Pernicious Anaemia Society
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Neurological symptoms and b12

Hi, last b12 blood test reading back in Dec was 174. Doctor said it wouldn't account for my numb toes. Saw a neurologist in Feb who diagnosed poly neuropathy. In March my fingertips began losing sensation. I read about possible links between both propranolol and omeprazole and neuropathy and stopped taking both. Persuaded my GP to give me a b12 loading dose. I felt a huge lift in mood and an improvement in the numbness. Last injection 29th March. Tried unsuccessfully to get further injections. I feel like a junkie trying to get a fix. I honestly believe heroin would be easier to come by than b12. Today depression has hit me like running into a wall. Is this normal? Is there any hope of recovering sensation after such a long time?

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Hi ABC852031

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

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Thank-you Clivealive. I tried reasoning with my gp and he said no to injections but that he would write to my neurologist. I've booked to see the neurologist in hopes of speeding things up. Trouble is either he's a rotten neurologist because he's ruled out b12 deficiency or he's right and nothing can be done. Either way, I'm screwed (pardon the Vernacular)!

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I'm going to change the quotation from the Bible, Luke 4:23 (King James Version): "Physician, heal thyself:" to Patient, heal thyself"

You began to feel a benefit from the B12 injection and symptoms returned after they stopped - there's a clue there.

Many folk on here self inject and you cannot overdose on B12 as any excess is excreted via your urine

Was your Folate level ever checked?

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Not as far as I know. I just feel like such a drama queen. Maybe the only thing wrong with me is hypochondria. My husband is taking me to a private gp tomorrow in hopes we can get him to prescribe and thereby get some breathing space.

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If you can get B12 sublingual over the counter get the 5000mg.

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I had a reading of 150 B12 blood serum , and had numb feet and ankles .Had to go to Private GP to get diagnosis of PA .You most likely have got B12 deficiency from taking Omeprazole , which nullifies your stomach acid., which is desperately needed to absorb B12 , the most difficult vitamin to absorb . I could only get one injection every 3 months , as my doctor wouldn’t agree that my numb feet were a neurological symptom . So I had to take matters into my own hands and self - inject Hydroxocobalamin once a week . I’m glad to say that the numbness has gone, and I’m just left with burning feet , which doesn’t bother me too much . At least I can keep driving my car. So I can offer you some hope with your feet . But you will need plenty of injections , which are difficult to get . But if caught in time you could get rid of the numbness. Best of luck .

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Thank-you Wedgewood, I think you're right about the omeprazole. I really wish I'd had my levels checked before the loading dose because it might have been easier to get taken seriously with a lower reading. By coincidence my mother had b12 deficiency. My doctor assures me it's not hereditary, though I'm starting to lose faith in the medical profession as it seems likely they poisoned my nerves in the first place.

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Your doctor is wrong, my mother has it, I have it, my oldest son and my youngest son all have pernicious anemia. My levels taught my sons not to mess with it because mine went to "no detectable" So as soon as they began to get symptoms, they had the blood tests done.

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God, you must have felt rough! Your sons were lucky because like me they knew what to look out for. My mother had it and so by coincidence does my husband. Otherwise I'd have accepted my gp saying my deficiency wasn't significant.

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Pernicious Anaemia , an autoimmune condition can DEFINITELY be genetic . Not necessarily from a mother or a father , but genes can hop generations as we know . Maybe you have P. A. It’s quite difficult to diagnose in some people as when tested for it (Intrinsic Factor antibody test ) people can have a negative test when they actually do have the condition . I have lost faith in the medical profession too , since my encounter with P.A. But Omeprazole and other PPIs are causing terrible health problems . We need plenty of stomach acid to help us absorb our food . We produce less as we get older. When this happens , the sphincter that closes when it detects acid, doesn’t close as tightly as it should , and allows some acid to escape, causing “heartburn” / acid reflux .Although this acid isn’t as concentrated as it should be , it still burns the oesophagus, so antacids and PPIs are prescribed . These medicines make the pharmaceutical industry billions. Low acid stomach need plenty of cid to make the oesophageal sphincter work properly . Some people with low stomach acid ,take acidic drinks for this, or even betaine hydrochloric capsules with pepsin . Also good for the tummy are probiotic foods , or failing that , probiotic preparations like capsules etc., Our stomach health is very very important to our whole health . I’m getting boring now ! I’ll go !!

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Not boring at all. People like you and Clivealive are saving my sanity.

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To ABC852031 and clivealive

And drive you mad with his puns.

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Are you calling me a "pundit" beginner1? Or am I just a "sage" that knows his onions as I'm often being told to "get stuffed" :)

Seriously though "Laughter is the best medicine" and "It's being so cheerful as keeps me going" – said by Mona Lott, a depressed laundrywoman in ITMA - a steam radio programme from the 1930s/40s which I listened to whilst growing up as a boy in Birmingham where "punning" comes as a second nature.

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clivealive I was laughing in anticipation even before I had read your junk.

