Being made to go back to 12 weekly injections

[KathrynS]

I have just had my 8 weekly b12 injection and when rebooking was told (again) that there is no evidence that injections more frequently than 12 weekly are of any benefit. It took years to get them to 8 weeks and I only managed that when I moved to the other end of the country a year ago. 8 weeks is perfect for me.....12 weeks and I'm a mess! Now I know I'm better off than many who are being cancelled altogether but I left the surgery and cried...... all I can see in front of me forever is being ill one month in every 3. Rant over !

[Narwhal10]

Hi KathrynS,

You are entitled to rant. It’s ridiculous

[Nackapan]

Write to your surgery. Tou should get 8 weeks back ad it clearly states 8- 12 weeks

[KathrynS in reply to Nackapan]

Thanks..... where can I quote from with it saying 8/12 weeks.. I read 8 weeks with neurological symptoms but mine is more extreme tiredness but inability to sleep total memory fog and talking rubbish and bad headaches

[Janma123 in reply to KathrynS]

Your symptoms are neurological - memory fog, ‘talking rubbish‘ and headaches are definitely neurological!

[fbirder in reply to KathrynS]

The prescribing bible for GPs is the British National Formulary (BNF). This is what it says about administrations of hydroxocobalamin. bnf.nice.org.uk/drug/hydrox...

____________________________________________________________________________________

Indications and dose

For HYDROXOCOBALAMIN

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias without neurological involvement

By intramuscular injection

For Adult

Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2–3 months.

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

____________________________________________________________________________________________

Print it out and show it to your idiot GP. Ask why they recommend doses every 2 to 3 months if every 2 months has no benefit.

[LorraineQ]

I was the same my doctor wanted to go from 3 monthy to 6 monthy injections I lost the plot with him as I was already nearly 2 months over due. He was trying to say my bold levels where at s goodpoint but I had to explain his bad I felt and the effects they have on me. I felt like I was going mad. In the end I got my injection

[Dee011960 in reply to LorraineQ]

I just got my injections reinstated yesterday, after I had a melt down with 2 gp's in the surgery, the 2nd gp (my regular one), then asked me questions about 'when' I had the first dose, after closing my 'jaw drop', I explained back in 2003, she then said she had to read the previous gp's records, she then called me back, apologised and said l shouldn't have had my injections stopped after reading my medical file, I now have my injection booked for Monday morning! I believe gp's have cancelled all B12 injections to see who will return, if you don't return and are happy on the tablets then they will leave you on them, but they have cobbled Non diet and diet B12 deficiency together, making non diet B12 at risk of having symptoms return and becoming unwell!! Very bad gp's!!

[Sleepybunny]

Hi,

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Have a look at my reply in the thread "band head on wall" just above yours, which should have some useful info.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Mrsyng188]

Hi, my GP did the same, I was feeling really well after moving to 8 weekly injections last year.

My injection in March was cancelled and I had to fight with the surgery to have B12 reinstated, I contacted my MSP and evetually had an written apology, they claimed all the information at start of lockdown caused confusion. When I called for 8 weekly injection, it was refused, a GP made the decision I was on 12 weekly and no more. I had my levels checked twice in 3 months, frustrating and soul destroying

A second written complaint to surgery, they would refer me to Heamatologist. A decision made by a person I never met states I could not possibly have neuropathy after starting on injections. I will contact the surgery for a physical copy of the report.

I joined PAS and bought my own B12 and am injecting weekly, I think it will take a long time to improve, but was causing myself so much stress dealing with my health centre.

The only positive I have is they confirmed it is definitely PA with positive antibodies.

I have had a lifetime of stomach issue and was diagnosed B12 def in 2009.

Until joining PAS this year, I had no idea of ther symptoms, Vertigo, diagnosed privately with BPPV 2 years ago. I have had years of physio for vestibular rehabilitation. A real aversion to bright lights and sound. Burning Feet, the GP I asked about it years ago made me feel so stupid I never asked again, so have suffered with burning, painful and cracked feet for years.

I have had hip Bursitis for 2 1/2 years, was told about pain not being real and referred to Pain Clinic, which has just started online, I had a very good Advanced Nurse Practitioner diagnose the Bursitis in January, I cried with relief, could I really just imagine pain that stopped me walking! Recent hip injections have not worked, waiting on a call back from private rheumatologist. Thankfully I have access to this, the chap I saw on NHS had no interest in the hip pain, if I had seen him privately I am sure it would have been different.

I was also dianosed with Joint Hypermobility syndrome and was born with Psoriasis.

Like many members I have been made to feel like a hypochondriac and exagerating my symptoms.

It feels good to take control back and this pandemic has forced me to invest time learning about B12 and its widespread symptoms. I bought my own supply and will continue to self inject and hope to keep on top of symptoms. I have also bought a number of books and passed these to friends and family too.

I will continue to support PAS and their struggle to have B12 deficiency recognised and treated appropriately. Maybe one day we will have a proper understanding and support from GPs.

Stay safe

[KathrynS]

Thanks everyone

[Wwwdot]

Kathryn

I would have cried too and you are not ranting. 🤗.

Lots of good advice here and IF you don’t succeed then consider self injecting and have the NHS too. You can’t overdose and you never know you may feel even better!

Best wishes for a positive outcome!