B12 loading doses feeling worse

[gemmacampbell]

I've been getting headaches daily for the last 4 weeks now. Had bloods done and my b12 is at 77 so I'm on my second week of loading doses and I feel awful worse than before I started! Before was headaches everyday now I've still got the headaches and sometimes my arms feel tingly and weak. Do I need to carry on with injections every other day as my doctor said after the 6 loading doses I'll get an injection once every 12 weeks

[Technoid]

Sounds about right - everything is as expected, but you might need to continue loading for longer than they think - your B12 was very low indeed and tingling and weakness suggests possible neurological symptoms.

I expect they didnt tell you that you would feel worse before feeling better, which is usually down to physician inexperience.

Other than keeping the B12 going in, you should make sure nutrition is on point to support the healing process and supplement as needed.

[clivealive Forum Support]

It is not uncommon for symptoms to appear worse after treatment starts and this is probably because the B12 is starting to repair (and "wake up") nerve endings damaged by the B12 deficiency

You may also need to supplement with folic acid and even iron as these work with B12 to create red blood cells - ask your GP to check those levels.

SAs Technoid and the guidelines say loading doses should continue until "there is no further improvement"

Be assured there is "life after P.A" as I've had it for over 52 years and I'm still "clivealive" at 83.

I wish you well

[gemmacampbell in reply to clivealive]

My serum folate level was 4.9

[Sleepybunny in reply to gemmacampbell]

I bet that's only just within reference range. Maybe ask GP if you would benefit from taking a folate supplement.

[QianYunxi]

I found that sometimes it means it's an electrolyte imbalance with either potassium, salt and magnesium, rarely calcium also.

If taking none of that works then it means you would have to wait for it to subside by itself.

Day before yesterday I had a terrible headache a few hours after my injection.

Taking more potassium (banana) either didn't help or made it worse.

It's only when I coincidentally ate beef that had salt for supper that it started to recede rather quickly.

Some time afterwards, I then ate another banana and felt like I was returning to normalcy.

Headaches can be a sign of hyponatremia.

B12 pushes a lot of potassium into your cells when healing begins and if you drink a little liquid this effect is even more pronounced. And so you need salt or calcium to balance it out sometimes.

[gemmacampbell]

Thanks for your replys! I have one tomorrow and my last on Friday will see what they say about having more loading doses. I didn't have the tingling or weakness in my arm till I started the loading doses is that normal? Its only now and then it happens.. I only started with the headaches about 4 weeks ago so I've gone ages without symptoms with my levels being so low

[B12life]

I experienced the same. It's because b12 is responsible for cell generation. Our cells die and regenerate every 120 days. Except when they don't have b12. B12 is seriously detrimental to life.

Now that you are getting b12 your cells are all regenerating. Best I can explain is b12 deficiency causes nerve cells to die then when you inject the cells start regenerating; however all at once thus the "feeling worse"

Your b12 is SEVERELY low. If your body doesn't get b12 the symptoms can become permanent. Don't stop injecting, this feeling worse is only temporary. It should resolve in a month or two and then you will be on the up hill swing. If you space the injections out, it will only set you back to ground zero. Daily or every other day injections are needed to give your body the b12 it needs to heal.

If your liver and kidney function tests came out normal that means your liver and kidneys will be able to handle any amount of b12 and b12 won't be toxic at any level.

if you have to get your own supplies and keep the injections going.

don't let the docs space out the injections. If they won't budge take it into your own hands.

ncbi.nlm.nih.gov/pmc/articl...

There is hope. If you inject frequently and keep at it, it may take a year or two to get back on your feet but you will.

Listen to the others advice too, check iron, thyroid, folate and vit d.

[gemmacampbell in reply to B12life]

Do you not think the 6 loading doses will be enough? The doctor said have the 6 then one injection every 12 weeks

[B12life in reply to gemmacampbell]

Absolutely not. Doc go by the text book and should not because b12 cannot be tested accurately once high dose supplementation esp injections are started. It takes 3-4 months for the b12 from the injections to clear the blood stream. This stopping injections just for a test is pointless and thus they should base the need for injections on your symptoms and their improvement. As this article points out, injections should be continued frequently until symptoms resolve. Otherwise the damage can be permanent.

Question, treatment can depend on cause of the deficiency. If diet related then the injections eventually can be stopped. B12 comes from meat. If you don't eat meat, maybe after a year they can stop Injections, again it should be based on symptoms. But if you eat meats and eggs daily then the cause is your body's inability to metabolize b12 orally, in which case you may need injections for life. Esp since science isn't there to determine cause because the b12 metabolic process is a very complex multipart process. If they can't find the cause then how do they expect the problem to go away?!????

