Is it B12?: Hi, I've recently come... - Pernicious Anaemi...

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Is it B12?

xxkiexx profile image
xxkiexx

Hi, I've recently come across this forum and was hoping I could get some help. A back story. I woke up one day in September with a pain in the right side of my Jaw and side of my head, my vision was distorted but I couldn't pin point why (no double vision, no black spots) it was just off. Then I started to feel it under my collarbone and into my shoulder and down my arm and that whole general area, i would wake up exhausted and could barely move without feeling dizzy, my heart would beat out of my chest or miss beats and I would get breathless. I visited the doctor and was told I've probably trapped a nerve, take some paracetamol and wait a few months. I felt no better. Skip forward to last month after 5 odd months of feeling awful constantly -now with a crawling feeling all over including my forehead- I spoke to a doctor about if it could be Fibromyalgia as it has been a rough 2 years. He said he wanted to test for vitamin d before he can make a diagnosis. For my own sanity I looked up symptoms of vitamin D deficiency and although I could relate to some i wasnt convinced so I kept digging and came across a YouTube video about b12 deficiency. As I watched the video I found I was relating to everything that was said and that it is common in Vegetarians and Vegans. I've been Vegetarian since I was small and rarely eat dairy except for milk in my tea so it all made sense. I immediately started supplements and asked for the b12 test too. It came out at 428 11 days after taking supplements. The doctor said its not a deficiency as supplements would take around 6 months to show on a blood test and im mid range but I dont want to tell them "well I've seen this on Google". The last doctor I talked to told me "you will get it from some vegetables" which left me speechless. So que to today, im left with a numb little toe and little finger, intermittent weird feelings on my forehead and legs, still not feeling great although I do feel like I have improved with the supplements but not enough and my doctors don't want to know. Sorry for such a long post im just at the point that I'm feeling like I am just going crazy and there's not actually anything wrong with me and doctors have constantly dismissed me everytime. 😓 I've even been offered therapy. I'm so fed up!

72 Replies

I'm going to add a list of symptoms as my post was all over the place like my brain at the moment. Sympoms include: Crawling feeling mainly in legs and forehead, a tight feeling from my head to my little finger on my right side like an elastic band that is fully stretched, tremors in my arms and legs, numb little toe, random sharp pains everywhere like someone is jabbing me with a hot knife, dizziness, tiredness, heart palpatations, breathlessness, recently started to feel a pretty intense tingly/pins and needles feeling right next to my left eye and around the temple area. There are probably more but those are the main ones.

Your symptoms certainly could have been caused by a dietary B12 deficiency.

Your doctor is talking nonsense when they say that it would take 6 months for B12 from supplements to show up in your blood. What he may have meant is that it can take 6 months to show relief from some symptoms.

The good news is that you can obviously absorb B12 from supplements. The problem is that you can only absorb about 10 mcg at a time. So I would recommend taking your B12 pills three times a day and keep a symptom diary. After three months, is your symptoms are fading then you should be OK changing to one a day.

If your symptoms aren't any better then you need to be referred to a neurologist.

xxkiexx profile image
xxkiexx in reply to fbirder

I've actually been using the patches, would that make a difference? I did initially get 1000mcg normal tablets and only took one before I looked into it but changed them for 1200mcg patches and 5000mcg sublingual. I've just purchased some 5000mcg patches. I've only really known about it for 3 weeks, until the research id never even heard of b12 😐

fbirder profile image
fbirder in reply to xxkiexx

B12 cannot be absorbed from patches. Not even a little bit.

