B12 Refused Scotland

[Mrsyng188]

I was advised by a nurse on Wednesday that a decision was made by my practise in West Lothian on Tuesday all B12 can be delayed for 4 weeks, then another 4 weeks without impact as B12 is stored. I was shocked, she asked if I wanted to speak to GP, I declined and just said they were not following NICE guidelines.

By Thursday morning I was furious and decided not to let this go. I contacted NHS Scotland about B12 refusal and was advised to write to practise manager with my complaint in first instance.

I contacted practise and the manager called me back within an hour, he advised that I did not need B12 injection as my last test was very high, my blood pressure must have been through the roof. He was told my reading was high because it was NOT absorbed, B12 defiency was NOT a fad diet or lifestyle choice but an inherited deadly disease that killed my grandmother (only named as anaemia on her death certificate) also affecting my 2 brothers. Explained the WHO guidelines that B12 is essential med. He would speak to a GP and call me back.

A frustrating call with GP later advising B12 stopped to protect me!!! The surgery is too dangerous for me to attend. It took me 10 years to fully understand the impact of B12 deiciency, diagnosed 2009, moved to injections 8 weeks last August and finally felt the benefit. I have listed some of the discusiion

I have the B12 ampules, can I self inject? NO

Can someone else inject? NO

Drug addicts can get needles, can I? No

Are there walk in centres in West Lothian? No

So you are withholding my medication which will make me more vulnerable to infections. Was told I could investigate the private route or buy a B12 spray.

I called around a few people who were advertising B12 injections, they will not touch an NHS prescription. Fortunately I have private health care, they do not cover B12. I thought my head would explode with the stress.

Eventually I ordered 3 sprays from BOOTS online, it is not stocked in store.I spent a very frustrated 2 and half hours yesterday morning just trying find some direction. Once life returns to normal I will buy my own supplies and self inject, i never want to go through this again. I will also make a written complaint to my surgery about lack or support, knowledge and direction for patients. It is infuriating that my surgery has behaved this way regarding B12, I could (almost) stand up for myself but so many people will just accept what they are told which can have serious implications for their health and immune system.

The company that took over our practise 2 years ago retested all patients on B12 injections, many injections were stoppped, I recieved a call saying my reading was high, but, as B12 level was in single figures when diagnosed I could choose to continue treatement and i did, but not really understanding the impact of B12.

GP surgeries should provide clear and consistant guidelines for patients requiring B12. If a spray is the only option for the forseeable future, then prescribe it, do not leave B12 patients without support. Older patients may not have access to the internet to research and buy the spray, and many people, especially in this current crisis will not have the caxh to pay £12 for one spray.

Apologies for the length of the message, I have never written anything about B12 before or made a complaint about a doctor, it just felt important see if anyone else was going through the same

[clivealive Forum Support]

Hi Mrsyng188 if you have P.A . I wrote this on a previous comment -

You should point out that you would become a "medical emergency" if injections were halted as the word pernicious means deadly, lethal, fatal.

I wish you well

[Nackapan]

I managed to get mine. But have just bought supplies. I'm pushing for an nhs prescription. I asked face to face now written.

Yoh can certainly do without this stress

[Nackapan]

Ate you a member of PAS . They could help you.

I joined online £20

[Mrsyng188]

Thank you, I have joined PAS. I will wait for arrival of the spray, due on 27th March and fingers crossed this will help for the coming months.

I am taking a multivitamin with iron, as recommended by GP last week to correct low Iron, low Vitamin D and anomaly with liver function.

Trying to fight extreme tiredness, pins and needles, and generally feeling rubbish after going cold turkey coming off Duloxetine, which has very nasty withdrawal side effects.

Was really hoping this B12 injection would give me a boost.

Looking forward to reading all the advice on PAS sight.

Stay safe, the £20 spend to join PAS appears to be money well spent already.

[Bellabab in reply to Mrsyng188]

Buy B12 vials, needles, swabs, syringes online and self inject every other day till no further improvement. Print off PAS advice to GPs and give to your surgery. I have been doing this for two months after having injections for four years that did not correct the neurological damage - depression and tiredness were deep, persistent and antidepressants did nothing. Duloxetine tried but made the neurological symptoms worse.

Now the symptoms have all reduced by about 60% and I will continue.

I hope you manage to sort it out and improve soon.

[Mrsyng188 in reply to Bellabab]

Thank you for understanding. A friend has supllies and will show me how to self inject this weekend.

I will print off guidelines and pass to surgery along with a covering letter.

Until I joined PAS yesterday I had no idea that so many of my symptoms were PA related. I was fortunate to be diagnosed by a very caring GP who has sadly passed away and I have not met one other GP that has any understading of B12 deficiency and it symptoms.

I know I am not the only person with hot painful feet, seems trivial, but prevents you going anywhere you have to walk, you avoid going out and enjoying events, adding to the depression. The hot feet are currently sidelined as I have hip bursitis, that pain makes you forget the feet, hip injections due beginning April, no doubt it will be cancelled.

This disease, when left untreated properly makes you sound and feel like a hypochondriac.

This has been a wake up call in my lack of understanding and makes me determined to do what I can to improve my own health.

[Sleepybunny]

Hi,

Have a look at this news item from PAS website. It has info on what to do if B12 jabs stopped.

Covid-19: Letter to Health Ministers and injections being stopped

pernicious-anaemia-society....

Blog post from B12 Deficiency Info website which has some info on what to do.

b12deficiency.info/blog/

[Mrsyng188 in reply to Sleepybunny]

Thank you, I joined PAS today.

[Sleepybunny in reply to Mrsyng188]

Have you considered putting your concerns into a letter to GP, copied to practice manager. Keep a copy for yourself.

If you think about doing this then I suggest you read the two links in my post above first.

If you're a PAS member you could ring their helpline although there may be some disruption to it.

PAS members can access details of PAS support groups in UK.

Although group meeting have been cancelled , you may be able to speak informally by phone or e-mail to a group co-ordinator. Not sure if PAS support group in Scotland is active at moment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

There is also a West Scotland Thyroid Support group who welcome people with b12 deficiency and other auto immune conditions. Understandably their meetings have been cancelled but may be of interest for future.

Link to Thyroid UK forum thread about West Scotland Thyroid Support group

healthunlocked.com/thyroidu...

[LWhelan]

Why wait for life to return to normal to SI.............you can still buy what you need online and I taught myself to SI from YouTube. It wasn’t easy but better than the alternative.

[Dons1903]

Mrsyng188

Having your b12 retested whilst on b12 injections is a waste of time. It will or should be high. This shows that it’s working! You have to be off them for around 4 months for it to be accurate which in turn would have an adverse issue on your health. I despair with some doctors!!!