Are these symptoms b12 deficiency please

[cuddlywuddly]

Hi im new here too.. advice needed please as im hoping this is b12 deficiency symptoms & not something even worse.sorry its a bit long..in 2015 i suddenly had a dreadful depression hit me out of the blue literally so quick i had been on lansoperazole/omoperazole for years for heartburn indigestion i went to the gym twice to try feel better in myself bearing in mind i had a gallbladder removal 6wks beforehand keyhole surgery..on returning home i noticed fascciulations in my calfs (which are still happening) my b12 was then 259 then 2 wks later i got terrible arm and leg pains i couldnt walk much without sitting down with no energy and pain.. even worn out hoovering .. by january 2016 my arm pain had stopped except when i do anything like ironing etc then the muscles hurt especially when any pressure on them. Also i had a tremor through arms legs.. I stopped lansoperazole .. The low energy had eased off but pain in legs still same and by now i had random twitching in legs arms and odd occasional leg vibrations..My legs continued to hurt at the front and back thighs a burning / prickly pain I knew nothing about b12 but looking back now at my medical results my b12 was by then 331 my doctor never mentioned b12 but it was done along with a host of other blood tests.. i was sent to rheumatologists neurologists mri scan ct scan physio all results clear no one knew what was wrong with me.. by now my anxiety had gone through the roof.. if i took ibuprofen for pain i felt like lying o the floor curling up and dying it made me feel so ill.. in july 2017 my b12 was checked again (after 18 months of pain) it was 267 still no mention of deficiency or low levels.. i continued with stronger pain killers given (amitriptyline) which i had to stop after months of feeling groggy on them my doctor must be fed up seeing me but i kept going to see him knowing something's not right..i knew it wasnt fibromyalgia i sleep well and i dont have the other symptoms at one point a neurologist tried to tell me it was stress... no this was making me stressed! Then october (just gone) 2017 he did another b12 test it was 205. . He has now sent me for b12 loading doses of hydro i had 6 for alternate days now ive been told to have one shot every 3 months ive asked for more but he said no that i need spaces between shots... i still have terrible burning pain in my thighs my arms are ok now although think muscles do get easily fatigued on excursion ... twitching now stopped apart from odd one here and there.. could anyone pls tell me this pain in legs is probably b12 deficiency?.. and how long would it take to go .... i started first loading in November 2017 it seems to feel a bit more painful recently.. apparently i do not have anaemia my cells are not large and my follate was normal whatever that means... i have bought daily vitamin b12 spray 1200 do you think i should use it every day between 3 monthly shots (4 sprays daily) im sorry this is so long but im so worried and scared that this wont stop ....thankyou kindly

[clivealive Forum Support]

Hi cuddlywuddly sadly the "one size fits all" period of three months between injections is not enough for a lot of people with Vitamin B12 deficiency/Pernicious Anaemia and many need to supplement between times - myself included.

You cannot overdose on B12 as any excess is excreted via your urine and your doctor's assertion that you "need spaces between shots" is totally ludicrous.

Try spray and if you feel a benefit continue to use it and if possible bump up your intake of animal products - mrat fish, seafood, eggs, poultry and dairy produce as they are the foods from which we source Vitamin B12.

Have you had your Folate level checked since you had the loading doses in November?

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

You can maintain a healthy Folate level by eating plenty of leafy green vegetables such as sprouts, broccoli, asparagus, spinach (good for iron too) peas, beans etc. to go with your meat.

Hopefully it is only the lansoprazole that was the cause of your B12 deficiency in the first place and now that you have stopped using it your absorption of B12 will return to "normal" (how I hate that word when used by doctors....!).

It may help your digestion by adding lime juice to a glass of water at meal times.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Sleepybunny]

Hi,

Some links about b12 deficiency that may be of use. Some info may be UK specific.

Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk factors for B12 deficiency and PA

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

What does GP think has caused your B12 deficiency? See Risk factors above.

Have you had tests for PA (Pernicious Anaemia)?

Tests for Coeliac disease?

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

UK B12 documents

If you're in UK, I'd suggest reading all of these.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

"had 6 for alternate days now ive been told to have one shot every 3 months ive asked for more but he said no"

Do you have neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues, tremors etc? See Symptoms lists above.

If yes, in UK, the recommended treatment pattern for b12 deficiency where there are neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to improve then a jab every 2 months.

The pattern of treatment you describe in the quote above is recommended in UK for B12 deficiency without neuro symptoms.

Has GP explained to you why you are not on neurological treatment regime?

Links about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

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

PAS (Pernicious Anaemia Society)

If you suspect PA then may be worth joining and talking to PAS.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

"and my follate was normal whatever that means"

One of the most important things I learnt was to always get copies of all my blood test results. I learnt to do this after being told everything was normal and then finding abnormal and borderline results on the copies.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Lots more B12 info in pinned posts on this forum.

I am not medically trained.

[cuddlywuddly in reply to Sleepybunny]

Thankyou very much clivealive and sleepybunny for your very kind and informative replies which i am looking into.. . have you heard of anyone having burning /prickly pain in thighs as a b12 defdeficiency symptom before? I wish you well ..

[cuddlywuddly]

Sorry..deficiency!

[Marybrown06]

Hey,

I had plenty of pain because of B12 (neck, back, joints -knee, elbow-, hips). My legs muscles were painful as well sometimes. It was sometimes difficult to walk.

After 4 months of oral supplementation I feel better, I only have mild back pain by night so I am quite happy!

I hope you'll feel better soon!

[cuddlywuddly]

Hi marybrown thankyou for ur kind reply ..im glad you are feeling better.. well i have been having spray supplement daily and am having jab at docs on friday ( hydro) would it hurt to have oral supplement between having jabs do you know.. (methyl) my leg pains seemed to have eased off last few days so fingers crossed not sure if symptoms can come and go with this.. i only started having jabs in November