Pernicious Anaemia Society

B12D causes? Ideas?

Hi everybody, I just joined and this is my first post, ever in a health forum so sorry if my post isn't put together well haha. I was dx with a B12d may 2016 (hospitalized actually in Costa Rica) they thought I had MS. Had horrible symptoms for years but didn't doctors ignored until I could barely walk and a million more nuero symptoms. Finally feeling a million X's better after injections (I inject myself about once a month now). It's been a LONG journey I've learned a lot so any questions anyone new to it has feel free to ask me 😃

BUT my question is for anyone whose been at it for awhile is WHY can you absorb B12 I've seen the Gastro for every test there apparently intrinsic factor is fine (every thing was normal) saw a neuro for infectious diseases and parasites. Basically I'm perfectly healthy except for my b12 being at 70 last year!

I was wondering if you all any input. I would love to not inject for the rest of my life I'm 28 years old. Injects are fine but I get horrible acne and gain weight like crazy... but can't live without them.

Glad to be here!

Thanks

Maggie

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Hi MaggieMaeJohnsm are you now in the U.K?

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 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), 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.

Obviously you can rule out "age" but do you "see yourself" in any other of the above "people"?

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.

Do you know what your Folate level is? Some symptoms of a deficiency of this are similar to those of B12 deficiency.

I am not a medically trained person but have had P.A. for more than 45 years and there are others on here who will be able to give you good advice on any of your answers.

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Clivealive, thanks for the response! I am not in the U.K. I am actually from the US didn't realize this forum was U.K. Based. oops! So I should have states before that I've done a good amount of research and the doctors did all the the tests that you stated. Basically my GI doc told me I am a mystery... to her. H pylori neg, celiac neg,, not the intrinsic factor, not vegan/veg, no family history, no GI issues.

BUT the only think I had been taking for about 7 years (how long it would have taken to develop such low levels was an SSRI anti depressant and a high blood pressure medication. I have been off them both for about 2 years now. But still am not absorbing. So unless they could have irreversible damage? But I haven't seen anyone make a correlation with those meds (in my research) So no clue!

Thanks again for the information 🙂

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Oops! :)

Don't worry about being an American on this forum - questions come here from all over the world which serves to highlight the amount of "ignorance" about B12 issues there is within parts of the "global medical profession" as well as "us" the patients.

I think it was Sleepybunny who mentioned the Pernicious Anaemia Society - their website is well worth a look.

I wish you well and bid you goodnight from the U.K.

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I will look at Pernicious Anemia Soceity website as well I think I may have been on there before but always worth another look. And yes from all my research and personal experience many many of the 'medical professionals' lack a good or any understanding of PA... the treatment, cause and much more. Ah anyways just keeps me more motivated hahah have a goodnight! 😴

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Please also note that all tests have their limits and sometimes give the wrong result.

IFA is at the high end of giving the 'wrong' result - producing false negatives 40-60% of the time depending on the assay method - so a negative is a long way from proving that you don't actually have PA, whereas a false positive is much less likely but possible, particularly in the case of recent injections before the blood is taken (depends on the assay method and varies from about 24 hours to around 2 weeks).

So, basically the test result is an indicator - positive on IFA is a good indicator that you have PA (high probability). Negative is a very poor indicator that you don't have PA (low probability).

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That's really good to know thanks! I had definitely been taking injections right before the test.

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Mentioning weight gain had me thinking you could be suffering with Hashimotos - auto-immune thyroid - as this can result in poor absorption of vitamins and minerals generally. As can being plain Hypo ! If you have been tested - take a look at the results and ranges and see what was tested - often it is TSH only - which is a small part of the story. Wider testing needed .... happy to help.

I am a Hashi's girl with a B12 issue !

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Marz. Thanks for your response! I need to find my results for thyroid I know they did it but said it was fine? What would wider testing intail?

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When they say fine - they mean in range - it is where you are in the range that is key. The full profile is TSH - FT4 - FT3 & Thyroid Anti- bodies TPO & Tg.

FT3 is the most important test and rarely done. The Thyroid produces T4 - a storage hormone and needs to convert into T3. There is a T3 receptor in every cell of the body so when the result is low there simply is not enough to go around. Then things begin to go wrong as the metabolism slows.

If your GP is not able to order the correct testing then you can have it done privately with Home Testing kits. See link below and click onto About Testing for all the companies.

thyroiduk.org

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Thanks!! I am definitely going to do that!

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Best to post results on Thyroid UK Forum for comment . Just read you are in the US so UK testing details are of limited use -ooops !

