I've had my first B12 injection and feel more tired, restless sleeping and definitely irritable. Just to add to the mix I have Hashis. But this doesn't feel like that.
I've done a lot of reading on here and it seems there's a link with high ferritin + low folic acid + B12 injection = huge fatigue. I've had my high ferritin investigated and it seems 'benign' but not had folates done. And after the MMA test with Medichecks plus cost of venous blood, I'd rather save my pennies for now.
Does this seem a reasonable conclusion? I figure folic acid supplement is cheap and if I feel a result, great! I must add that the GP is not involved as I was told they don't investigate low B12 and they don't recognise the MMA test (Lothian)
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RexandBoone
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Unbelievable that your surgery does not investigate low B12 . Pernicious Anaemia is the most common reason for low B12 ., and P.A. is PERNICIOUS (i.e.DEADLY ) P,A. patients often feel worse when starting treatment. I assume as you are just starting , that you are receiving 6 injections over 2 weeks. , called loading doses?
.So you need to be patient.Best wishes for successful treatment .
Is it just not glamorous enough for them? Cheap (relatively) to fix! My B12 was right down at the low end and the GP said they can't investigate, even if it was below the low end. When I presented my private test result for MMA, was literally told they don't recognise it. Crazy. But I was offered a prescription for B12 tablets. Hey ho.
I'm getting 3 injections over 2 weeks (at a pharmacy) of 500ug Methylcobal. I'll stick with it of course, but I was indeed expecting to bounce off the walls 😀
Have you considered self-injecting? It’s what most people on this forum do . It is so cheap and convenient . ( Roughly £1.60 ,— ampoule , withdrawal needle , injecting needle , syringe , swabs included ) You can inject Intramuscularly or subcutaneously .
If they won't accept a private test, ok I get it, but just tell me or better still do your job that I've done for you! One concession the GP has made is to say she would facilitate me getting venous blood samples. I guess that's a win :/
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local B12 Deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines and comparing the info with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
"as I was told they don't investigate low B12"
That seems very strange to me and I suspect is a misunderstanding.
These may be the B12 deficiency guidelines covering your area but I suggest you check that.
Best bet is probably to submit a FOI request to your CCG asking for a copy of local B12 deficiency guidelines.
You can also submit a FOI request to your GP surgery asking for a copy of the local B12 deficiency guidelines that the surgery uses. This might irritate them but could be useful to see what they say in their response.
Two B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF hydroxocobalamin link for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Some health professionals have misconceptions (wrong ideas) about B12 deficiency.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Wow, what can I say Sleepybunny ? Thank-you do much for all the information which I'll take a look at. Really appreciate you giving me do much local avenues to pursue
May also be worth looking at B12 deficiency guidelines from other Health Boards in Scotland.
Some mention that their advice on B12 deficiency testing/diagnosis/treatment is nationally agreed so I suspect Health Boards in Scotland are moving towards standardisation.
Your sleeplessness and restlessness might be the result of taking the methyl type of B12. It did not agree with me. The two times I took it, it gave me insomnia, horrible anxiety, etc. This doesn't happen with my cobalamin shots.
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No folic acid without B12 first.
Pernicious Anaemia-Starting B12 injections and folic acid
Excess Folic Acid and Vitamin B12 Deficiency: Clinical Implications?
Not sure if low B12
too late to prove b12 deficiency?!
