Vitamin b12

[leannecl88]

Hi all just a quick question! Basically in 2015 I was diagonsed with vitamin b12 had the 6 loading injections done then another’s blood test done and it was told it was now fine and that I didn’t need anymore. Fast forward to October 2018 I’m 30 now haha! I went to the doctors with tiredness and she checked some blood tests I’d had done in the April and said my b12 was low apparently not that low but low enough to need it down again so I had the 6 loading doses and I felt great and then just after Christmas I started to feel tired again and for some reason I’d got my dates mixed up when my next ones due went to the docotrs sayin I was tired again and he just said that happens when your near the time of needing another one and to wait and see got home to only realise I was actually almost two weeks late having it down rang docotrs they got me in the next day so I had it done two weeks ago now and I’m still feeling tired is this normal as I was late having it done? I’m just a bit worried as after he loading doses I felt normal again and I don’t now

[clivealive Forum Support]

Hi leannecl88

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Can you see yourself in any of the above "people"?

I don't think your doctor should investigate why you have these ups and downs as each time you have a "deficiency" in you B12 level damage to your nerve endings may be being caused.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[leannecl88 in reply to clivealive]

Hi thank you for your reply! Weirdly no I don’t come under any of the above my doctors say it’s just one of them things. I was just a little worried as I’m still not feeling myself even though I had the injection two weeks ago and just wandered if anyone knew if it was normal or not?

[clivealive Forum Support in reply to leannecl88]

We are not all the same. Some folk on here self inject every day others happily manage to have three monthly injections

Doctors often look at numbers on the screen instead of their patients.

Was your Folate level ever tested?

Please remember I am not medically trained.

I bid you goodnight.

[Sleepybunny in reply to clivealive]

Hi clivealive

Did you mean to say "I think your doctor should investigate" rather than "I don't think your doctor should investigate"?

[clivealive Forum Support in reply to Sleepybunny]

Ooops - I changed what I was going to say half way through and didn't edit it properly.

"I don't think your doctor should investigate"

Sorry leannecl88

[clivealive Forum Support in reply to Sleepybunny]

Ooops - I changed what I was going to say half way through and didn't edit it properly.

"I don't think your doctor should investigate"

Sorry leannecl88 and thanks Sleepybunny

[Sleepybunny]

Hi,

Some B12 info that may be of interest.

I am not medically trained.

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Has GP asked you questions about your diet?

Vegan and vegetarian diets can be a risk factor for developing B12 deficiency so is excess alcohol intake.

Have you ever been checked for Coeliac disease?

NICE guidelines Coeliac disease recommend that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Have you been tested for H Pylori infection?

patient.info/health/dyspeps...

Exposure to nitrous oxide?

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

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...

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 most 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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

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

This means I can always check results for myself and also check what blood tests were done. I learnt not to accept being told over the phone that everything was "normal" because results weren't always normal when I got copies. There were also times when I thought certain tests had been done but they hadn't .

Some UK GP surgeries have online access to a summary of results/records. Details on GP surgery website.

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-...

Iron Studies

labtestsonline.org.uk/tests...

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/

More B12 info in pinned posts on this forum.

[Ryaan]

You need an injection before return of any symptoms which means you may need more frequent injections.

You need to get your Folate, Iron and Vit D levels checked as they can cause fatigue/tiredness if low or deficient.

[leannecl88 in reply to Ryaan]

Ah ok thank you! Do you think because I was also late having it done is why it feels like it hasn’t worked this time? As it’s been over two weeks since I had it done and still not feeling better?

[Ryaan in reply to leannecl88]

Yes, if you had it on time I don’t think you would have had a return of symptoms.

The bottom line is you should have the injection ‘before’ return of symptoms.

That way you will find out how often you need to inject in future.

[Ashweb901]

Since we are having this discussion among the most knowledgeable on this site, I’d like to ask if any patient experts here have had experience with the transdermal creams that have 5-MTHF, hydroxycobalamin, methylcobalamin, and pyroxidal-5-phosphate and D3. Leanne C, if you don’t end up needing frequent shots this could be something to keep your levels up between injections. (Depending on what our patients say here about whether the cream is worth a darn.)

I’ve been using one by a company I trust but I haven’t had my blood tested yet to see if it can do the job. I don’t have a pernicious anemia Dx but I do have a long history of macrocytosis of RBCs, too few RBCs, a bit too much iron in each, and just this past summer/fall my WBCs were low. In December I got a result just above normal on WBCs. They’ve run a bunch of tests to rule out lymphoma/leukemia, but I’m wondering if my homozygous MTHFR variant for 1298 is making me a poor maker of both red and white cells. I don’t have chronic infections and rarely get sick.