Although my GP is more helpful than most, I'm having huge trouble with getting a referral for my neurological symptoms. Bear in mind my local hospital is a world- renowned teaching hospital...
• The haematologist says he doesn't know why I was referred to him and cancelled my appointment.
• I emailed a neurologist, who said I should see a haematologist.
• I got them to speak to each other and they agreed I should see a neurologist.
• My GP referred me to the neurologist. Minimum waiting time 115 days for an urgent referral, but only once they contact me. They haven't.
• The neurologist says actually he can't help and I should see a metabolic medicine specialist.
No one has seen me yet.
My neurological symptoms seen to come back worse after each set of loading injections, starting within two weeks of having 9 injections. Neither my GP not the haematologist not the neurologist are prepared to follow the guidelines stating that injections should be given every two days until there is no further improvement , even though I have pointed these out to them. They all state a concern that too much B12 could be harmful, although all claim they are 'not an expert', and although I have said that no one has come up with any evidence for this, ever.
So who IS a bloody expert ?
Only people like the PAS and B12deficiency.org and the doctors consider then to be ignorant quacks.
I am now willing to buy B12 injections. Goldpharma seems good but I need advice and a practical demonstration on how to do the whole procedure and what other stuff I need to get (syringes etc). I seem to recall that there is an organisation that will supply injections as needed. I am happy to buy the stuff but I wondered if this organisation could help here..? I am in the south-east, commutable to London. Can anyone advise please?
Thanks.
Written by
oozlumbird
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Most MPs have a list of dates on their websites when they hold advice sessions. MPs can be helpful in getting answers from officials when members of the public struggle.
Have you tried contacting your local CCG (Clinical Commisioning group) or equivalent and seeing if your area is supposed to be using the BCSH Cobalamin and Folate Guidelines?
Well, the British Committe on Standards in Haematology are the UK's biggest brains in the field. So their advice - bcshguidelines.com/document... - should be worth listening to...
"Summary of key recommendations
The clinical picture is the most important factor in assessing the significance of
test results assessing cobalamin status since there is no ‘gold standard’ test to
define deficiency.
Serum cobalamin remains the first line test currently, with additional second line plasma methylmalonic acid to help clarify uncertainties of underlying biochemical/functional deficiencies. Serum holotranscobalamin has the
potential as a first line test, but an indeterminate ‘grey area’ may still exist. Plasma homocysteine may be helpful as a second line test, but is less specific than methylmalonic acid. The availability of these second-line tests is currently limited.
In the presence of discordance between the test result and strong clinical
features of deficiency, treatment should not be delayed to avoid neurological
impairment.
Treatment of cobalamin deficiency is recommended in line with the British
National Formulary. "
And there's an article in the British Medical Journal (which is the premier journal for UK docs) that has lots of intersting advice - healthunlocked.com/api/redi... -
"Box 4 Who to refer for specialist care23
Referrals to haematologist
• If diagnosis is uncertain or unclear
• If the cause of B12 deficiency is unclear
• If response to treatment is inadequate
• If the patient is pregnant or neurological symptoms are present, including cognitive impairment
• If the suspected cause is haematological malignancy or another blood disorder
• If the mean cell volume is persistently >105 fL"
As for the belief that too much B12 can be harmful.... B12 is used to treat cyanide poisoning. The normal dose if 5g as in IV infusion, repeated if necessary. That's 10,000 times what you're getting as an injection. aop.sagepub.com/content/42/... and
Thank you so much. This must have taken you ages! The trouble is , it's all a nonsense when you ARE referred to a specialist as per the guidelines, and they have no idea what they're meant to do with you! I need something that specifically says that there is no time limit on frequent injections while your symptoms are improving. The PAS say for some people this can take as much as a year.
What's currently there is apparently not sufficient for my GP, who has imposed a limit of nine injections rather than six, then waits for me to crash into a state of collapse within five weeks before agreeing to a few more. This is no way to live.
Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
I have just bought some ampoules from versandapo.de as I know other people have sourced supplies from them. If you open the website in Google Chrome it will offer to automatically translate everything to English for you. Once they arrive and I try them I can let you know how I got on.
Syringes, needles and sharps boxes are readily available online.
To pay I set up a PayPal account (very easy and almost all automatic) and it sorted the £Sterling to € exchange rate and everything.
I watched videos of B12 injections on YouTube (lots of vegans do them) and although a nurse watched me do my first one I felt fully prepared. Self injecting is fine - the worst bit by far is the idea of it. I know lots of people who inject animals and originally had planned to get them to inject me but I'd much rather do it myself than get them or nurses to do it now!!!
If you want to be shown how to handle the ampoules, syringes and needles it might be worth asking a vet to show you?
I got some of the information and help from the Facebook group
I'm not sure if there was any methyl on that site.... I was only looking for hydroxocobalamin. I believe most sites will reply to email questions about their products.
As everyone is different it isn't really possible for me to give recommendations - just work out what you might need based on your experience so far.
Join this group on Facebook - the Pernicious Anaemia and B12 deficiency group. Over 9000 members now, a closed group. There is details in pinned post on where and how to buy the goods. Also, there is a list of people who are willing to help with first self injection, as long as you have had them before, which you have. Just ask.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help with Self Injecting US 
Would going to an endocrinologist be helpful?
Frustrating!