Sublinguals are identical to tablets - you only absorb anything from them because you swallow it.

xxkiexx profile image
xxkiexx in reply to fbirder

Oh really?! Wish I knew that before wasting my money!! I thought sublingual were absorbed through glands under the tongue?

fbirder profile image
fbirder in reply to xxkiexx

No. They are supposed to directly cross from the mouth, across the lining of the mouth, into the bloodstream. They don't because the B12 molecule is too large. Which is a shame, as nobody would need injections if they worked.

xxkiexx profile image
xxkiexx in reply to fbirder

I wish I would have found this site sooner! So much conflicting information everywhere. I will try and find a lower dose. Thankyou for your help

xxkiexx profile image
xxkiexx in reply to fbirder

If I were to take tablets 3x daily what strength should I take?

fbirder profile image
fbirder in reply to xxkiexx

It doesn't really matter as you can only absorb about 10 mcg at a time. Ideally 50 mcg would be best, but it's difficult to find that low a dose. So go for the cheapest that strength, or above.

xxkiexx profile image
xxkiexx in reply to fbirder

Also the doctor definitely said "You would have to be taking supplements for around 6 months for them to show that kind of level". She said it was total B12 and when I asked if I could have an active b12 test she said they don't do them.

fbirder profile image
fbirder in reply to xxkiexx

Not many places will do an 'active' B12 test because it's much more expensive and doesn't really tell you much more than the standard test.

Nackapan profile image
Nackapan in reply to xxkiexx

You can obtain 50mg abd 100mg b12 tablets from most chemists I was asked to buy them by Gp once .They are behind the counter!

About £6 for 50 as classed as pharmacy non prescription cynocobalamin.

Just for information.

All of your symptoms are familiar.But loads of symptoms overlap with loads of other things.

So beast to rule out other things with your doctor too.

I'm hoping the b12 tablets are helping.

My sister stayed healthy on a vegetarian diet for 57/58 years . Then

She had trouble with her arms especially and a few more symptoms. Low mood .less energy. Very good diet. Took some supplements,not sure how often.

I'd become very ill so was asking everyone to get a b12 test.

Hers was low 115 just before tipping point i think

Caught in time with oral b12 tablets of higher doses . Went up in the 400s in about 3 months when next blood test was dinr.

So she could absorb them.

She was back to her 'normal' quickly well it may have been a few months but very quick .

She never misses a day of taking them now !!

I truly believe in our cases something changed after the menopause .

My daughter this wasn't the case.

Shes on injections. Wasn't able to absorb foid or tablets

Also niwc needing a very restricted diet fir health/medicsl reasons .Avoided bring tube fed.

Fortified almond milk has been her saviour at times . Seeds . Tofu ect.. a completely new way of eating.

Perhaps with the oral tablets look into a slightly more varied vegetarian diet.

You might know all of this. You might be a an expert on nutrition?

We all have to take stock at times.

I've experimented with some new foods and different mixes of foods.

Thought worth mentioning as we all clutch at straws in times of illness.

Not sure if youtaking any other supplements but a standard multivit and vitamin d addressed woukd help maybe.

Also was everything else okay oour bloods folate ferritin iron ect

Get a print of your blood results.

I truly believed with a good diet I didn't need to supplement.

Infact I was told several times by Gps not yo bother as they all end uo down the pan??? I asked when getting more snd more weary and having falls and lots of vision problems!!!

So it's good they did your bloods.

They should now monitor and refer on if necessary

Mine wernt done even though I'd not been to the Gp for 7 yresrs.

Even stranger I didn't ask either ??

I'm really hoping in your case its a case of taking b12 in the way fbirder has suggested and you will get the best absorbtion with the best improvements.

Keep a symptom diary.

You know your body.

Go back to the Gp and don't get fobbed off.

Take care

Let us know how you get on.

xxkiexx profile image
xxkiexx in reply to Nackapan

My folate was 8.2, ferritin was 2.1. I'm not sure of the results of the others but was told they're all fine other than raised cholesterol. I did however start to take a multi vitamin at the same time as the b12 so again I dont know if that would make any difference.

Nackapan profile image
Nackapan in reply to xxkiexx

Your ferritin is below range. If using the sane measurement as I had.

The range and measurement from my blood form. 11-307 Ug/L

So could explain alot of your symptoms Have you been prescribed iron supplements?

If not discuss with your G.p and ask about HB too. Iron is complex and blood monitoring needs 3 monthly if on supplements

Ferritin is a protein/store of iron. An indicator

I was told to keep it above 50ug/L

Alot of my symptoms went when it reached 40ug/L lkke out of breath palpitations crawling flesh. Restless legs.

