getting tested for PA with NHS

Hi,

I have posted one post before but had not got any recent replies so thought I would post again as I am getting very stressed and confused. I have been diagnosed with a severe iron deficiency and vitamin D deficiency and macrocytic anemia. I am now on iron tablets. A few years ago after a blood test I was told on the phone that I was B12 deficient and had PA but just to go and buy tablets. I really didn't think much about it and didn't follow up with the GP. Now I am worried I have PA and want to get it investigated properly. I have ticked a lot of the symptoms on the symptoms list on the PA society. I know from previous replies that I can ask for MMA, homocysteine and IFA to be checked.

I'm just wondering how I convince the GP to do the above tests or what can I do if they don't agree. The mental health symptoms are probably the hardest to deal with and I can barely remember anything. I am on anti-depressants too. I just am quite scared that there is something wrong that won't be picked up on.

My GP appointment is next week and I want to be well prepared. Please can someone offer some advice. Thanks in advance for any replies.

14 Replies

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  • It sounds like the first thing to do is to request copies of your health records. If they told you that you have PA previously, there should be something in your prior records to explain that conclusion. It's possible that you don't need additional testing if they did the tests previously and the results are part of your records.

    The fact that they told you that you have PA but then told you to buy tablets to treat it is incompetent health care. If a diagnosis of PA has already been established, then your doctor cannot deny you treatment. Correct treatment is injections of B12.

  • Hi Galixie,

    Thanks for your reply which does make sense. The problem I have is I think that blood test record will be on my hospital records and due to my memory problems I can't remember exactly when they told me that on the phone. I really want to get copies of my hospital medical records as maybe these will help. I have also moved to a different part of the UK so am at a new doctors surgery and not even sure if they can access a previous GP's records especially when I don't remember a date for them to look up. I now also suspect I have vitiligo which has only just started appearing. Maybe I should just wait and see what the GP says at the appointment as he is a doctor at the practice I haven't seen before. The stress of it all is getting to me though.

    Thanks for your support.

  • The trouble with asking one doctors office to get records from another doctors office is 1. you have no way of knowing if they ever bothered to do it and 2. you still would not know for yourself what exactly the records say. Request copies of your records from any doctors you previously saw in the time frame when the diagnosis may have been made and ask them to be mailed to your address. They may charge you a fee for copying the records, but you do have a right to have them mailed to you.

    You are not likely to get your records before your appointment next week, but it would still serve you well to get them. If your records show a diagnosis of PA, you should make a copy of it and personally hand it to your new doctor (that way you know they've gotten it and they can't ignore what it says).

    If you are currently taking any B12 supplements the test results on MMA and homocysteine levels may be mildly skewed.

  • My G.P fobbed me off and said I didn't need testing as my serum B12 was 'normal' and my symptoms were all in my head. I sat in her office and refused to move until she did an Intrinsic Factor test. Probably not the best course of action for some, but it worked for me. Surprise surprise, my IF was positive.

  • Hi can you explain to me the if test please

  • Thanks for the replies it's great to have some support. It's so awful there has to be a battle to get needed treatment. I have since got a form to send to get the hospital records which I will send off tomorrow. I'm not sure if the GP would have even got the results as it was never discussed with me so getting the hospital records might be best. I will do a you suggest Galixie if I find what I am looking for. The supplements I took were about 2 months ago so hopefully they won't affect any tests. Are the MMA, IFA and homocysteine done by blood test. I just hope this GP agrees to do the tests.

    Not sure if I am assertive enough to do what you did topazrat but great it worked for you.

  • If you are in UK, then your current/new GP surgery should have requested your old notes from your previous surgery. So, you should be able to ask your (new) surgery for copies of notes that were made at your old surgery.

    If you were diagnosed at hospital, then a letter should have been sent to your GP at the time, which should, again, be in your notes, along with notes from old surgery. Depending on how long since you moved surgery, the current surgery may, or may not, have received them yet.

    As mentioned, you are entitled to a copy of your notes but there will be a charge (around £50 as far as I'm aware)

    Definitely worth chasing up and getting the copy of the letter from the hospital with the PA diagnosis, if that's where it came from

    Good luck, keep fighting ;)

  • Hi Carmel13n. Blood tests may still be skewed if you have only been off B12 supplements for two months...but not easy to say for sure. For some people, it can take considerably longer...

    Agree with JMN2017 about your medical notes - these will be requested by your new GP and will (at some stage) arrive at your new surgery. (Galixie lives in the USA, I believe, and it works a bit differently over there).

    You have a new GP so why not try a 'simple' approach first: print the symptom list on B12deficiency.info or the one in the PAS pinned posts (to the right of the page when you log) and highlight all your symptoms...take it along to your new GP. Note - the two symptom list are a bit different - the b12deficiency.info list is more comprehensive - choose the one that best 'fits' with your particular symptoms.

    Tell her/him that you have been diagnosed with PA, that you were told to buy B12 tablets, and that you are concerned because these are not working and that your symptoms are getting worse. The GP can then check your medical records - again, as JMN2017 says, the hospital letter should be in your GP's records. Your new GP can 'chase' your records if they have not arrived at your new surgery yet (ask them to do this).

    Your new GP should know that you were given the wrong treatment, since B12 injections are the only recommended treatment for PA...that is, for the B12 deficency caused by PA.

    Keeping it simple (to start with) by simply stating a fact...I have been diagnosed with PA... puts you in a position whereby you already have a diagnosis, rather than seeming to go 'backwards' by asking for tests to prove you have someone that you've already been diagnosed with (if you see what I mean).

    Hopefully, your GP will then simply search through your medical records, say ah ha...and start you on the treatment you should have been getting anyway...B12 injections.

    ideally, it should be no more difficult than this 😄.

