But not without having to put up a fight first it seems … yesterday morning this was my ‘askmyGP’ message I fired over after having my appointments cancelled and rebooked by a receptionist who didn’t have a clue about b12 and didn’t want to…just sheer ignorance…
Good morning sorry again to be contacting you, I have had the bloods cancelled due to the nurse Mel having covid, this has had a knock on effect to having the b12 which was due on the 14th dec, as having the b12 before the blood test would give a false test result for the intrinsic factor antibody test? I am unsure so have had to rebook my b12 injection now for a further 3 weeks time into the new year 4th January.
Bloods 31st December@ 8.55 and b12 Tuesday 4th @ 8.35
I am extremely unhappy with this, I know staff and doctors are only human and do get unwell like their patients but there are people like myself who have ongoing worsening neurological symptoms, I believe a 3 monthly injection which equates to 4 mls of b12 a year is simply not enough for people who cannot absorb a vitamin that is detrimental to your health…. Measuring blood serum levels is also not an accurate reading and should be scrapped, this should be taken at cellular level.
I feel I am being pushed towards sourcing my own b12 supplements from Germany, Canada or alike, my body is abusing me and has been for over 10 years, I believe it has been b12 that has been the culprit all along, I am in constant pain with my spine aching and my eye moving and vibrating, my sentences come out all jumbled up and I am loosing the ability to remember simple things …. I am angry all of the time because of the way I feel and frustrated at everything, and I am only 36. We have given up trying for another baby years ago, 7 years we have tried and absolutely nothing, we have been to a specialist fertility clinic, all is well. This is why I ask for the homocysteine level to be checked, this would bring no symptoms with it, and with high levels of this I would not be able to conceive… my youngest child is 12 she was conceived while I had the coil so you can see my frustration. You do not just become ill and infertile for no reason from 26-36. Please don’t think I am being horrible to you, I just need help and answers to feel better again this is all I want.
So they rang and instead of getting the doctor involved (it gets screened by the receptionists first) they rang and rebooked again for tomorrow morning at 8.10am for the bloods and Tuesday for the b12 which was the original date to begin with, just goes to show the ignorance, they will leave a patient nearly a month overdue because of a blood appointment which needs to be done beforehand….. next they will be telling all patients they only have one chair in the waiting room, one doctor, one receptionist, one phone and one pen to go with their one nurse 🙄 🙄 being in pubic now is getting a bit like being in a real life carry on movie although not very funny at all just ridiculous……
I have read another post recently of somebody else being fobbed off not being able to get their b12 also…. It’s disgusting and a complete lack of care…… I asked about being sent to the local hospital to get it done but no they ‘don’t do that now’ same with bloods…….even though I am taking my daughter to an appointment today at the hospital? No sorry it can’t be done….. what a waste of resources, time, and way to go on lengthening and aggravating conditions that should never and don’t ever need to get to the point they do, all to save a quid or two and apparently better the ’system’
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Lollipops35
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I really feel for you Lollipop35 . You certainly need more regular injections than once in three months and the guide-lines state that patients with your symptoms should have an injection every 2 months. Fighting doctors when one feels so unwell is soul-destroying . I gave up the fight and opted for self -injecting . I could feel myself slipping into the abyss ( yes it sounds melodramatic , but I was at the end of my tether . So , I suggest self-injecting . It has “saved “ me . It is not expensive -cost about £1.50 for everything - Ampoules of B12 Hydroxocobalamin, syringes , needles . .
I will send you the information that you need . Even if you do manage to get more injections , it’s good to have this information . Very best wishes
I know it’s all just so wrong , could you imagine the uproar if the guidelines for diabetics and their access/ amounts of insulin for instance were changed, it’s all down to one of them things again isn’t it, because it’s not an instant thing it dosn’t matter ….. your seen as a drain on expenses because lots of things are going wrong with your body and yet it can be fixed with more regular dosing…..
Thank you so much for the links for the b12 and needles, i am literally waiting on my results and then I’m going to question my doctor on the wait for my neuro referral because it’s not on, once I have some gauge and I’ve made my mind up from that referral wait time and the blood results then I will start the ball rolling….. I have more or less told my doctor already I am being pushed into sourcing my own medication so it’s not like she will be surprised will she when she finds. Out 😆
The way they do the referrals now though is laughable!
I will post a picture later of it you won’t believe your eyes.
Am so so sorry to hear this Lollipop......really I am. I had simular experience though not the obession on b12 tests that you have experienced! I had to wait 6 months for a neuro appointment. My GP wouldnt prescribe B12 injections until then......she said the the local CCG wouldnt let her. I bought my own and told the GP. I injected alternate days sc. Three months later went back to see her (pre covid days when doctors saw you inperson!) and she was amazed at my improvement but still wouldnt precribe . Eventually saw neurologist after 6 month wait........he agreed with what I had been doing but wanted me to carry on purchasing to save the nhs money! I had to beg for it to be on prescription......he conceeded in the end and its on my script but left a bitter taste in my mouth. Since then its been increased to daily ( and I then went twice daily ) as its the only way to stop most of the symptoms. Still have toes numbness and some tremors but am vastly improved. Dont let them push you around lollipop there are no consequences to them if inadequate treatment causes you harm......but there certainly is to you.....lol.