Google symptoms of low ferritin.

Do discuss with your doctor.

So if the sane measurement very low.

The ratio the most important fir cholesterol. I'm trying yo lower mine.

Also thyroid levels if mot already done.

I'm sure Gp would've done this.

Hope you have your print out of blood resukts

.

xxkiexx profile image
xxkiexx in reply to Nackapan

I havent been prescribed anything, as I mentioned they dismiss me everytime. I was told 2.1 but could I have misheard and it be 21? They said they're fine but I have no idea.

Nackapan profile image
Nackapan in reply to xxkiexx

Get your blood results printed off. My ferritin was 21 ug/L i had slot of symptoms relating to low ferritin

Gp wasn't concerned ad 'in range

Itscwell documented below 50ug/L csn five symptoms in alot of people

Gps know

Crawling legs

Our of breath

dizziness

Csn be caused by low ferritin.

Ask.

Obviously keep up the b12.

Take care

xxkiexx profile image
xxkiexx in reply to Nackapan

I will try my best to get it. Thankyou so much for the help!

nellie237 profile image
nellie237 in reply to Nackapan

Just to let you know..... NICE changed their guidance on "Interpreting Ferritin Levels" last month (Apr 2021) Up from 15ug/L to 30:-

"In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency."

xxkiexx profile image
xxkiexx in reply to nellie237

So if my levels were 21 I could have a deficiency and nothing is being done?

nellie237 profile image
nellie237 in reply to xxkiexx

It really needs to be reviewed with results of an FBC, but yes if your Haemoglobin is on the low end, the ferritin confirms deficiency, and your GP should be looking for a reason for the deficiency.

Nackapan profile image
Nackapan in reply to nellie237

Oh okay. Thanks So the ranges should change on the blood forms.

Mine said 11-307ug/L

I will have a look at the new NICE guidelines.

So xxkiexx shoukd as I thought get back to her Gp.

nellie237 profile image
nellie237 in reply to Nackapan

It will be interesting to see if they change the range - I doubt they will. Mine has been 10-291ug/L since at least 2007. The highest mine has ever been is 24ug/L and only recently prescribed Iron because of coeliac dx. My haemoglobin was always OK though.

NICE guidelines state:-

"Anaemia is defined as a haemoglobin (Hb) level two standard deviations below the normal for age and sex:

In non-pregnant women aged over 15 years — Hb below 120 g/L"

This has not recently changed, yet for the past 9 years the range on my labs has been 110 - 153 g/L . Prior to that it was 120 - 147g/L

xxkiexx profile image
xxkiexx in reply to nellie237

I did have FBC, aswell as Vit d, vit d storage, bone profile, c protein? Something? And a few others. The doctor i spoke to about them said they were all good except my cholesterol. I thought she would have at least wanted to investigate the cholesterol but nope

xxkiexx profile image
xxkiexx in reply to xxkiexx

This is the same doctor that told me I will get adequate b12 from vegetables though so I'm not taking anything from that phone call as gospel.

Nackapan profile image
Nackapan in reply to xxkiexx

They were thinking folate!

xxkiexx profile image
xxkiexx in reply to Nackapan

I spoke to my doctor today regarding ferritin and he said I'm on the lower end of normal (even though I mentioned the NICE guideline change) theyre ok. I asked if I could get symptoms from a level like that and he said no because my haemoglobin level is OK. He wants me to get a blood test for rheumatoid arthritis and I'm not completely sure why. Even when I told him my diet was poor he said no definitely not a vitamin deficiency. Then I came across this video not long ago.

youtu.be/nQXgKfPGK18

Nackapan profile image
Nackapan in reply to xxkiexx

My hb was okay but my ferritin dropping gave me symptoms. Speak to another doctor for a second opinion when this one has run the tests they want to do.

It is good to rule out other things.

Also try and get your diet improved.

Youve got alot of information now which I hope helps you.

