B12 Deficiency Syptoms: hey guys/girls... - Pernicious Anaemi...

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B12 Deficiency Syptoms

Nathan12345 profile image
41 Replies

hey guys/girls

I was just curious as to what symptoms you all have due to B12 Deficiency I have the following;

Pinky finger pins and needles in my right hand

Carpal Tunnel sensation in right forearm

Psychosis

A dull pain in my cheekbones

Joint pain (odd occasion)

Tender calf muscles (especially when walking at a faster pace)

Slight confusion

Poor memory recollection

Just curious as to if anyone has the following

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Nathan12345 profile image
Nathan12345
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41 Replies
123harry profile image
123harry

joint pain and poor memory are two of those that l have vitamin d helped quite a bit with joint pain worth getting that checked, iron deficiency seems to run alongside b12 for some reason ask to get your ferritin levels checked also very important always ask what your levels are when they come back doctors will tell you they are normal even when they sometimes just sit above there labs cut off point

Nathan12345 profile image
Nathan12345 in reply to123harry

I'm getting bloods done again tomorrow, checking b12/folate to see if the levels have risen since being on tablets, will grab a good multivitamin too when I'm in town probably a centrum for men as I've had them before and was alright taking it

clivealive profile image
clivealiveForum Support in reply toNathan12345

Post your results here Nathan12345 and someone more qualified than I will be able to give good advice.

You don't mention anything about your diet or lifestyle, whether you have had stomach surgery, or what medications you are on which might affect absorption of B12.

I wish you well.

Nathan12345 profile image
Nathan12345 in reply toclivealive

I'm a vegetarian, only way I've ever gotten b12 is through eating fortified cereals and drinking milk, i stopped eating cereals once i was in college which was around 5 years prior to when i started getting the symptoms (which was last year) I've not taken a multivitamin for about 3 years, ive never had stomach surgery and the longest I've been on medication was a month and they were pennecellin

clivealive profile image
clivealiveForum Support in reply toNathan12345

Please let your doctor know about your diet Nathan12345 as you could well be B12 deficient. Hopefully the tests will show that and then at least you can get supplements from your GP.

Can you eat fish, eggs & dairy products?

Nathan12345 profile image
Nathan12345 in reply toclivealive

I've been diagnosed as b12 deficient (was at 178) and been given 50mcg cyanocobalamin to take twice a day, but this was 6 qeeks ago now and my symptoms aren't improving, I've mentioned my diet do the doctors so they are aware, I know nothing about b12 and was wondering if anyone has similar symptoms to myself,

I drink milk and eat cheese but don't eat fish and eggs

clivealive profile image
clivealiveForum Support in reply toNathan12345

If you have finished the cyanocobalamin tablets are you due to go back for another serum B12 test - or are you still taking them? It sounds to me that they are not enough and you really may need to have B12 injections until there is no further improvement to your symptoms.

The only "natural" way to get B12 is through foods which you as a vegetarian don't eat so you are going to get it "artificially" for as long as you remain vegetarian. The "little bits" added to some cereals would probably not be enough.

When I was diagnosed with P.A. 44 years ago I was threatened with having to eat raw liver three times a day. Fortunately the B12 injections were the alternative - and I've had them every four weeks since then and I'm now coming up to 75 next month.

You really do need to get yourself sorted as damage caused by B12 deficiency can be serious. Make a note of all your symptoms and tell your doctor.

Nathan12345 profile image
Nathan12345 in reply toclivealive

I've got enough of the tablets left to last me 3 weeks but I'm going back to see another doctor on monday (one that gives my nan b12 injections) and ask her about them and I'll write down all my symptoms too, i mainly have neurological symptoms and i heard injections is the best treatment for them, thanks for your help :)

Booksellercate profile image
Booksellercate

Hey,

My symptoms are:

- constant lightheadedness/faintness, sometimes dizziness

-weak legs

-joint pain in legs

-slight weakness/numbness in left arm

-fatigue

-poor memory

-frequent urination

High levels of methylcobalamin in sublingual form has helped the urination, weakness and pain. I'm about to have my 9th injection-can't see/feel what the injections are doing just yet but I know neurological symptoms can be stubborn!

Nathan12345 profile image
Nathan12345 in reply toBooksellercate

Most of my symptoms are neurological, i am hoping to start injections soon, all i have to do is persuade the docs, have the injections helped at all with your symptoms?

Booksellercate profile image
Booksellercate in reply toNathan12345

Nathan12345 - I haven't noticed a huge difference yet-I've had 8 now but I've heard neuro symptoms can take a little while to recede. My lightheadedness hasn't been too pronounced for a couple of days so I don't know if this is something to start getting hopeful about?

