b12 is low and leg pain

[Cassieblu]

hello

I was diagnosed with low b12 about 3 weeks ago. I was asymptomatic for a long time and on occasion get brain fog so I asked for a blood test. I then found out my levels were 76 NG/L . I also have low iron which was at level 9 bf/ml which I’m taking tablets for.

I feel like ever since my diagnoses my health has worsened, my legs are getting pins and needles, pain, cramps, I’ve had my first 3 round of injections and my symptoms are getting worse. I never had leg pain before the injections and now I’m suffering daily with pain and pain killers don’t help. I have 3 more injections to go but is it normal for pain to worsen before it gets better?

[addie18]

That is very low b12. Yes, my pain and other symptoms did get worse for awhile. Still, make sure to discuss with drs.

[jade_s]

Welcome to the forum Cassieblu! Wow those are very low levels!

Yes it's normal for things to get worse before they getter, unfortunately. And nerve pain is the one thing painkillers can't touch

How often are you getting loading doses and what form? Treatment varies by country.

Normally you should get a set of loading doses over 1 to 2 weeks. If you still have neurological symptoms and nerve pain, guidelines say to continue every other day (hydroxy form) or daily (cyano form) until 'there is no further improvement'. For some of us that can take many months, though usually symptoms start improving after a few weeks to few months.

You may be low in potassium. It's used up as the body starts making new healthy red blood cells. You my want to increase dietary sources such as coconut water, bananas, avocados, others - if you search online you can find lists of foods high in potassium. That could be the cause of the cramping.

Was folate tested? You need good folate levels for b12 to be able to do its job.

Did they check intrinsic factor antibodies?

I'm not medically trained.

[Cassieblu in reply to jade_s]

thank you for answering! It’s really worrying when the pain starts as so many people have told me once I get one b12 injection il be better but for me it got worse!

I’m from the England, I have 6 injections within a 2 week period and 3 months on iron tablets.

My legs are my main source of pain (strangely on my fibula) both legs, it started off one but now it is both. I also get achey thighs. And sometimes my arms have pain. I will try potassium but I’m going to try get some more blood tests after my last 3 shots of b12

[jade_s in reply to Cassieblu]

Better after one injection 🤣🤣 They are for sure smoking something like Technoid says. Even their 6 loading doses are often insufficient.

Furthermore, UK guidelines call for continued injections every other day, until symptoms 'stop improving' when neurological symptoms persist, such as pins n needles. Doctors seem to forget this part. Some people are able to convince their doctors, others have to self source from German pharmacies to continue injecting frequently.

It's completely normal - unfortunately - to get worse for at least several weeks after starting injections.

I'm sorry, i remember how awful it was. Hopefully some of these suggestions will help and you'll be on your way to feeling better soon 🙏

[jade_s in reply to Cassieblu]

I should also add: don't be surprised if your B12 levels are still high after the 6 injections. They can use that a reason to stop them, but it is well known that injections can cause high levels for an extended period of time. That does NOT mean you should stop injections. Please read ncbi.nlm.nih.gov/pmc/articl... "The Many Faces of Cobalamin (Vitamin B12) Deficiency" See especially Table 1 on "Misconceptions and Misbeliefs" associated with B12D.

[Cassieblu in reply to jade_s]

Thank you! This is so helpful. I’ve been so anxious these past couple of weeks and feel better to know this info. I wish the doctors would’ve said something before! I’m going to book a GP appointment and let them know about my pain, and hopefully continue the injections

[jade_s in reply to Cassieblu]

You're very welcome! I can understand the anxiety - it is very confusing when doctors/others tell us one thing but we experience something totally different!

I just wrote a long post here on someone else's thread - please forgive me for not typing it out here! - but I think you will find the info useful as well healthunlocked.com/pasoc/po...

Regarding Vit D, you can get private labs from one of the ThyroidUK recommended labs (and you should be able to use the discount codes too ) thyroiduk.org/help-and-supp... I understand that UK doctors are reluctant to test Vit D.

[Cassieblu in reply to jade_s]

Thank you! Helpful information. Had my 4th injection today. The nurse seemed confused when I told her about my leg problems she said “these injections are supposed to help it not make it worse” so I don’t know if it’s just a knowledge gap as I’ve read so many things about people’s symptoms worsening.

Today I’ve got lower back pain and pins n needles in my feet… feel like it’s something going wrong daily. Really hard to stay positive but I’m going to (try) get a GP appointment for further tests.

also if you mean serum folate that was 3.3ng/ml.

[jade_s in reply to Cassieblu]

Yes it seems there is a substantial knowledge gap, not sure why!

Serum folate is extremely low. If GP has not prescribed anything, i would get them myself if i were you. Injections will use up the already low levels, and B12 needs folate to do its job. Low folate can also make you feel miserable, giving low b12 symptoms as well as others. b12deficiency.info/folate-b...

I know it's tough to be patient when your body just won't cooperate. If brain fog isn't too bad, i suggest reading through the forum and various b12 related papers to pass the time 😉😄

[Cassieblu in reply to jade_s]

where can I get folate? Is there any drugstores that have the vitamin do you know??

Thank you!

[jade_s in reply to Cassieblu]

Folic acid, folinic acid, and methylfolate are all types of folate you can find in any vitamin shop or even grocery store. Also found in leafy green foods.

GP would normally prescribe 5mg folic acid for deficiency. Some people can't tolerate such high doses so you should track symptoms and/or start on lower doses. Over the counter, you can only get 400 to 1000 mcg doses i believe, so you can take multiple tablets if necessary.

[Cassieblu in reply to jade_s]

Great thank you!

[jade_s in reply to Cassieblu]

You're welcome!