It's getting a doctor to work with you

This one is investigating other things at least. .

xxkiexx profile image
xxkiexx in reply to Nackapan

I'm considering changing doctors at this point just on the off-chance someone will take me seriously.

nellie237 profile image
nellie237 in reply to xxkiexx

The best advice I have received re my health is to get copies, or better still, access to online test results. 'In range' does not necessarily mean OK.

I haven't read through your posts......so, apologies if somebody has already mentioned it, or you've been tested. .......High cholesterol is often a symptom of Under-active Thyroid (aka Hashi's). Hashi's is known to cause low stomach acid, leading to gut absorption problems.

xxkiexx profile image
xxkiexx in reply to nellie237

I also requested a thyroid check as my Auntie has hyperthyroidism and I wanted to rule out everything but apparently I had it tested at the end of 2018 so she wouldn't do it again. My reason for requesting cholesterol was everyone on my paternal side had it but she got funny because I was tested under 40 because they don't do that but in order to be referred my dad had to be under 40 when he was diagnosed. You know, for the thing they don't test for under 40. Believe me when I say I feel 10x worse after speaking to the doctors.

nellie237 profile image
nellie237 in reply to xxkiexx

Your dad has Familial hypercholesterolaemia? and the GP got funny about testing your cholesterol. WTF.

I know I'm repeating myself, but you really need to get copies of all your lab reports for the past few years. GP's don't even look at them unless they are 'out of range'.

You don't need to ask the GP, ask reception if you can get on-line access...(not all surgeries are set up for it).....it usually means filling in a simple form and providing ID. If you can't get online access, ask reception to print off your results. If you are in England (not Scotland/Wales) you are legally entitled to these without having to pay. Just say that you want them for your records.

xxkiexx profile image
xxkiexx in reply to nellie237

The doctor that requested the blood test when I mentioned it seemed ok with it and it was mentioned on the blood form 'testing due to family history' but the one that gave me the results didn't seem happy at all I was tested under 40. Wanted answers about my dads history but he passed away in 2018 and my grandparents history but they passed away 20 and 21 years ago. Because I couldn't give them said she can't refer me, didn't ask about diet etc didn't do anything.

nellie237 profile image
nellie237 in reply to xxkiexx

Mmmn, Sometimes I think it just depends on whether the Dr is having a bad day, try not to let it get to you.

Nackapan profile image
Nackapan in reply to nellie237

Yes ive suggested that too. (Getting copies of blood results)

Marz profile image
Marz in reply to xxkiexx

Raised cholesterol can indicate LOW Thyroid. Ask for copies of all your test results - you are legally entitled to have them. Low Ferritin - Folate - B12 and VitD could also point to Low thyroid or auto-immune thyroid - Hashimotos. Hashi's can affect absorption of nutrients.

xxkiexx profile image
xxkiexx in reply to Marz

I had a thyroid check in 2018 which was normal so they won't check it again

Marz profile image
Marz in reply to xxkiexx

Normal is an opinion - not a result ! So you need to know the actual test and the result. Private on- line testing is available - used by thousands on Thyroid UK Forum here on HU.

thyroiduk.org

The tests needed are TSH FT4 FT3 and the antibodies TPO & Tg. Did you have all these tests ?

xxkiexx profile image
xxkiexx in reply to Marz

Absolutely no idea. I'm going to try and get my results sent to me. As mentioned any dealings with my doctors seems like a mammoth task currently

Marz profile image
Marz in reply to xxkiexx

You can apply via Reception to have your results on-line. Ask them to email you the forms to complete.

xxkiexx profile image
xxkiexx in reply to Nackapan

I've just had a quick look and yes I do have all of the symptoms. The tinnitus is especially noticeable when I go to bed. Is there a connection between ferritin and b12?

Nackapan profile image
Nackapan in reply to xxkiexx

I've never had low ferritin before I had b12 deficiency. I think once your body isn't absorbing enough from food it cdn affect levels of several vitamins and minerals as well.

I would definitely discuss iron supplements with your Gp.

