Just being ignored by health care professionals as per usual

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Guidance from the Expert Haematology Panel (EHP) on Covid-19 Vaccine-induced Immune Thrombocytopenia and Thrombosis (VITT) Authors: Drs Sue Pavord, Will Lester, Mike Makris, Marie Scully and Beverley Hunt Last update 31.08.2021 1 Updated Guidance on Management. Version 2.2 31 August 2021 Note this is a live document and is updated frequently as further information comes to light. Please also refer to the NICE guidelines on management of VITT (NG200) August 2021 www.nice.org.uk/.../fully-accessible-version-of-the-guideline-pdf-pdf51036811744 VITT is a rare life-threatening immunological reaction to covid-19 vaccination. In this condition in the UK, primarily the Oxford-AstraZeneca vaccine triggers the production of anti-platelet factor 4 (PF4) antibodies, which cause platelet activation with thrombocytopenia and thrombosis. Thrombosis is often widespread and involves the cerebral veins in 50% of cases (half of which have secondary intracranial haemorrhage), the splanchnic veins in a third of cases, arterial stroke, heart attack or ischaemic limbs and unusual sites such as adrenal thrombosis. Suspected cases have also been reported to us after Pfizer COVID-19 vaccination although this is much more unusual and they may have a different phenotype; we will update on this in future living guidance. There is no clear signal of risk factors other than young age. Patients with prior thrombosis or prothrombotic disorders including antiphospholipid syndrome are no more at risk than the general population. Clinicians need to be on alert for this syndrome, to understand how to make the diagnosis and to note the specifics of how to treat it. The Expert Haematology Panel (EHP) offers MDT support for management of cases. Since AZ was stopped for the under 40s, there have been very few new cases and the daily 2pm meetings have now been reduced to Mondays only. However immediate help and support is offered by the EHP authors of this guidance. Suspected cases must be reported to the EHP and Public Health England via this link https://cutt.ly/haem_AE. Additionally, all cases of thrombosis or thrombocytopenia occurring within 30 days of COVID-19 vaccine must be reported to the MHRA via the online yellow card system coronavirus-yellowcard.mhra.gov.uk/ Please also note that new or relapsed post-vaccine ITP cases can also be reported to Public Health England snapsurvey.phe.org.uk/.../s.asp Clinical and laboratory findings Cases usually present 5-30 days after vaccination and are characterised by thrombocytopenia, very raised D Dimers, low Clauss fibrinogen levels and thrombosis, which is often rapidly progressive. We now recognise that deep vein thromboses (DVT) and pulmonary emboli can present up to 42 days after vaccination; we presume the DVT develops subclinically between days 5-30. Antibodies to platelet factor 4 (PF4) have been identified and so this has similarities to heparin-induced thrombocytopenia (HIT), but in the absence of exposure to heparin treatment. PF4 antibodies are detected by ELISA HIT assay but not usually by other HIT assay methods. We now recognise that up to 5% of patients have NORMAL platelet counts at presentation. Most of these patients develop thrombocytopenia in the next few days. The case definition criteria should be applied to classify the case into Definite, Probable, Possible or Unlikely

This is what I am sure I have

They all say that it's not this because my platelet counts is normal.

This document proves they could be wrong. 

" We now recognise that up to 5% of patients have NORMAL platelet counts at presentation"

  • This is about thrombosis, that is clots mostly in the brain. Why do you think you have that?

  • Because I have all the symptoms. 

  • This is my immune system attacking me.

    There is some chatter about it on YouTube amongst Doctors.

    My legs are worse and around my torso.

    They took photos when I went to the James Paget hospital, but they were only interested in my skin cancer.

    The Doctor said wear loose fitting clothes .

    I am now getting rectal bleeding which is one thing they say to watch out for.

    There is another test they can do to confirm it or not.

    It's just getting them to do it that's the hard part.

  • I have immune thrombocytopenia that looks like that when my platelet count is under 10. ITP though, not TTP. My haematologist for it is one of the writers of that paper. There are other things that cause petechiae like that, things like vasculitis or infections. They should be looking for the cause. If it were me I'd bother the GP again.

  • So you agree with me that it looks like it and I did not have it before the vaccine.

    Also it flares up when I have a booster.

    Perhaps I am just uniqueUnamused

    Went to see the Dermatologist today about my skin cancer and showed her my arms my legs and torso.

    She said it looks like what I say it is and I need to see a Haematologist.

    Sure there are other things that can cause it like HIV and also Hepatitis.

    I don't think I have either.

  • Well I got a  letter  for blood test and another teleclinic on the 22nd of June.

    Disappointed at no face to face at no face to face, they will probably make some excuse about protecting patients.

    But apparently I can be seen privately face to face for £250 and my Haematologists secretary will be happy to arrange it.

    Got a letter from the other hospital dermatology team.

    Apparently the diagnosed me in January with capillaritis, They just seemed to have forgotten to tell me.

    Well it does look a bit like that , but it looks more like the other.

    I does seem to be improving, which is good.

  • Since I got covid this happened

  • I can’t see the pictures clearly but if it’s skin problems I have talked with others who have had skin issues going through covid.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • See the ones above Mike my arms were like that 2 days before.

    Just seems my Immune system prefers to attack covid.

    My legs and torso have cleared up as well..