Refused more b12: History repeating its... - Pernicious Anaemi...

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Refused more b12

29 Replies

History repeating its self.

Having pins and needles neurological symptoms, legs crawling etc etc.

Got one b12 injection last week after waiting over one year,

Anyway, they tried four times to take blood tests to no avail,

Now they refuse to give me anything until they can take blood. To prove I'm not diabetic, just taken sugar levels

5.7 not diabetic.

I use to get top up b12 from germany and still can't get them

I can't find the strength to fight doctors any longer.

Probably end up like mum crippled and on morphine.

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29 Replies
Nackapan profile image
Nackapan

I'm sorry to hear this. Over a year fits no treatment plan.??Bloods are a good idea but not b12 .

If you look through posts msmt have been buying b12 online.

Hope you get it sorted.

in reply toNackapan

Hi,B12 germany

I've tried and tried for the last few days, but it just fails

My partner said he will try and get them from a beauty

Salon that sells them three for £100.

RIP off Britain.

You have to laugh or you would go mad.

Perhaps we should all take to the streets with our

Walking sticks, wheelchairs and protest.

wedgewood profile image
wedgewood in reply to

You can buy B12 single use ampoules from some German online pharmacies . Try apohealth.de . You can get it in English .Select the American flag top right ! I Would do register. Needles and syringes from Medisave.co.U.K.

in reply towedgewood

Thanks will try this tomorrow, have all equipment just need ampoules.

Dr would not give me more as have to have blood test, they have tried 4 times to take blood but they

Cant find vein?.....

They will not give anymore b12 until they can rule out any other possible cause for numbness, nerve

Pain etc.

Does anybody get severe ear ache?

Everytime I move my head the pain is unbelievable, not even pain killers help.

Next attempt at blood tests next week

Drink plenty, hot water bottle on arm and crossed

Fingers.

Annielecurie profile image
Annielecurie in reply to

Please take recommenda from Wedgewood. After reading post earlier today I easily ordered online from site recommended. I think it cost me around £50 for 1ml ampoules of hydro. You are worth it! There is an option at the bottom of the screen to translate to English and I found the site really easy to navigate. Wishing you all the best.

wedgewood profile image
wedgewood in reply toAnnielecurie

Was it £50.00 for 100 ampoules —( 10 boxes of 10 ? )

Annielecurie profile image
Annielecurie in reply towedgewood

No, I've paid €65 for 10 boxes of 5 ampoules, so I've clearly overpaid.

wedgewood profile image
wedgewood in reply toAnnielecurie

I asked because you wrote that you had paid £50.00 for 100 ampoules originally . €65 is about £55.00 So i don’t think you have overpaid , especially if it includes shipping . 55 pence for one ampoule is really a good price . Prices vary from pharmacy to pharmacy , but they are always discounted at the online pharmacies . I bought some when i was in Germany from a high street pharmacy and they were considerably more expensive than online . Best wishes . 👍

Annielecurie profile image
Annielecurie in reply towedgewood

My maths is very poor Wedgewood so that's why I thought I'd been duped for a second there! It was a seamless process so now I should have a decent supply to see me through the months ahead.

wedgewood profile image
wedgewood in reply toAnnielecurie

I’m so glad that you have got a supply . It really worries me that there are difficulties in obtaining the B12 ampoules now since January 1st . I would be in a panic if I couldn’t get them . They make all the difference to my life . It is really crazy that we cant get them OTC here in U.K. . I’ve been left with foot problems, which I can keep in check if I get my B12 shot weekly .

wedgewood profile image
wedgewood in reply toAnnielecurie

Sorry- I didn’t notice that the boxes only had 5 ampoules . I’ve never seen boxes of 5 for Rotexmedica B12 depot ( Hydroxocobalamin) , They’ve always come in 10s . This make seems to be the most popular with forum members . In that case , yes ,they were expensive . What make were they , if you can remember ?

