Pernicious Anaemia Society
16,291 members11,341 posts

Never felt so poorly 😢

Hi folks I’m very new to the group and currently undergoing blood tests. I have suffered numbness and pins and needles for over 3 years in hands and feet now up to knees and elbows. Have spoke to various gp and met with blank stares and cut down on coffee, it’s nothing to worry about! Anyway two weeks ago I felt very faint I have suffered low blood pressure all adult life so this was not new however what was concerning was the lightheaded and dizziness remained even when the faint feeling left. I went to docs thinking blood pressure had dropped lower however was still my normal, he asked other questions and the numbness and pins and needles were discussed. He then looked at blood tests from 2yrs ago and said all Normal but B12 looked borderline, 150. he ordered more bloods to be done. At home later that day feeling really poorly and convinced I am suffering a terminal illness my husband looked up B12 and I was astounded by symptoms! I am textbook!! I sleep 12hrs at night and another 2-3hrs afternoon when I can. I have been on anti depressants for years and feel like a total lazy worthless loon! So after more tests bloods came back normal B12- 231. Doc said all fine not to worry!! I have phoned and explained I am worried and due to neurologist symptoms demand further investigating as these may be irreversible if left untreated! He has agreed to contact heomotology for advice and will get back to me in a few days!! I am extremely scared my numbness is worse than ever and head full of fog constantly! I don’t know what to do?

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Hi Clarecccc We have several years store of B12 in our liver and the fact that your level climbed from 150 to 231 may suggest that you are able to source it from your food. Are you a meat, fish, seafood, eggs, poultry and dairy eater?

However the serum B12 test is not particularly reliable and you don't quote the ranges <from -- to> do you know what they are?

Wait and see what the haematologist has to say and in the meantime try not to worry and hopefully your doctor will give you the appropriate treatment.

Please come back and let us know how you get on.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75.

I wish you well

.

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Thank you for your reassurance Clive I’m unsure what the ranges are but will check with doc when next see him. I am a meat eater and have a varied diet. Really Hope something happens soon x

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The thing to remember is that a B12 deficiency is very easily treatable but the cause needs to be investigated.

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Hi Clarecccc

I suggest you ask for print outs of your blood tests, they will give the ranges, and put them on here. You are entitled by law to get them.

1 like
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Hi,

Link about What to Do Next if B12 deficiency suspected.

b12deficiency.info/what-to-...

"I am a meat eater and have a varied diet"

"all Normal but B12 looked borderline, 150"

If you eat B12 rich food and your level was only 150 (do you mean 150ng/L) then an absorption problem becomes more likely.

In UK, B12 guidelines recommend treating patients who have the symptoms of B12 deficiency even if B12 is within range.

More B12 info in links below. Some info is specific to UK. It's helpful to know which country you are in as treatment for B12 deficiency varies from country to country.

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...

UK B12 documents

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...

More B12 info in pinned posts on this forum. Useful summary of B12 documents in third pinned post.

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.

"my husband looked up B12 and I was astounded by symptoms! I am textbook!!"

PA

If you think PA (Pernicious Anaemia) is a possibility, may be worth joining PAS and talking to them. In some cases they can intervene on behalf of members and at very least can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

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 test links

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-...

Coeliac Disease

It can lead to B12 deficiency due to effects on gut.

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

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

(UK) NICE guidelines Coeliac Disease (2015 version) recommend testing anyone with unexplained B12 deficiency, folate deficiency or iron deficiency for Coeliac disease.

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

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

H Pylori

Have you ever been tested for H Pylori infection?

patient.info/health/dyspeps...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Lots of useful B12 info in link above plus letter templates if writing to GP.

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/

I agree with beginner1 that it is a good idea to get copies of test results, may be a complete set of medical records.

Access to Medical Records (England)

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

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

"bloods came back normal B12- 231. Doc said all fine not to worry!"

I was told this for years despite having many textbook symptoms, most of my b12 results were between 300 and 500ng, I was quietly deteriorating towards dementia type symptoms and increasing neuro problems.

