From bad to worse

Hi all,

As per my previous post I am battling with my mum's health and her incompetent GP surgery but this latest twist has floored me.

We have been waiting since Monday for her first injection - the GP was supposed to do one on Monday but when we got there I was told the other GP I had spoken to on the phone on Friday had not passed any information on - so no injection on Monday.  Was assured that a district nurse would be out on Tuesday, no district nurse appeared on Tuesday so today I phoned and have just spoken to a nurse who informed me that we should have received a prescription for her B12 so the nurses could administer it!!!!!!!!  this was the first I had heard of this and all the time my mum is not getting the treatment she needs and is entitled to.  Is this normal practise????  

I live over an hour away from my mum - the GP's know this - and I have to keep taking time off of work to sort these things out and when I just asked the GP's how is the B12 going to get to my mum for the nurses to administer it I have been told" this is not our problem".

Is this how these things are supposed to work or has my mum got an incredible bad GP's practise????

A very frustrated

Moggie x  

18 Replies

  • And just another thing to throw into the mix - because it's bugging me - my mums folate levels were 4 and, although stupid me didn't get the range for this, I think from memory that this is low - am I right??? - and if it is low does this mean that her injection will not work properly as this is what I am picking up from reading some of the links people have kindly given me.

    Any help would be appreciated.

    Moggie x

  • Hi Moggie,

    What an inconvenience all round. The b12 ampoules come in a box of 5x1ml Hydroxocobalamin. So expect a few boxes to be on the script to keep her going over the loading period. 

    I keep mine in the cupboard so they are away from light. Do you have a pharmacy near Mums. My pharmacy picks up my scripts and would deliver meds if necessary.

    Maybe you could look into this.


  • Nothing like that in her backward surgery as I have already asked.  Thankfully the district nurse has been able to pick it up for her, because left to the surgery she would have remained untreated, and she is having her first injection tomorrow.

    I just cannot believe that the GP did not put it on her script.  Why did he bother booking for a district nurse to go around there when he hadn't provided any medication.  I am fast loosing patience with this surgery.

    Thanks for your reply.

    Moggie x

  • Definitely different areas have differing codes of practice. I have to go to the surgery for mine after having to make a nurse appt about a month in advance. But my friends son collects his from the pharmacy to take to the nurse. Bit of nuisance that, prefer it how my surgery does it.

  • Thanks for your reply.  So to complicate matters even further different areas have different systems - typical of the NHS.  What got me was that I was sat in front of her GP on Monday and he gave me a script for more thyroid meds and vitd so why the hell didn't he give me her B12 seeing as it was him that booked the district nurse.

    That surgery just does not seem to know how to communicate with each other. I am having my mums script sent to me so was told to take some stamped addressed envelops in, which I did, but yesterday the pharmacist informed me that it was still on the computer as being filled by them!!!!!  If there is one thing that really winds me up it's incompetence and that surgery has a gold star in it.

    Thanks again for replying.

    Moggie x

  • That's  1 thing sorted at least. Re her Folate - I'm sure her GP will give a script for Folic Acid if it is below range. 

    If it is low in the range and he doesn't give a script, you can get a good folate supplement. My folate range is (4.6 - 18.7). As you know ranges can be different depending on what machine is used, but she could very well be deficient.

    You have done your best Moggie. 

    Tomorrow is a new day.  Mum will be much better in no time.



  • The calming voice or reason - how do you do

    The thing with thyroid illness is that you don't do stress very well and, even before my thyroid illness, I never

    Thanks for your support - I have looked up folic acid but I need a liquid one, as my mum cannot take tablets, and it is really expensive.  Will maybe try and find a lozenge (like my B12) for her to take.  Trouble is she doesn't think she needs any of it so another one added to the list will not please her.

    Thanks again, you have been brilliant.

    Moggie x

  • Please keep us posted M.

    J x

  • Will do.  Since her bad fall I now phone her every morning and, even though she cannot hear me as she is profoundly deaf, I have asked her to let me know this morning if the nurse actually did turn up - fingers crossedXX

    Thanks for your help.

    Moggie x

  • SUCCESS - my mum had her first injection yesterday so now she is in the system she should be o.k.

    One thing I did want to ask is this - a friend of mine went to her GP and her GP mentioned "autoimmune B12 illness" (and this is not the first time I have heard this phrase used).  Was I right in corrected my friend and telling her she has PA and why are doctors, like her's, not giving a correct diagnoses.  Is this because, like autoimmune thyroid illness, the treatment is the same whether it is autoimmune or not so they are not bothering?????? or is there such a thing as autoimmune B12 illness other than PA????  Is there an actual test for PA, has my mum got PA but the doctor is unwilling to label her as such????

    I am very grateful for all the support I have received on here from you and others as it makes dealing with the medical profession and the illness so much easier to cope with, so a big thank you you and everyone else that took the time and trouble to answer my cries for help.