Annielecurie profile image
Annielecurie in reply towedgewood

It was the rotexmedica I ordered Wedgewood.

Hope you can see my order info, I'm not very technical.
wedgewood profile image
wedgewood in reply toAnnielecurie

I see now that you have bought 50 ampoules 5 packets of 10 at £10.40 a packet . . Buying 10 x 10 is much better value , £58 for 10 packets , but you probably don’t need that many . It’s a bit confusing that if you go on the site in English , prices are quoted in GBP , but when you pay, they are printed in Euros. So thats solved . Thanks for responding to my queries — I was mystified when you said that they were packets of 5 . I like Rotexmedica because it’s only 1ml to inject . Hevert is 2ml and more expensive . It’s Rotexmedica that sometimes is out of stock because it is popular !

Just this second received ampoules from bodfeld-apotheke.de

They ship by courier and charge €9.89 for that . They have not been supplying to U.K. since January 1st , but I managed to order last week. I am registered with them . 👍

Annielecurie profile image
Annielecurie in reply towedgewood

Thanks for that. I'm relieved I've bought packs of 10 as that's what I've bought previously. The sell by date is good on them so they won't go to waste. I've pasted a copy of your reply to my phone so I've got details of the other site. Apologies for hijacking original post but very grateful for advice received.

Annielecurie profile image
Annielecurie in reply towedgewood

Would you say bodfield was easier to navigate and better value for money than apohealth?

wedgewood profile image
wedgewood in reply toAnnielecurie

Bodfeld was the pharmacy I used all the time before January 1st , so I am used to the layout , so I find it easier . I would probably say the same about apohealth if I was familiar with it !

Annielecurie profile image
Annielecurie in reply towedgewood

Hi Wedgewood, my order was delivered yesterday. 5 boxesof 10 ampoules. Coincidentally, I found an old receipt last night and my previous orders have been packs of 10 for a similar price so I've well overpaid. Ah well, we live and learn.

wedgewood profile image
wedgewood in reply toAnnielecurie

Yes , you won’t do that again . But don’t grieve too much . Even at that price , it’s not too much to pay , ( but still very annoying ) when you think of the benefits ! Good luck !🍀💉

wedgewood profile image
wedgewood in reply to

Search for Rotexmedica b12 depot . These are Hydroxocobalamin ampoules They sell packets of 10:for about £10.00 and 100 ampoules — 10.x 10 packets for £58.00

in reply towedgewood

Well I ve been back on to website for b12 ampoules, still cant pay. Only got debit cardAnd it just rejects payment, more than enough

Cash to cover costs.... perhaps it's because I have Visa debit. I have no PayPal or Amazon account.

wedgewood profile image
wedgewood in reply to

They only seem to accept PayPal. What a nuisance . I like PayPal because you don’t have to give your details to every company you buy from .

Sleepybunny profile image
Sleepybunny

Hi,

Some links that might be helpful....

Unhappy with Treatment (UK info)?

1) Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

2) CAB NHS Complaints

citizensadvice.org.uk/healt...

3) May be worth talking to local MP /devolved representative if struggling to get adequate treatment.

members.parliament.uk/

News story about MP in Scotland who raised concerns about treatment of patients with PA

douglasross.org.uk/news/mor...

4) Some people have gone to press although this can sour GP/patient relationship.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

If you have a PA diagnosis or suspect you have PA, have you considered joining PAS?

PAS can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful articles that PAS members can print out.

Some can be accessed by non members.

pernicious-anaemia-society....

There is a PAS article "Treatment is for Life".

PAS membership

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

No face to face meetings during pandemic.

B12d.org sometimes has online Zoom meetings.

b12d.org/event

The person who runs B12 Deficiency Info website may be interested in your story.

b12deficiency.info/

Might be worth drawing GPs attention in any letter to the increased risk of permanent neurological damage if a patient is untreated or under treated.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Perhaps your GP would read this next article or the guidelines I've linked to below?

