HELP PLEASE STUPID GP

[Parksy]

My GP has cancelled my injection as they are reviewing all patients receiving b12. I have peripheral neuropathy, alodynia and feel like death within 4 weeks of my regular injection. Could someone please help me. Plus can someone tell me the ideal values of co factors for methylation like ferritin potassium etc so I can fight my case yet again!!!

[fbirder]

Ask why you are not being treated according to the guidelines in the BNF? Ask in writing.

Do not mention 'cofactors for methylation' as it's pretty meaningless and will make your GP suspect you've been reading nonsense on the interwebs. You need B12. Demand the B12 you're supposed to be getting.

Have you been seen by a neurologist.

[Parksy in reply to fbirder]

They are wanting to treat every one with oral cyanocobalamin to save money. I have seen neurologist he agreed with my 8 weekly injections for peripheral neuropathy and allodynia and for weakness of muscles. Apparently this isn’t recorded in my notes. Also my gastroenterology report of gastritis isn’t on my records. My GP surgery is the worst in my area but no other surgeries are taking on patients. Thank you for your feedback. I’m very grateful.

[Nackapan in reply to Parksy]

Get onto the neurologist. It's really bad they haven't written to your gp. That needs to be on your notes . They then have to follow neurologists instructions of your treatment with b12 injections

I found that the quickest route to get my injections more regularly at the start.

I'm sorry you are in this position.

[Ashbe in reply to Parksy]

I am so sick f doctors,consultants etc not communicating with each other and with me. I now ask for a copy of my health records every 6 months and then I distribute .

I was supposed to have started on amitryptiline 4 months ago but GP says he’ll wait until he hears from Neurologist. Neurosurgeon won’t see me just writes to neurologist .

[jillc39 in reply to Ashbe]

I hope when you get the amitriptiline it works for you as well as it does for me. At last I can sleep through whereas before I was having to deal with the terrible pain in my feet and legs/ I am so grateful to my neurologist for prescribing them.

[Ashbe in reply to jillc39]

Well hopefully. Not till after Christmas now though .

[BirdlessBox in reply to Ashbe]

I was given amitryptiline and it didn't suit me at all. I have another friend that finds it great - seems to really vary between people. It made me increasingly anxious and I had falling sensations when going to bed that got so bad I couldn't sleep at all. Hope it works for you.

[Ashbe in reply to BirdlessBox]

I, having problems finding anything which helps. Gabapentin, and pregabalin affected my eyesight and balance. Seems anything which has a sedative effect on my brain does that. I also suffer from bilateral Ménière’s disease which likes to annoyingly get in the mix from time to time.

Never believe doctors who say it burns itself out. first diagnosed 1994. It can be quite debilitating but as it’s intermittent it’s not covered for support! It also causes low mood. I’m just dragging myself back out of a 4 week period where I almost gave up.

Can cope with PN ,spinal stenosis, osteoarthritis and Menieres but

Not when they all decide to flare up at one time.

This of course is wrong time of year too as at least in summer you can sit out on deck and chat to neighbours and passers by. In winter it’s a lonely miserable time.

[Parlay in reply to Ashbe]

I have never met any one else with Ménière’s disease. I have had it since I was 20 and about 5 years ago I wanted to end my life because of it. It had got so bad they wanted to inject gentamicin into my ear. That makes you lose balance and hearing altogether so I said no so they discharged me as they deemed me not willing to help myself. In the US they had an article that said Ménière’s is autoimmune so if you do autoimmune reversal protocol you can get in control. I really feel for you.

[Ashbe in reply to Parlay]

I actually had gentamicin injection and it gave me 5 years f freedom.

It didn’t affect my hearing or balance. As hearing was already poor.

When Menieres returned it was worse than ever. Went through 6 months f attacks every three days! I eventually opted for labyrinth to my as there was by then negligible hearing n right ear.

AgainI had 4 years grace. Travelled and thoroughly enjoyed life.