And ferritin levels

nellie237 profile image
nellie237 in reply to xxkiexx

Yes, the simple answer is that B12, Iron and folate are all needed for the production of red blood cells.

xxkiexx profile image
xxkiexx in reply to Nackapan

The more I've thought about your reply the more its making sense to me. Things I didnt think about at the time. I've got 5 children, every pregnancy after the standard blood tests I was put on iron tablets. In 2007 I had a miscarriage, got pregnant again quite fast after that and bled from 6 weeks to 16 weeks. After my daughter was born I fell ill but put it down to a family tragedy. I obviously recovered from that but looking back how I felt wasnt too different to how I feel now, less the crawling feelings and numbness. When I gave birth to my 5th child in 2013 the midwife told me they were concerned my bleeding took a while to stop after delivery and I was very close to needing a transfusion. Also I've had periods of breathlessness for the last 3 years and its always around the time of my menstrual cycle. Up until this post I had never heard of ferritin! I'm going to request all my blood test results from all my pregnancies and check the levels. Its over a period of 21 years!! This could finally be the information I need to be listened to. Thankyou so much!!

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

Link about B12 deficiency and pregnancy

(Some details may be upsetting)

b12deficiency.info/b12-and-...

Also wondered if you used gas and air mix as pain relief during labour. Gas and air mix contains Nitrous Oxide. Nitrous oxide inactivates B12 in the body.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Yes, I did use gas and air but I haven't been pregnant for 8 years. I've spoken to my doctors again today and they have confirmed low iron deficiency after checking my ferritin levels through my pregnancies (the only time I've had those checks throughout my life) at the lowest it was 7.8 and at the highest it was 32 over the period of 21 years. I've been told to take ferrous fumarate 3 times a day and have a retest in 3 months but after taking just one I feel awful. 😔

Hi,

Some links that might be of interest.

I'm in UK so some links may have info that is specific to UK.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

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.

Vital to get adequate treatment for B12 deficiency.

Untreated or under treated B12 deficiency can lead to an increased risk of permanent neurological damage including problems with spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PA is an auto-immune condition that can lead to B12 deficiency.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

B12d.org ( a UK charity) has held some online support meetings during pandemic.

Not sure if these are still happening.

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Link below mentions some support groups in other countries.

b12deficiency.info/very-use...

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).

"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.

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Do you mind me asking which country you are in?

The reason I am asking is that patterns of treatment for B12 deficiency vary from country to country. Sometimes the type of B12 used in treatment can vary.

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou, I am also in the UK.

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

As you're in UK, I suggest you read these documents if you have time to

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BSH document has some useful diagnostic flowcharts.

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

Low dose cyanocobalamin tablets are sometimes used to treat dietary B12 deficiency.

My understanding of UK guidelines is that a person with severe B12 deficiency due to diet, where there are neurological symptoms ,should be getting B12 injections.

BNF Hydroxycobalamin

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

See section on "neurological involvement" if neuro symptoms are present.

NICE CKS B12 deficiency and folate deficiency

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

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates covering a variety of situations linked to B12 deficiency.

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

"My folate was 8.2, ferritin was 2.1. I'm not sure of the results of the others but was told they're all fine other than raised cholesterol. "

Your ferritin result seems low although I can't see a reference range.

Iron Studies

labtestsonline.org.uk/tests...

Did the GP comment on this?

Best advice I ever got was to always get copies of all my blood test results.

I was told everything was normal and then found abnormal results when I got copies.

In relation to B12 deficiency, I look particularly at B12, folate, ferritin or other iron tests and Full Blood Count (FBC).

Sometimes it's helpful to compare past results with current results to see if there is a trend.

I can tell you from personal experience that it is possible to have severe B12 deficiency with an in range serum B12 result.

It's possible to have Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

Guidelines below suggest that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease. Have you been tested?

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Neuro Symptoms

You mention crawling feelings and numbness which would usually be considered as neurological symptoms. Medical name for crawling feelings is formication and it can be associated with neuropathy (nerve damage).

Do you have any other neuro symptoms? See Symptoms lists in other reply.

Make sure your GP is aware of all your symptoms especially any neurological symptoms including any affecting spinal area.

