My doctor put me in B12 injections. I was feeling very tired, hair falling out etc.
I got them for 5 days in a row then 2 weeks later then another 2 weeks. He just stopped them
no explanation. The nurse told me that’s you finished with your injections now.
I’m registering at a new practice because of a house move. I want to ask him if I can get the injections as I just left it and tried to get in with it.
It’s now literally affecting my life
I am extremely tired.
What’s your thoughts
Did anyone have to go private?
Lorraine
Written by
LorraineBav
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Im in Australia and we have 6 loading doses followed by 3 monthly injections after, I also was given a blood test for intrinsic factor to test for antibodies for pernicious anaemia, if you have these then you need injections for life, also a test for hypolari, which is a bug in stomach that stops absorption, this is treated with antibiotics , you need to know reason for low b12, may just be diet related, as was mine
Please read other replies on here on the subject. Ones from Sleepybunny and Foggyme will probably be the most informative although all the main contributors are excellent.
For information on self injecting see replies by Wedgwood and others.
(As we buy our supplies from Germany I should get on and order some ampoules before Brexit).
Go to their profiles by double clicking on their names and looking under the heading "replies".
I will post links below.
Come back to us if you need any further information and good luck!
You are entitled to have copies of your blood test results - no reason need be given. You can then monitor your own progress and check what has been missed ! If your B12 was low due to poor absorption then it would be a good idea to also test Folate - Ferritin - VitD. If Ferritin is low in the range then requesting a Full Iron Profile would be reasonable. Low Iron can be linked to hair loss and fatigue.
Also a good idea to rule out low thyroid with the correct testing - not just the TSH. Low thyroid can affect digestion/absorption and can be the cause of low nutrients.
I have Hashimotos and a B12 issue due to lots of gut surgery ....
I am in Scotland, my practice is i Fife. Your treatment patters does not follow NHS guidance. Yo should have been give one injection every two days for two weeks, 6 injections in total then an injection every two to three months if you have pernicious anaemia. If you have PA with neurological injections you should continue to have the injections every 2 days until no further improvement - as per the guidelines.
In my case I was tested for parietal cell antibodies (PCA) which is not done so often these days but my GP did it and I was also tested for intrinsic factor antibodies (IFAb). Both tests are not very reliable but they are specific meaning that if you test positive you definitely have PA. I was positive for both so I have PA.
Pulling in patients and pumping them full of vitamins falls short of the standard of care you are entitle to receive. You must be told what condition you have and how you are being treated. You should call your practice and ask. One you know what you have wrong with you, you can take it from there. You can have a deficiency of B12 due to insufficiency in the diet - or you may have PA. You need to know. Good luck in finding out. They may decide not to test any further but so long as they treat you as if you have PA rather than saying you are now replete then you should be OK - just monito your symptoms. It takes time to heal - I am 3 years in and still healing! That said I self inject regularly and my practice knows i do this (even if they are not happy - I don't especially care).
There are many other potential causes of b12 deficiency eg diet, coeliac disease, crohn's disease, IBS, fish tapeworm infection, damage to terminal ileum (part of gut where B12 is absorbed) some medicines/drugs, excess alcohol consumption etc
What's your diet like?
Do you eat plenty of b12 rich food? If yes to b12 rich diet then B12 deficiency less likely to be due to diet and more likely to be due to an absorption problem in gut.
CCGs/Health Boards/NHS hospital trusts will have their own local guidelines on treating/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with NICE CKS, BSH and BNF links above.
MPs and devolved representatives may be worth talking to if struggling to get treatment.
Useful B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link in this reply.
More B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents, useful blood tests and a few hints about dealing with unhelpful GPs.
It certainly doesn't sound like a programme that I've ever read about on here.One every day for 5 days, then once a fortnight twice... then nothing ? Harsh.
LorraineBav - re hair loss: Marz is right, this could also be low iron.
Ask for your blood test results.
My B12 was 196 ng/L -and the range started at 197 ng/L.
My ferritin and folate were both low enough to cause symptoms -but within range.
My vitamin D is now on prescription because a Dexascan (automatic due to a broken arm) showed osteoporosis of the spine.
If you have been diagnosed wit PA you should continue either monthly or 3 monthly! Ask your new Gp for blood to be taken to assess your needs! Mention you have on going problem since Cobalmin was stopped !
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