"I have suffered numbness and pins and needles for over 3 years in hands and feet now up to knees and elbows."

B12 deficiency can lead to severe neuro problems if not adequately treated. Is your GP aware of all your neuro symptoms?

PAS news item about Neuro Consequences of PA

pernicious-anaemia-society....

Neurologist

Have you been referred to a neurologist? It's important to exclude possibility of other neuro conditions.

A word of warning..

B12 deficiency in my opinion is not always well -understood by GPs and specialists so it pays to do some B12 homework.

Do you have someone supportive who can go with you to appts? Even better if they've read up about B12 deficiency.

USA b12 website

b12awareness.org/

Dutch B12 website (has some english language articles)

stichtingb12tekort.nl/weten...

I am not medically trained.

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Thank you for all the links I am working my way thorough them. And the more I read the more obvious it is that I have an issue with my b12, I have expressed my concerns and urgency to the docs and asked for a referral to neurologist. After telling a white lie to the doc that I had a friend who was a consultant at local hospital who sent me bmj recommendations he said he was very concerned about my neuro issues and would take advice from haematology, that was yesterday and haven’t heard anything yet. I am struggling to work and look after my children I feel so so weak as if my whole body is shutting down! Do I just go to a&e? Honestly don’t know what to do for best! I live in Scotland and only discovered today my brother who lives in Northern Ireland is getting both iron and B12 injections regularly and has been for last few years he is currently undergoing tests to see how his body will not absorb the vitamins he needs. This adds even more kudos to this diagnosis! Sorry for rambling it’s nice to hear from people who understand xx

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Your Bl2 def. blood test levels would be considered low or borderline in many other countries and, in any case, to be on the safe side, your neurological symptoms should be treated without further delay to avoid any permanent damage. GPs generally are not up to date with latest research and may not realise that neurological symptoms precede anaemia, which may never appear, so a referral to a neurologist may be more appropriate.

Meanwhile, it might be worth putting your concerns in writing to your GP, so they are on record, including the latest BMJ research document below, as it clearly states that there is NO reliable test, as well as information regarding frequency of injections for neurological symptoms:

"every other day until no further improvement ". (British National Formulary). This is a link to the BMJ summary only but GP would probably be able to access the full document:

bmj.com/content/349/bmj.g5226

UKNEQAS. pernicious-anaemia-society....

You could also include extract from Dutch research:

"vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Very best wishes for better treatment Clare.

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Doc has phoned this evening and I have to go tomorrow to start injections of B12, he said he isn’t certain this is what’s causing my symptoms due to my bloods but is happy to try and monitor my progress with injections as long as I promise to inform him immediately if my symptoms become worse or don’t get better. He is going to wait a week before referring me to neurology. I’m sitting here with numbness over my elbows and up to my thighs and a head like I have a hangover from hell I feel really teary and irritable. But I now have some hope!!! I have been tired and depressed all my adult life but I have functioned and got by! These past 2 weeks have been like hitting a brick wall and functioning seems an effort! Can’t wait till tomorrow maybe just maybe I will begin to feel better and start living my life again!! Here’s hoping 😘🤞

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So pleased for you that your GP will start injections straight away 🤗

You've probably already discovered from your research that B12 deficiency is complex, creeps up subtly over years, so treatment is not usually a quick fix and it can take time for improvement to become obvious - see results of the Dutch research in the pinned posts at the R/H side of the forum. Many of us also find symptoms can actually feel worse before beginning to improve so try not to get too disheartened if results aren't immediate

Personally, I found nearly a year of self injecting every other day produced slow but steady and ongoing improvement. Be aware though, stress or overdoing things can temporarily bring back symptoms.

bestpractice.bmj.com/best-p...

stichtingb12tekort.nl/surve...

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That was me as well just a couple of months ago. Please know that you might have ups and downs and might not get your doctor to understand even when you feel the symptoms decreasing with the B12 shots. But don’t give up. These groups are helpful in getting the knowledge and emotional support you will need. Good luck!