You see what I mean ABC852031

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Now I'm a Chinese sailing craft.....^....

Goodnight and God Bless.

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...I'm beginning to!

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Hi you are not boring I also have pa and under active thyroid also being tested for diabetes but it helps to talk about stuff

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Not boring at all.

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You are not screwed.

I had much the same happen to me. GP's ignorant and consultants not much better.

I got very good advice here - how to try and educate your GP and if that does not work to self inject.

Follow the stomach advice, make sure other vitamins are not deficient and a proper amount of B12 will keep you cheerful.

Keep your chin up.

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Thank-you, feels such an uphill struggle today. Will persevere.

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If you want to consider sel-injection , you can get the information here . It’s cheap if you are able to buy in bulk. ( about £1.00;a shot including everything ) Perhaps you can get you GP to give a prescription for the Hydroxocobalamin ampoules if he/she will not give you shots , , otherwise the only way to get them is from an online German pharmacy . Anything injectable can only be obtained on prescription in U.K. In many other countries the B12 ampoules are obtainable over the counter. It’s horrible to have numb feet . There is also the danger with them of tripping and falling. Needles , syringes etc are obtainable in U.K. . Give it some thought .

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Unless I can get rid if the tremor, I think self injecting is out. Never mind being a real sissy! My hope is that if my b12 problem was drug induced and I get treated now, I may not need maintenance doses in the future.

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Hi, just on the German site & can't see the UK as a shipping option, how did you get them? x

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Which German site are you on ? I have used versandapo.de and mycare .de and they both ship to U.K. . I haven’t used any others .

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Thanks, I have worked out how to translate the page & sorted now (not v technically minded lol!) I've ordered - feel so relieved to have seen all this, I was actually searching for a clinic to get private injections & they are so expensive! You are a star for posting all the info and advice, I wouldn't have had a clue but the needles were easy to find on Amazon so fingers crossed. Take care xx

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Best of luck to you , I had to go down the S.I. route too . I buy 100 ampoules at a time . They have about 2 1/2 years use by date .

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Hi,

Some B12 info that may be of use. I've assumed you're in UK.

Link about What to Do Next if B12 deficiency is suspected.

b12deficiency.info/what-to-...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had tests for PA (Pernicious Anaemia)? See BSH Cobalamin and Folate Guidelines link.

Tests for Coeliac disease?

NICE guidelines link suggests doctors should test anyone with unexplained b12 or folate or iron deficiencies for Coeliac disease.

n UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

coeliac.org.uk/coeliac-dise...

Tests for H Pylori infection?

patient.info/health/dyspeps...

Thyroid tests?

Symptoms of thyroid disease can overlap with those of B12 deficiency.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

UK B12 documents

If you're in UK, I'd suggest reading all of these. More B12 info in pinned posts on this forum.

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...

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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world. Lots of useful info on website.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

"my numb toes. Saw a neurologist in Feb who diagnosed poly neuropathy"

In UK, people with b12 deficiency with neuro symptoms are supposed to have more intensive treatment. See BNF link and BSH Cobalamin and Folate Guidelines link for more details. BSH Cobalamin and Folate Guidelines and BMJ B12 article emphasise that people symptomatic for b12 deficiency should be treated with B12, even if B12 is within normal range.

Untreated or under treated b12 deficinecy can lead to further deterioration including spinal problems.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Letters to GP about Under treatment of B12 defic with neuro symptoms

b12deficiency.info/b12-writ...

"last b12 blood test reading back in Dec was 174"

Was it 174 ng/L?

Access to Medical Records (England)

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

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

I am not medically trained.

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Yes, it was 174ng/l although that was back in December, if symptoms were anything to go by, I suspect it might have been lower before loading dose at end of March.

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Lots to mull over there, thank-you very much. Just a thought, my immunoglobulin a is below range, do you know what that means? Thyroid tests OK, but not sure what else I've been tested for. I assume if I had macrocytosis it would have been picked up on.

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These good people have already covered most of it. The repair of neurological damage is excruciatingly slow. Start a log book and assess your own severity score for each symptom on a daily basis. Monitor your changes and look for improvements over months and years.

Gentle range of motion exercises are needed to stimulate muscles and nerve repair. Do you swim?

How do you feel about self injections? There are quite a few good YouTube videos on self injecting.

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Not sure if I could self inject, nerve problems include tremor. Good to know swimming helps because I enjoy it. Thank-you for your advice.

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A level of 174 is definitely low enough to have symptoms. I began treatment when my level was 176, and I had lots of symptoms. Numbness, aches and pains, forgetfulness, confusion, difficulty with balance, to name but a few. If you felt better with the injections your GP should be taking that into account.

Only about 20% of the B12 in our blood stream actually reaches our cells. So when you look at that figure of 174, it really isn’t that high.

Are you vegan or vegetarian? In that case you could try taking supplements to boost your levels.

Many other countries treat anything below 500 as a deficiency. My own GP treated anything below 200 if the patient was symptomatic.

