to be provided at your upcoming appointment. They will have your results in front of them. All they have to do is hit the print button.
Assertive patients receive higher quality care. Passive patients do not. You need and deserve appropriate diagnosis and care. You will have to be your own best advocate to make this happen.
My worries are with our health system is that we do pay for it via national insurance and also some take out critical illness covers.
Now I have noted that et has been put down as claimable on critical illness covers but getting a diagnosis is so difficult because as you say , most general haematologists lack knowledge.
I once had insurances but cancelled them because I had so many things on my doctors notes they could have said that I had symptoms way before and refuse to pay out.
Our health system will allow you to view your notes etc but on my last visit to haematology she said all my letters regarding this and notes have disappeared. I have signed up to the nhs hospital portal before a few weeks ago and it didn't even have my referral there and certainly no records on there only my ones I csn view via patient access of Mt gp. There was nothing as regards to any hospital tests.
I am having bloods done again on 20th June and then my telephone consultation is on the 29th. I can wait that long but want some answers.
And nothing bad had happened during my journey. Except I think my hand could have been a clot and I have had so many infections thar most don't get along the way.
I just feel so drained but have no explanation to it except anxiety and depression and that is why I stopped seeing my gp. Everything is dismissed as my own anxiety. Its not just anxiety. Something is not right. I think I got covid in March 2020 and honestly never felt right since. And repeated shingles too. I had ramsay hunt once which paralysed my face when having surgery for the opposite side of my head due to another problem.
I do try not to bother our system snd deal with things myself mostly. Perhaps that's been my problem but during lockdown I couldnt get to see a gp.
Just need to wait I guess. I don't know what it's like (forgotten tbh) to feel well now. But hopefully will get answers. Shingles itself is nasty but repeatedly could be because I'm fighting something else too. I had to have hiv test then and it was negative but they had to rule it out.
Thanks once again for taking the time yo listen. Your a star.
No problem my friend. We are here to listen to each other.
Based on everything you have said, it is clear that what you are experiencing is not just anxiety and depression. It sounds like you may be caught in the cycle of physical illness/inflammation causing anxiety - anxiety causing physical illness/inflammation loop. This is a vicious cycle that I learned about from personal experience. The reasons for this cycle are both biochemical and neurological. The key is to break out of the loop by addressing both the underlying cause and finding effective ways to manage the anxiety. Note that this cycle applies equally to depression.
Do keep advocating for yourself. Do whatever it takes to access the care you need and deserve. All the best as you move forward.
I had similar to you from my uk surgery always told bloods were fine. Struggled to get blood tests for a long standing injury during lock down . Eventually after a fight got tests but came back normal. I then discovered a hospital app & got onto my blood records which showed platelets in red as high since 2016 . After a battle bloods tested properly by Haemotology showed I have ET Jak 2. But would never have got this result if I had died before 😨. Rubbish system I fee in UK .
Hi Exeter. What a struggle for you too. Its bad isn't it and we're you shoen your apparent normal bloods. And what app showed you all the bloods. I have the nhs app and I have my gp access app. My gp one shows bloods done only by my gp but my hospital app doesn't shoe anything at all. Not even appointments or referral s.
I am Exeter Hospital haematology. They use My Care app for all tests & messaging. I found lots of old records of bloods on it. But you can ask for print out from Doctors of past tests too. If they have time to give you them . Good Luck . Julia .
I have today reregustered with nhs app and also this thing called patient knows best whereby you are supposed to be able to view hospital records. But upon registering when I click on things everything is blank and it's myself that has to add test results etc I can view blood tests myvown gp has done but nothing whatsoever from the hospital and my husband tried also and nothing.
Suggest taking a strategy from Winston Churchill. "Never Surrender." Never give up. Your records exist. There is some way to access them. If you cannot do it directly, per law you can request hard copy and get them within a set timeframe. Sometimes you just have to be very persistent.
Thanks hunter yet again. You are so very helpful and yet you have been through so much.
Hopefully things will appear in time in this patient knows best but I have just been on Google regarding them (trust pilot) and it seems I am not alone which makes me feel better.
They have replied to lots on there recently saying that hospitals are too busy etc to put the records on. It's madness all this. If we had access we wouldn't be hassling them with phone calls. Would make both our lives so much easier. They want us involved in our own care but make it impossible to do so.
