What level is normal after B12 injections

[NeverSayDi]

First post after being diagnosed with very low B12 (67). I am in the UK and had the course of six injections within two weeks 12 weeks ago. My level of B12 has just been tested and is 360 but I have no idea whether this would be normal at this stage? I am debating whether to have another injection or to try oral supplements after having side effects from the jabs. I know the injection is better absorbed but wonder if the injections are just too much at once for my 5ft 1in, 8stone frame and that caused the side effects? GP doesn't think pernicious anaemia but I have been vegetarian for nearly 40 of my 70 years. Thanks in advance!

[Nackapan]

Level usually 1000and above after loading doses

I only had it done as folate wanted snd b12 tested at the same time

Symptoms often get worse before improvements.

Mine did

I'm assuming a serum b12 test ?

Useful to put lab result .

I.e 87 pg/mL (180-900) in range on brackets on the right

Labs differ

[NeverSayDi in reply to Nackapan]

Thank you for your reply and advice. These are the results from a test yesterday which is 12 weeks since my last B12 injection:

Serum vitamin B12 level 360 ng/L [150.0 – 1000.0]

Serum folate level 12.7 ug/L [2.0 - 18.8]

Deficiency discovered incidentally after an admission to A&E in August. No symptoms before and level was 67ng/L [150.0 – 1000.0]

[Nackapan in reply to NeverSayDi]

Goodness . A good call by A and E .I went to A and E . Brain CT scan but b12 not tested or suspected.

No symptoms??

[NeverSayDi in reply to Nackapan]

No symptoms before. I had had a CT scan after a massive vice-grip headache alonside an episode of global transient amnesia which made me appear confused though I wasn't. Very strange experience but no long term consequences they say. Headache never explained though.

[Litatamon in reply to NeverSayDi]

Hi,

I was diagnosed at 103 &

my level after loading doses was 440, so that was right after the last injection - if after 12 weeks it would have obviously been much lower.

I now self-inject and try to educate doctors not to check levels (no need with absorption issue - does not tell a thing but if diet only okay to check.) When they have I have been >1200 (meaning who knows at upper end )and around 920.

When you say you had no symptoms at 67, I do wonder if you know that there are a myriad of symptoms from head to toe, and some of them are strange & not always worthy of every day type notice.

[NeverSayDi in reply to Litatamon]

One thing this forum has already taught me is that there is a lot to learn about this condition! Further to your other question, yes it is hydroxycobalamin - the red stuff.

[Nackapan in reply to NeverSayDi]

I also had a brain CT then brain mris With migraines and all sorts of head pain .

I needed regular b12 .

Nothing else found to date to treat .

It takes time .

Accept every test offered to rule out anything else

[NeverSayDi in reply to Nackapan]

It sounds feasible that my head pain might have been my body protesting at the low level. I will certainly pursue other tests as and when offered. Thank you!

[Sleepybunny in reply to NeverSayDi]

B12 deficiency can cause headaches and many neurological/neuropsychiatric symptoms.

stichtingb12tekort.nl/engli...

Epileptic symptoms can also be associated with B12 deficiency.

Search online for "B12 deficiency epilepsy" if interested.

[charks]

360 is still very low. Most of us on this forum have levels over 2000. B12 is non toxic and doesn't usually cause side effects. What are the side effects you are experiencing?

[NeverSayDi in reply to charks]

Thank you for your reply. I had expected the level to be higher after the six injections, which were completed 12 weeks ago. Test was done yesterday. As explained above I didn't have side effects before, only after! These were persistent low grade headache, light-headedness and palpitations, which began after the 3rd injection. I first had palpitations just over a year ago but they stopped in February. Am still under cardiologist and he doesn't think they are to do with deficiency or a side effect of the injections. I don't have a haemaglobin problem. The side effects have all but disappeared now.

[charks in reply to NeverSayDi]

When you first take B12 you can have a 'rush' of energy which makes you feel hyper. I did. It was very similar to taking amphetamines. I think this is why B12 is known as a 'pick you up' (but I bet it only works on someone with B12D). Stimulants can cause palpitations and light-headedness. The hyper period only lasts a month or so and then your body gets used to having high B12 levels.

[NeverSayDi in reply to charks]

Good point!

[Litatamon in reply to NeverSayDi]

Are your shots methylcobalamin? Oh you said jabs! 😊So most likely hydroxycobalamin.

[Sleepybunny]

Hi NeverSayDi,

Welcome to the forum.

Do you mind me asking what side effects you had from the B12 injections?

Many people on the forum report that their symptoms get worse for a while before starting to improve when treatment starts.

Some people may get a drop in potassium levels when treatment starts.

Has your GP checked your potassium levels?

I think levels after loading injections will vary between people.

If you have neurological symptoms eg tingling, pins and needles, brainfog, twitching muscles, tremors, balance problems, memory problems etc then I would expect you to be on the treatment pattern "For people with neurological involvement" outlined in link below.

cks.nice.org.uk/topics/anae...

Do you mean your serum B12 level was 67 ng/L? I would be surprised with a level that low if you didn't have at least some neuro symptoms.

"had the course of six injections within two weeks 12 weeks ago"

Your GP appears to have put you on a pattern of treatment for B12 deficiency without any neuro symptoms. How often is the GP planning to give you injections now?

It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases of B12 deficiency, the spinal cord may be affected,

Unhappy with treatment?

How to write letters to GPs about B12 deficiency

cks.nice.org.uk/topics/anae...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

If you have time, try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with guidance below.