Thus if b12 is harmless why not inject. B12 deficiency if left untreated is actually deadly. You'll just die a very slow death. Yet docs don't know this. Yet why? It's as simple as knowing that if you don't have b12, you don't regenerate cells and without cells our core body functions malfunction and eventually stop working.

[gemmacampbell in reply to B12life]

From the sounds of it I don't think I'll be getting more injections apart from the 12 weekly. I have mentioned about my pins and needles and headaches but she didn't seem too concerned and said I could start taking b12 tablets daily. Suppose will wait to see what happens when my blood tests come back again next week

[B12life in reply to gemmacampbell]

Well the test will likely show high. Any doc that wants to test b12 during injection doesn't understand b12 deficiency. The test will be skewed by injections. It takes months to clear. I would get the letter provided by PAS that they made for people to give to their doctor to explain why injections are needed. Ask a separate q in this forum for it and someone will give you the link. Take it to your next injection.

Or start doing your own injections, but don't mention that to the doc. If they don't understand b12 they won't understand why you are self injecting.

This is what I had to do. Best of luck! Hang in there.

[Wwwdot]

Hi gemmacampbell

So sorry to hear your plight but you are starting from a VERY ridiculously low B12 level.

I was really unwell for three months with loading doses as I was really low too. Don’t give up though because I am now almost back to full health -still need to inject and constantly keep my eye on things but on the whole - I have my life back.

Keep an eye on cofactors and vitamins all should be above average so your body has plenty to use for repair and healing. Drink plenty water to flush out toxins as your body heals.

🤗🤗🤗

[gemmacampbell in reply to Wwwdot]

The nurse said she will do my bloods Friday before my last loading dose but from the sounds of it I don't think I'll be getting any more injections apart from every 12 weekly. I have mentioned the pins and needles along with my headaches but she didn't seem to concerned. Did you have to keep having injections every other day?

[Sleepybunny in reply to gemmacampbell]

Might be worth putting concerns in a letter to GP as I think harder for them to ignore.

See Point 1 in link below.

b12info.com/writing-to-your...

"The nurse said she will do my bloods Friday before my last loading dose"

I suggest you read this PAS article before Friday.

Testing B12 during Treatment

pernicious-anaemia-society....

Have you been tested for PA and Coeliac disease?

Both auto-immune conditions that can lead to b12 deficiency.

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS membership is separate from forum membership. You do not need a PA diagnosis to join.

pernicious-anaemia-society....

Diagnosis of Coeliac disease

coeliac.org.uk/information-...

NICE guidelines Coeliac disease

nice.org.uk/guidance/ng20

[Wwwdot]

Hi gemnacampbell

Yes I tried to wait 12 weeks after loading doses but just felt awful. Symptoms worse and no energy - spent most days in bed crying and sleeping.

I went private and was supported to do EOD injections or whatever frequency I need. I now do every day and have my life back.

🤗🤗🤗

[Sleepybunny]

Hi,

Just a short reply, can't type much at moment.

Many here report symptoms getting worse before starting to get better. Someone once described it to me as the nerves waking up after being starved of B12.

Has GP checked your potassium levels? Some people experience a drop in potassium when treatment starts. Maybe you could nudge GP to check.

Have you got results for folate, ferritin and other iron tests and Vitamin D? Forum members often report these deficiencies as well as B12.

"my doctor said after the 6 loading doses I'll get an injection once every 12 weeks"

My understanding is that in UK if you have neuro symptoms eg tingling then you should be on treatment pattern for those with "neurological involvement" outlined in Indications and Doses section in link below.

bnf.nice.org.uk/drugs/hydro...

This pattern is a B12 loading injection every other day for as long as symptoms continue to improve then a B12 maintenance injection every 2 months.

Delayed or inadequate treatment of B12 deficiency increases the risk of developing permanent neurological damage. In severe cases the spinal cord may be affected.

Guidelines

When you have the time and energy read these

1) new NICE B12 deficiency guideline, published March 2024.

nice.org.uk/guidance/ng239

I have reservations about it but there are some good bits.

2) NICE CKS (Clinical Knowledge Summary) Anaemia - B12 and Folate deficiency

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

3) Try to find the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England or Health Board (Scotland/Wales)

I left a detailed reply in this thread which I think you'll find useful.

healthunlocked.com/pasoc/po...

I'm not medically trained.