Here we go again

[Darcey14]

Hi all. I'm so glad to be on here for advice. There are time to has really put my mind to rest. I'm hoping someone will have an opinion on what's going on. I have had my loading doses which finished last December. This year I have had 3x 3 monthly and 1x 10 weeks jab so 4 jabs this year all together. I'm also 5 months on ferograd and vit d. My breathing has been on and off for about 5 months just when I need to take a full breath sometimes cant get it. Also im aware that my abs push out and almost contract and then I consciously relax again. Also my palpitations are popping up again. My last jab was 3 weeks ago. Feels like I'm taking a step back.

[Sleepybunny]

Hi,

I'm wondering if you are getting enough B12.

Have you got any test results for folate, iron, full blood count and Vit D?

I'm assuming you're in UK. There's a lot of info in links below so I suggest you take a week or so to sift through it.

BNF link below has two patterns of treatment for B12 deficiency

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

Do you have neuro symptoms now or did you have neuro symptoms prior to starting treatment?

See Symptoms lists below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Next link lists symptoms for both B12 deficiency and folate deficiency

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.

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....

Loading Injections

How many loading injections did you get at start of treatment?

If yes to neuro symptoms now or before treatment started, my understanding of UK guidelines is that you should be on the BNF pattern for those with neuro symptoms which is ...

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

There is no set time limit as to how long the every other day loading injections can continue for. Could be weeks even months of them.

If you only had 5 or 6 loading injections and you have or had neuro symptoms, you could point out politely in a letter to GP that BNF suggests every other day loading for as long as symptoms are improving. You could ask GP to restart loading injections.

Your GP can find this information in their BNF book Chapter 9 Section 1.2 or online.

My understanding of UK B12 deficiency guidelines is that severe B12 deficiency eg with neuro symptoms present should be treated with B12 injections whatever the cause of B12 deficiency even if it's dietary B12 deficiency.

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

b12deficiency.info/what-to-...

Causes

I think there was discussion in one of your other threads that it was possible your B12 deficiency was related to diet. It is possible to have more than one cause of B12 deficiency at the same time.

Were you ever tested for PA and Coeliac disease?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

PAS website has lots of useful articles/leaflets which some PAS members print off for their GPs.

pernicious-anaemia-society....

PAS website has a page for health professionals.

pernicious-anaemia-society....

UK B12 documents

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines (link to full document)

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

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

stichtingb12tekort.nl/engli...

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.

Low dose cyanocobalamin tablets (50 mcg) are sometimes prescribed/recommended for dietary deficiency.

BNF Cyanocobalamin

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

There are moves across UK for more patients to be put onto high dose oral cyanocobalamin tablets (1000 mcg) as an altenative to B12 injections. This is often promoted as easier for patients but being cynical I suspect a cost cutting measure

NICE CKS B12 deficiency and Folate deficiency

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

Each CCG/Health Board in UK is likely to have its own local guidelines on management of B12 deficiency. I recommend you track down the local guidelines for your CCG/Health Board if you're in UK. Some have been posted on the forum so try a search of forum posts with terms " local guidelines", try an internet search with "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information request) to your CCG/Health Board asking for a link to or copy of local B12 deficiency guidelines.

I hope you are not in the UK area discussed in blog post below.

b12deficiency.info/blog/202...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base their own letters on.

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

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.

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 hydroxocobalamin link at top of this reply for up to date info.

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

Very comprehensive with lots of case studies.

B12 article from Mayo Clinic

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

[Darcey14 in reply to Sleepybunny]

Hi thanks so much for the very detailed reply. I've just started taking 100ug of b12 but it is cynocobalamin. I was tested for pa but the test was nagative. Coeliac has never been mentioned. My grandad has low b12 and so does my mam. Both of which have hernias and my grandad had barratts oesophagus. I was tested for h pylori due to sulphur burps and severe stomach pain and vomiting. That's something that has been ongoing since I was about 8 or 9. It comes and goes. I was 94 when diagnosed and it had dropped from 124 and that was after taking months of multivitamins. So they aren't sure if it's just diet or not. I dont eat meat or fish but have loads of dairy and fortified foods. Also eggs and what not. These recent symptoms have just started again. The others have stayed away ( touch wood). I had a full blood count done a few weeks ago which was all good. Ferritin and vit d I'm still taking because I have room to go higher. Folate I dont think has been done. I'm hoping I can absorb some of the oral b12. I've read people have some look with a spray when they need a top up. Before diagnoses I had every symptom going. They settled down and now these few have returned.

