What do I do now?

[Mavis15]

Ok. I live in the South but didn't get to see Carole doing her own injections on BBC south. Have had eight weekly injections since last November with an occasional six week one in between when felt lousy. Three weeks ago got back my numb and tingly fingers, very numb left leg and tingly feet. Not feeling that bad generally but very worried about permanent nerve damage. Had an injection last week and no improvement. Spoke to Martyn Hooper yesterday and he said I should be having injections every other day. Went to my GP today and he said he couldn't do this but I could have another injection tomorrow and be referred to a neurologist. NHS appointment would be probably six months wait. I do have private medical insurance from my husbands work. I am so scared of having permanent nerve damage and now think I should self inject. My husband is going to Germany next week and one of his German colleagues can buy some B12 for me. What should I get? Not sure what I need. I am able to give myself or get someone to do for me. Please advise .

[clivealive Forum Support]

Hi Mavis15 I'm not medically qualified but the fact that you are getting back some of the symptoms could almost suggest that previously damaged nerves are being repaired by the B12 injections you are having.

It is not unknown for patients to actually start to feel worse before they get better so please don't stress and worry too much as it can be a long process.

Do you know what your Folate level is as this is essential to process the B12?

Is your diagnosis P.A. or B12 Deficiency and if the latter do you know what caused it?

I wish you well.

[Mavis15 in reply to clivealive]

Thank you clive alive. X

[wedgewood]

You should ask your husband's colleague to get you ampoules of Hydroxocobalamin . I was in Germany recently and bought some.The chemist I went to only had ampoules of Cynocobalamin , but obtained the Hydroxo within 2 hours . They usually come in packs of 10 . I can't remember the exact cost . But it was about 8 Euro . You can always buy from German online chemists also. Syringes, needles, wipes and sharps disposal boxes can be obtained easily in UK at Amazon or many other medical suppliers .

10x VITAMIN B12 HYDROXOCOBALAMIN AMPULLEN or whatever quantity you require .

[Mavis15 in reply to wedgewood]

Thank you so much. That's just the info I needed? What strength are they?

[wedgewood]

I have bought 3 different makes in the past . They were always 1 mg strong , the same strength as at the surgery . But some come in 1 ml of saline and others on 2 ml . But always the same strength. Hevert come in 2ml and Rotexmedica in l ml . Make sure that you get HYDROXOCOBALAMIN! It is a bit more expensive than Cyno , but it's what is used in UK . Best wishes to you !

[Mavis15 in reply to wedgewood]

Hi Wedgewood

Thanks for all your advice. Guess what my husband has come home from Germany with Cyanocobalamin ampoules despite me emphasising I wanted Hydroxocobalamin. His intern had got them for him so can't complain. I had another injection on Tuesday at GPs and my neuro symptoms have improved quite a bit. GP won't give me any more yet. Do you think these are ok to give myself if I feel I need it. Have a neuro appt Monday week.

Many thanks

[wedgewood in reply to Mavis15]

I'm sure that they are fine for you . It's what used to be injected before Hydroxocobalamin was developed Its just one step further away on the absorbtion process . When clivealive was first treated for PA. many years ago , it was what the NHS used. I believe he still gets them . It's the most commonly used in the US A

So don't worry, it will do the job!

Best wishes

[Sleepybunny]

"Went to my GP today and he said he couldn't do this but I could have another injection tomorrow"

Did he explain why he couldn't do it?

When you were first diagnosed was the GP aware you had neuro symptoms? How many loading doses did you have?

See page 8 BCSH Cobalamin and Folate Guidelines for UK B12 recommended treatment. My understanding is that someone with with b12 deficiency with neurological symptoms should get loading injections every 2 days for as long as symptoms continue to improve. This could mean having loading injections for weeks even months.

I'm not sure how well B12 treatment works if a person does not receive the recommended amount of loading doses.

Inadequate treatment could lead to permanent neuro damage. Some people suffer spinal cord problems, think this happened to Martyn Hooper.

pernicious-anaemia-society....