Then MD went bilateral and life is very trying. I have to be extremely careful about salt,caffeine intake and find cooking from scratch for myself is safer. Last time I was admitted to hospital I was appalled at menu choice. Had to get friend to raid my freezer, defrost my home maxes soups and bring it to me along with fresh fruit.

[Survivorette in reply to Parksy]

That gastritis is key. Can you get back to gastro? Gastro docs are pulling ahead on this forgotten disease . My gastro is a saint. Mayo Proceedings last year said maybe that pills science wasn’t all that.

[CW12 in reply to Parksy]

You probably won’t absorb much much of the oral b12. Contact the pernicious anemia society or go to their website and print out the guidelines and other leaflets. I did and it helped

[CW12 in reply to CW12]

Oh I see sleepybunny has an awesome response . Great links for you to use. Good luck!!!

[Sleepybunny]

Hi,

Have you thought about joining and talking to PAS (Pernicious Anaemia Society)?

Lots of useful info on their website but you will need to be a member to access some of it. PAS office may be closed over part of holiday period.

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....

If you have a PA diagnosis, B12 treatment should never be stopped and there are other causes of B12 deficiency that require lifelong treatment.

See PAS leaflets

"An Update for Medical Professionals: Diagnosis and Treatment "

"Treatment is for life "

pernicious-anaemia-society....

Blog posts from Martyn Hooper's PA blog about injections being replaced with oral tablets.

martynhooper.com/2016/08/02...

martynhooper.com/2017/03/22...

See Points 5 and 6 in next link.

b12deficiency.info/what-to-...

Under treatment could lead to SACD, sub acute combined degeneration of the spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of PAS articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Have a look at this link about writing letters to GP about b12 deficiency.

Point 6 is about GPs wanting to stop injections and replace with oral tablets.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Your local MP will hopefully be interested in your case.

UK MPs

members.parliament.uk

Blog post about what to do if B12 injections stopped.

b12deficiency.info/blog/201...

I've assumed you're in UK.

I suggest reading the following documents. You could put relevant extracts from them into a letter to GP.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

I wrote a detailed reply with lots of B12 links in another thread. See link below.

healthunlocked.com/pasoc/po...

Local Guidelines

Try to track down the local guidelines for treating B12 deficiency for your part of UK . Some of these are years out of date and do not match what is in BSH Cobalamin and Folate Guidelines.

If all else fails, some on the forum choose to self treat.

I am not medically trained.

Good luck

[Parlay in reply to Sleepybunny]

Thank you so much I will print off those and use them to argue my case. I’m so upset and angry right now. Because if their neglect in diagnosing me so late I can’t feel my hands or feet and just wearing clothes is so painful. Even at 8 weekly injections I’m struggling finding my words and my balance is awful. I’m so grateful for everyone’s help you are all amazing.

[Ryaan in reply to Parlay]

I just seen this reply from sleepy bunny, yes do that that’s your best chance.

The printouts.

Keep it about B12 treatment and not cofactors.

[Hidden in reply to Parlay]

Don’t know here you live. I too was stopped my B12 in Essex after over 30 years of having pernicious anemia.

Within a few days I started to feel really unwell and people started to worry about me.

Balance problems - eyes wouldn’t focus - extremely bad tingling throughout my whole body, not just the usual hands and feet. Severe aches and pains.

Saw a “trainee” young GP who sent me straight away for B12 injection.

Told I might have to go through this every time I need a B12.

It’s like banging your head against a brick wall.

Do hope you get more sympathy.

[CW12 in reply to Sleepybunny]

This is thoughtful and helpful for all of us! Thank you

[Twinklesthecat]

I’m so sorry you are in this position.

I thought I’d share that I’m experiencing this too. My b12 was stopped in July, so I’ve now gone 5 months without a jab, a jab that I was getting every 8 weeks.