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BNF Hydroxycobalamin

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

NICE CKS

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

Local Guidelines

Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency.

If you have the time and energy, it might be worth tracking down the local guidelines on B12 deficiency for your area of UK and comparing them with BSH/BNF and NICE CKS links above.

Pandemic

If you think your treatment has been affected by the pandemic, have a look at the links below.

Blog posts from B12 Deficiency Info

b12deficiency.info/covid-19/

b12deficiency.info/blog/

PAS news items

pernicious-anaemia-society....

One of the PAS news items is about contacting NHSE if struggling to get treatment during pandemic and gives an email address for NHSE.

pernicious-anaemia-society....

I am not medically trained.

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Sunshine1932 profile image
Sunshine1932

I got some two weeks ago from apohealth. Easy to order and delivered within three days. Don't let the system determine your health. Eat good nutritious foods and self inject as frequent as YOU want or need.

It's a battle you don't need to fight with a GP, just take your life back into your own hands.

The doctors only ever dish out pharmaceutical drugs which are loaded with chemicals and they lower our vitamin and minerals.

Nature intended for us to eat nutritious food which in turn keeps us well and healthy.

I am a sugar addict and my health rapidly declines when I'm eating it.

Good luck and embrace this beautiful new day you have woken up too. ❤️

in reply toSunshine1932

Thanks everybody, got to charge laptop, then I will go on website and try again.

As for complaining about treatment, been there previously, medical records altered, mp involved his response NOT ANOTHER ONE. Got kicked out of surgery for complaining. Cant do that this time as I will have to travel over 10 miles and surgeries don't like taking people outside catchment area.

Already walking on thin ice.

Been given antibiotics for ear, got allergic reaction

After two drops........ cauliflower ear .

Like electric shocks in ear.

Rang surgery, putting up stronger pain killers.

Been here before a few years ago exactly the same thing

Eventually got b12 which resolved problem.

A vitamin that costs next to nothing.

It's also worth looking up b12 and ear problems,

Been having problems for 40 years, yet when I

Managed to get b12 in germany, injected once a month

Never ever had problems, didn't have to go to doctors

At all .

God bless you all, and hoping one day NICE (health organisation) will actually be nice to us.

in reply to

Ordered b12 Thursday night, just arrivedExpires 11/2023. Christmas come early.

When first diagnosed I spoke to a well connected

Doctor and talked over treatment etc.

He said to me

It's not what the doctors tell you that you have to worry about........ it's what they dont tell you!

Sleepybunny profile image
Sleepybunny

I hope you manage to get the treatment you need.

"mp involved his response NOT ANOTHER ONE"

That suggests there are others in your area suffering similar issues...is your MP doing anything about it?

in reply toSleepybunny

After giving him all the proof I received letter from himSaying that it was against the data protection act, etc

Mp useless as regarding b12.

I do believe there were heads rolling. Strangely three

Or four years later I had letter from nhs Birmingham

With a questionnaire rating the surgery I'm with now.

When I spoke with dr he asked if I had been diagnosed

With b12, I said yes 15 to 16 years ago. One has to

Question whether some notes from my old surgery

Have gone missing, on purpose.

Now have written five pages of of tests results etc.,

Sorry to say have no confidence in nhs, two years ago

Had doctor saying that I'd had liver transplant, funny

I haven't got scar or recollection of this.

Anyway on a positive, found someone with PayPal

B12 on it way.

in reply to

My youngest brother has just informed me he has now been diagnosed with b12 deficiency. I have been trying to get him to take b12 for several years. That's the fifth member of the family.

Cherylclaire profile image
CherylclaireForum Support in reply to

Like you said before, Hidden - in the old days, with a family GP who knew all of you and had time to think, this could well have been picked up earlier and made life a bit easier for the next generation. Easier for GPs too to feel confident in their diagnosis.

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