Glad you have got it resolved this time.I've had the sane aggravations!
Recently have had the whole rigmarole yet again getting my mother's b12 In jection sorted.
Thats only 3 monthly .
She's 92 and it's done eventually by district nurses lor an HCA . Usually tge latter.
The process is quite ridiculous as csnt speak to the District nurskng team anymore.
So it's a phone call to her dmsurgety pharmacy abd receptionist for d team.
Every 3 months with a follow up request to her hp to put it on a repeat prescription one ampoule delivered. Tgen have to constant agsin saying it there then told what day . No time. So on high alert to let tgem in as om jot letting mu. Sit by the doir all day waiting as sge is deaf !!
( earlier post)
Put in a request in writing to gp for 2 monthly b12 injections.
Copy in practice manager.
I had to do all of this .
Keep pushing it's all filed on your medical notes. Letters more powerful.
Even though now prescribed 2 weekly my recent repeat woujd nkt get signed off.
Normally electronic prescription.
Changed to a paper one as gp picking it uo wiujd not sanction it do had to be signed by actual gp who prescribed it !!
Not happened before.
Same gp trying to block referrals fir me too
I think he totally dismisses my problems abd thinks I'm a hypochondriac.
I deal with him face to face when possible Always polite . So wish he could be 'me fir one day !!akso be open to getting more knowledge o b12 issues
Pharmacy or myself dudnt understand as no wat of telling. .
J had to ho to the surgery as no one picking g uk tge phone.
It's exasperating.
This is a blip fir ne as has been okay . One or two gps try and block it
I've my own supplies as well .
Takes put tge stress .
No right as you say.
I've in the past offered literature fir professionals ftom PAS
Unfortunately it's not just b1e affected
I blame brexir gir staff shortages .
Non clinical staff shoujd not be put in this position or triaging!!
My sugery have no nurses . The HCa has been trained to do injections abd bloods.
Morale is very very low.
It's very very worrying.
Perhsis if able get yiur own tk take sone stress out if it
Gkad this tine sorted.
B1e kevrjs not neededoncr on b12 injections
A waste of money and can be used against you.
I refuse.
Only problem is uts fine with folate that I do want testing occasionally.
Tge high b12 was ignored apart ftom one gp who stated I dudnr need as many injections .
I wish I didnt .
St waiting to skip diwn the Street which I eas told woujd happen 3 years ago.
"The way they do the referrals now though is laughable!"
There may be local guidelines for your CCG/Health Board on neurology referrals.
May be worth searching online with "name of CCG/Health Board Neurology referrals" or submitting a FOI (Freedom of Information) request to CCG asking for a copy of local policy on referrals to neurology and if no local policy exists ask for what policy they use.
It could be NICE guidelines Neurological Referrals.
Hi all, I have written to Wedgwood but no reply as he had given me a world of knowledge about buying b12 and where, links etc around a week ago….. I had a run in with the nurse yesterday…. I have copied and pasted the message I sent to wedged in hopes some of you might have an answer to my questions? I really need to be sure before I buy.
Hiya, so I’ve not had any results yet for the antibody PA test yet but am starting to boil over with the doctor surgery, today I ask the nurse what it was she was giving me? And she wouldn’t tell me ….. excuse me for my choice of wording here but what a bitch who does she think she is? There will be a letter making its way to the practice manager….. I wanted to know if it was
Hydroxocobalamin.
Cyanocobalamin.
Methylcobalamin.
Adenosylcobalamin????
And her response was they are all the same…. 😡😡😡😡😡 I said no they are not…. I said the nurse last time said they have changed it so what is the one you are giving me? And she wouldn’t say, she just kept saying ‘oh no they are all the same’ I said no they arnt, she jabbed me and I left really pissed off 😤
I am really concerned about my skin because I want to get the right one which is least likely to affect my skin, I am quite prone to out breaks on my back and chest at random times? Not just after the b12 jab, I cannot make sense of it really, I would put it down to the b12 if it came up a week or two after but it can be 5 or 6 weeks later sometimes.
So it’s now really a stab in the dark as what I hve been having the last year or so and what I would be best to buy?
As far as I know it is almost certainly hydroxocobalamin if you're in UK and being treated by NHS.
There may be a few people who get cyanocobalamin injections due to an allergy to hydroxocobalamin but BNF link below says cyanocobalamin injections are not to be prescribed in primary care.
NHS link about treatment for B12 deficiency lists only hydroxocobalamin and cyanocobalamin injections.
My understanding is that methylcobalamin and adenosylcobalamin are not in the BNF list or NHS list of prescribable medicines. I'm not medically trained.
If you access your medical records, it may record in them which form of B12 you are being given.
