How soon do you get an improvement once you start receiving B12 injections?

[KatieG75147]

Hi all, I got diagnosed with B12 deficiency (absorbtion issue, not diet) this summer and from what I understand my level on diagnosis was quite low (58). I had my loading doses and saw some improvement, but plateaued below my better days after about 6 weeks. Around 2 weeks before my next injection I dipped really badly. I had that injection last week but haven't yet felt much improvement. I spoke to the Dr this week and she said that a) they can't check my B12 levels again until December as the recent injection means it will be high whatever, and b) because I'm now on the injections it can no longer be the B12 deficiency causing my symptoms. I just wondered how long people find it takes to feel better after the injections and if the advice from the Dr sounds right, or if anyone has had a similar experience?

[Nackapan]

Depends on what measurement used and if serum b12

58 is very low If 58pg/l (200-900) range in brackets.

it sounds as though you need zbl higher frequency of injections.

most need more than 2-3 monthly.

go by your symptoms not numbers as once on injections Testing b12 levels don't mean anything

hope you can get more

sounds like improvements have been made. No linear line in recovery. We all differ.

Early days so s good 👍 sign .

[KatieG75147 in reply to Nackapan]

Thank you, that's really helpful.

[Technoid]

"because I'm now on the injections it can no longer be the B12 deficiency causing my symptoms"

With respect to your GP this is a total misunderstanding of B12 deficiency. The problem is the damage to the body (and mind) that occurs with persistently low B12 levels. If the deficiency was mild and very short-lived, yes its possible for symptoms to quickly and even completely resolve with VERY prompt treatment. But your B12 level of 58 is one of the lowest I've ever heard of (unless this was an active B12 test?). It is suggestive of a severe deficiency and I would be amazed if recovery was swift unless the deficiency happened very quickly over a short space of time (weeks/months). but typically the deficiency has been slowly and subtly becoming more serious for many years.

Correcting B12 levels is the first step of getting the essential metabolic wheels back in motion to start to repair the damage. But its not magic - the damage may take weeks, months or years to heal and if the deficiency was prolonged some neurological damage may yet remain - nerves regrow at 1mm a DAY. It's a long journey. Getting your B12 levels elevated and keeping them there is essential. But this only ENABLES recovery ... it doesnt cure the symptoms instantly because the most serious symptoms are not coming directly from low levels of B12 in the blood but from the damage to the body, nerves etc that happened WHILE B12 was low. Settle in for the long haul, it will get better but dont expect magic overnight, thats only for ignorant GP's who skipped the B12 chapter in their trainings (was there one!?) 😒

B12 levels must remain very high (with dosage frequency depending on patient symptoms) thus it is counterproductive to test B12 after injections and gauge efficacy of treatment that way.

Unfortunately. since everyone's deficiency stage, severity and duration is different (and their overall health at time of diagnosis), its almost impossible to say exactly how long it will take until feeling better. Some people recover quickly right after loading doses, other go through an early treatment decline which could take from a month to 6,8 months in worst cases, I hope for you to have the quickest possible recovery and please make sure your injection frequency is adequate (every other day until no further improvement for neurological symptoms).

[KatieG75147 in reply to Technoid]

This is such a helpful reply, thank you Technoid. I'm not aware of my test being for active B12 (after learning about a lot of people's experiences, I'm so grateful I got a B12 test first go). Now I know about this disease, in hindsight I have had symptoms for a long time, but I just dismissed them or put them down to something else, so it makes perfect sense that it's going to take a while to get back to somewhere around normal. I just wish it was possible to have more active symptom monitoring, rather than arbitrary time frames of 6 loading doses then nothing for 12 weeks. I have started keeping a diary, but I'm not sure I'll get anyone to pay attention to it.

[Nackapan in reply to KatieG75147]

The Nice guidelines say 2-3 months . Your gp shoukd either put you back on every other day until no further improvement

or at least start 8 weekly if any neurological symptoms.

Healing from an absorbtion problem can take longer as more often missed.

A dietary deficiency is usually more obvious and hopefully treated sooner.

Any prompt treatment with B12 will have better outcomes.

Time frames of healing differ. .I'm 4 yesrs in and still making improvements

I was told initiallyall healing will be done in a year,and I'd be left with the damage at that point

Thank goodness that was wrongI ve had much more healing

Obviously if dietary needs are ignored or symptoms from any cause ignored by person or doctor and the body is starved of essential nutrients the symptoms are the same .

Starved of essential nutrients.

That's why I'm alarmed Gps do jot ask what you eat !!

Surely if you are not eating enough change diet or supplement immediately.

If you are eating a mixed diet and a low b12 is found an absorbtion problem should be assumed.

Treat immediately.

If b12 normal levels but nothing else evident and symptoms ate there

treat immediately.

monitor response to b12.

meanwhile investigate moreto rule out anything else going on.

I'm cross so much time was spent by medics not believing low b12 can give s9 many several symptoms. Not even investigated/ considered only cause !

my daughter had a lumbar puncture abd brain mri before a blood b12 level done !! Because she was young .

Hormonal changes affecting nutrition are grossly mis understood snd underestimated.

At any age but significantly in older people nd especially women .

As for your diary. Keep doing it.

I still do.

Only way I've recognised subtle improvements as so slow

In the same way slow symptoms crept up on me .

Ignored ,dismissed on 3 occasions by G.p.s I knew something wrong and went for help as brain not working properly

precise your notes for Gp.