    Will no doubt be back again for more help and support as my mums condition unfolds, only wish I was knowledgeable enough to help others on here but I am not - anything thyroid I can do no problems but this is still all very confusing for me. 

    Moggie x

  • Good M,

    I was looking up Folic Acid earlier. A lot of them are a combination of Folate and B12. Folic acid is synthetic like Levo. Folate or Methylfolate is bioavailable. 

    I noticed biocare have a liquid Folic Acid for approx £5.00, free P&P, which I love. Lol. Tight git.

    2 drops daily in water/juice. Job done.

    I was diagnosed last year with B12 def and Vit D def. the actual test for PA is a blood test for Intrinsic Factor (IF) but it is very unreliable.

    I couldn't care about putting a handle on it to be honest. The important thing is to get injections and proper treatment. I self inject. The treatment is the same for B12 def and Pernicious Anemia which is an autoimmune disease.

    When people are taking B12 it is highly recommended that you take a Vit B complex to balance everything. More pills that Mum won't

    You would know that from the TUK site.  Moggie, to be honest, the only reason to find out if your Mum has PA or not is if the GP stopped her injections.  You would then ask to have her IF tested.

    That probably will never happen, so take one day at a time. I got brain overload when I began to read up about B12.

    You may find that she sleeps a lot after her injections but that will pass. 

    I'm sorry she is deaf. Poor Dear.

    Take it easy with that old Thyroid M.

    J x

  • I had already  found the Biocare folate liquid, which I will get her when I get her actual folate range from the GP, but thanks for taking the time and trouble to look for me.  It took a bit of searching to find, but then I remembered I had an account with the "vitshop" and Bingo there it was - mind you postage is £3.50 so that takes it up to almost £8. Can you tell me which site had the free P&P please. I get a lot of my vitamins from Amazon but their liquid folate was about £50!!!!!!

    She seems o.k. today and has gone shopping (nothing, and I mean NOTHING, interferes with her  My mum has Pagets of the head (yet another hereditary condition) and with Pagets the body grows extra bone and being as it's her head the extra bone has squashed her eardrums and caused total deafness.  Before all this latest drama, and apart from her pagets/deafness, she was very fit, but then again that could have been all down to her attitude of "there's nothing wrong with me apart from old age", but I will get her through this lot, with help from you guys on here, and hopefully she wont have any more bad falls. Just wish there was a cure/pill for her stubbornness as I would be buying those in

    I felt like I had been hit with info overload when I did all the reading and research on thyroid illness as, like you, I have problem with my B12, vitd and also my iron, so was always reading or researching something or another but I got myself back on track - mainly through diet - and thought the detective in me could retire but now it seems it was only on an extended Will be keeping a close eye on my mum to see if the loading dose relieves her balance problems and if not will go back into battle for an extension of the loading dose and injections every 2 months not three.

    Your help has been invaluable - thank you.

    Moggie x

  • Bodykind. 


  • Thanks.

    Moggie x

  • "Folic acid is synthetic like Levo. Folate or Methylfolate is bioavailable. "

    Folic Acid actually has a higher bioavailability that methylfolate (a higher proportion of an oral dose makes it into the systemic circulation).

    The methylfolate that you buy is made from folic acid.

    The vast majority of the population has no problem converting folic acid into methylfolate.

    Even people like me with a mutation in one of the genes responsible for making methylfolate can still do the conversion - just not at the same efficiency (people with 2 copies are 30% efficient, one copy means your're 85% efficient).

  • Thank you so much for that explanation, it is all beginning to make sense now.

    Moggie x 

  • Have you asked the local pharmacy that you use if they do a pick up service from the GP, many do and they usually deliver once prescription has been dispensed. GPs don't offer this service or tell you that the pharmacies do, I use this service for my medication as I work full time and cannot get to GP to pick prescription up, I then pick up from pharmacy when required. 

  • My mum's pharmacy is in her actual GP's surgery who do not do any sort of delivery service as I have already asked.  Her surgery seems to be stuck in the 1950's as I also asked for her script to be electronically sent to my own pharmacy so that I could get her medication but, yet again, they cant do that either.  I have now taken in 25 stamped addressed envelopes, addressed to me, so that her script can be posted to me and then I can take it to my local pharmacy.  It doesn't make for an easy life, and let's hope the "posting it to me" works as the signs are not good for that either due to the reception not relaying my request to the pharmacy - although I think I have caught that error in time so fingers crossed it will now be plain sailing, although nothing has been easy with this surgery from leaving her with untreated thyroid illness due to her age - yes I have typed that right - they decided she was to old to receive treatment!!!!!! to the lack of communication between doctors, receptionists, nurses and the pharmacy.

    Thanks for your comments and suggestions.

    Moggie x

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