Help with b12 levels: Hello, I have... - Pernicious Anaemi...

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Help with b12 levels

Cheekycow8 profile image
23 Replies

Hello, I have been feeling very bad for nearly 2 years now, since the birth of my son, which was what I initially put it down to. My symptoms are, brain fog, massive fatigue, restless legs, breathlessness, headaches, mood swings, cold flashes and irregular periods. I have been to the doctor over and over for 2 years, they've checked everything out like heart, lungs, womb etc. They did a vitb12 test last week, and my levels came back at 171 ng/ml. My doctor has said this is fine, and has now prescribed me the pill to control my periods, and an inhalor for my breathing, plus an xray just in case.

I'm just hoping for some advice on whether or not the low b12 is likely to have been causing these issues and if I should push for more testing on that front? I ended up sobbing down the phone to my doctor when he said he's just prescribing the pill, as when i asked what that would do about my other symptoms, he said what other symptoms?! Even tho i have been back and forth for 2 years describing my symptoms. And then when I told him, he said I i was throwing too much at him and he couldn't think.

Thank you for any advice.

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23 Replies
Nackapan profile image
Nackapan

Have you tried oral b12 ?

Did you have a full iron panel and ferritin levels?

An Inzyrinsic factor test?

Did you have vitamin d , folate magnesium tested?

Get a print out of results.

Keep going back. Book double appoi ment

2 years is a long time.

Nackapan profile image
Nackapan in reply toNackapan

Instrisic factor antibody test IFAB

Cheekycow8 profile image
Cheekycow8 in reply toNackapan

He tested my iron and folate at the same time, and both of those came back well within normal ranges. I have started myself on the tablets today to see if they help any in the meantime. It can't hurt! If it doesn't help either, I will keep pushing for the intrinsic factor test. The test result for my b12 said 171pg/ml, but then also said vit b12 levels indeterminate? Is that usual? Sorry for all the questions, but my doctor doesn't explain much at all, no matter how much i ask.

Nackapan profile image
Nackapan in reply toCheekycow8

Well literally means ..

Nothing to add

Were you given a range ?

My husbands was 180ish. Tablets did the trick for him

Noe in 300's but takes a daily very low dose of b12 10 mcg.

Amazing

1000mcg doesnt seem to do anything for me. I bought loads of stuff in the hope. Lol ialso gp asked me repeatedly to try tablets!!whilst still having I je tions to have them less frequently. I've gone the other way.

They do work for some. Let's hope for you.

Cheekycow8 profile image
Cheekycow8 in reply toNackapan

Was your husband suffering from symptoms with that level of b12? I am hoping the tablets will help too. Booking my xray today, once that is out of the way I will know one way or another. I figure if it comes back clear, I am going back to the doctor with all this evidence and the guidelines he is supposed to follow, and demand treatment for b12 deficiency. Even if it only needs tablets, I want it noted how it has made me feel.

Nackapan profile image
Nackapan

Oh and thyroid testing . Other forum for tests needed

Cheekycow8 profile image
Cheekycow8 in reply toNackapan

Thyroid was tested a while back, but i didn't think to ask for the print off of that one. I can't remember when it was, but the receptionist may be able to find it for me.

Nackapan profile image
Nackapan

I hope you get some answers its horrible not knowing what's going on

Sleepybunny profile image
Sleepybunny

Hi,

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

b12deficiency.info/what-to-...

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.

Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.

In UK, guidelines say that if a patient is symptomatic for B12 deficiency with other causes of symptoms excluded, they should be treated.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

BSH Cobalamin and Folate Guidelines (UK document)

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

BNF

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

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.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I haven't got time now to leave a detailed reply but please look at the next link below which has lots of useful B12 info.

"have been feeling very bad for nearly 2 years now, since the birth of my son"

Did you use gas and air during labour?

Gas and air mix contains nitrous oxide which inactivates B12 in the body.

Nitrous Oxide

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

NICE guidance nitrous oxide...see Side Effects section

bnf.nice.org.uk/drug/nitrou...

If there's any possibility you might have PA (pernicious Anaemia), it's worth thinking about joining PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

You mention symptoms such as brain fog and RLS which are usually considered neurological symptoms.

Do you have other neuro symptoms?

B12 deficiency requires prompt treatment or there is a risk of deterioration including neurological damage.

Unfortunately it seems from threads on this forum that GPs and specialist doctors don't always have a good understanding of the issues.

Two brief suggestions...

1) Always get copies of and access to your blood test results.

2) Do your homework on B12 deficiency as sadly some doctors don't appear to do theirs.

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 does not show updated BNF info. See BNF link up page for up to date BNF treatment 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".

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

I wrote very detailed replies on another forum thread with a lot more B12 info.

healthunlocked.com/pasoc/po...

I'm not medically trained.

More B12 info in pinned posts on this forum.

Good luck with finding answers.

Cheekycow8 profile image
Cheekycow8 in reply toSleepybunny

Thank you so much for this, it is going to take a while for me to read through as my brain feels really muddy today. I do show other neuro symptoms, but i was diagnosed with menieres disease 10 years ago, and the doctor keeps brushing off my balance issue, clumsiness and increased vertigo, as my menieres worsening .