5 worst symptoms.

compare to hos hoyou were how impedes your life

I've done symptoms charts

head/ migraine pain scores

little acknowledged not looked at

oh one specialist did.

I think as no idea and neded a chance to break eye contact!

I pointed out after his comment of thoroughness of presentation abd precise in chronological order that I was unable to do it !

Done for me as went alone.

No comment on any of it

Then started down the mental health route as so many symptoms could be psychological!!

I stamped that out as irritated. Did say I'd considered that after bring told so many times

knew if wasn't though.

Then the comment I waited 18m to hear

"The brain is very complex"

rings in my ears still.

So keep the notes, photos

hopefully will get looked at by medic who takes an interest of helpful to monitor your own progress.

That's when you need a student in the room with an open mind

I Hope you continue to make improvements

[MrsTuft in reply to Technoid]

this is such a brilliant and reassuring reply. I’m 5months into ED SI for neurological symptoms and so there is still hope?!

[Nackapan in reply to MrsTuft]

Definitely . As long as you keep up the b12.

Did you ever get a diagnosis

PA

or dietary ?

[MrsTuft in reply to Nackapan]

Current diagnosis is ‘functional B12D likely due to coeliac disease affecting ability to absorb in terminal ileum - or a missed diagnosis of PA as test not always specific / sensitive enough’.

[Nackapan in reply to MrsTuft]

Good tests are continuing.

I've never had a reason/ diagnosis.

Have had 2 brain MRI's and a brain CT to rule out things

just know its

an absorbtion problem.

As very first serum b12 level was very low B12 injections started

Get as many tests as you can .

meanwhile keep up your injections.

Hope it all goes well

keep us posted.



[ssiddi2]

For me, it took 2 months of weekly injections before I started feeling better. I actually felt worse throughout those two months and thought there was no light at the end of the tunnel. My suggestion is to keep injecting as often as you can, preferably weekly at least and don’t lose hope. You will one day wake up and will start feeling better and it will be life changing.

[Nana321]

KatieG75147 my diagnosis level was 58 too. Thought I was dying. After 18 Mos of listening to GP with little improvement, I began eod self injections. 6 Mos later, I am beginning to believe I may survive. This forum saved me. Hang in there and be kind to yourself.

[KatieG75147 in reply to Nana321]

So glad to hear you're seeing improvements. I'm finding this forum so reassuring to hear others' journeys. Thanks so much for your reply and I hope I manage to get to where you are.

[Litatamon]

I stared at my GP after loading doses and thought if she is wrong about not going every other day - until no further improvement - it is not her health. I immediately started self-injecting. Eighty percent of my symptoms went not long after that. And some were crazy intense for years on end.

And do know that some can come years in, the healing. I find that I sometimes burn myself on the stove now. Why? I am surmising for a long time I had little feeling in my fingertips & now two years in- oh shoot it is three- I do. And I have to catch up to the changes/healing. Or suffer the consequences, laughing.

All the best to you Katie.

[KatieG75147 in reply to Litatamon]

Thank you for sharing your experience Litatamon. I am having some more blood tests this week and then will discuss with the GP. I think I will discuss the potential for going back on to loading doses with her then and see what the outcome is. Good luck with your journey.

[Cherylclaire Forum Support]

Yes, it is worth keeping your own symptoms records.

Not always valued by professionals, but it is your choice whether and when you show these to GPs or consultants. Never mind. Nackapan is right - they will help you !

My improvements were very slow to start and once they did, gradual. Not always reliably linear or permanent. But also some improvements where I wasn't expecting any - in other words, long-term ignored stuff that I hadn't attributed to B12 deficiency.

And yes. some symptoms that I have now forgotten about but I am reminded of them when someone new mentions them in their posts. "Oh, yes, how funny - I had that once !"

One day, you will be able to look back on your records and see symptoms there that have disappeared, others that have reduced significantly, either in frequency, severity -or, hopefully, both.

So, some consultants might roll their eyes and think you are obsessive (hypochondriac) -but some will glean useful indicators there.* This might also give you information about how helpful they are going to prove to be !

And of course, especially useful to you if you have a really poor memory, word retrieval or cognitive issues, as you will be asked many questions you can't otherwise answer : "When did you firt notice....." "What came first: numbness in feet or ..." "Did anyone give you an MRI .." "When did you last have a blood test ?" - that sort of thing.

* They will be as eager/scathing about your GP's reports and notes: it's not personal. It's personality.

[KatieG75147 in reply to Cherylclaire]

Thank you Cherylclaire, really nice to have your perspective.

[Litatamon]

"Yes, it is worth keeping your own symptoms records"

This is great advice Katie. I really wish I had done this over the years. For me, not the doctors. My GP used to cut me off & tell me 'that has nothing to do with b12 deficiency". I would not back down and would tell her it absolutely was a documented b12 symptom and I had it for years and it disappeared with loading doses. She really only wanted to hear about fatigue. That became clear.

So for me I didn't bang my head against the wall anymore. But for her other patients - to recognize b12 deficiency in the future - I had my 30 plus symptoms put into my file.

But boy oh boy I wish I had done the records for me. I am three years out almost to the day of finally finding the issue and there is one symptom that still lingers but I know it has had moments of improving, but I have no clue of the what, when and how. I sit here wishing I had all of that time period documented so I could try to connect the dots.