B12 drop rate

[Button11]

Hi!

I just wondered what would cause a slow drop in b12? In 6months it’s dropped by 54 units (or whatever the measurements are) and I know that’s not a lot but since 2016 when I had low b12 (188) and had 6 injections which raised levels it’s continued to drop but at a slow rate it’s now 300 which I know is classed as normal.

Not celiac, veggie or anemic could it just be anti acids and possibly the contraceptive pill?

Thanks

[clivealive Forum Support]

Hi Button11

Both antacids and certain contraceptives and other medications can affect absorption of Vitamin B12.

Are you suffering any of the B12 deficiency symptoms?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Perhaps you could increase your meat, seafood and dairy produce together with plenty of green vegetables for Folate.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Button11 in reply to clivealive]

Hi clivealive

Yeh I have similar symptoms that I had before I had the injections in 2016 but not as severe yet. I especially have palpitations, shortness of breath, tingling in leg/numbness feeling but only tends to be in left leg as it was before, light headed, unable to think properly or concentrate, don’t lose weight as such but can’t really put it on seem to stay same all the time but have lost weight over last couple of years without trying, fatigue and fast heart.

I’m also diagnosed as having anxiety which I know can mimic these symptoms and I know anxiety can also be a symptom of b12 definitely so I’m not sure which it is.

I eat a lot of meat and vegetables and fish once a week I could up the dairy but I thought I was having stomach problems with dairy but I’m not even sure anymore what’s going on.

Recently been told I have possible endometriosis which can be helped by going dairy and gluten free so I’ve been trying that for around a year now but I do still eat bits here and there so not completely cut it out

Thanks for your advice

[clivealive Forum Support in reply to Button11]

A wiser person than I posted this comment a while ago:

"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life."

I think it is saying in your case is that, even though your diet is OK, if your B12 level is dropping you may have an absorption problem which means you will have to supplement with B12 injections - again - and maybe for life.

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...

In other words your doctor needs you "ignore" your (now normal) results and address your symptoms.

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 re-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.

Having lived with "tummy troubles" since the age of 17 when I had two thirds of my stomach removed I find that adding a few drops of lime juice to a glass of water helps my digestion a little and I'm still "clivealive" and over 75

[Button11 in reply to clivealive]

clivealive thank you so much! I’ll try again without him fobbing me off with anxiety!

Thanks again

[Sleepybunny]

Hi,

"Not celiac, veggie or anemic could it just be anti acids and possibly the contraceptive pill?"

Risk factors for B12 deficiency and PA

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Coeliac disease

When you were tested for Coeliac disease, which tests did you have?

In UK, two first line tests are recommended for adults with suspected Coeliac disease.

1) tTG IgA

2) Total IgA

My experience has been that in UK, the Total IgA test is not always done. It's an important test though, as people with IgA deficiency will need alternative tests for Coeliac disease.

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

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

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.

UK B12 websites

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

UK b12 documents/articles

If you're in UK, I'd suggest reading all of these.

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...

Lots more b12 info in pinned posts on this forum. I've also written some longer replies to posts recently which may be worth searching for.

I am not medically trained.

[KimberinUS]

Several years after testing b12 deficient and taking tablets and only getting worse i started injections in may 2017 and definitely improved but still wasnt well. I got tested for h pylori, in July 2017, even though I didn't have the main symptoms of stomach pain or heartburn and was positive.

I took treatment, and like a fool waited 3 months for healing to occur before I retested. When I did retest in November 2017, I was still positive. I did a second round of different antibiotics for a longer period of time. O

I recently received test results saying that I'm now negative. I actually believe this is correct because I can now hear my stomach grumbling and I now have some burping and flatulence which I haven't had for at least two or three years. I consider these to be a good signs that my stomach is starting to digest the food I'm eating.

I know that H pylori is associated with iron and B12 deficiency. However I believe the h pylori had caused hypochloridia, which causes low stomach acid and absorbtion of many nutrients.

I have recently begun to feel the fog lifting and have more decent days. I'm not back to my old self yet but I hope to be there soon.

The antacids you are taking reduce the acid in your stomach, when in actuality many people need to raise the acid in their stomach, so that their body can absorb the nutrients from the food they are eating.

Best of luck and health in your journey.

[Button11 in reply to KimberinUS]

KimberinUS thank you for your reply and I’m glad you’re starting to feel better. I’ve been tested twice for h pylori and both were negative. I only take my anti acid once a week and I did mention low stomach acid to two Doctors who both laughed at me and said no such thing! But low stomach acid can also be associated with thyroid too.

I’ll look into it more x

[KimberinUS in reply to Button11]

You might consider trying betaine hcl with pepsin capsules. Some people use lime juice and it works for them.

During my years of taking tablets, i craved lime juice in my water and i did that all day, everyday, without understanding that it helped in iron absorbtion.

I think that was the only reason i didnt become iron deficient with the h pylori.

[Button11 in reply to KimberinUS]

KimberinUS I keep drinking lemon in water like it’s a craving now have to have it every day

[KimberinUS in reply to Button11]

You might be getting iron deficient without the anemia, yet. I would ask for a full iron panel.

Dont take iron before testing if you plan on testing.