B12 jab refused

[Laura1961]

i have pernicious anaemia and have 8 weekly injections. My surgery has told me that i am unable to have them until further notice. They have offered my cyanocobalmin tablets 3 times a day and say the B12 is not on their list of essential patients who have to visit the surgery. they have refused me to self inject also. i am so scared that I shall become so ill again. my symptoms before diagnosis were dizziness,tinnitus,memory loss,unable to stay awake, diarrhoea, parasthesia, cant stand bright lights or noise,swollen tongue,heart racing,cramp etc. couldn't get to work. Will the tablets help at all?

[ellj]

If you post a bit more detail you will most likely get some experienced replies.

If you have recent test results it might help to post them with ranges.

Someone will be along soon who can explain more thoroughly than me..

Best wishes Ellie

[wedgewood in reply to ellj]

If you have P.A, , tablets do not help . And injections are for LIFE . Anyhow , why have you been receiving injections up till now , if tablets would do the job -absurd !

[Laura1961 in reply to ellj]

Thank you. i have PA. I shall try to get hold of my last blood tests

[zoomy2222]

Laura, thank you for your post. You alerted me to the fact that I needed to check on what my GP surgery is doing with B12 injections. I just rang them. They told me they are still giving them to people who usually have them. I have been having B12 injections for several years. Every two months. I booked in for my next one in a few weeks whilst on the phone. I said that I was worried about picking up the virus at the surgery. They explained how they are going to great lengths to keep the surgery free of the virus and the protocols they are now using. I booked it and will decide nearer the time whether I can take the risk. The doctors there are not doing face to face appointments, only the nurses. Sorry to hear that your GP is refusing your B12 injection. I have shopped around for this GP having left at least 3 surgeries in the past 5 years. I really hope you get what you need, I know what it is like to need B12 and not be able to have it when its needed. Hope this helps.

[firehill]

I think that the issue here is that GP surgeries are failing to distinguish between patients who have PA and those who have a dietary B12 deficiency. While low dose oral B12 may be suitable for the latter group it is absolutely not for the former.

My advice is to speak to your GP and make them aware that you have PA and, if you have your haemoglobin count from your initial diagnosis, then remind them of that. If they still insist on the oral B12 route then draw their attention to the fact that no study has shown that an oral dose of less than 1000mcg daily is suitable for PA patients.

I had the above conversation with my GP and he did not hesitate in making an appointment for me for my regular B12 injection.

[Laura1961 in reply to firehill]

The surgery i spoke to on the phone said that they are following government guidelines and will not give b12 jabs to anyone unfortunately

[Nackapan in reply to Laura1961]

The government guidelines are fir thise without a diagnosis of PA

Challenge them. You need injections.

[D3xt3r in reply to Laura1961]

You need to have thus conversation with a Dr, so request a callback. Don't be fielded by a receptionist. Good luck

[Gambit62 Administrator]

advice from the PAS for those who are experiencing problems with GPs suspending injections

pernicious-anaemia-society....

also this article from a GP trying to explain why injections shouldn't be withdrawn

pernicious-anaemia-society....

if the tablets are 50mcg then they are unlikely to do anything. If they are 1000mcg then they may help, even if you have PA

[Laura1961]

Thank you so much. i have emailed this to the surgery

[Sleepybunny]

Hi,

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Many on forum source their own supplies and self inject. My personal feeling is that this is a last resort but many are being forced by current circumstances to consider this.

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods.

If you are unhappy with what has happened, might be worth putting concerns in a letter to GP. You could include info from two links at top of this post.

"They have offered my cyanocobalmin tablets 3 times a day "

I suspect these are low dose 50 mcg tablets which are only recommended for dietary deficiency.

See next link to UK b12 document

BSH Cobalamin and Folate Guidelines

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

"i have pernicious anaemia and have 8 weekly injections"

If not already a member, I'd suggest joining PAS (Pernicious Anaemia Society). They have a helpline for members to use.

There may be disruption to helpline during pandemic.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Support meetings are cancelled during pandemic.

PAS membership costs about £20 for a year's basic membership.

pernicious-anaemia-society....

I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, more UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sal2266]

Hi Laura1961

I was refused my 3 monthly B12 injection last week, I received a text message the night before my appointment . I rang my Surgery and a nurse rang back stating I would have to wait a further two months. She told me to google foods containing Iron, the reason we have B12 injections is cause we dont absorb Iron . Next day I rang surgery again and a Dr rang me back, I explained all the symptoms I was having and I was worried about my state of mind and I told him if I felt this bad now, in 2mths time I may not be here. I had my B12 injection that afternoon. I hope you are able to receive you B12 injection soon. Take care .

[Quigley2005]

I work in gp practice and b12 injections are all cancelled. I told my manager this was ridiculous as she knows my situation. It is unfortunately protocol. Most patients have been ok with this but tablets have been prescribed. I explained that tablets wont work for everyone but nobody listens

[D3xt3r in reply to Quigley2005]

Omg!

[CoolGilly]

Hallo - I wrote to my GP politely quoted that B12 injections are on WHO list of essential medicines. And quoted newNICE guidelines 2019. I stated my current symptoms and how lockdown was making symptoms feel very disturbing. Also that I was concerned my symptoms would become irreversible if not treated correctly. I offered to self inject under present circumstances. GP quickly replied my prescription sent to chemist and could I pick up syringes etc from surgery.