I'm currently also on 5000mcg methylcobalamin sublinguals but I'm hoping to increase it slowly through tolerance building (I started on a 10, 000-15, 000mcg dose a day and had unbearable headaches)

Booksellercate profile image
Booksellercate in reply toNathan12345

Nathan12345 - my GPs refused to give me injections because my B12 levels were 243-even though I was symptomatic and my blood test results displayed macrocytosis, nucleated red blood cells and high folate! The doctors said that my problems could well be down to a B12 deficiency but they couldn't justify giving me injections because I was just within range. Yep, true story. So I sourced my own injections and my mum is injecting me every day :)

Nathan12345 profile image
Nathan12345 in reply toBooksellercate

In the past week I've been taking a 1000mcg b12 tablet in the afternoon/evening (whenever i feel certain symptoms) which seems to be helping but they still persist the next day, I'm going through the doctors first and if they reject the idea of injections i may aswell order them and do them myself too, but I'm going to be smart about this and make an appointment with the doctor that gives my nan her b12 injections in the hopes that she's more understanding

Booksellercate profile image
Booksellercate in reply toNathan12345

Good luck!

It isn't really possible to overdose on B12 so you could try experimenting with a higher dose of oral B12 (or patches/sprays) to see if it addresses the return of the symptoms. Also, it can take a while for any damage to be reversed...

Lots of people on here have shared what worked for them.

Jolyn profile image
Jolyn in reply toNathan12345

I get the burning skin...I've had my loading dose and my next B12 injection is due in July.

Nathan12345 profile image
Nathan12345 in reply toJolyn

That's a bit off an odd symptom

Ithinkimdying profile image
Ithinkimdying

Hand tremors/tinnitus/muscle spasms/restless legs/sensation of rapid pulse/shoulder blade pain/headaches/chest pain/vertigo/fainting spells/difficulty breathing/nausea/hypersensitivity to light/panoia/mood swings/fatigue/insomnia/eletric sensation in both legs/cold hands and feet/loss of feeling in hands and face/muscle spasms/repeating sentences and words/ so much more lol. My b12 is 196

Ithinkimdying profile image
Ithinkimdying

I take cyanocoblimin injections every other day with supplementing cofactors. I have PA.

Nathan12345 profile image
Nathan12345 in reply toIthinkimdying

Wow that sounds rough, i forgot to mention i have blurred vision too, i feel at my wits end with my symptoms i can only imagine how it makes you feel, have the injections helped at all with the symptoms?

Ithinkimdying profile image
Ithinkimdying in reply toNathan12345

I've been on injections for about a month and yes it has started to help. I also have eye floaters in my left eye. The main things ive noticed is no major headaches and i don't really nap anymore. I use to need a nap daily to manage and still felt bad when i got up

Nathan12345 profile image
Nathan12345 in reply toIthinkimdying

I have to admit the fatigue was the first symptom to go when i started on the tablets, it's great you're starting to feel better on the injections

Booksellercate profile image
Booksellercate in reply toIthinkimdying

Are you supplementing with sublingual B12? I'm on daily hydroxocobalamin injections now (have been for just over a week) but I started on 5000-10000mcg methylcobalamin about 4 weeks ago and it has started to make some differences. I too had nausea/stomach aches and the sublingual tablets alone cleared those up pretty quickly. It also helped with the joint pain and leg weakness.

Maybe worth investigating adding another form of B12? I was keen to keep with the methylcobalamin in sublingual form even once I secured my hydroxo injections because I've heard that it's particularly good for addressing the neuro symptoms! I heard a few have had good success with the hydroxo inections/methyl sublinguals combination :)

Good luck with your journey to recovery :)

Nathan12345 profile image
Nathan12345 in reply toBooksellercate

I'll have to look into that as i have cyanocobalamin tablets and didn't know there were other cobalamins out there

Booksellercate profile image
Booksellercate in reply toNathan12345

There are 4 kinds I'm aware of: hydroxocobalamin, cyanocobalamin, adenosylcobalamin and methylcobalamin (active B12). Different ones work for different people, lots of us use a combination. Methylcobalamin is the active form of B12 and is 'ready' for your body to use - doesn't need converting. It's supposed to be good at dealing with the neuro-symptoms. Injections are usually the inactive hydroxocobalamin. Cyanocobalamin does work for some people but it doesn't stay in the body for as long as either hydroxo or methyl.