Hi Notdiagnosed, I am sorry that you are having all these problems, particularly with accessing your medical records, you could ask the PALS (Patient Advice and Liaison Service) to help you, PALS provides help in many ways. For example, it can:
help you with health-related questions
help resolve concerns or problems when you're using the NHS
tell you how to get more involved in your own healthcare
PALS can give you information about:
the NHS
the NHS complaints procedure, including how to get independent help if you want to make a complaint
Hi I managed to get copies of historic consultant letters from my gp - I think it cost me £10 . They went back to 2007 when I was first diagnosed. I simply went into the surgery and requested them. Hope you manage to find yours
I don't really want to do a sar request if I can help it. I might get worse stressed out seeing things lol. I just wanted to see what bloods they have done after reading on here so many people were not told they even had problems from their gps etc long before they were diagnosed. In fact that's like saying we only acknowledge mpns after you have had a stroke or something. And even then we may just blame you for it by living your life as you do. I honestly get the feeling that where mpns are concerned they really don't want to be bothered with them as they are now classed as cancers whereby before they were not. I felt a bit of a fool asking about it tbh at my appointment and wonder if it was more pacification rather than she would have done my gene tests.
They seem to have the attitude that you have exactly the same life span (granted you can) so why treat something that may never bother you. We have enough to deal with without this. Just how they come across.
I have rang pals and pals say there is only one way to view your medical records from the hospital and its via requesting them from health records. You have yo give a good explanation as to why you want to view them. I said "well to see my blood results".
She said this thing called patient knows best via the nhs app shows nothing not even appointments. She said she has it herself.
She asked for my unit number and then said she could see results are back and they mean nothing to a non clinical person so as it was only the 29th June for my appointment then I should wait. She said no non clinical staff could give any results over the phone. ( meaning they wouldn't mean anything to me either I guess)
I really dont want to bother anyone as I understand they say they are busy but it isn't right that things are on a computer but we aren't allowed to view them ourselves. And we have to have a good reason to want to view them if we ever do.
She did say my gp has access via ice I think she called it. They wouldn't help though so not going to bother them as they are too busy for anything. I know if I asked my gp may have the letters from my past haematology etc but it's more the notes my haematologist put down and blood results then. He just gave a diagnosis of thrombocytosis of no known cause in 2009.
I'll just have to be patient. Its only another 2 weeks just over. I do definitely want hard copies of my gene tests. Especially after last time when I was going to pay for it but my haematologist of that time said he had already done it and negative. But my recent haematologist could see no records of that or any haematologist letters . Having a hard copy would just give me peace of mind after her saying that.
Update
I have contacted patient knows best to inform them that my records are not available for me to see as per my signing up to them. They asked which hospital trust I was under and I am awaiting their reply. Like hunter says; we should have access to our tests etc. If we want to. At least it should be available and a choice.
Well I had a call back from haematology this evening. He said as he said before...jak2 was negative but had no idea about any others they had done. (If any at all because generally they others are done when you have mpns).
He also said my platelets are 501 again from end of April's blood tests and my neutrophils are higher than they have ever been at 9..2 and lymphocytes at 4 cutoff still. My folate was 14. I told him my neutrophils have been over 12 before in 2004 visits.
He was helpful tbh. He said that as my platelets are stable now and not continuing to rise any that he doubts that I have et. He mentioned the 600 plus again although I did say the criteria had changed now. He said I knew more than him!!! I Said mpn voice is where I get my info.
I asked about aspirin and he said ,what will that do". He said ask gp about that.
He said that the haematologists at our hospital treat a few mpns and looking at mine it doesn't appear to be one of them but just didn't know why my bloods are out. He was very nice and easy to talk to.
I was told though at my last visit to haematology that my infection rate was ok. I didn't know what she was looking at to say that though.
I just think I need a good course of antibiotics and antivirals too maybe.
I honestly thought this time they would find something. I had every test under the sun for other things last times. Chest xrays. Colonoscopy etc.
I'm glad he thinks I'm OK though but disheartened that they don't know what is wrong. So mixed up.
I asked shout bone marrow and he said they really don't do them routine and mine aren't that high.
I think I'll just have to get over it again and go snd live and go see my gp for a couple of things anyway. At least I am on my way to all clear here.
All I know is duringv lockdown first week I got ill. Very ill. And after was the hand swelling. Shingles. One thing after another thing and I'm left like this. I don't feel good. I had my jabs and after the first one my face went droopy again (I had ramsay hunt before) and after my second one I developed little small bruises. And then lumps inside and severe dizziness justclikeci felt when i think i had covid. . He asked today whether i had the vaccine close to bloods andi i did November last year and my bloods were done December last year. I feel wiped out if I'm honest. I thought if anyrhing vaccines were causing low platelets?
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essential thrombocytosis 
Essential thrombocytosis 
