Very confused...

[Zee2]

I’m new here and very confused as to why my levels are within the normal range but I feel so rubbish 😢

[wedgewood]

My levels have to be off the scale fir me to feel well . I have P.A. ( positive Intrinsic Factor Antibodies test ) I had the loading doses like you did , but symptoms returned very soon , but my GP would not let me have any extra injections . I was only allowed 3 monthly , which was not sufficient to keep symptoms at bay . So i was forced to self-inject The “ one size fits all “ approach is useless . If you have P.A there is no need for B12 blood tests once treatment has started ( as is mentioned in the guide lines , but doctors rarely read them You need more regular injections . I need a weekly injection . But everyone is different

The 5 mg Folic acid tablets should only be taken for a short time — Thereafter 400 mcg daily is sufficient. B12 cannot be overdosed,

which is great !

So ,B12 injections at a regularity that keeps your symptoms at bay , are called for . If this proves impossible , self-injections could do the trick —it did for me . Except that I had been B12 deficient for so long , and untreated , that one symptom had become irreversible. So that’s how it is 6 years on . All the very best .

[Mrsmr in reply to wedgewood]

Hi Wedgwood, you say it was a long time before you were diagnosed. Can I please ask how long it was.? I am interested as I think I have been undiagnosed for nearly 20 years as I am now experiencing ongoing neurological symptoms in spite of regular 3monthly injections. Thanks

[wedgewood in reply to Mrsmr]

I would say about 20 years also . The first alarming symptom for me was palpitations , which made me feel faint . I did go to the GP when I did faint. He examined me and pronounced me fit . It was nothing to worry about , and I should ignore those “ funny turns “ as I called them . That was certainly over 20 years ago ,and they continued until I got sufficient injections ( self -administered ) Then came the exhaustion , couldn't handle the vacuum cleaner -too heavy . Bought one of those useless “robots” Numb feet , .breathlessness , anxiety , confusion ensued and then the giddiness and nausea . Numb feet pronounced “ Ideopathic “ Had blood tests ,” All normal “ . I didn’t feel normal and just went to a private doctor who diagnosed Pernicious anaemia . So then my GP was obliged to give me loading doses ( 5) and thereafter once every 3months . I eventually got my blood test results ( didn’t know before that I could have them ) to find that my B12 serum had been well-below range . So I had been lied to . I won’t go on about all this -it’s rather sordid really .I know that there are many members who have had worse medical experiences .

Obviously your 3 monthly injections are not sufficient . If you can’t get them regularly enough to see off those symptoms , do think about self injection . Honestly, it’s easy and cheap - An injection costs , everything included , about £1.50 . If you need information about it , just ask .

I do not go to the surgery any more for injections , I just self -administer . So convenient at home . AND you cannot overdose . But when I look back and consider how I sort of dragged my way through life for so long, my blood boils . But it also boils for those other victims of this farcical medical disaster -it is a terrible situation .

[Mrsmr in reply to wedgewood]

Thanks for sharing your journey Wedgwood. Our stories sound very similar I'm afraid. Like you I feel angry for the way I and many others are dismissed and ignored for so long. I do have 10 weekly injections now. The big dips in energy,and other symptoms have had a big impact on my life but I am grateful that I am still here,and strong enough to take charge of my own health!!!thanks again,take care

[wedgewood in reply to Mrsmr]

You should be able to get an injection every 8 week’s cent without a fight . It is in the latest guidelines . . When you don’t feel 100% it’s difficult to face and argue with ignorant, arrogant doctors . I could not fight any more and have given up with them . So I self- inject weekly. to keep well.

[crazydelores in reply to wedgewood]

Hi any recommendations as to whine to order them from & which type methylco. Or the other one ? Cheers

[wedgewood in reply to crazydelores]

I use the form of B12 called Hydroxocobalamin which is what the NHS uses . I tried Methylcobalamin ( very difficult to obtain in ampoules ) and found no advantage at all to me . I’ll send you the information. for where to obtain it - German online pharmacies ,, ( Controlled by German health authorities who are very meticulous )

versandapo.de is my pharmacy of choice .

[waveylines in reply to Mrsmr]

Mrsmr you should be on alternate day injections indefinately for neurological symptoms. 3 monthly is not enough. I would take this up with your doctor. If you go on B12d.org they have an excellent symptom checker. I didnt realise that some of the symptoms I had were due to b12 deficiency.