Each CCG/Health Board/NHS Hospital trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area of UK and compare them with BSH/NICE CKS and BNF links.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou for the advice. I've all but given up with my doctors at the moment. No set doctor, everytime is a locum I have to explain everything to, to be told something different everytime as they don't appear to like reading notes. Also no face to face appointments. 7 calls, 7 doctors, 7 lots of being fobbed off.

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

I'm sorry that you have not had the support you needed.

Might be worth putting your concerns into a letter. See letter writing link in my second reply.

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou, I will do that.

Nackapan profile image
Nackapan in reply to xxkiexx

Thats exactly what I have to do to get anything sorted. Scanned on notes then talk to your doctor. Or a doctor.

Have to read it .

ClareP5 profile image
ClareP5 in reply to xxkiexx

If they’re not helping go solo with the help of all the lovely people on here. My GP doesn’t appear to believe in B12 deficiency or hypothyroidism. Got told by a locum to read up on menopause symptoms even though due to an operation they knew I’d been through that 14 years earlier!

Gambit62 profile image
Gambit62Administrator

Please note that this forum is really for people with absorption problems rather than dietary deficiencies caused by lack of B12 in the diet.The treatment for dietary deficiency in the UK is 50mcg 2 or 3 x daily.

I would suggest that you also modify your diet in future to include more dairy and eggs. A lot of breakfast cereals are fortified with B12 as well.

The caveat would be that being vegetarian or vegan doesn't mean you are immune from developing an absorption problem - the treatment for which is somewhat different.

xxkiexx profile image
xxkiexx in reply to Gambit62

Apologies, I really don't know anything about it other than I fit the symptoms and my doctors won't help. I was just hoping to get some advice from people that knew rather than keep googling and be given worst case scenarios.

Gambit62 profile image
Gambit62Administrator in reply to xxkiexx

apologies if that seemed harsh - the treatment and issues around dietary and non-dietary deficiency can be quite different, though the lack of understanding around B12 is a common factor

My understanding of BSH guidelines is that patients with neuro symptoms should be on every other day loading jabs until symptoms stop improving followed by a jab every 2 months.

As BSH/BNF treatment pattern below does not specifically exclude patients with neuro symptoms whose deficiency is due to diet, I'm assuming that the treatment pattern should apply to any patient with B12 deficiency with neuro symptoms, whatever the cause of their B12 deficiency.

"The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. "

"Those with initial neurological deficit should receive hydroxocobalamin 1000 μg i.m. every 2 months. "

You have mentioned some symptoms that would usually be considered as neurological in your posts.

Link below is about writing letter to GP if under treated for B12 deficiency with neurological symptoms.

b12deficiency.info/b12-writ...

Neuro symptoms can include the following .....

tingling

numbness

pins and needles

burning sensations

insect crawling sensation (formication)

electric shock sensation

tinnitus

muscle twitches

muscle fasciculations (ripple like movement of muscle)

flickering eyelids

restless legs syndrome RLS

periodic limb movements (limb and digit jerks)

migraine

vertigo

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

word finding problems (nominal aphasia)

balance issues

brainfog

proprioception problems (problems with awareness of body in space - proprioception is sometimes called position sense)

There are many other possible neuro symptoms that can be associated with B12 deficiency.

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou, I dont know if it also ties in but I also have had hyperpigmentation on my face for the last 2 years, I had it when I was pregnant but I havent been pregnant for 8 years! My muscles do jump usually when I'm sat watching tele and the eye twitches are annoying! I'm speaking to yet another doctor this afternoon so maybe this one will help. 8th times a charm!

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

I have come across articles that suggest an association between hyperpigmentation with B12 deficiency.ncbi.nlm.nih.gov/pmc/articl...

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

B12 deficiency can also be associated with vitiligo where there is a loss of skin pigmentation.

"7 calls, 7 doctors, 7 lots of being fobbed off."

"I'm speaking to yet another doctor this afternoon"

If your appointment this afternoon is unhelpful, might be worth writing to GP. Might be harder for them to fob you off as letters to GP are supposed to be filed with your medical notes.

