Fed up

I am fed up with feeling so rubbish and having to wait for my appointment with the haematologist, especially as I know he was the one advising my GP that my symptoms are not down to my PA. I just feel so light headed and exhausted. I am worried that it will affect my degree. I just want a GP that will listen and give me what I need. I have had gastro pain for 2 days and I am not sure if it is linked. People think I am over reacting - comments at uni from other students - there is always something wrong with you :-( I also have battles to fight for my autistic son - possible PA and also a recent assault on him while at St John cadets and no punishment then the person in charge lying to the police when we submit a report so the police close the case. I am so exhausted and can't keep fighting, studying and carrying out domestic duties etc - the domestic duties have been the first to slip (not good as I am extremely house proud)

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  • So sorry to hear that things are hard for you.

    it's a shame that the other students can't be more understanding. What's the pastoral care like at your Uni? My understanding is that most Unis can make some allowances for students with disabilities/long term conditions eg provide grants for equipment, maybe someone to help with note taking, extended deadlines for essays/projects etc. There should be a student support team at your Uni. Details should be on Uni website.

    Maybe the SU (Student union) at your Uni could put up posters about PA/B12 deficiency as I would imagine there may be quite a few students there with undiagnosed PA/B12 Defic.

    PA/B12 Def. posters

    b12deficiency.info/posters/

    pernicious-anaemia-society....

    Disabled Students Support

    disabilityrightsuk.org/how-...

    0800 328 5050

    Line open 11am till 1pm Tues and Thurs

    gov.uk/disabled-students-al...

    nus.org.uk/en/advice/health...

    The PAS are sympathetic to talk to. If you leave a message they will get back to you within a couple of days.

    pernicious-anaemia-society....

    01656 769467

    office open 6am till 2pm every day except Sundays

    The person who runs this website is sympathetic too. Contact Details on website.

    b12deficiency.info/

    b12d.org

    I know that some people have had contact with this charity and found it supportive.

    I hope your son gets the support he needs.

    Can the NAS help?

    autism.org.uk/get-involved/...

    "having to wait for my appointment with the haematologist, especially as I know he was the one advising my GP that my symptoms are not down to my PA. "

    A person I spoke to who knew a lot about B12 said that alot of haematologists don't understand b12 deficiency. I wasted a lot of money seeing a haemo privately who seemed disinterested in my symptoms.

    If I ever see one again I'll go arned with various documents such as the "BSCH Cobalamin and folate guidelines"

  • I have the documents all ready and highlighted for the haematologist. I was referred on Nov 12th but still no appointment.

    My academic tutor is great - she has contacted occy health again to discuss reasonable adjustments in uni and practice. She knows I am struggling with lectures because of the chronic fatigue and she feels I should get breaks during my 2 hour exam in the summer. She has talked to the lady that issues placements and she has said I must stay local so I am not driving too far (especially after a 12.5 hr shift). She also said she will visit me during my 11 week placement to give me support (she normally only comes out at the end for the review chat between her, my mentor and myself).

    I am in touch with PAS and Martyn.

    Not sure anyone can help with the assault at cadets, we are considering allowing him to leave - he is not happy but is staying as he wants to be a paramedic.

  • As for the students at uni - yes there is always something wrong and it is because the GP is not providing the right treatment, but I am still turning up to uni and working hard - I don't use it as a reason to get out of work

  • I so sympathise with everything you have said! I'm sorry you are going through this and hope you can get enough treatment soon. Have you considered self treatment?

  • yes if the haematologist does ot come round to my way of thinking then yes I am going to self treat. I just didn't want to skew any blood tests he does so holding off but an appointment would be nice so I know when I am seeing him. I was referred on 12 Nov.

  • I've been through most of your other threads, looking for the answer to this question - but came up blank.

    Have you, and/or your son, been tested for anti-intrinsic factor (IF) antibodies? A positive for the antibodies is a very, very good indicator that you do have PA.

    A negative result doesn't mean that you don't have PA as the test is negative about half the time when antibodies are present. Yes, it's crap but it's the best they've got.

    If you do have PA then your immune system is attacking the gastric parietal cells in your stomach. These cells make IF, a protein required to transport B12 out of the gut and into the blood. If that doesn't happen then you will not be able to absorb B12 from your gat (well, you'll not be able to absorb 99%, or more).

  • I have been tested and it was negative. The GP is treating for PA but the usual complaint from sufferers of not often enough. I seem to have to fight for everything and am getting fed up of doing so. Medical professionals seem to be completely unwilling to believe me but I have not been wrong yet - diagnosed lactose intolerance in my son, ulcerative colitis in my other son, PA in me, autism in my son, and now I suspect PA in my son. I should not be telling the Drs what is wrong they should be testing and telling me.

  • You could ask to be tested again. Point out that the test is only about 50% correct for those with PA . The Nice guidelines - cks.nice.org.uk/anaemia-b12... - say this...

    "Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014]."

    And the BCSH guidelines - bcshguidelines.com/document... - say

    "The finding of a low total serum cobalamin level may be further evaluated by testing for anti-intrinsic factor antibody (IFAB). If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh, et al 1997), with a concurrent low false positive rate (1 -

    2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40 - 60% of cases (Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic

    factor antibody assay does not therefore rule out pernicious anaemia hereafter referred to as AbNegPA). "

    I'm pretty sure that Martyn Hooper had to be tested three or four times before being found positive.

  • oh I thought if you tested neg you would always be neg. The GP is not denying my diagnosis of PA but I will ask to be tested again.

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