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12info.com

b12info.com/

Lots more B12 information in pinned post "Various PA/B12D resources".

I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.

[NeverSayDi]

Amazingly comprehensive reply Sleepybunny! What a lot of helpful links...thank you. Yes, serum B12 was 67 and no symptoms. After the injections had persistent low grade headache, light-headedness and palpitations, which began after the 3rd injection. I had had palpitations a year previously but they had stopped in February resuming after the 3rd of the 6 B12 injections. I asked the GP for a test before deciding whether to have injections every three months or take a supplement. As my side effects have calmed down I am anxious that they don't come back. As well as the B12 I had serum folate, serum ferritin and a full blood count. All described as normal. No sign of potassium being tested. Once again thank you!

[Sleepybunny in reply to NeverSayDi]

Hi again,

I've left more links in this reply. There's a lot of information so might be best to read it over a week or so. It's possible some links may have details that could be upsetting.

Palpitations can be associated with low potassium and a drop in potassium is a possible side effect when B12 injections start. Maybe nudge your GP to check your potassium levels. There are many other reasons for palpitations so I hope your GP will investigate.

B12 deficiency can lead to cardiac symptoms.

"As well as the B12 I had serum folate, serum ferritin and a full blood count. All described as normal."

Might be a good idea to access your blood test results. I was told everything was normal and I then found out of range or borderline results when I got hold of my blood test results.

Are you registered for online access to your medical records?

If not, search on GP surgery for Online Access or Online Services.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

It's common on here for people to report folate, iron and Vitamin D deficiencies as well as B12 so maybe have a look at these when you have the time and energy.

Also useful to look at Full Blood Count (FBC) results.

Full Blood Count

labtestsonline.org.uk/tests...

Iron tests

Usual test for iron deficiency is ferritin, a form of iron that is stored in the body.

There are other iron tests that a GP can order.

labtestsonline.org.uk/tests...

In a person who has both B12 deficiency and Folate deficiency, my understanding is that B12 treatment should be started before folate treatment.

What to do next if B12 deficiency suspected or recently diagnosed.

b12info.com/what-to-do-next/

"Yes, serum B12 was 67 and no symptoms"

When I looked at symptoms lists years ago, I was shocked by how many I had and some were symptoms I'd put down to a busy life and getting older. If you have time, have a look at lists below.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12info.com/signs-and-sympt...

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Many on this forum have met health professionals with a poor understanding of PA (Pernicious Anaemia) and B12 deficiency so I hope your GP does understand.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Blog post about being symptomatic for B12 deficiency with normal range serum B12.

b12info.com/your-serum-b12-...

"GP doesn't think pernicious anaemia but I have been vegetarian for nearly 40 of my 70 years"

It's possible for someone to have more than one cause of B12 deficiency at the same time eg a dietary issue and an absorption issue.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12info.com/whos-at-risk/

b12info.com/causes/

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Thread about Patient Safety, has links that may be useful for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

[NeverSayDi in reply to Sleepybunny]

Once again many many thanks for taking time to provide all this information. When I had the B12 tested this week they did foliate, ferritin and FBC. All in the normal ranges. I take 4000iu of D3 daily in the winter and 2000 in the summer. When last tested maybe a year ago my level was nearly 200. Potassium is a thought. My GP is pretty good at responding positively to requests for treatment/tests etc. I hope you are keeping well now.

[am111]

Being vegetarian and having been low once, you should definitely continue the injections. I would recommend once every 3 months or even once a month. If you want to try tablets, you could take 1000mcg/day but injections are definitely better.

[NeverSayDi in reply to am111]

The only reason I am cautious is the side effects but I think that may just be from the six close together so 1 every three months may be OK. I can only try and see! Thank you!

[Hockey_player in reply to NeverSayDi]

It also could have been unrelated to the injections?

[NeverSayDi in reply to Hockey_player]

I considered that it might be concidence. The cardiologist doesn't think the B12 is the cause of the palpitations because haemoglobin normal so jury out!

[Rexz]

My B12 initially was 70, extremely low, then after 12 weeks it had only rose to 189, still low. It took me maybe another three months or so before it max'd the upper limit of the test at 2000 where it's stayed ever since.

I am guessing here, but I think it could make sense. B12 test is testing the value in your serum. So maybe if you're very low to start, then your cells are starving for B12. In that case would not your cells be like a sponge and soak up that serum B12? Then after the sponge (cells) is full the uptake from serum to cells would slow down and thus serum levels would remain higher???

Just one of my whacky unresearched thoughts. 😜

Rexz

[NeverSayDi in reply to Rexz]

That is very helpful Rexz. It is amazing that yours only went to just on the very low side of what the GP says is normal range. Your theory certainly makes a lot of sense. Mine has likely been very low for a long time.

[Loupharm]

please double check what your iron level actually is as low iron can cause palpitations which it sounds like from your description are long standing and we’re concerning enough to warrant specialist referral- a “normal” lab range for iron can vary from area to area, for example, it could be quoted as “normal” and be as low as 10. This is not “normal” , and if you’ve had b12 injections it will probably need to be >100, as they need each other (and folate).

[NeverSayDi in reply to Loupharm]

Sorry to be slow replying but thank you for that info. It is quite silly that the normal range of various things can vary ... they are either low or high ... or not! Different labs seem to have different criteria too. Interesting that B12 and iron need each other, rather like the D3 and K2 relationship.