HDA

A charity that offers free second opinions on treatment and diagnosis.

hdapatientcaretrust.com/

[Mavis15 in reply to Sleepybunny]

Thanks Sleepybunny for your reply. My GP said he couldn't do it as Vit B12 not licenced to be given so frequently and he doesn't think that by putting all that B12 in my system will make a difference. He doesn't want to miss another reason why I might have these neuro symptoms hence the neurologist referral. He's actually been quite accommodating up to now as wasn't going to give me the six loading doses last year until I explained that I needed them. Probably should have had more then! He also let me have an injection two weeks early in May! Will have extra one next week and get some from Germany. Can't see him changing his mind. Says neurologist appt.on NHS has six month wait. Have private med insurance from my husbands work so will see if I can use that. Will have to pay excess but don't mind when it's my health and future at stake. Although don't expect much from it as others on the forum don't seem to have had much help. Oh and yes GP did know I had neuro symptoms when Ihad loading doses. He is actually a very nice GP but one who finds it difficult to go against the "norm". He is not a Vitamin B12 specialist or neurologist he said yesterday just a GP.

[Gambit62 Administrator]

you can see the evening showing here until 18.45

bbc.co.uk/iplayer/episode/b... - about 6 min in

If I was you I would try going back to my GP again and explain that you have developed neurological symptoms and that the advice you have received from Martyn Hooper at the PAS was that you should receive loading doses again - this would be - per BCSH guidelines - 3 loading shots per week until your symptoms stop improving (review at 3 weeks), and then on to bi-monthly doses. This would be particularly true if you didn't have loading shots when you were first diagnosed,

You could also hope that your GP did see the piece on South Today.

[pitney in reply to Gambit62]

Thanks Gambit. it was still on there at 8.30 am this morning so I was able to watch it.

[Forest1000]

Hi Mavis15, I'm so angry and upset about this on your behalf. Did your GP say why he couldn't treat your neurological symptoms straight away? You didn't say, but if you haven't, print out the guidelines for treatment for PA from the website, and go back to your doctor. He is not following the guidelines. The fact that he's referring you to a neurologist means that he must have a strong suspicion that your symptoms are neurological. I'm pretty sure there's also info. on the website about the dangers of leaving neurological symptoms untreated for any length of time, leave alone 6 months! Print out that as well and take with you. 'Take a friend,' for support if you feel that would help. Yes, you can buy B12 and inject yourself, but you shouldn't have to. Good luck.

[Sleepybunny]

"Oh and yes GP did know I had neuro symptoms when Ihad loading doses"

"My GP said he couldn't do it as Vit B12 not licenced to be given so frequently"

I think he needs to read the BNF (British National Formulary ) chapter 9 section 1.2 and page 8 in the BCSH Cobalamin Guidelines. The BNF is what doctors use for advice on what drugs to prescribe for particular conditions. Your GP will almost certainly have a copy in their consulting room or online access to it. Its also possible to buy a copy your self.

bnf.org/

The BCSH Cobalamin and Folate Guidelines were prepared by "The British Committee for Standards in Haematology".

I don't understand why your GP said that B12 is not licenced to be given so frequently as I doubt the BNF or the BCSH would include info in their guidelines that was against a drug's/product's licence.

My understanding is that a GP is allowed to prescribe drugs off licence if in their professional judgement it is in their patients best interests to do so...see link below.

gov.uk/drug-safety-update/o...

Have you seen this link? It's about writing letters to Gps when unhappy with B12 treatment etc. the person who runs this website can be contacted by e-mail.

b12deficiency.info/b12-writ...

Unhappy with treatment?

england.nhs.uk/contact-us/c...

citizensadvice.org.uk/healt...

I am not a medic just a person who has struggled to get a diagnosis.

Have you read fbirder summary of mainly UK B12 documents. click on link to his profile page for link to summary or there is also a link in one of the pinned posts on this forum.

I hope you get the treatment you need from NHS but sadly some people have to resort to self treatment. I did but as an absolutely last resort when I had tried everything to get treatment from NHS.