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Hello Clareccc, you poor luv, I'm too a newby, but my symptons started last march when feet felt like I had trod on stinging nettles and a very sore tongue, ,I had felt slightly depressed for about 5 years tho,but put that down to my recovery from lung cancer.(all clear now)

Anyway it took several appts with Dr before blood test showed b12 levels were 169, borderline for UK but my Dr was concerned about the nueropathy in my feet said I would like you to start with injections,I had 6 back in December17 and my first boost inj last week, and I do feel better, not 100% but I would say 75% the tingly feet no different, but!! As Clive has said to it can take while to recover, I hope your b12 inj helps you, it might take a few days after first one, but for me I had more energy than I knew what to do with, problem was I'm 70 and my head felt like a 20 year old, so I couldn't do physically what I wanted.

But I'm a lot happier now.good luck.my dear.x

Let us all know how you get on, you arnt alone.

Tricia 2710

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Oh my goodness, I had much the same experience - feeling faint but then being scared by it turning into a horrible spaced-out sensation. I had muscle twitches and a weird sensation like hot water was being poured over my foot. I felt quite mad - what kind of symptoms are they?! I went to the GP with the spaciness, thinking my iron was low again, but it turned out to be my B12.

Good news is that I'm much better (and I self-inject, so I use way more B12 than the GP knows about), but I still sometimes get the twitching and I've definitely got a bit of brain fog most days! Good luck with your investigations - there is definitely life after a diagnosis of B12 deficiency!

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Thank you for your supportive messages over the past few days. I had my first shot today extremely painless and also a folic acid tab, afterwards came home to bed and then headed to work this afternoon! After a couple of hours at work I realised my head didn’t feel as foggy, I was no longer holding on to things thinking I was going to pass out!! And the numbness has lessened. No doubt many symptoms are still here and will take a while to disappear but I am amazed at the effects a little bottle of red liquid can have in such a short space of time! 😘

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Hi again,

Glad to hear you have started treatment.

How many loading doses are you going to get and how often will you have maintenance doses once loading jabs have finished? See BNF link and BSH Cobalamin and Folate Guidelines link in post above for details of UK B12 treatment.

UK b12 treatment for B12 deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks then a jab every 3 months

For B12 deficiency with neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months.

I Hope you have been put onto the above neurological treatment regime. Numbness , dizziness, pins and needles are usually considered as neur symptoms.

Some UK forum members get put on the regime for those without neuro symptoms even when they have neuro issues. If this happens to you, might be helpful to

1) Look at these links

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

2) Consider joining and talking to PAS (link and tel no in above post)

3) Consider contacting HDA pct ((link in above post)

"I live in Scotland and only discovered today my brother who lives in Northern Ireland is getting both iron and B12 injections regularly."

Does your GP know about family history of B12 problems?

Have you had iron and folate levels checked and a full blood count recently?

Like Polaris I think it is a good idea to put concerns in a letter and may be include family medical history, symptoms, test results. extracts from B12 documents.

In UK, my understanding is that letters to GP are filed with medical notes so are a record of issues raised. See link about writing letters in my post above. I suggest keeping copies of any letters.

"had my first shot today "

Have you had an Intrinsic Factor Antibody test? This can help to diagnose PA but not always reliable. Still possible to have PA even if IFA result is negative or normal range. See flowchart link in my post above.

An IFA test close to a B12 injection can lead to an unreliable result. Doctors normally leave at least 2 days and up to 2 weeks after b12 injection before testing IFA. If GP has not tested IFA perhaps he'll do it after you've finished loading doses. Worth asking Haematologist about PA if GP has not tested for it.

Has your brother had an IFA test? PA can run in families.

As you're in Scotland, you may be interested in B12 petition before Scottish parliament.

parliament.scot/GettingInvo...

There was a Kilmarnock B12 and Thyroid support group that posted meetings on Thyroid UK. I don't know if this group is still active .

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