I have been given Hydroxocobalamin injections (loading dose) over Xmas.
I haven't noticed any difference in my health so far. I still have extreme fatigue, burning muscles, stooped posture and burning tongue.
How long does it take for the injections to work? My first injection was on 12 December 2022.
Did you have 6 injections, BrianTheElder?
How long do you think you were deficienct/did you first notice symptoms?
Any neurological problems, nerves or pins and needles? Brain fog?
I had 5 injections and then need one every 3 months. I first noticed the fatigue in August 2022. It hasn't improved since. I have some neuropathy anyway, with being a type 2 diabetic, but haven't noticed any increase. I also have a long history of depression, so some of those symptoms would be difficult to spot.
I only ask those questions in case you need to ask for or get hold of more injections. Neurological complaints would certainly warrant a request for ongoing, every other day injections. But like you say, the type diabetes may blur the lines, as with the mental health in the past.
Do you have a PA diagnosis? You may want to try other ways to get B12, like a sublingual supplement. Many people with PA don't absorb sublingual doses but it could be worth seeing if they help you.
I would otherwise go back to the GP to explain that you haven't improved in a month and can they bring your next injection forward.
For many people, self injection helps them get through it. It's obviously a big step to take but it can make a difference to recovery.
My diagnosis was very confused, with one doctor prescribing my loading dose and another the 3=monthly dose. Neither of them gave me any info, apart from B12 deficiency, no advice. Contacting my GP is not easy, I have to call reception to maka an appointment for a doctor to call me, usually in about 10 days' time. I am not very good with phone calls, so they easily fob me off.
Its extremely hard at the moment. But I would out in the call now just so its there. In 10 days you will still feel this way and they should know that you are not improving. You can ask to speak with either Doctor, which may get you a chat with the first one available.
Self injection is another option. Take some time to review how it works, see Wedgewoods posts and profile. You can order supplies from Germany and inject once a week to start. You may find it starts to transform how you feel. In the meantime, keep pushing the Doctors to at least bring the 3-monthly dose forward.
I agree with others here that probably your best option is to self inject. If you are taking Metformin for diabetes 2, this will be depleting your B12:
pulsetoday.co.uk/news/clini...
scholarlycommons.henryford....
My understanding from the BMJ research article and UKNEQAS is that you should be treated with B12 injections every other day until no further improvement.
…………..
I found it’s easier put any concerns in writing to the surgery for the record and to ensure a response.
Re depression, this often responds to keeping vitamin D (actually a hormone) levels higher. Gareth Davies, PhD is a top researcher, who takes 30,000 iu a day! He is also one of 200 Professors, PhD, scientists and doctors who issued a statement recommending 4,000 i.u. a day to boost immunity, etc. during the pandemic.
……………
BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes) onlinelibrary.wiley.com/doi...
British Standards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency
UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections - even if B12 is within normal limits).
I think I should at least give the loading dose a chance to work, hence my original question. When and if I feel any benefit, I will be able to go back to the GP with some facts. Thanks for the advice.
This is a difficult one ' how long is a piece of string' ? We are all different and it depends on how long you have had the deficiency.
For you my friend it is still very early days . If your now getting 3 monthly injections you could possibly need them more frequent.
I get mine 2 monthly but still having symptoms I decided to take matters into my own hands and self inject. Even after two and a half years I still get the burning and tingling in my lower limbs but it's not as vicious as it was.
Try and stay positive and keep the B12 going in.
Thank you for your advice, Jillymo and best wishes.
I woyjd at least get them 2 monthly. In the Gps guidelines .
I got my mums changed to 2 monthly.
She never thinks they do much.
I notice the difference.
She is much more 'on the ball'
Clearer speech.
Less irritable.
Less achy .
No magic cure but certainly much much netter on them.
She's 93 .
Her lines were blurred too.
Shed been taking floradix . Still does .
2 monthly b12 injections 💉 worth pushing for and shoukd be easy to prescribe for your Gp.
Glad to hear about your Mum.