GPs currently have Leeway don’t be fobbed off - tablets not suitable for those of us with non absorption problems.

Hope this helps

[mountainice]

Hello, I am so sorry this is happening. One part of your post interests me though. I too had diarrhoea for many, many years (over 14). I have monthly jabs at the surgery but last year I decided to start self-injecting as well because I was still feeling unwell. I started last April and inject every 10 days (including the surgery jabs - until they were stopped for Covid) and this had an unexpected result. I keep detailed records so am able to give you my timeline. I started SI on 27th April 2019 and my record shows that 30th July was my last full episode of diarrhoea, bad stomach lasting 3 days. I still occasionally feel queasy but this has lessened so much - I also started going gluten-free on 30th November 2019 which has helped enormously with this queasiness. Hope that piece of information helps a little. I know we are all different and what has helped me may not help others.

[Cherylclaire Forum Support]

I can see some problems with a practice being able to distinguish between those who can have tablets and those who should have injections - there is no clear-cut distinction to be made as many people never know whether they have PA or not.

Tests are flawed and/or discredited, GPs do not always check anyway, and for some of us, no answer is ever found. Sometimes, the journey from one consultant to another in the search for answers can take many years- what if someone is somewhere on this course ? Tablets/ injections ?

So one must assume that if regular B12 injections were the answer previously, then they still are.

I don't get B12 injections on the NHS any more - I self inject - but have written to my local practice asking if they are still giving B12 injections to those that need them, and why they should either be continued or patients be given the opportunity to self inject at this time. I think others have done this too. Like Coolgilly (above), I also mentioned that B12 as injection (1mg in 1mL ampoule of hydroxocobalamin) is listed on page 34 of the 21st edition of the WHO Model List of Essential Medicines 2019.

I have had daily diarrhoea for years now. It does not make a difference what I eat. The frequency of injection has no impact either. I was once put on a FODMAP diet for 3 months - also did not change anything. I had a SIBO test (hydrogen breath test for small intestine bacterial overgrowth) because my MMA (methymalonic acid) was still raised after B12 injections started: the results were either SIBO or IBS (inconclusive). Had a bad reaction to the antibiotics given, in case SIBO was the answer- constant vertigo and headache- no other changes though. That was about that in terms of treatment - another dead end.

So no real answer for me. SIBO might be worth testing for at some later point for you, though. Has your MMA ever been tested ?

Have you had a 24 hr heart monitor done ? My daily thumping heart was given a name: ventricular ectopics. Apparently harmless but can be controlled with betablockers . I decided not to take them, as this condition started for no known reason so can stop in the same way. Soon I hope. So this might also be an avenue worth exploring later.

In the meantime, I would get back to your practice about the treatment for PA being injections for life. There is currently no cure and no viable alternative.

If there is no way for a nurse to administer this safely (for him/her and you) because of lack of appropriate PPE, perhaps they can give you B12 ampoules on prescription for now, and supply syringes and needles. Best practice would include training to self-inject safely. Others have had this.

This should not have to be fought for on an individual level.

Have a look at the specific advice on the Pernicious Anaemia website. If you do have to fight, they would have the ammunition you need. Good luck.

[Laura1961 in reply to Cherylclaire]

Thank you for your advice. i did have a 24 hour heart monitor and the pounding stopped once i started on the b12 injections and most other symptoms are controlled by 8 weekly jabs. i am writing a letter to the surgery now.

[Cherylclaire Forum Support in reply to Laura1961]

Good for you, Laura, and best of luck !

Stay well.

[liznjojo]

I had a prescription of b12 so went to pharmacy asked for 1ml needle.took with me so she could see what it was for and self infected .rang doctors so they cud note it. Somethings you gotta do ur self or wait tbh x

[Survivorette]

According to another group B12 is a WHO essential medicine. Ask to get supplies to self inject.

[scnuke]

So sorry to hear that you have been put in this position by the current crisis. There are many good, kind, and caring physicians out there. Unfortunately, it appears that your NHS is also beset with many that are also unkind, uncaring, lazy, egotistical, and woefully under-educated with no desire to learn anything new that could actually help their patients. Many people are hesitant to remind their physicians and staff that you have selected and hired them. They work for you since your taxes, insurance premiums, and payments are what pay their very adequate salaries. But, at the end of the day, you and you alone are responsible for your health. So you must take the bull by the horns and do what you know you need to remain healthy. How dare they tell you that you are not allowed to self-inject! Order your supplies from the many resources mentioned here and take control. Do not allow them to ruin whatever gains you may have made. Many physicians operate within a very small box and will try to tell you you do not need this, or that, or this will work just as well. The truth is some do not care. Others may care, but are not willing to put in the work to learn the many intricacies of PA and effect of B12 supplementation.

We are all at a very difficult point right now. Do not allow yourself to lose whatever gains you may have made. You have the knowledge and ability to take care of yourself, and there is always another physician down the road. Good luck and do your best to stay healthy.

[HelloSun]

Perhaps you can buy your own supply online and give yourself the shots? Lotsa folks from the UK buy their b12 and needles online and self inject.

[DIONYSUS]

I'm not sure on all your information but P.A would suggest injections absolutely necessary over tablets which i imagine the relevant nutrients will not be absorbed. I would seriously question them on this. I keep a 2year supply at all times .