Could b12 deficiency be my problem? - Pernicious Anaemi...

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Could b12 deficiency be my problem?

charlianne profile image
12 Replies

Hi. Thank you for the add. I'd like to share my story with you to see whether you think I am barking up the wrong tree with b12 deficiency.

I am 34 mum of 3. I haven't felt 'Right' since my second child was born 4 years ago and have since had another baby and beast fed for 2 years. I have had unexplained out of character anxiety and panic attacks and very low energy.

In December of last year I woke with severe vertigo. I was diagnosed with labrynthitis ( inner ear infection) and told to rest. Since then have been unable to drive and work and have been pretty much house bound. I was then diagnosed with migraine associated vertigo and put on amitriptyline ( anti depressant migraine preventative) which am responding to but continue to have attacks. . They don't know what's triggering it. My b12 is 385 so in middle of my range but a lot of symptoms I have are those of b12 and I scored 90 on the test on here. My symptoms are. ..

Vertigo, constant off balance, feel drained, light sensitivity, headache, tinnitus, tingling fingers and lips , numb face, memory problems, struggle finding words, brain fog, heavy painful periods, short of breath, palpitations, high resting heart beat, spotty arms, world feels surreal, diarrhoea, anxiety, disturbed sleep, wake up groggy. I also feel better after I eat, especially meat, and struggle if I don't eat every few hours. Anyway, am interested to hear your thought as I know my b12 doesn't seem too low at 385. Am desperately trying to find what's triggering all these symptoms as they overlap into many different things

In addition I also suffer with endometriosis which I am being treated with the mini pill.

I have my levels and other results

My results were tsh 2.69 ( 0.2-4.0)

T4 12.2 ( 9.0-19.0)

Ferrotin 72 (10-220)

B12 385 (187-883)

Folate 9.5 (3.1-20.5)

Not sure what any if this means as everything is within range

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charlianne
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12 Replies
wedgewood profile image
wedgewood

Dear Charlianne,

Some of your symptoms definitely sound like B12 deficiency. The B12 test is notoriously unreliable,as acknowledged by the latest paper from the British Haematological Society. Youneed to have a blood test to find out if you have the antibodies to the intrinsic factor which if positive indicates that you have Pernicious Anaemia(although youcan have P.A. and not show the antibodies!) You could try taking methylcobamalin sub-lingual tablets,(Amazon) but they didn't work for me. You will get other replies which willprobably be more helpful than mine. But be assured, you willhave lots of support from this site. I do wish you all the very best!

LinDonaldson profile image
LinDonaldson in reply to wedgewood

Dear Wedgewood,

Could you post a reference for the paper from the British Haematological Society that you mentioned above?

Regards and Thanks

Lin

in reply to LinDonaldson

Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders

British Society for Haematology

bcshguidelines.com/document...

LinDonaldson profile image
LinDonaldson in reply to

Thanks so much. I am seeing haematologist to discuss diagnosis and treatment options for persistent anemia.

Regards

Lin

in reply to LinDonaldson

Good decision! Marre.

Marz profile image
Marz

Am wondering what time of day you had your test done - in particular for the TSH - Thyroid Stimulating Hormone. TSH is highest early in the morning. Your result is in range but still considered high by those that think outside the box. Your FT4 - is certainly on the LOW side which means that your FT3 will also be LOW. T3 is needed in every one of the trillions and trillions of cells that make up the body - the brain has the greatest demand on T3 followed by the gut. T4 is a storage hormone and converts into the active hormone T3.

Thyroid hormones are affected by levels of Iron - Folate - B12 - Ferritin - VitD - they need to be optimal for an efficient conversion. Your Ferritin looks good but do not neglect it. I personally think your B12 result is quite low - especially as you are experiencing so many symptoms. We have to remember that B12 works in the cells of the body so what appears in the blood is only part of the story. In fact I think only about 20% of the serum B12 reaches the cells - in that case you are lacking. Of course we are all individuals and some people can bump along with low levels and no symptoms. In Japan the range starts at 500. :-)

It may also help to have your VitD levels checked - D is a steroidal pre-hormone as well as being anti-inflammatory - so will again aid the hormones.

vitamindcouncil.org Click onto Health Conditions at the Top - lots of surprises :-)

b12deficiency.info/signs-an...

Lots of useful information in the above link.

Hypothyroidism and low B12 often go hand in hand - chicken or egg ? I have Hashimotos and LOW B12.

Sometimes gut disorders can prevent good absorption levels too - sorry lots to think about.....and hope you soon feel stronger.

Hi charlianne,

Your symptoms seem very much B12, in your case I think trying (cheap) B12 injections to see if that helps you would be good. B12 injections can not do you any harm, but will be far better for you than the amitriptyline. If B12 makes no difference then fine it did not work, but it will not do you harm either. I know some one with same type of symptoms as you ( labrynthitis ), she has now been diagnosed with lupus, have you had tests for lupus? Again notoriously difficult to diagnose and treat, but cross that bridge when you need to.

I hope this helps,

Kind regards,

Marre.

Grifter profile image
Grifter

Hi, in my opinion you are definitely b12 deficient. You have same symptoms as I had after my 2nd baby. I had already been diagnosed with pernicious anaemia and was having injections every 3 months. I now know this is not enough for me and self inject more regularly which changed my life. I was diagnosed with anxiety disorder due to severe panic attacks, had to give up work etc. didn't drive for 3 months, vertigo, everything you've described. Breast feeding depletes your b12 even further so given how long you fed for it sounds like a link

As someone has mentioned due to tests being found to be inaccurate a large percentage of the time, guidelines for gps now suggest that they go by your symptoms rather than test results alone. My suggestion would be to print off the list of symptoms from pernicious-anaemia-society.org and take them to your doctor along with the info regarding the tests. Ask for b12 injections. Hopefully they will listen to you. Stomach issues can cause b12 deficiency as it stops you absorbing the b12. So if that is the cause then b12 tablets or eating foods rich in b12 will not help.

Good luck.

charlianne profile image
charlianne in reply to Grifter

Hi would you mind tellingly me a bit more about your experience, your symptoms and how you were diagnosed xx

treacletart33 profile image
treacletart33

I totally concur with everything everyone else is saying. I have had pernicious anaemia for 14 years and have had "viral labrynthitis" 4 times in that time. I now think, after reading all the info that is available on this site and others about pernicious anaemia, that it was really just a symptom of PA and not viral labrynthitis. I've learnt a lot about the condition and my symptoms recently. Don't give up and don't be fobbed off. x

charlianne profile image
charlianne in reply to treacletart33

What symptoms do you have xx

Ashishk profile image
Ashishk

Hello, how are you doing now...is I saw this post is almost 2 years old...so I wana ask sis u find any answer regarding what was actually happening...I have similar symptoms like u had..I want to know how are you doing now and what was the issue...???

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