[Ghound]

Hi, I agree with Sleepybunny, the amount of B12 you've had would never be enough to keep me well. I self inject weekly in addition to my NHS dose every eight weeks.

Hope you're feeling better soon x

[Darcey14 in reply to Ghound]

Thanks. In 5 days in to some 100ug cyno. It's the on off breathing and palpitations. Also the last couple of weeks a shap burning sensation that lasts about a minute in one of my toes.

[Sleepybunny]

Hi again,

"I was tested for pa but the test was nagative"

What test did you have?

Have you checked your medical records?

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

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results. My advice is to always check them yourself.

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 in case you need it in the future.

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...

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.

Some GPs may not be aware that it is possible to have Antibody Negative PA.

If your GP discounted PA as a possibility purely due to IFA (Intrinsic Factor Antibody) test result being negative then I suspect that they may be one of the GPs who is not aware of the possibility of Antibody Negative PA.

Gastrin test can also be helpful in testing for PA especially if IFA (Intrinsic Factor Antibody) test is negative.

labtestsonline.org.uk/tests...

There is a flowchart below which explains when Antibody Negative PA should be diagnosed

If you're in UK, has your GP seen this flowchart?

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

stichtingb12tekort.nl/engli...

Antibody Negative PA is discussed in BSH Cobalamin and Folate Guidelines below.

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

Antibody Negative PA is also mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" .

"My grandad has low b12 and so does my mam"

What do their doctors think caused their low B12?

Were they ever tested for PA and Coeliac disease?

Both PA and Coeliac disease are auto immune conditions that can run in families.

If your GP doesn't think it is PA, have you asked them directly or in a letter what they think has caused your B12 deficiency?

Have they assumed that the cause is dietary?

If you eat a B12 rich diet eg meat, fish, shellfish, eggs, dairy, foods fortified with B12 then diet as a cause is less likely and it is more likely that there is an absorption problem in the gut.

If they think it's diet and you don't then may be worth writing out a typical weekly diet, food and drink to show GP.

A high alcohol intake has been associated with low B12 levels.

"Coeliac has never been mentioned. "

Might be worth asking your GP to test you for coeliac disease or possibly getting private tests if GP won't order them.

Link that explains process of diagnosing coeliac disease.

It has a helpful online assessment.

coeliac.org.uk/information-...

"I was tested for h pylori"

Do you remember what sort of test you had?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H Pylori testing

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

Click on blue boxes in flowchart for more info.

Medicines/drugs

Some drugs/medicines may affect B12 levels and some may affect folate levels.

Any concerns about medicines/drugs should always be discussed with a doctor/health professional.

Has GP looked at any medicines/drugs you are? May also be helpful to talk to local pharmacist.

Metformin, a diabetes drug, PPI drugs such as omeprazole, some anti-epileptic drugs have been associated with low B12 levels in some studies. There are others as well.

Any exposure to nitrous oxide ( also known as laughing gas)?

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 eg fish tapeworm?

There are other internal parasites that have been associated with B12 deficiency eg other types of parasitic worm and Giardia Lamblia (also known as beaver fever )

Have you ever eaten raw or uncooked fish?

Have you ever lived or stayed in an area where internal parasites are common?

One potential sign of internal parasite infection is a raised level of eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.

It's vital to get adequate treatment for B12 deficiency.

Untreated or under treated B12 deficiency from whatever cause can lead to permanent neurological damage including damage to spinal cord also known as SACD, sub acute combined degeneration of the spinal cord.

[Darcey14]

You're a real tonic in a situation like this. Thank you so much.

It was a stoole sample for h pylori

I've got a print out of last 2 lots of bloods. They included a FBC and lots of other things.

I had ITP when I was very small which settled.

I also had severe salmonella when I was a toddler.

Ive had numerous doses of gas and air until I was about 14.

It was an IFA test he did, he did say that just because that was nagative that it didnt mean diddly squat basically. He thought possibly diet but also realised that even taking a multi vit supplement it was still going down.

Both the family members eat fish meat and dairy.

My grandad has taking omeprazole for ages.

My mam has what they say is fibromyalgia. She also has stomach problems including a sliding hiatus hernia. She has severe spondylitis in her neck and neck. And other joint problems.

I used to be cripple with stomach pains for a couple of years when I was a teenager. I would be bent double for hours. They didnt investigate and just gave me gaviscon. Giardia does come up as well and h pylori for causea of hiccups that taste and smell of rotten eggs. Horrendous.

I was also on the combined pill for about 13 years and came of that a couple of years ago.