It might take a little trial and error to find out what works for you :)

Ithinkimdying profile image
Ithinkimdying in reply toBooksellercate

Most everyone on the PA group on facebook is on cyano. That's around 10,000 people. It seems to work well for most. I honestly think it depends on the Severity of your symptoms how often you need to inject. I inject every other day to avoid neurological symptoms from returning

Booksellercate profile image
Booksellercate in reply toIthinkimdying

Cyano is still the most popular form of B12 in US. Most of the rest of the world have moved onto hydroxo which is generally considered superior because it stays longer in the body. I think lots of supplements use cyano but that's because it's the cheapest form of B12 so is a cost/profit thing. So yes, there's still a lot of cyano around but it's always worth experimenting :)

Ithinkimdying profile image
Ithinkimdying in reply toBooksellercate

Hydro we can buy from german. But its well over $200 and you would only get a month if you inject daily. Most the ladies i know who use cyano are in the UK. i don't know many at all with PA in the us. It isn't as widely known here.

clivealive profile image
clivealiveForum Support in reply toNathan12345

There is a spray called B12Boost which you can get from any major pharmacy. It delivers 1200mcg per daily dose (of four "squirts") into the mouth of methylcobalamin which is supposed to be the most effective form of B12.

However your mentioning that your Gran is on B12 injections raises the possibility that your "condition" may be inherited and the doctor you are going to see should be aware of this.

Here is a list of symptoms also shared with B12D

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

Nathan12345 profile image
Nathan12345 in reply toclivealive

I'll have to have a look at that spray and see if i notice a difference, i didn't know b12 deficiency could be hereditary i just thought it was due to their diets, thanks for the list of symptoms, was interesting as I've had a few of them over the last year and thought i was going crazy!

clivealive profile image
clivealiveForum Support in reply toNathan12345

Nathan12345 you wrote "(one that gives my nan b12 injections)"

If your Nan has P.A, that can be inherited but as you say you are vegetarian - however the treatments are much the same

Nathan12345 profile image
Nathan12345 in reply toclivealive

Ahh i see, i don't know if my nan has P.A but I'll have to ask her just to be sure

JAMV profile image
JAMV in reply toclivealive

Hi clivealive isnt tinnitus a neuro symptom?

clivealive profile image
clivealiveForum Support in reply toJAMV

It is certainly on my list as I have had it for years and still have it even though I'm now profoundly deaf in the frequencies of the human voice

Ithinkimdying profile image
Ithinkimdying in reply toBooksellercate

Im not sure if you were commenting to nathan or myself but i also have gastritis that's been ongoing for two years. I think thats my issue with nausea. I also intake 6000mg of potassium a day to make sure my levels don't drop with injects so that could be another issue x

Nathan12345 profile image
Nathan12345 in reply toIthinkimdying

Ithinkimdying this might seem a bit odd but do you have a fullness sensation in your ear, i do and I've heard b12 deficiency can cause nerve damage but I'm not sure if it only affects arms and legs or nerves everywhere in your body, ive had an mri scan of my inner ear and there seems to be no issues relating to labyrinthitis or eustachian tube disorder

Ithinkimdying profile image
Ithinkimdying in reply toNathan12345

Yes actually i did before injections. And the tinnitus was insane! I still have it but its mild not severe like it was. I actually thought i had an ear infection severeal times from my ears feeling full. I haven't seen a ear/nose/throat doctor. My mri of brain was also normal. I did have alot of reoccurring ear infections as a child too.

Ithinkimdying profile image
Ithinkimdying in reply toNathan12345

Nathan12345 do you also suffer with bouts of vertigo?

Nathan12345 profile image
Nathan12345 in reply toIthinkimdying

Ithinkimdying well it all started off with vertigo, yes i still get it now, i go off balance walking up stairs and bump into the wall, my tinnitus is extremely loud especially in the morning and when I'm lying down and there was a good few months when i was younger where i got recurrent ear infections also

Ithinkimdying profile image
Ithinkimdying in reply toNathan12345

I've been bumping into walls/sinks etc for as long as i can recall. At that point i put it off as clumsy. I didn't know it was anything. Now i have a wide standing gait and walk weird. My mother commented on it once when i started see the neuro but never told me before that! Pretty sad :/

Nathan12345 profile image
Nathan12345 in reply toIthinkimdying

I've not noticed a difference in my walking but i do get jelly legs as well as pain in my calf muscles, would your wide standing gait be corrected with treatment?

Ithinkimdying profile image
Ithinkimdying in reply toNathan12345

I hope its corrected but it might possibly not . I've read depending on severity and how long you've been deficient you may have long term neurological issues. I also get jelly legs :(

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