I was originally diagnosed with b12 deficiency in 2011 and like you, had to fight to just be tested, and my b12 was 157. then I had to fight to get 8 weekly jabs because of neuropathy.

Now I have no treatment and in retesting b12 last week my levels were still normal (453). I have two choices... wait until my levels drop further so I can restart nhs treatment or buy injections myself and self treat.

You aren’t alone in this, sadly it seems to be a fairly regular occurrence.

[MoKayD]

I don't understand how they think this is a cost saving action. My doctor told me it costs him 5 cents for each shot. I walk in with my sleeve rolled up and it takes the nurse maybe 2 minutes to give me the shot. I say "Thank you, see you next month." and I'm out of there. How can this be considered an expensive process? It's just doesn't make sense. Doctors are happy to hand out opioids but are stingy with B12.

[Ryaan]

Not many doctors are willing to change their decision and they say we know best......they don’t like to be told hence the high number of people resorting to Self Injecting.

Saying that you can talk to the doctor and if he’s reasonable and not arrogant like most he might decide to “treat your symptoms” like he should be doing according to the NICE health guidelines, which is one injection every other day for neurological symptoms “until no further improvement” then he/she can cut down to one injection every 8 weeks or every 2 months.

You have to be well armed with research and paperwork with these facts.

But the fact is regardless of putting up a fight and the fact that you are actually right the doctors are just too arrogant in this matter when it comes to B12.

Sorry to disappoint you but I’m just stating the facts.

It all depends on what your doctor is like. It helps to take someone with you on your doctors appointment just to be there, they don’t need to say anything.

But.....do go for it, there’s always a chance they might agree.

Co factors are the easy part which you don’t need to mention to your doctor.

Ferritin and Folate and other things are easily obtained supplements to buy.

If your neurologist agrees and writes to your doctor that is best.

They understand more about B12 and proper treatment. If not then just take the self injecting route as it’s safe and easy unless you have needle phobia and can’t inject yourself.

Wish you the best outcome.

Most of us on here have been through the same problem with the doctor.

All the best, hope it all works out for you.

I understand how it feels.

[Hidden]

I agree with survivorette. My Gastroenterologist is way ahead of all my other doctors combine, about B12 def. and Pernicious Anemia. They really seem to understand it better. I would have GI go to bat for you.

[jillc39]

Very important tip to put all queries in writing. A phone call can be brushed aside or 'forgotten' but they do need to take notice of a paper trail. I have only just learnt this. If you have peripheral neuropathy (as I do) it is possible you need b12 more frequently. go for it.

[EvieBe]

I see a private GP who is also a functional doctor. She prescribes me my necessary B12 and I self inject as frequently as I need to. Perhaps this would be the way forward and would avoid all the stress of dealing with the NHS? I can give you her details if you would like..? Good luck.

[Parlay in reply to EvieBe]

Thank you EvieBe that would be great.

[EvieBe]

Hi Parlay/ParksyThe GP I saw is called Dr Sarah Davies (drsarahdavies.co.uk).

She's been a lifesaver for me and I've been able to totally bypass the NHS and all the stress associated with that.

The only drawback is that it does cost abit for an initial consultation, followed by lab work, then a further consultation to discuss the results and receive supplement recommendations (approx £1,200 all in all) but it's been money well spent after 20 years of increasing fatigue and weakness and depression. I only wish I had known about B12 deficiency and this compassionate doctor with all her knowledge sooner instead of going through all that suffering for years!

I pay £10 for a private prescription and approx £20 for 6 vials of B12 that I get from my local pharmacy. Dr Sarah can teach you how to self inject into the tummy subcutaneously. However my sister in a nurse and she has shown my husband how to give me an intramuscular injection in my arm as and when necessary.

Good luck!

[Parlay]

Thank you so much. I hope you are now healing and feeling better. To know what causes this in the first place would be good so instead of treating symptoms we cure the issue at grass roots level. Thank you again.