On-going treatment

Hello everyone,

As you may know I was diagnosed with PA two months ago, I had extremely low b12 at 50pgm. I was suffering from both the neurological side and the usual symptoms. I finally got a diagnoses after many repeat visits to my GP, I was given the standard loading dose, I felt no improvement especially with the nuero symptoms. My Folate was very low at 3.5 and then 2 after the loading injections. They agreed to continue another loading dose as my red blood cells were still very large. however would not prescribe me folic acid. I have since finished the second lot of loading dose and I am still feeling pretty bad.

Another GP has now given me the folic acid. They wont give me any more injections and want me to come back for a blood test on the 1st September to decide my treatment. My levels were at 2000 before the second loading dose. I am worried as I go away on holiday for two weeks on the 19th September and just cant deal with being ill when away.

Will the folic acid make a massive difference to how I feel?? As I know this does work the b12. I just can't figure out why I haven't been referred and why they are still writing this off.

Nikita

10 Replies

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  • yet another surgery staffed by people who can't read!

    go to google, tap in 'bcsh guidelines cobalamin' or something similar. They were updated last year. Print them off, take them to the surgery along with a letter stating what treatment you have had and how it differs from the guidelines and that if the gp doesn't treat according to them, you'll make a formal complaint.

    with symptoms you should be getting jags every other day until no further improvement. your gp shouldnt even KNOW what your present levels are, because the guidelines also state that once diagnosis is made, and treatment started NO FURTHER SERUM TESTS SHOULD BE TAKEN. If they ever insist on yet more tests, refuse them and refer them to the relevant section in the guidelines. As for folic acid you can buy 400ug tabs in aldis, asda, tesco, lidle very cheaply. With a reading as low as yours for folate, you could do with 12, yes 12, tabs per day. Neither folate nor b12 can work at their best without the other.

    If all else fails, bash them over the head with the guidelines, not sure if itll get you more injections, but itll certainly get you their undivided attention!!

    you can source your own hydroxo or methyl if you feel thats the only way to get your necessary treatment, and we can help you through that too, if and when

  • Thank you very much for your helpful reply!

    I have referred to the guidelines previously and even gone as far as to put in a FOI request to check the guidelines for my area, which as you know are the same as the standard guidelines!

    I have an appointment this Thursday so I will print these and take them in, just had enough!

    They find it amazing that I have had now two lots of loading doses and don't feel a massive improvement despite the countless times I have told them about the folate.

    I also knew that my levels of B12 now don't matter and they aren't a true representation of my deficiency! I just don't seem to be able to get this across.

    I have now seen all the GPs in the practice and been given various different versions of stories on how to treat my PA. None helpful. They think as my levels are so high I should be fine.

    I have also got in touch with b12.org charity and they have sent me some methyl to self inject. So all goes wrong with the GP I can use that, I just want to get the GP to take me seriously first!!!

  • shevie. well that prescription for the medics had me in stitches? btw, how do u feel that Wilkos etc folic acid compares with the more expensive ones?

  • you should get a 2nd opinion. i had to wait 2 years 2 c a neurologist and get a diagnosis. I got the loading dose then injections every 12 weeks until September last year. Then they decided I only need an annual injection. I feel awful and I'm fighting (with no strength) to get another injection before I go on holiday on 24th August. I also have asthma and am 16 stone in weight.

  • Sorry to hear your having such a hard time too!

    I'm the same with the holiday, we had even looked into cancelling it as I just don't feel well enough but we'd loose too much money.

    An annual injection is ridiculous!!!

    I plan to ask for a referral on Thursday - which I have asked for several times now.

    Had anyone else has a lot of trouble with getting referred????

  • Have you contacted the PAS - they may be able to speak to someone at the surgery and explain to them in words of less than one syllable :) what B12 deficiency actually is.

    It is incredible that GPs are so unaware that

    a) the usual cause isn't lack of B12 in the diet but an absorption problem and that problem isn't going to go away just because they have shoved enough B12 into your system to keep an elephant going for a month. You aren't an elephant.

    b) the B12 test tells them nothing about how B12 is being used at the cellular level, which is what really counts ... and even less so after a loading dose.

    Okay the reservoir may be full but if the stopcock on the pipe that carries it to the town is closed none of it is actually going to get through.

    c) folate is needed as well as B12 - if both are deficient or folate is low your body just isn't going to be able to use the B12 so why are they bothering to fill you up without making sure that one of the prerequisites for being able to process B12 isn't also in place.

    Unfortunately though there are no timescales on how long it takes you to recover - for some it is months before they really start to notice the difference - from a deficiency and it is also possible that some symptoms may never actually subside entirely, but I do hope that you are in a position to enjoy at least some of your holiday.

  • should probably add

    d) yes, B12 is stored and recycled through the liver but the mechanism for recycling it is the same as the main mechanism for absorbing B12 so pumping your body full of B12 doesn't mean your levels are topped up for ever. Filling up a tank that has a hole in it does not mean you will have fuel when you next need it.

  • Even if your B12 levels are through the roof, if you have inadequate folate, you will be unable to use it. You need to get some folate to feel the benefit of the injections, probably ideally during loading doses. Good luck- take someone with you on Thursday.

  • "Had anyone else has a lot of trouble with getting referred????"

    I have never been referred to a haematologist.

    "I was given the standard loading dose,"

    I don't understand why they are not following the BNF (British national formulary ) guidance for those with B12 deficiency with neuro symptoms. If you have B12 defic with neuro symptoms you should be getting continuing loading doses every two days over a period of weeks or even months then injections every two months.

    When you next have an appt perhaps the GP could show you the guidance in his/her copy of the BNF..Chapter 9 Section 1.2.

    It is possible to get your own copy of the BNF.

  • Thank you everyone for your reply,

    I've taken my partner a few times to these appointments only for him to be accused of 'hovering' - it's ridiculous!

    I have now been prescribed folate so hopefully this will help things! but what annoys me is that they have now given two lots of loading doses which could of been a lot more effective if they had actually given me folate at the start!

    This whole thing has been a nightmare, I have even made reference to the BNF guidelines for them to only turn around and disagree.

    I have spoken to the PA society too who were helpful.

    I almost feel like leaving the practice but don't feel like any other GP would be helpful either!

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