[Mrsmr in reply to waveylines]

Thanks waveylines, yes I think I do need more frequent injections. I think Wedgwood hit the nail on the head when she said she hadn't the energy to keep fighting for the right treatment. I too feel the same.take care

[waveylines in reply to Mrsmr]

So sorry to hear that. I felt like that so bought my own so could inject when I felt I needed. I really didn't feel the medical profession would care if I got worse or take notice of my deterioration by not having injections.....so got my own jabs did the job and 3 months later presented myself to my GP. The reality of seeing me much improved stunned her.......still couldn't treat me though! Had to hang out for neurology but I felt better for taking matters into my own hands. It was hard & I was scared at first self injecting but I was desperate... Sobunderstand you not feeling up to fighting but if you can think about getting your own.. Its all wrong I know.....

[Mrsmr in reply to waveylines]

Thanks for your support Wavylines. It does help to hear from other forum members. Take care and keep smiling.

[Zee2 in reply to wedgewood]

Thank you so much for your reply. I will get this sorted. I owe myself that much. Take care.

[Narwhal10]

Hi Zee2,

Welcome. I am so sorry to hear this. Doctors and nurses have very poor understanding of B12 deficiency, in my opinion. I had visible neurological symptoms and was told after loading doses, see you in 3 months. I self inject too, most days - 13 months. Thanks to the wonderful support I received here.

Our levels, if they are to be checked, should be high (over 1,000) but even then we don’t know what is going on at cell level.

Please ask questions- lots of understanding, knowledgeable people here.

Best wishes

[Zee2 in reply to Narwhal10]

Thank you for your reply. I just feel so disappointed. I have felt rubbish for so long and when it showed some low levels in my bloods I finally felt hopeful of feeling better. After each jab I thought I would feel better but sadly I didn’t feel a lot different and then suddenly I did for a while and I was sleeping better and so much calmer and then the last few weeks I have felt my old symptoms coming back worse than ever. My GP arranged for another blood test and the levels are certainly better and yet I’m not 😢.

I will get this under control, if it’s the last thing I do 😀. Take care

[Darcey14 in reply to Zee2]

I relate to this. I had about 6 months feeling pretty good, starting about 4 month after loading doses,then probably Septemberish started to notice odd symptoms coming back. I have just started 10 weekly as apose to 12.

[Zee2 in reply to Darcey14]

Hi, I really hope it helps you having your injection that bit earlier 🤞🏼.I should have mine pretty soon and I will contact my surgery as soon as I notice any symptoms returning because it doesn’t seem right to feel rotten but have to wait 3-4 weeks. I wish you luck 😀. Take care

[Sleepybunny in reply to Zee2]

"I will contact my surgery as soon as I notice any symptoms returning"

Might be worth keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.

Could be useful evidence of improvement or deterioration in symptoms to show GP/specialist.

[Zee2 in reply to Sleepybunny]

Thank you for the advice, I certainly will do that 😀

[wedgewood in reply to Zee2]

But if your doctor would only READ THE GUIDE LINES , he/she would know that it’s a waste of time to test for B12 .after treatment has commenced I keep reading that doctors do this .It makes me FURIOUS ! The ignorance is appalling. This applies to P.A. — Dietary — vegan i or strict vegetarian diet as a reason for deficiency is different .

[Sleepybunny in reply to wedgewood]

Hi,

For anyone who's just read wedgewood's reply above and is having issues with treatment due to GP testing B12 levels .....

Thread below is about retesting B12 levels after treatment has started

healthunlocked.com/pasoc/po...

Some info may be specific to UK.

[wedgewood in reply to Sleepybunny]

You are great Sleepybunny 🏅

[mcg-woo]

I felt the same way—so much so that I was afraid I had been misdiagnosed as B12 deficient and something else was wrong. I asked my neurologist how could I still feel so bad with a level of about 700 (this was in the early days when I still had much to learn). She explained that it takes the brain an entire year to recover from low B12 after treatment has begun.

Now I know that recovery can take much longer than that. I continued to recover over a period of years but I also wasn’t getting enough injections and never received loading doses, so it likely would have been quicker for me had that happened.

My B12 levels have to be off the chart (over 2000) for me to feel normal. Full recovery is possible with consistently frequent injections and a maintenance schedule that keeps symptoms at bay. Best of luck to you!