More about writing letters.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place."I'm speaking to yet another doctor this afternoon"

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou for the advice. My phone call this afternoon wasn't particularly helpful. I did mention about neurological symptoms and injections and he said if I had neurological symptoms from a b12 deficiency I'd be on an iv getting a transfusion. The more I write the more I feel like I should be making it up. I do want to send a letter but I dont have one particular doctor im able to send it to. Every doctor I've spoken with is different.

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

"I do want to send a letter but I dont have one particular doctor im able to send it to"

I think you are probably registered with a particular GP so even if you see others, I suggest writing to your registered GP.

If you don't know who your registered GP is then you could ring the GP surgery and ask them...it will be in your medical records.

You could write to the senior GP at the practice. Should be something on GP surgery website that tells you who this is, or write a letter addressed to more than one GP you've seen.

Some people on forum have been helped by the person who runs B12 Deficiency Info website.

Lots of useful info on PAS website.

pernicious-anaemia-society....

xxkiexx profile image
xxkiexx in reply to Sleepybunny

I have all of these

tingling

numbness

pins and needles

burning sensations

insect crawling sensation

tinnitus

muscle twitches

muscle fasciculations (ripple like movement of muscle)

flickering eyelids

restless legs syndrome RLS

periodic limb movements (limb and digit jerks)

migraine

vertigo

clumsiness

dropping things

bumping into things

strange gait (unusual way of walking)

(If this means walking kind of flat/heavy footed which isnt normal then yes this one too)

balance issues

brainfog

Plus hyperpigmentation

White patches on my arms and a couple on my arm.

I will be presenting with a list but I'm never offered a face to face appointment. Its always phone unless there's something they need to see.

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

"he said if I had neurological symptoms from a b12 deficiency I'd be on an iv getting a transfusion."

B12 transfusions are not the NHS usual treatment for B12 deficiency although they do exist...

You could point out to GP that his BNF (British National Formulary) book lists the standard treatment for B12 deficiency with neuro symptoms in Chapter 9 Section 1.2 which is every other day loading jabs for as long as symptoms continue to improve then a jab every 2 months.

With normal range results your GP is probably going to be reluctant to consider giving you B12 injections.

If this happens, you could point out these statements from summary in BSH

Cobalamin and Folate Guidelines.

"The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. "

"Those with initial neurological deficit should receive hydroxocobalamin 1000 μg i.m. every 2 months. "

You mention white patches on your arms....have you been assessed for vitiligo?

Vitiligo is an auto immune condition that leads to loss of pigment in the skin.

Vitiligo can be associated with PA(Pernicious Anaemia). PA is also an auto immune condition.

Has your GP given you any screening tests for auto immune conditions?

The possibility of a thyroid condition was mentioned on this thread. I suggest putting any thyroid results you have on the Thyroid UK forum on HU.

Is there a family history of auto immune conditions?

If yes to a family history, I would be surprised if your GP did not consider the possibility of PA and Coeliac disease, both auto immune conditions that can lead to B12 deficiency.

It is possible to have more than one cause of B12 deficiency at the same time eg diet and an auto immune condition.

Neuro Symptoms

Has your GP referred you to a neurologist?

You could put in a polite request to see a neurologist in writing to GP along with a list of all your neuro symptoms.

Putting the request in writing makes it harder for the GPs to ignore the request.

A warning....hopefully you'll get a good one but my impression is that there is a lot of ignorance about B12 deficiency among specialist doctors. I saw several neurologists but all apart from one missed the typical symptoms and the one who thought it was a possibility was not able to give me a confirmed diagnosis.

Are you keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received? Can be useful evidence of deterioration or improvement in symptoms to show GP.

Might be worth asking to be assessed for SACD, sub acute combined degeneration of the spinal cord.

I am not saying you have SACD, I am not medically trained .

I am saying that your GP should be aware that SACD is a possibility in patients with B12 deficiency from whatever cause including diet.

See PAS leaflet on SACD below for more info. Perhaps GP would like a copy?

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Might be worth trying to film some of the symptoms to show GP/specialist eg periodic limb movements etc as symptoms don't always show during a neuro examination.

