I had an appointment at Moorefields on the 14th February this year and my Consultant said i had pernicious anemia and that my GP was to give me B12 injections - well she will not do it - this is the third time in eighteen months that she has refused what the consultants say and they even send her letters stating that she must do it to save my sight as it is badly affecting my Optic nerves and my eyes are streaming and so so sore. Can anyone offer any advice and is there anything i can buy and take over the counter to help my eyes like B12 tablets - but only good ones as i have looked on Amazon but there are so many and should i take cod liver oil for my eyes. I used to inject B12 but i do not understand the language so i cannot purchase them through Amazon. I would so appreciate any help you can give me - bless you all. Thankyou.
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xeena
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I would post your question on either the thyroid page or PA page and you will get lots of recommendations for b12 supplements. Is there another dr you could speak to at your surgery to obtain the injections?Hope you get sorted soon.
Hi there - thank you for your reply. None of the doctors in my surgery will give me the B12 that i desperately need for my eyes. The consultants at Moorefields hospital send letters to the doctors and tell them that they must but it is all ignored - i never see a GP anyway - i just ring the chemist for my repeat for my COPD and my diazepam. I have paper work here at home from when i first started with this surgery and it states that i have pernicious anemia and i will be on B12 for life - so i really do not understand what their problem is. Thank you for replying to me and i hope you keep well.👍
With regard to the GP'S refusing to give you your injections I'd write to the Practice Manager to find out why, after all it's hospital consultants instructions they're not following, it's not like you've asked for them it's the hospital, good luck
- but i do not hold out any hope.Thank you for your reply. I will give it a try. This is three consultants at Moorefields that have been ignored by my GP's in the last two and a half years and i am now very scared as i live alone and i have to keep my curtains closed when it is bright and sunny and i feel lost and wonder what i have ever done wrong to deserve this. I hope you keep well and thank you so much for replying to me.👍
So sorry to hear about your problems with your G.P.
Did you know that you are able to change your G.P surgery ?
If you find another surgery and explain the situation to them, then hopefully they may accept you onto their list.
In many surgeries it is the practice nurse who gives the B 12 injections, although of course it needs authority from the G.P.
I believe that your B 12 levels will be raised far more quickly by regular injections than tablets. Some people do not absorb this vitamin very well orally.
Perhaps you could ask the practice nurse (if you have one ) at your surgery why there is a problem .
Lack of Vit B 12 could also make you feel generally unwell, so you do need to have this treated with regular blood tests to assess adequate levels. Buying injections online could be very risky, as you can not be sure of the dose needed or if the contents are as stated.
I do hope you get this problem sorted soon, as someone has suggested you could ask the practice manager and find out how you can complain if necessary.
Personally I would ask the manager to organise a letter from your G.P's to explain why you can not be given this treatment. You could ask them to write it within 24 hours,( having already waited for 18 months), then return to collect the letter the following day....and refuse to leave without it !
If this fails, then if you have a letter stating the necessity for your B12, you could approach your local Accident and Emergency unit at the hospital, where they may help you.
Hi there - thank you for the reply. I am disabled and cannot get to the surgery - i was driving until i moved house and i was at another surgery than the one i am at now and the other surgery were giving me my injections - but then they said i was not in their catchment area after i had been with them for 18 months - so i was without a GP for six months or so and NHS England put me to the surgery i am at now - i have never been to the surgery as they do not have disabled parking and my eyes are too bad now for me to drive. Yes i will try speaking to whoever is in charge and explain everything to them and ask for it to be sent to me. I have been trying to buy b12 injections but i do not speak German or any other foreign language - so that is a no no. I have done some injections over the past two years - a lovely person on here sent me some and i found it really good and it did make a difference - but i have been looking on Amazon to find out if there is anything good on there that i can buy to help myself but i am not sure what is good or bad for me. Thank you for your reply and i will keep you informed of my progress. Keep well and bless you👍
I have both PA and glaucoma although in my case my Moorfields consultant did not think my optic nerve damage is related to the PA.
It’s vital that you start receiving the injections you need. I would contact the GP practice manager to ask for a clear statement as to why your doctor has refused to follow the consultants instructions and request that these now start.
I would also join both the pernicious anaemia forum on health unlocked and the Pernicious Anaemia Society. You will find a wealth of information and help on the forum. The PAS will be able to advise you and may even contact your GP practice on your behalf.
Unfortunately, PA is very often poorly understood and inadequately treated by the medical profession. It’s vital that you arm yourself with as much knowledge as you can.
Hi there and thankyou for your help. My consultant at the Moorfields said that i need the B12 for the Optic nerve and said that i need B12 injections - in fact three consultants have said this to me and they have rung my GP in front of me at the hospital but it still never happens. I will join the pernicious anemia society and see what i can gather from that site and yes it is poorly understood and not properly treated. I did in fact have a call from my GP this morning to let me know what my last blood tests said - mind you that was done before Christmas and she says that my blood taken on one day was 300 and then two days later the nurse came and took some more and that she says is 5000 - so i said please come and see me and explain it all to me - she said that she would come on the 29th - so i have to wait until then - i will have to take it from there. Thank you for your help , it is very much appreciated. Keep well.
You’re entitled to have a copy of your blood test results (online or printed) so it would be worthwhile you obtaining these so that you have correct information in front of you when you speak to the PAS and/or on the forum.
There are others on the PA forum who have pushed for and obtained injections when their B12 serum results have been above the bottom of the range (which 300 may well be).