Hi sleepybunny so a few days since I have last been here …. And so the confusion just carries on…. The antibody test came back negative so this dosn’t leave me any clearer about why I have this deficiency and the reasoning behind it, also the renal profile was fine, fbc fine, folate fine, although I mentioned the magnesium and potassium as results I had apparently been waiting for these were never mentioned 🤷♀️ she did say that my iron was low again at 8, last year it was at 7 so ever so slightly better this time 😂 I have no idea why I can’t maintain the iron, I can absorb it as they did repeat the bloods after 3 months worth of 308mg daily iron tablets and saw it had improved to 17…. I have a very good healthy varied diet so it seems I can absorb but not maintain and I don’t know why this is…. Please could you shed any light here on this?
Hope you are well sleep bunny and all other who have commented, I do read your comments but I don’t have the wealth of time to keep messaging back unfortunately, it’s a lot of information to take on board and that I am very very grateful for…. Your a
Fantastic bunch and I appreciate you all for being right here when I need you….. UNLIKE the HEALTH SERVICES!!!
Don't worry about replying, I just want you to have access to useful info.
Some links I post may have details that could be upsetting.
"The antibody test came back negative so this dosn’t leave me any clearer about why I have this deficiency "
Martyn Hooper, chair of PAS, tested negative more than once before getting a positive test result on IFA .
It's still possible to have PA even though you had a negative result in IFA (Intrinsic Factor Antibody) test. Some people are diagnosed with Antibody Negative PA.
This flowchart from a UK document shows how PA and Antibody Negative PA can be diagnosed. Might be worth giving this to your GP.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Have you tracked down the local guidelines on treatment/diagnosis of B12 deficiency for your CCG or Health Board?
There may be a statement with the local guidelines about B12 injections during pandemic. Getting hold of this statement may help to explain the difficulties you are having.
BSH published updated guidance on B12 injections during pandemic in late April 2020. See link below.
Fish tapeworm and Giardia Lamblia ( also known as Beaver Fever) are two parasites that have been associated with B12 deficiency...there are others.
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell.
Eosinophil result can be found on Full Blood Count results.
Has your GP looked at any medication you are on and checked to see if it is associated with low b12 and/or low folate levels? Local pharmacist may also be helpful to talk to.
Metformin, a diabetes drug, PPI drugs and some anti epileptic drugs have been associated with low b12 levels in some studies.
"I am in constant pain with my spine aching"
I suggest you draw GPs attention to spinal symptoms in any letter you write or in any conversation.
See Point 1 in above link. It's about under treatment of people with B12 deficiency with neurological symptoms.
Untreated, under treated or delayed treatment can lead to an increased risk of damage to spinal cord in people with B12 deficiency.
I am not saying you have spinal cord damage, I am not medically trained but I am saying that your GP should be aware that this is a possible consequence of B12 deficiency and mentioning it may get them to pay more attention to you.
You may find it helpful to pass on some of the info below to GP.
Thanks sleepy bunny I just find it so hard when I am suffering mentally this much to put together a sentence and the things in my mind to that I can explain and put my pitch to a DR who should by rights know everything outlined in all posts here…..
I know you’ve posted lots of information and advice and I have read all links and what you have written but to me nothing seems to make any sense to me, repeated low iron but why? I fit none of the criteria for the causes and the same for the b12 deficiency….same for the vitamin D But the doc is repeatedly treating things singularly
Looks as though I can’t maintain levels …..
I am not the doctor though and I have asked about testing for homocysteine levels to be tested and told no it isn’t a test they do….. again this is diagnosing a condition but half treating a condition and ignoring anything else that could need attention that comes with the territory…..
When I said about my spine aching in my earlier post I am positive it also affecting my vision? When my vision is disturbed (it only happens in my right eye ) if I tip my head back it will stop…. If I put my head back straight then it starts again? It’s quite bizarre and like a switch…. On /off on/ off
Today I noticed the skin on my finger tips was a strange purple colour? My hands weren’t hot or cold and I’d been sat still for over an hour talking with my uncle …. And then after moving about a bit they literally looked a mucked white /grey/green just an aweful colour all over my hands ….. wondering if this might be the iron deficiency? Could seem obvious but I didn’t notice this last time and I was slightly lower again.
I could take all this information to my doctor but they look at the clock and start to roll their eyes …..
they just do not want to listen and only act on anything when your body is that broken you end up in a&e and there is irreversible damage….
If you think of it , take a photo/film of any symptoms you can see eg skin changes.
The letter writing link in my reply above has letter templates that might help you to write a letter to your GP.
Even if the GP does not read a whole letter, the GP practice is supposed to file it with your records so it is evidence that an issue was raised with GP surgery.
Some people on forum have been helped by person who runs the B12 Deficiency Info website.
You could ring the PAS members' helpline if you join PAS.
Have you ever had thyroid tests done? TSH, FT4 and FT3? The symptoms with B12 deficiency often overlap. I know how hard it is to keep going when you have symptoms and are not being heard properly by the gp. It also adds to the stress of being ill.
The thyroid forum is another really helpful part of Health Unlocked. I realise you are very busy but if you get a chance it may be helpful to have a look and read a couple of posts.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