If you get a referral to a neurologist, ask them to check your proprioception sense (also known as position sense). Problems with proprioception can be associated with B12 deficiency.

Two tests that can help assess proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed

Vital that these tests are only carried out by a doctor at medical premises due to the risk of injury from loss of balance.

Don't try them at home. I stupidly did and almost walked into a wall.

If neurologist does not carry out any tests where patient's eyes are closed then it's unlikely that proprioception sense has been fully tested.

Videos of these and other neurological tests on Youtube.

I hope you will soon get the support you need.

xxkiexx profile image
xxkiexx in reply to Sleepybunny

Thankyou, im going to keep pushing. As far as tests are concerned he wouldn't even hear me out due to my test results being 'normal'. Told me to go and get the rheumatoid arthritis blood test done, which I still don't understand why, as he asked me do your hands hurt? I said no but I get a pins and needles sensation but I get it In my legs and head also. He said do you feel stiff when you wake up in the morning, again I answered no. He will see me for a face to face appointment in 2 weeks when those results are back. Maybe I can convince him then!

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

" im going to keep pushing"

I'm glad to hear it.

"Told me to go and get the rheumatoid arthritis blood test done, which I still don't understand why"

It could be that your GP is trying to exclude other possible explanations for your symptoms. Maybe this is a good thing.

If your GP won't listen to you then consider a letter.

If he gets a letter before your next appointment it gives him time to think about any questions you ask and hopefully he can answer them during the appointment.

Some GPs find assertive patients who ask questions difficult to deal with so be prepared for GP/patient relationship to come under strain.

Changing GPs

nhs.uk/common-health-questi...

Have you tried asking him directly what he thinks is causing all your neurological symptoms?

Perhaps you could ask him if B12 deficiency could be causing some or all of them.

GPs and specialists sometimes have misconceptions about B12 deficiency.

See links below which discuss common misconceptions health professionals have about B12 deficiency and be prepared in case your GP has misconceptions.

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Misconceptions about a B12 deficiency

(from Dutch website- units and reference ranges may vary from those in UK)

stichtingb12tekort.nl/engli...

There are other useful articles on above website.

If you have time, I suggest reading some of the other posts on the forum.

Just found another English article from different Dutch website about difficulties in diagnosis and treatment of B12 deficiency.

Units, ref ranges, treatment pattern may vary from those in UK.

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

I've just had a message from my doctors saying my Vit D is borderline low but doesn't require high strength prescription and I should get some over the counter.

Nackapan profile image
Nackapan in reply to xxkiexx

Yes a good idea to take it daily get re tested in 3 months

You have the problem of not receiving a diagnosis which explains the cause of your symptoms. Your symptoms seem to be and may be of Vitamin or mineral deficiencies but that has not been established.

You need access to medical resources which can establish a diagnosis. Then the matter of treatment can be determined or debated.

This may require referral to a specialist.

With all sincerity, I wish you good luck in this pursuit.

xxkiexx profile image
xxkiexx in reply to Lyntwo

Thankyou, I've just spoken to the doctor but he says its not vitamin related and has ordered blood tests for rheumatoid arthritis...

Sleepybunny profile image
Sleepybunny in reply to xxkiexx

Hi,

The BSH guidelines make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 result is within range, in order to avoid neurological damage.

There is a line in the summary below which says

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Perhaps your GP would like a copy? Maybe with the the line about treatment highlighted.

You have mentioned the following neuro symptoms that can be found on B12 deficiency lists.

Tinnitus

Crawling feeling (could be formication?)

Tremors

Pins and needles

Tingling

Dizziness

Numbness

Do you have any other symptoms that are consistent with B12 deficiency?

See Symptoms lists in other reply.

I had severe B12 deficiency with most results well within normal range eg 300 - 500ng/L so really struggled to get GPs to listen...this was despite having over 40 typical symptoms.

Have you given your GPs a written list of all your symptoms, highlighting any neurological symptoms?

You could draw their attention to the increased risk of permanent neuro damage such as spinal cord damage if B12 deficiency is untreated or under treated.

Maybe they would consider giving you a trial course of B12 loading injections to see if this makes a difference?

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