[wedgewood]

Great that you found a neurologist who had some knowledge of b12 deficiency .

[mcg-woo in reply to wedgewood]

I was seeing my neurologist for migraine treatment and I was curious as to why I still felt so bad since my b12 levels had improved so much. I’m not sure that my neurologist is knowledgeable enough that she would have allowed me as frequent injections as my PCP has allowed. I am lucky enough to have a primary care doctor who cared enough to do the research to help me. I am her only patient with PA and she put in the work just for me. I am so fortunate but am so frightened about where I may find myself when my doctor retires since I require more than the US standard of a monthly injection just to feel normal.

[wedgewood in reply to mcg-woo]

Well , I suggest that you arm yourself with all the information you need to self -inject . I know that the situation in the US is the same as here in the U.K.,that a prescription is required for injectable B12. But you can get supplies from Canadian online pharmacies without a prescription . .Syringes and needles can be obtained from medical supply pharmacies in the USA

[mcg-woo in reply to wedgewood]

I already self-inject but as you point out it’s the ability to obtain b12 without an Rx that is the issue. My preference is to have an Rx with a doctor’s blessing and guidance but if it came down to it, I would do what I had to do to survive. My life depends on it. Thanks for your help! I didn’t realize one could obtain syringes online since I get mine at the pharmacy where I have my Rx. I thought the US had gotten strict about that because of the opioid crisis? I even bought some IM needles at a US pharmacy where I used to have my Rx because they’re cheaper and the staff treated me like a drug addict. I just get my needles at the pharmacy where I get my Rx filled rather than being treated that way. Thanks again for your insight and guidance!

[wedgewood in reply to mcg-woo]

You can order syringes and needles online from allegromedical.com

[mcg-woo in reply to wedgewood]

Thanks, Wedgwood! What about the Canadian pharmacies? Can I just find those with a google search? Also, would cyano be my only option in Canada? I inject hydroxo.

[wedgewood in reply to mcg-woo]

I have only found Cynocobalamin in the Canadian pharmacies .buy-otc.com

biosenseclinic.com

vitaminquick.com in USA supply Methylcobamalin

vitaminb12online Australian company supplying Methyl, Hydroxo and Methylcobalamin in kits or packs of ampoules.

I don’t know of any German online pharmacies who ship to USA , but you could put up a post asking fellow Americans if they know of one

[mcg-woo in reply to wedgewood]

Thank you for all your help!

[Sleepybunny]

Hi,

I hope you find the answers to any questions you have.

Have you been diagnosed with PA or B12 deficiency from another cause?

Are you getting any treatment from NHS and if you are, how often are you getting B12 injections?

UK guidelines indicate that people who have the symptoms of B12 deficiency should be treated even if their serum B12 result is within normal range. See document summary below.

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

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

b12deficiency.info/what-to-...

If you have been diagnosed with PA or suspect you have PA, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful leaflets

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF link below.

BNF Hydroxocobalamin

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

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

Very comprehensive with lots of case studies.

Films about B12 deficiency

b12deficiency.info/films/

Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes and symptoms of B12 deficiency, UK B12 documents, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Zee2 in reply to Sleepybunny]

Hi

My B12 was tested and was 125, so I was given 6 injections over 2 weeks and an IFAB test. This came back negative.

I was told to have a further blood test after 3 months, which I have had recently and the B12 is now 394.

I have to have another telephone consultation with the Nurse Practitioner before I can book a further injection. So, realistically, it is going to be closer to 4 months since I had my last injection and I’m feeling rubbish 😢.

Thank you so much for sharing all the information. I was dreading being told I don’t need any more help and now I feel equipped to argue my case, if I’m told that.

[Sleepybunny in reply to Zee2]

Hi,

"an IFAB test. This came back negative."

Have you asked your GP if it's possible you could have Antibody Negative PA?

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines (full document)

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

Try to track down local guidelines for your CCG/Health board on treatment/diagnosis of B12 deficiency.

Have you been tested for coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

I'll add more to this post so check back later today.

[Zee2 in reply to Sleepybunny]

Yes I did have a coeliac blood test which was also okay . I’m not vegetarian or vegan, so they don’t feel it is diet related. Thank you so much for your help 😀

[Sleepybunny in reply to Zee2]

Hi again,

Apologies for bombarding you with so much information.

I suggest taking a week or so to sift through it all so it's not so overwhelming.