5,000 seems an unlikely result for serum B12 if you haven’t had injections. Also, I’m not aware that labs are able to test for such a high amount and provide a figure. My blood tests (I’m on injections) come back as ‘>2,000’ as that’s where my GP’s lab stops counting. So I’d question the 5,000.
As you are in a wheelchair and unable to drive, then it is even more important for your G.P practice to help you.
District Nurses are employed by the NHS to visit patients unable to attend the surgery but who need treatment. The Practise manager should be able to tell you why these nurses have not been asked to administer your injections and monitor your progress.
If ,despite all your efforts, including all the excellent advice from JanD236, your practice continues to be obstructive, there is a complaints phone : 0345 015 4033 or ombudsman.org.uk. You may help yourself and others at the surgery.
I am not in a wheelchair - but i had to give up driving and that is why i have never been to the surgery - i use crutches. I have just tried to speak to the Practice manager but she is busy and will ring me when she gets time and as for the Ombudsman.org.uk i had someone trying to help me over a year ago - but she just got fobbed off - in fact i have just contacted her again and am waiting to hear from her So fingers crossed - i just feel so deflated. Thank you for your help and advice - bless you and stay well.👍
Another option could be to contact the support nurses at Moorfields, tell them what's going on and ask them to liaise with GP surgery to find out why GP won't give the injections
I have contacted Moorefields - but they say they cannot do anything as they are to busy and for me to wait until my next appointment. Thankyou - bless you.👍
Every hospital is really busy right now, due to Covid they should at least make a note of your issues and tell you or any other patient it'll take x amount of time before they can look into it with regard the Ombudsman this is a different dept my mum was in care for the last 3 years of her life, council couldn't or wouldn't send us a bill we lost mum 6 May 2020, they hiked us with a 6 figure bill my sister sent it to the relevant Ombusdman we're still waiting to hear back.....
Oh Jennymary - i am sorry to hear about your problem with a big bill to pay - it is all so unfair - i am sure the ombudsman will help you with that and i am sorry about your Mum. My mum was in a home and they treated her awful- i begged my sisterto take my mum out of the home but she said no - they were very cruel to my poor mum - but she is at peace now. I do hope that you get a good result. Bless you and thank you for your input.
Hi there Bluella - they tell me i do not have B12 - but on the practice notes that the nurses use and have left here for over a year it clearly states that i will be on B12 with it never ending and it also states that i do have pernicious anemia. The GP is going to ring me - so i will wait and see what she has to say. Thankyou for your input - it is gratefully received. Bless you😀
WHY? don't you ask the prescribing Consultant what you must do to get the treatment s/he has prescribed ?
How often per month are you to have these injections ?
Maybe in the first instance to get them started you could go to a private GP the Consultant would recommend ( if they cannot for some reason be administered at Moorfields, which would surprise me ).
Then once the urgency has passed ( because you have had the starter injections) you could set about changing your GP. You are entitled to choose your GP practice.
Hi there Rhys 1234 - thankyou for your input - i am supposed to have them monthly - all the GP's around me are too far and i am not allowed to have a mobility scooter as my housing association people keep saying no to that as there are three door for me to get through to get into my ground floor flat and they will not change the doors to self opening - so scuppered again - i just give up now. Thank you - keep well👍
B12 is not a prescription drug, you can by it over the counter.
If you have been told you need injections it is highly likely you do not absorb B12 through your diet and your blood test showed you have enlarged red cells. That limits the oxygen they can carry and in bad cases can cause blindness.
Monthly injections can be given but only with the cooperation of your GP and anyway they are a pain. Do what I do and take B12 (methylcobalamin) as a drop under the tongue, called the sublingual route. You can buy these from Amazon or some other supplement suppliers. They are very cheap at about £10, for six months supply. Ask for sublingual B12.
As a water based vitamin you cannot overdose as you body will just pass it out. Please do it as soon as possible as B12 is essential especially if you are a Vegan or Vegetarian. I eat lots of meat but do not absorb the B12. I know I'm getting low if I get breathless through low oxygen and then check with a Pulse Oximeter which are very cheap and useful.
Do it now! It is critical to your vision, circulation and brain. I am a human biologist with advanced glaucoma and I am blind. Don't become the same waiting for a doctor: do it yourself.
Hi there blackdog76 - thank you for all the information you have given me. I will go on Amazon and see what they have and no i do not eat a lot of meat as i am on my own and do not buy much in the way of meat - i do have corned beef/sausasages and i do eat fish and chicken - so i will try what you suggest - i do have an Oximeter and i do also get breathless quite often - so perhaps it is worth giving what you suggest a try after all i have nothing to lose. Thankyou for your very helpful input and i wish you well and am very sorry that you are blind - doctors do take their time over anything these days. Keep well and thankyou so so much
Dear Xeena, I am very sorry to hear about your injection B12 problem which should not be. I do not understand why it is so difficult in your GP practice. Just do it according to the hospital recommendation. GP practice does not loss any money by giving it. In fact they can gain some money by giving it including claiming back the vit B12 prescription from the NHS. It can be arranged very easy by any GP practice - usually given by the practice nurse. Vit B12 tablet can be bought at any chemist - Boots, Superdrug etc. but in your case you may need the injection form because the absorption from your gut is not sufficient enough. B12 is also important for the nerves including optic nerves. The glaucoma patient it is important to keep the optic nerve healthy. You can discuss with the GP or the practice manager face to face. There may be some communication breakdown or misunderstanding. If this is fail you can present the case to the local health authority. This may not need it. With best wishes.
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