There have been references on here of the possibility of having B12 injections every other day when neurological symptoms existing (or persist) by can someone point me at a formal UK NHS or NICE source for this please?
My neurologist has suggested monthly injections but my GP is still seeking advice and guidance on this from other sources, notably haematology, before going ahead with anything other than the ‘standard’ 3 monthly injection that I’m current on. I’d like to show my GP that more regular injections are possible and authorised in certain circumstances.
The only reference I’ve been able to find so far is in a NICE consultation from 2021.
Thanks in anticipation.
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Pa234aw
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Sorry, only a quick reply. It is from the British National Formulary which is a Health Professionals’ Medicines reference book/online tool. Here’s the link :-
just get your own supplies. Waiting around for docs just allows the b12 to depleat more. Don't tell the docs you are doing it or they flip. Then keep searching for a doc who gets it.
It's ok to keep researching to rule out other things but I learned that it is crutial to start injections and not try to space them out. If a doc tells you you need to stop due to a high level serum b12. Ignore them. Yes it's high but that is normal, expected and not a problem.
If you have had a liver function and kidney function test that were normal, then your liver and kidneys are healthy which means your body can process any amount of b12 and it will not become toxic neither acutely nor chronically.
There are medical journals to back this. They are hard to find but believe me I found them. I also had my brother who is an ENT tell me the exact same thing. He is the exception though, all but one other doctor mistakenly assumed b12 is toxic and told me to stop. I ignored them because I had read the journals to alleviate my concerns and back my brothers recommendation.
If your kidneys and liver are healthy, no amount of b12 will EVER cause liver or kidney function issues!. It's only when you have a preexisting problem with kidney or liver that b12 is dangerous. Example, friend who was extreme alcoholic, cooked their liver from the excessive alcohol. I mean beyond excessive. Alcohol prevents absorption of vitamins because the liver processes the alcohol and just passes nutrients through. So he was also severely b12 deficient; however the doc could only give him a few injections because his liver function was already a problem from the alcohol. I don't judge the alcohol use, just pointing out the case of a preexisting liver issue causing a potential b12 toxicity. But again, that's only because of the preexisting issue.
I researched the hell out of this because I didn't want to end up damaging anything.
I was in your shoes. B12of 190. Showering would exhaust me. Couldn't go to the grocery store. Finally stopped listen to the docs and listened to my body and stuck with daily injections. It took two years to start feeling somewhat normal.
Just do it! You don't have time to wait. The damage can be permanent.
let me add that it is NO use for them to test your b12 level after your initial injection. this is because the b12 ends up in the blood stream and now the test is skewed because it is simply testing what is in your blood stream; but that doesn't reflect what your body is absorbing and there is NO test for that.
Thus the only way to determine the frequency and need for b12 is through clinical results. Clinical results basically means using a heuristic approach in that you try something and see what results you get w/o any tests. it's the ONLY way!!!
I tried researching other tests as I wanted the problem on the books for the doctors to start recognizing my issue. Forget that until you get feeling better. you will get overwhelmed. Just simplify life as much as possible! down to the bare and I mean bare min. I have a very demanding career and fortunately was able to fake it until I got better. but that is what drove me to get better because i knew that no one pays my bills, I had to save my career.
You are in the perfect forum. And PAS is amazing.
Please donate to PAS as they are the reason this forum exists and they do so much for all of us around the world. This forum literally saved my life and my career through filling in the gaps of knowlege I was searching for!
So you are on the right path. Don't waste time.
Take multivitamin in addition to this! Once I got half normal from injections, I found supplementing other b vitamines helped but just for now take an every day b multivitamine orally. then once you get more energy reach out here for suggestions on other b vitamines to supplement with. Give things about a year before trying to add new things otherwise it overwhelms or adds confusion.
Again, it doesn't hurt to rule other things out like iron deficiency, thyroid, folate deficiency, vit d (big one too), liver and kidney function (just rule it out once and then you are good). but if you have done those things, just wait for a year or so before diving in deeper. However, it never hurts to ask questions here. people have great feedback.
It really is a case or listening to YOUR body, not mine, not B12life’s. Your symptoms are yours.
Many of us have other autoimmune diseases so it gets a bit complicated. Other factors which can influence treatment is age, length of deficiency and severity (please note this is not the number on the screen in mg/L) but neurological physical examinations like :-
1) Testing reflexes.
2) The ability to walk heel to toe.
3) Standing feet together with hands out-stretched (it is called the Romberg test).
4) Placing your forefinger on your own nose and following a clinician’s finger with your eyes . Then being able to touch your forefinger to their held out forefinger. You touch your nose again. They move their finger again and you touch or try to touch their forefinger again.
People with P.A./B12 D can fail these tests and that usually dictates their own personal requirements for Hydroxycobalamin/cyanocobalamin/methylcobalamin.
But in my case I have had to SI daily. My b12 deficiency was officially diagnosed in Dec 2020. After 6 months I realized any spacing out just resulted in set backs.
Understand that b12 is stored in the liver. It takes 4 years to deplete. B12 comes from meat so if I stop eating meat, then 4 years later I would end up very low, say 190.
However in my case I eat a lot of meat, so my body just somehow stopped processing the b12 taken in orally. I tried high dosing oral b12, but it didn't help. For some it does esp if the cause of b12 is just diet.
There are so many parts of the body involved in processing b12 and it's complicated. No tests within reach to really nail down the exact reason but even then the fix is injections.
Once you get feeling better you can research the why, but for now that won't help.
The only easy thing that would help is folate. But only if you are folate deficient. Which I am not nor never was. Folate is one of several things required to process b12. So that's an easy fix. But since that wasn't my issue there really aren't tests to identify other causes that would result in a change in treatment. Hopefully one day someone will unlock that puzzle. Until then, best thing to do is make sure you are not folate deficient (blood test). Otherwise your pre initial infection b12 result was very low. Which tells me at a minimum you need daily injections until the symptoms resolve.
Some people have been able to space them out after some time. Every one is differ but for me and several others if I space out my injections, the symptoms come back. Basically in a week to two.
Stay the course do the injections and then in some time you can try spacing them but the best way to heal is get your b12 levels up and keep them up.
B12 is responsible for cell generation. Our bodies regenerate cells every 120 days.
It took 4 years to deplete your liver stores. It will take years to get to normal. It will depend on your situation.
I used to worry about having to inject for the rest of my life but now that I feel better I'm so happy that I have such an easy solution. Trust that you will get better, esp if all you have is the b12 deficiency. It may not seem like there is any hope because you feel like death but there is and you will get better. Or at least solve the b12 issue so you can find and fix any others!
all of us know how real and hard this is. Hang in there. Keep asking questions or just ask for moral support. We are here
I know what’s causing my PA, I have autoimmune atrophic gastritis which was detected by an endoscopy a few weeks ago. This destroyed my cells that absorb B12. Have you been tested for that? I also have hypothyroidism, so the autoimmune diseases are piling up. I see a GI on Thursday, so hopefully I’ll learn something.
B12 and Thyroid issues very commonly occur together. I don't have any thyroid issues yet that I know of.
I was tested for atrophic gastritis.
Again if your b11 is low you will feel like hell. So at least work on that problem by injections daily. It will take about a year as your body takes time to heal.
And you can also work on the thyroid issue. Many people here as well as the thyroid forum can give tips on that aspect. But my main point in b12 is don't let anyone tell you to hold off or space out your injections. Do what works for you! That's what many of us have had to do and it workers. There is hope!
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