Great that you started! How long it takes to feel better depends on your B12-values and your body really... Loading dose here in the Netherlands is 10 injections over 5 weeks, which made me feel slightly better. I needed way longer, I had almost 9 months of 2 jabs a week (self-administered, to avoid the hassle of going to the clinic every time, but prescribed by the doctor) over which I gradually felt better and better, until I felt good enough to taper down slowly. At the moment I am on 1 jab every 3-5 weeks - my tinnitus tells me when it's time 
Hope this helps, whishing you a steady recovery!
Sounds like they really look after you in the Netherlands!
I hope the UK is watching 🙄
My test result for B12 showed "< 148 ng/L", which is presumably below the limit of the testing laboratory equipment. My Haemoglobin estimation was 124 g/L, however, I have always been anaemic. I was first diagnosed as iron-deficiency anaemic when I was 10 and my blood results are always low. The GP just says, "it's normal for you".
thanks for your help.
Your folate should've been tested at the same time.Vit D and iron status.
I imagine you are on a maintenence iron supplement with your history.
I take a A-Z broad spectrum multivitamin.
We all absorb less from our food as we age .
It's common with b12 deficiency to be low in folate and iron and vit D .
Not everyone.
Useful to kerp a Copy of your blood results .
I did get all the blood tests, and as usual, quite a few were abnormal or borderline. I have all my records available via Patient Access app.
In addition to the info given by others,
you should get your folate, iron tested as well.
Your b12 level is LOW
I was 190.
not everyone experiences symptoms, but it sounds like you are.
once I was diagnosed and educated. I realized my issue started 4 years prior to me feeling extreme exhaustion.
It all started with brain fog, then down the road back pain, then down the road sciatica with numbness in my hand and foot. The brain fog was so bad I couldn't derive words nor comprehend or retain basic instructions in conversations with people. I couldn't keep more than one thing in my memory. I could only walk a mile yet I have always been very active (not athletic but active). No amount of sleep or rest resolved the fatigue or any symptoms.
Once I got the diagnosis I was told I didn't need frequent injections.
Don't let any one tell you to space them out. Most medical practitioners do not understand that the injections need to be frequent and in many cases continued for life. Some long timers have been able to space them out but for now, focus on the short term.
Now, we get b12 from meat. If you are vegan/vegetarian, then injections will get your b12 stores in the liver topped off and you can continue to maintain that healthy level with oral b12. Also as mentioned by others, metformin can deplete it.
In my case, I'm a voracious meat eater so this tells me that I just flat out don't process b12 orally at any oral dose. Believe me I tried.
B12 is harmless unless you have 1 of 2 issues with either your kidney or liver. If your liver and kidney function has been tested and is normal, B12 is not toxic.
For me, after 2 years, I still do daily injections (cyanocobalomin) , hydroxo can be done less frequently as in every other day (EOD) . If I space them out, my symptoms come back.
Unless you huff nitrous oxide daily, it takes ~ 4 years for b12 stores in the liver to deplete. Thus your symptoms won't go away over night. It took me a year to get some sense of normalcy. This will be different if you were just not eating any meat. it might be quicker.
If you don't treat the symptoms, they may become permanent.
Sleepybunny has listed many good references. If you feel daunted by them, start but don't stop with this one:
ncbi.nlm.nih.gov/pmc/articl...
Table 1 there lists all the misconceptions which most if not all of us still face when trying to get help in the medical community. I have yet to have a doctor understand this entirely. That being said, you are in the right spot! PAS forum is amazing. I donate at least annually to PAS because this has saved me.
The injections took me from bed ridden to hiking mountains but far from marathons. I'm always improving and still have some struggles, but I'm so happy with my progress. There is hope.
Also as Nackapan and others mentioned, get your folate and vit d tested. These things cause fatigue. Anemia can be caused by iron, folate, b12 (and yes..... zinc toxicity by taking too much zinc over a long period). If you don't take zinc, forget about zinc. focus on the b12, iron and folate.