    Keep in mind that if you have neurological symptoms you will need more frequent B12 injections (after the 6 initial loading doses, every other day until no further improvement - more information in the PAS pinned posts, but post again if furth advice needed).

    Good idea to get folate, ferritin and vitamin D tested...sounds like they haven't been done for a while. GP may want to test B12 (because new) if so, explain that you have been taking tablets so that this can be accounted for when reviewing the results (if your levels are within what they call 'normal' range, this should not be used to withhold B12 injections). Once supplements have been started or taken, B12 levels will be skewed - and can never be used as a marker of the effectiveness of treatment anyway.

    There's lots on information about B12 deficiency in the PAS pinned posts to the right of this page when you log on (at the bottom if on a phone). Probably a good idea to have a read through before you see your new GP...some know little about B12 deficiency...by being knowledgable yourself it will give you more confidence and help,you to deal with your GP.

    If you do have any blood tests, ask for copies and post the results (together with reference ranges) so that we can help with interpretation (doctors often say things are normal when they're not).

    Finally, good luck with your new GP...keep it simple (I have PA) and hopefully all will go well. But do come back and post again if you need more help...lots of folks here who will try to help. 👍

  • "I'm just wondering how I convince the GP to do the above tests"

    I agree with Foggyme that a simple approach explaining you already have a diagnosis of PA is a good idea but if that does not help then....

    Perhaps giving GP a copy of following flowchart would help if you're in UK.

    stichtingb12tekort.nl/weten...

    Flowchart makes it clear that in UK, patients who are symptomatic for B12 deficiency should be given an IFA test and start initial b12 treatment. This applies whether b12 is low or within range.

    I'd recommend reading whole BSH Cobalamin and Folate Guidelines (below)

    b-s-h.org.uk/guidelines/gui...

    Other B12 info

    1) Pinned posts on this forum

    2) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    3) PAS website

    pernicious-anaemia-society.org

    PAS tel no +44 (0)1656 769 717

    Might be worth you contacting the PA. They are helpful and sympathetic and in some cases can intervene on behalf of members.

    May be stories relevant to you on Martyn Hooper's blog. He wrote recently about B12 deficiency and mental health.

    martynhooper.com/

    4) B12 Deficiency Info website

    b12deficiency.info/

    5) b12d.org website

    b12d.org

    6) BNF (British National Formulary) Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    All UK GPS have access to BNF, very likely that they will have a copy on their desk or bookshelf. LInk above makes it clear that treatment for PA is lifelong and by injection not tablets.

    7) book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. I gave a copy of this to my GPs.

    8) book "Could it Be B12" by Sally Pacholok and JJ, Stuart

    "problem I have is I think that blood test record will be on my hospital records "

    UK access to medical records

    nhs.uk/NHSEngland/thenhs/re...

    england.nhs.uk/contact-us/p...

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    citizensadvice.org.uk/healt...

    HDA patient care trust

    UK charity that offers free second opinions on medicla diagnoses and treatment.

    hdapatientcaretrust.com/

    I am not a medic just a person who has struggled to get a diagnosis.

  • Hi, I work for the NHS, and it's my understanding that the charge for copies of notes should only be a reasonable charge for photocopying, and the £50 fee is a maximum. Some places will just waive the fee and some won't, and it can depend on your income level. Please ask, and do let them know if you're on any benefits or have a low income as that might help!

  • Thanks so much everyone for all the great replies. The simple approach sounds like a great idea I will try that and hope it works. I will also get reading all the links and print out some things just in case. I will also ask if they have the previous notes yet that's very helpful. I think I will also send off for the hospital records too as it seems strange to me how my old GP would not have discussed the fact I have PA. Maybe a letter never got to the GP from the hospital.

    I will be having another blood test the beginning of April as they want to check what is happening with the iron levels. Would it be worth asking for another B12 serum test to be done. I did only take about 5 supplements and they had other vitamins mixed in. I also have low Vitamin D it was under the lowest range on the test and low ferritin.

    I am feeling a lot better having some support. Thank you all.

  • May be problematic asking for another B12 test since many GP's will stop or refuse treatment if the result even nudges into the bottom of the reference range - which may be the case if you have taken supplements.

    As you have already been diagnosed with PA, treatment should never be stopped or the requirement for treatment based on serum B12 levels.

    Whilst it's something your GP may want to do (perhaps mistakenly, or because you're a new patient), think it's probably best not to ask for a serum B12 test right now...wait and see how things go at the first appointment.

    If your GP is knowledgable about all things PA and B12 deficieny, you should be prescribed B12 injections...so here's hoping that you get one of the few good ones.

    Good luck 👍

  • carmel13n

    If you're anything like me, you'll have all this ready to say but, once in the consulting room, your memory will go totally to pott!!!

    So, why not write a letter, keeping it simple, clear and on one page A4 only, preferably in bullet points, and then drop it in at the surgery for your doctor to read before you get there or take it with you.

    By doing that, you are 1) showing your GP that you are serious about this issue and 2) you don't have to explain it all (coz GP will read it) Then, it's easier to answer the resultant questions.

    Hopefully, this strategy will help you, I certainly has done for me recently. Good luck

  • That's a brilliant idea to write things down because my memory is terrible. I have posted the form to get my hospital records so hopefully that won't take too long. Does anyone know what symptoms would be different for PA compared to the iron deficiency anemia. I have quite a few neurological symptoms and psychiatric symptoms.

    Red blood cell distribution width 21.2 % [11.0 - 16.0] Does this result mean I have macrocytosis because the GP surgery has put Microcytic anaemia on my patient record.

    Any advice if the GP is not agreeable to treat me for PA should I then ask for the other tests?

    I am still just extremely worried and stressed about it all. Thanks for all the help so far I am very grateful.

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