I am being sent for an xray on my lungs for the breathing, and once that comes back clear I am going to write a letter, following the advice from that link, and also see a different gp. Funnily enough, I did use gas and air, almost constantly for 12 hours. I also have ibs, but I'm not sure if that is one of the conditions that can lead to not being able to absorb b12? I also get the insect crawling sensation on my shoulder blades. Its horrid. Thank you again.

Sleepybunny profile image
Sleepybunny in reply toCheekycow8

Hi,

"get the insect crawling sensation on my shoulder blades"

The medical term for this is formication and it's a type of paraesthesia.

Paraethesiae are abnormal sensations such as formication, tingling, pins and needles, burning sensations and are often associated with damage to peripheral nerves.

Link about Peripheral Neuropathy

nhs.uk/conditions/periphera...

" also have ibs, but I'm not sure if that is one of the conditions that can lead to not being able to absorb b12?"

IBS type symptoms can be a symptom of B12 deficiency.

Have you had tests for PA and Coeliac disease?

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.

Both these tests can be unreliable.

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.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Does your GP have a list of all your symptoms including every neurological symptom you have?

Is there a family history of B12 Deficiency? Anyone else with PA, Coeliac or other auto immune conditions?

Vital to get treatment if B12 deficient and from personal experience , possible to have severe B12 deficiency with normal range serum B12.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

B12 article from Mayo Clinic (US article)

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

If you join PAS, there are lots of useful articles in library section on website members can print out for GPs.

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

fbirder profile image
fbirder

Try writing to your doctor. Keep it plain and simple.

Give a list of your four main symptoms that match those of a B12 deficiency - fatigue, brain fog, breathlessness, mood swings - just four so that you don't confuse the poor wee lamb.

Include a copy of these recommendations from the British Committee for Standards in Haematology - onlinelibrary.wiley.com/doi...

Highlight points 1 and 4 in the Summary of key recommendations

Demand proper treatment to avoid further neurological impairment as per point 4 of the included paper.

Cheekycow8 profile image
Cheekycow8

Thank you, I didn't even realise I could demand to be treated for it. I will read the link and get it started, once he has done the xray for his peace of mind. I feel like it would be cheaper to do a trial test of the b12 jabs, and probably less harmful too!

HopetoB12better profile image
HopetoB12better

See a neurologist! I had all of the symptoms you described. My regular doc missed the b12 deficiency - it was my Neuro who ordered b12 (came back low normal) and MMA test (came back high) and these two in combination resulted in my b12 deficiency in which I was prescribed b12 shots. They work!! It’s a long dose (6 months to a year) but I am amazingly better after the 7 loading doses!!!!

waveylines profile image
waveylines

171 seems low to me! What was the range (figures in brackets).

Cheekycow8 profile image
Cheekycow8 in reply towaveylines

Between 145 and 914

waveylines profile image
waveylines

It definately needs addressing. The question is whether your diet is low in b12 - non meat eater / vegetarian or whether you dont absorb it well such as PA or low stomach acidity. The latter often occurs as we age. Of its due to diet you may well be able to adress it with b12 tablets. If its due to lack of absorption you are going to need injections. Generally speaking if you have a low level like yours and have neurological symptoms you do need injections to bring your level up quickly to avoid/ minimize nerve damage.

I was referred to Neurology by my GP which was a six month wait. I was worried about permenant damage so chose to self inject. Made a massive difference to me and I improved immensely though I have to inject daily to avoid the neurological symptoms returning.......I dont know why I have to inject so frequently but I do. We are all different so there is no set best treatment, just what works for you. The NHS will severely limit how many injections on their standard protocol. The neurologist when I finally saw him backed me so I have my injections daily on the nhs now.

Hope this helps

fbirder profile image
fbirder in reply towaveylines

Wow! Daily is the best I've heard of for NHS jabs. Well done.

waveylines profile image
waveylines in reply tofbirder

Thanks fbirder. It was the GP......she was so amazed at the dramatic improvement she offered to let me have daily instead of alternate......Id offered to purchase the difference. She said no it helps you and can do no harm. An enlightened GP. 🤗🤗.

HopetoB12better profile image
HopetoB12better in reply towaveylines

How long have you been injecting daily? And did the Neuro say it is safe to do daily for an extended period of time? I feel like injections are a life saver but I wonder how long I will have to do it. I am waiting on results from my endoscopy - they took several biopsies fo check for infection/bacteria and other things that supposedly can cause the absorption problem. I get them in a week (it was 2 days ago). I am behind thankful for this wonderful remedy!!!

waveylines profile image
waveylines in reply toHopetoB12better

The neurologist wants to research into the effects of b12 on tremors he told me as he has had other patients say the same thing. Wanted to use my case. I dont think his knowledge of b12 was vast. Any excess b12 you excrete from the body like vitamin C so no known case of toxicity. Cant help you more than that with whether its safe. I think its more about individual need. Bit like level of thyroid hormone - what is safe for one person would be deadly for another.

fbirder profile image
fbirder in reply toHopetoB12better

There is no known harmful dose of B12. People with cyanide poisoning are given 5,000,000 mcg intravenously - twice.

stichtingb12tekort.nl/weten...

HopetoB12better profile image
HopetoB12better in reply tofbirder

Wow. That’s a lot of zeros!!

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