UK guidelines suggest that people with suspected coeliac disease should have the following first line tests ...

1) tTG IgA which checks for a particular antibody to gluten

2) Total IgA which checks which patients have IgA deficiency

Did you have both of the tests above?

People with coeliac disease can get a negative result in the tTG IgA test if

1) They have IgA deficiency

Their bodies cannot make the antibodies that tTG IgA test checks for.

2) They were not eating enough gluten prior to blood being taken for testing so not enough antibodies to gluten were circulating in the blood to register a positive result.

Did your GP tell you to eat plenty of gluten in more than one meal a day for several weeks before blood was tested?

May be worth looking at possibility of coeliac disease again if you did not have a Total IgA test or your diet before test only had a small amount of gluten in it.

People with suspected coeliac disease who have already cut out gluten from their diet should be referred to a gastro enterologist. See NICE Guidelines Coeliac disease link.

More info on Coeliac UK website.

coeliac.org.uk/home/

Have you checked your medical records to see what tests you have had?

Patients aren't always told which tests have been ordered.

If you're told results are normal, always check for yourself.

There are forum members who were told everything was normal/no action then they found abnormal or borderline results when they checked their results.

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.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Is there a family history of auto immune diseases? If yes, does your GP know?

Having a family history of auto immune disease can increase the chance of developing an auto immune disease. PA (Pernicious Anaemia) and coeliac disease are two auto immune conditions that can lead to B12 deficiency. There are others.

You mention that your IFA (Intrinsic Factor Antibody) test result was negative.

UK B12 documents in my other reply suggest that a negative result in IFA test does not rule out the possibility of PA. See links below.

Testing for PA

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Gastrin test

labtestsonline.org.uk/tests...

"I’m not vegetarian or vegan"

Do you eat plenty of B12 rich foods eg meat, fish, eggs, dairy, shellfish, foods fortified with B12?

If yes to plenty of B12 rich food then less likely to be diet and more likely to be a gut absorption problem.

High levels of alcohol have been associated with low B12 levels.

Have you been tested for H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any exposure to nitrous oxide?

Nitrous oxide is sometimes used as part of pain relief and anaesthesia. For example it's used in gas and air mix for pain relief during labour. It's also known as laughing gas.

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...

Any chance of internal parasites such as fish tapeworm?

Have you ever eaten raw or uncooked fish or stayed or lived in an area where internal parasites are common?

One potential sign of internal parasite infection is an increase in eosinophils, a type of white blood cell. People can find their eosinophil result on their Full Blood Count results.

There are other parasites that are associated with low B12 levels including Giardia Lamblia (also known as Beaver Fever) and other types of parasitic worm.

Medicines/Drugs

Any concerns about medicines/drugs should always be discussed with a doctor. Local pharmacist may also be helpful.

Some medicines such as metformin, a diabetes drug, PPI drugs, some anti epileptic drugs have been associated with low B12 levels. Some have also been associated with low folate levels.

Has your GP looked at any medication you're on?

Local Guidelines

I recommend you track down the local guidelines on B12 deficiency for your CCG/Health Board and compare what they say with BNF, BSH and NICE CKS links.

Some local guidelines in UK are unhelpful so worth knowing what you are up against.

See blog post below about a UK area that has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/blog/202...

1) Search forum posts with term "local guidelines" as some have already been posted on forum.

2) Try an internet search using "name of CCG/Health Board B12 deficiency guidelines".

3) Submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a link to and/or copy of local guidelines on B12 deficiency.

[Sleepybunny in reply to Zee2]

B12 deficiency is not always as well understood by GPs, specialists and other health professionals as it should be.

There are far too many on this forum who have met doctors who lack understanding so I'd like you to have the information to hand in case you meet one of the ones who hasn't done their homework on B12 deficiency.

There may be some links I post that could have details that are upsetting.

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

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 that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Do you have any neurological symptoms?

[Zee2 in reply to Sleepybunny]

As you recommend, I am going to take some time and go through all the information you have given me and check exactly what tests I have had. I’ll speak to you soon Sleepybunny and thanks again 😀😀

[Rainbo06]

As part of a health check recently I had bloods done fo B12 levels and they came back high admittedly I was about 6 weeks in from my 12 weekly cycle I was feeling really good the best I’ve felt in while, now I’ve reached the 8/9 week period I’m beginning to feel like I’m sliding backwards so I gave myself a booster of 0.5ml