[Myoldcat in reply to Cassieblu]

I'm about 5 weeks into the process. 2 weeks of loading doses, then a week's gap because I felt so ill, now injections twice a week. I've had intermittent stabbing pains in my shin bones, usually feels like a fork has been stuck in once or twice, but today it's been shockingly bad! The only saving grace is the suddenness and severity of the pain makes me bleat like a goat, so then I have to laugh... it's that or cry 🤷🏼‍♀️I'd like to wake up when it's all over please.

[Cassieblu in reply to Myoldcat]

I had shin pain too so random but it’s gone now I’ve got no more symptoms at all thank god it will go eventually !!

[Myoldcat in reply to Cassieblu]

Thanks for the reassurance Cassieblu. I know it will go, but it's bloody awful when it strikes - so random as you say, SO agonising even for just a few moments, and so out of the blue. Still, many people are dealing with much worse, and at least it's a sign that things are healing 🙏

[Cassieblu in reply to Myoldcat]

Exactly !! It can take a few months to heal but dealing with the pain in the mean time sucks hopefully it’ll go away soon x

[Technoid]

Yes, with neurological damage, pain increases as the nerves start to function better and communicate the extent of damage to nerves and tissue which had previously not been clear due to poor nerve function. This should improve with time, sufficient B12 and other nutrients from a good diet and supplementation as required.

Many medical practictioners with limited experience of treating B12 deficiency where neurological symptoms are present expect symptoms to improve right away when treatment starts. Unfortunately, with significant nerve damage, this isn't how it works and increased pain and new or worsening symptoms will likely occur before improvement begins. Experts in B12 treatment are well aware of this phenomenon and even have a name for the experience - "early treatment decline".

I had some pain in my hands before treatment but in the weeks following the start of my treatment the pain worsened dramatically to where I could no longer lift a kettle, type or text on my phone - the pain was so sharp. I remember that to even dry my hands was like holding onto an electric fence. I could only shuffle along after my first injection, my legs just could not move me forward at a normal pace - a 5 minute walk took 20 mins of shuffling.

It all improved and for me eventually disappeared, with time and treatment/nutrition.

[Cassieblu in reply to Technoid]

Thanks for replying! Yes so many people were saying after one injection I will be fine! How wrong!! It’s so much worse! Thanks for the info!

[Technoid in reply to Cassieblu]

One injection!? Your B12 was 76 (more than 100 lower than mine when I began treatment) and you have neurological symptoms. These people are smoking some strong stuff indeed if they think a single B12 injection will fix everything instantly. Getting sufficient B12 marks the start of the journey, not the end - settle in for a gradual recovery after early treatment decline finishes.

Keep up good nutrition and supplement any deficiencies, reduce stress, rest and sleep well and try not to worry, you're on the right track, even though that might be hard to believe right now with everything seemingly going in the wrong direction. Recovery has begun and it will take time and patience.

[Cassieblu in reply to Technoid]

Thank you! I’m going to try change my diet to more foods high in b12/iron as I know it was lacking before. Super helpful information thank you!

[Technoid in reply to Cassieblu]

The only foods I know of that are quite high in B12 are animal foods. Is your deficiency suspected to be dietary?

From my (biased) perspective as a vegan, increasing the amount of animal foods in the diet is unnecessary and a completely futile way to try and obtain B12 if you have PA or absorption issues.

Low stomach acid (common with PA), makes it difficult to remove the B12 from the protein it is attached to in animal foods - not an issue for supplemental B12. If you have PA, the B12 has no transport protein (intrinsic factor) available to it to safely reach its absorption site so other than high quantities of liver (which comes with vitamin A toxicity issues if you eat too much of it) most foods would not have enough B12 for significant amounts to be absorbed by the second absorption mechanism, "passive absorption", which absorbs about 1%.

The much higher doses available from supplements are more likely to be effective since enough may be taken in via passive absorption alone but for unknown reasons many with PA find that oral or sublingual doses are ineffective no matter how high the dosage. Injections of course are the preferred and safest route to get enough B12 into the system quickly, bypassing any possible absorption issues.

There is roughly as much iron in 100g of lentils as 100g of steak, and availability is not an issue if you combine with vitamin C foods, beta-carotene, onion, garlic which all increase absorption dramatically. There are also plenty of gentle iron supplement options like iron bisglycinate or ferritin iron, among others, that may help if enough cannot be obtained in the diet or because of absorption problems.

It is your choice but you have options that don't need to involve an increased consumption of animal foods.

[Hidden]

I had severe iron anaemia for a while, without any one realising ( haemoglobin count of 6.)I had an awful sensation of feeling like things crawling all over my legs at night. I was recommended to get magnesium spray. Holland and Barrett have it. I did find it useful to spray on my legs before going to bed.,

[Cassieblu in reply to Hidden]

Thank you!! I will look into this

[MorningMist]

Have you had your vitamin D tested? A few years ago my level was 30 and I had dreadful lower leg pain in my shins. My levels are now 90+ and it has resolved completely. I take 1000iu D with 90mcg K2 daily all year round. ( vitamin d increases calcium absorption and k2 diverts it to your bones so it doesn’t deposit in blood vessels).

[Cassieblu in reply to MorningMist]

Thank you I haven’t but I am also experiencing really painful shins so they could explain something

[Myoldcat]

Very useful info, everyone. Haven't caught myself bleating for a couple of days so I think the shin pain is calming down to a background nag. Will up my Vitamin D too. However, the migraines having really eased off are now escalating. . But as we seem to discover with this B12 early treatment decline process, tomorrow is another day with many weird possibilities in store... Technoid, I wish I had some of that strong stuff you mentioned to smoke!