Still having symptoms 3 weeks post B12 loading injections

[Becks2468]

Hi, I'm new to this site and only recently found out I have PA.

My B12 was down to 135, I've been feeling rubbish for a while, low mood, low energy, breathlessness and memory problems.

I was given the 2 week course of 6 injections and my levels are now 2000

I've been told I need to go back every 3 months for an injection for the rest of my life, this news sent me in a spiral, when I look at all the symptoms I think my levels have been low for a long time - links to miscarriage - memory issues etc!!

So 3 weeks post my injections and I am having a few good days then a few bad days, my memory is still the same. When should I see a positive change please?

I spoke to my doctor today and she wanted to start me on anti-depressants which I refused, but I just want to feel normal again

Any advice is greatly appreciated... Thank you

[wedgewood]

First of all if I were you , I would get my injections increased to every 2 months . This is possible because of new NHS instructions of last year .

[Nackapan]

I needed to get more injections and didnt make 3 months.

I lasted 6 weeks and was very ill

I would go back sooner rather than later

With your list of symptoms and those returning.

Bnf guidelines say if neurological symptoms to carry on with every other day until no further improvement.

Then 2 monthly or whatever is agreed with your doctor.

Its early days .

Everyone told a quick fix.

For most it isnt .

I was also offered and still am offered antidepressants amongst other drugs.

Hopefully you will feel improvements soon

[Cherylclaire Forum Support]

I was also offered antidepressants many times rather than the more frequent injections that I really needed. This was after the loading injections stopped and while having to wait 3 months for the next injection. Many people simply cannot improve on a 3-month injection frequency. Is it likely that so many of us would happen to be depressed, as a separate issue, at exactly the same point in our treatment ?

Not to say some people don't have depression and B12 deficiency concurrently, but I just knew that I wasn't truly depressed, any more than I was truly elated, or truly angry etc. Mercurial mood swings can be a B12 deficiency symptom, one that is unpredictable and which can affect your partner, friends, family, work -and worst of all perhaps, one which can be very difficult to get a GP to recognise as a symptom at all.

You will feel normal again, but it will take a while. You are right- it takes a long time to get this deficient in the first place - and some symptoms seem to stick around for longer. It's also possible that you'll see, once you are on a more effective frequency, symptoms disappearing that you didn't even realise were symptoms ! So keep a daily record.

It might also initially help you (and your GP) to see when and where, in relation to your injections, you start to deteriorate.

Have you had a PA diagnosis, Becks ? Have you had folate, ferritin, vitamin D and thyroid levels tested? Worth checking as they can be low (or low-range) too.

If you do not have neurological symptoms, guidelines for treatment in UK for B12 deficiency are loading (6 injections usually) then 1 injection every 2-3 months.

If you have neurological symptoms , the treatment guidelines in UK would be to have injections every other day until no more improvement can be had. Then injections every 2-3 months.

Easy said, I know, and hard to fight for when so ill and unsure . There is some useful information in Pinned Posts - right-hand column next to your post above - when you feel ready.

Some of the arbitrary decisions made regarding treatment mean that it often seems to vary not just from practice to practice but from GP to GP within the same practice. Perhaps, if that was based entirely on individual patient observation and management of symptoms, that might be a very good thing. We are all different- there is a medical reason for this, but they have not yet found it. Current research is coming closer to an answer, but that won't yet help you, will it ?

My cousin seems to be doing very well on one injection every 6 weeks - so you have to have some admiration for the GP who found this to be her ideal regime, because you will not find it written down in any guidelines. Yet.

Hope you have a supportive GP. It really helps.

[Sleepybunny]

Hi,

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

If you have neurological symptoms, my understanding is that you should be on second treatment pattern. Memory problems are usually considered to be a neurological symptom.

Do you have any other neuro symptoms eg

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space)?

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

I wrote a very detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents/articles plus other B12 info.

healthunlocked.com/pasoc/po...

Hopefully there will be some useful info in it for you.