If you don't process folate, you won't process b12. So it's important to get tested. And yes, none of the docs knew this..or if they did, they forgot that it was involved in the metabolism of b12. I learned this from this forum and educated the docs.
I gave up trying to understand all there is to know about b12 metabolism as it is SO complex. Focus on the things we have all recommended here. Take one step at a time and be patient with yourself and. your progress.
The iron and folate were OK, thanks.
Hi,
Burning sensations would usually count as neurological symptoms and can be associated with neuropathy.
Do you have other neuro symptoms now or did you have any before treatment started?
See lists below.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
I suspect you might need B12 injections more often.
It took me many weeks even months of very regular injections before I started to really improve but then I'd been left untreated for years.
Might be worth keeping a symptoms diary. Maybe pick up to ten symptoms and score their severity each day or weekly if daily is too much.
It could be useful evidence to show GP or a specialists of improvement or deterioration in symptoms.
If symptoms start to return , get worse or new symptoms appear before next B12 injection, that could mean you need them more often.
I suspect many UK patients with B12 deficiency don't get enough loading doses.
Link about UK treatment for B12 deficiency. Also mentions when patients should be referred to specialists.
cks.nice.org.uk/topics/anae...
"I had 5 injections"
When I read this I wondered if you're in Gloucestershire which has a poor reputation on this forum for how B12 deficiency is managed.
Read blog post below if you're in Gloucestershire.
b12deficiency.info/gloucest...
If you're not in Gloucestershire, I recommend you find out what's in the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms present.
Link to thread I started about Patient Safety, has useful links for those who've had difficult health experiences.
healthunlocked.com/pasoc/po...
"stooped posture "
You mention stooped posture. What does the GP think is the cause?
In severe cases, B12 deficiency may lead to spinal cord damage. It's possible that your GP may not know this.
PAS have an article about SACD, sub acute combined degeneration of the spinal cord if you or your GP wants to know more about this.
pernicious-anaemia-society....
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I'm not medically trained.
Thanks for all that info, Sleepybunny .
I will read it when I have more time.
Did you also have your Folate level checked with a blood test?Was that also low or deficient?
Yes, my Serum folate was 4.8 ug/L, within the normal range of 3.0 - 20.5, but down on my usual reading.
Are you taking an oral supplement for that as well?
No, all I take is D3 and K2.
Taking the folate supplement would probably be helpful then , deal with both issues at once.
A result of 4.8 ug/L is only just within range.
Do you eat plenty of folate rich foods eg green leafy veg, beans, oranges, peas, chicken, wholegrains etc?
If your diet is folate rich but your folate results are only just within range that could mean there is an absorption issue in gut.
Many on here have folate, iron and Vitamin D deficiencies as well as B12.
Have you got results for ferritin and other iron tests?
labtestsonline.org.uk/tests...
A full blood count (FBC) might also be useful.
Have you considered taking a folate supplement with the RDA (Recommended Daily Amount) in it? Maybe worth discussing this with GP, local pharmacist may also be useful to talk to.
It is possible for people to show symptoms of folate deficiency with an in range serum folate result.
Guidelines below (UK) suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
If you've been tested in past and had a negative result, check guidelines below to see if your doctors followed the recommended diagnostic process, some don't....
People who have coeliac disease may get a negative result if
1) they have IgA deficiency
2) they were not eating enough gluten prior to blood being tested
Did your GP test you for PA (Pernicious Anaemia)?
Testing for PA
pernicious-anaemia-society....
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society.org
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Give it time. I feel as if I'm just beginning to stabilise after a year and, in order to achieve that, have had to find supplementary sources from private injections and, in the last month, through self-injection from B12 supplied from Germany. It is, I've discovered, a well-trodden path. It is an exploration to find how much you'll need from your symptoms and how you feel. Depending on stress levels, I'm anticipating injections, one way or another, every two weeks. Some of us need less, some more. You will find out.
Thanks, but I am waiting to see how I get on before starting a course of action.
P***ed off with it
How long is long enough
How long?
Diagnosed with b12 deficiency 80pg/ml how long will it take to feel better? 