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Very interesting. I'm not veggie but I've been on meds that prevent B12 absorption. 500 eh? that's a bit different from here!

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Will your GP be open to a discussion if you took someone along with you? The alternative is join the Pernicious Anaemia Society and they can intervene on your behalf.

Incidentally I get a slight tremor when my B12 levels are dropping.

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He might have been but I saw a neurologist this evening and he says that my tremor is a cranial tremor not to be confused with the sort of uncontrolled movement you'd get if it was caused by nerve damage from b12. He said it was unlikely that b12 deficiency alone when my level was 174 would entirely account for the nerve damage. Apparently b12 every other day is only for people with severe neurological problems, if you were bed ridden for example. He says that now I've had my loading dose, the guidelines say I will need an injection every two months. He will write to my gp and recommend it and that is what I will get.

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Just read that back, what a grumpy post! Thank-you so much for taking an interest. I do know that plenty of people out there live with far worse than numb hands and feet. I'm just going to have to face up to it.

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It’s great that you’re getting the help and advice you need. Two monthly injections are good. I hope you will find that the numbness lessens over time. Mine certainly has, and only seems to get bad again if I’m late for my injection or if I’ve been overdoing things.

I wish you well.

MariLiz

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Hi again,

"Just a thought, my immunoglobulin a is below range, do you know what that means? "

What does your GP think is causing your immunoglobulin a to be below range?

PID UK is a UK charity that provides info and support about primary immunodeficiencies

piduk.org/specificpidcondition

"Thyroid tests OK"

I'd suggest putting any thyroid results on Thyroid UK forum on HU.

Which thyroid tests did you have? In UK, doctors sometimes only order TSH test which won't give a full picture of thyroid function. See thyroid links in my post above.

Have you seen the actual results or just been told they are okay? These days I make sure I see actual copies of results.

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Good point, even now I'm far too trusting. Currently trying to get access to my medical records.

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Your neurologist has diagnosed you with polyneuropathy, which is a good first step. The second step is to determine the cause, allowing the third step, treatment, to follow.

There are a lot of possible causes. I assume you've been checked for the most common - diabetes. medicalnewstoday.com/articl...

If the doctor says that it is not B12 deficiency then they need to find out what it is. Demand to have nerve conduction tests, electromyography, MRI, possibly a nerve biopsy test (although I wouldn't recommend that one), tests for all the vitamins that can cause neuropathy if there's not enough (or too much of them), coeliacs disease (although that can't cause you neuropathy, your doctor probably won't know that) and anything else else that might apply.

Or they can start you in a course of B12 injections as recommended by the BNF. They might decide that it might be the easiest (and cheapest) way to get rid of you.

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Sounds like a plan!

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Get sublingual 5000mg, under the tongue, just to be sure you are keeping B12 up. It is possible if your numbness is from B12 deficiency, Nerves that are damaged can heal slowly, nerves that have totally died will probably not recover. Just make sure B12 is not the reason you don't improve. Take it. You can get sublingual over the counter in America, don't know about other countries. Seems to me a lot of countries with socialized medicine will not treat PA the way it should be.

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Certainly all three doctors I've seen are less informed than me and I've only been researching it for a month!

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I found that I needed to prove the B12 deficiency. Or rather why. I have the auto immune PA - no intrinsic factor and high parietal cell antibodies. Pretend to focus less on the B12 injections or tablets and more on why and the doctors will be more helpful. Also remember that you can trust your gut and find a good doc. I'm not sure what country you're in but here in Australia you can legally request a copy of your test results. I do each time and a have a file I take with me to every single appointment. Good luck!

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Thanks for the advice, doctors by and large are a haughty lot. The best way to handle them is to massage their egos and revere their knowledge but take nothing they say as gospel. Too harsh? Maybe I've just met the wrong doctors.

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No , not too harsh . You have made the right assessment of most doctors . I say that because some are excellent . I’ve not met one yet unfortunately. But I do know that they exist.

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So happy I found this thread! I thought I was going mad - tingling and numbness and other symptoms - my GP practically accused me of being an alcoholic due to the size of red blood cells - finally got diagnosed with a hereditary neurological disorder which causes demylination of the nerves and am B12 and folate deficient.

They will still only let me have an injection every 3 months though - it lasts a week tops and then I'm floored again. Injecting myself doesn't worry me so am going to have a look at the german site & hopefully get sorted :-)

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I have those symptoms too and have been diagnosed (via genetic blood test and nerve conduction studies - look up hereditary neuropathy with liability to pressure palsies (HNPP) - there's a couple of good facebook groups for advice but def worth checking out. I also had lanzoprazole for years and am B12 and folate deficient. Good luck x

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Hi Ribblevalley girl, Good luck with it all. I've managed to score two weeks of injections privately to tide me over until I've seen a neurologist. Hurts like hell though, the loading dose jabs from the gp were very quick and relatively painless, these are neither. The consensus seems to be that if there are neurological issues injections are required every other day.

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