In addition to the Thyroid tests also add Ferritin and VitD .

Will look out for your results 😊

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Quick question I found my TSH result from last year when they discovered my B12 levels. It was 0.97... that's almost hyper isn't it? I am going to speak with my doctor this week about the the other test you mentioned too!

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It is low but do consider the possibility of Hashimotos - when you can swing between Hyper and Hypo. You need all the tests done together - TSH - FT4 - FT3 and the Anti-bodies TPO & Tg. Ferritin and VitD too 😊

To complicate matters there is also Central Hypothyroidism rather than Primary. Low TSH FT4 FT3 can point towards Central - a Pituitary issue.

Do you feel hyper ? Check out the list of signs and symptoms in the link above for Thyroid UK.

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From what I gatheredfrom the list I don't feel hyper, my symptoms would learn more hypo.. but ever since I've taken b12 my exhaustion is gone! And everyonesays that is such a huge symptom. But I think I just need to do ALL the tests and check it out. 😅

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Hi,

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is 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 book about B12 deficiency with lots of case studies.

B12 websites

1) PAS (Pernicious Anaemia Society)

UK based but has members from around world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

2) B12 Deficiency Info website

b12deficiency.info/

3) There is also b12d.org (UK based charity) and B12 Awareness (USA website)

UK B12 info

If you're in UK, I'd suggest reading

1) BSH Cobalamin and Folate Guidelines

Uk document that outlines treatment and diagnosis of B12 deficiency and Folate deficiency.

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

"apparently intrinsic factor is fine"

Flowchart below from BSH Cobalamin and Folate Guidelines acknowledges that it is possible to have Antibody Negative Pernicious Anaemia (PA where Intrinsic Factor Antibody test has a negative result).

stichtingb12tekort.nl/weten...

I don't know if Antibody Negative Pernicious Anaemia is recognised in countries other than UK.

2) BMJ b12 article

bmj.com/content/349/bmj.g5226

3) BNF British National Formulary Chapter 9 Section 1.2

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

cks.nice.org.uk/anaemia-b12...

I am not medically trained just someone who has struggled to get a diagnosis.

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Sleepybunny, that's a great list of info! I will definitely take a look. I am glad the b12 injections have helped my symptoms obviously! But when a supposed specialist tells me maybe this was just from a parasite you picked up (I live between the U.S. and Central America) and that it was a B12 episode. "I was like umm pretty sure it doesn't work that way... but thanks for your help?" haha.

But thank YOU for all the information and your response. Probabaly should have joined a group a while ago 🙂

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There are at least half a dozen snps that can affect b12 absorption. Probably more now since I did the research about a year ago. Tcn1 and tcn2 affect the mechanism that transports b12 across the cell membrane as best I remember. So theoretically you could have a serum of 1000, but it's all bound to haptocorrin (sp) and most of it gets lost in urine. Hence massive doses of b12 since it can only enter the cell through passive diffusion.

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That's very interesting I'll have to look into that more as well! Thanks!

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I think clivealive has provided some good comprehensive information. I was diagnosed with pernicious anaemia over 30 years ago and 3 of my nephews and a niece have B12 deficiency diagnosed in there early 20's. None of them are alcoholics but all enjoy a good drink at the weekend. Interestingly one of my nephews has changed his lifestyle and stopped drinking alcohol, for the first time in 3 years his B12 is normal and he has been taken off his 3 monthly injections.

While I am sugesting for one moment that your lifestyle is to blame, I do believe that chronic gut inflammation caused by many things plays a role.

I hope you don't need life long treatment however, you need to be life long aware. Ensure your folate level is good because it works hand in hand with B12.

Good luck!

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I thought I was the only one who had the weight gain problem , nice to know I'm not alone :) !!

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Yes it is super frustrating!

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"a supposed specialist tells me maybe this was just from a parasite you picked up"

If they think it might be a parasite, have they tested for parasitic infection?

pernicious-anaemia-society....

en.wikipedia.org/wiki/Diphy...

Some people with a parasitic infection may have increased levels of eosinophils, a type of white blood cell.

labtestsonline.org.uk/under...

Have you been tested for H Pylori infection?

patient.info/doctor/helicob...

patient.info/health/helicob...

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I think they mentioned the parasites because of the places I've lived. But yes they tested for parasitic infections via blood, stool and even an ultrasound of my heart! (They sent me to a infectious disease specialist- because I got Dengue fever). And yes H. Pylori was negative too. And also the biopsy of my large intestine and stomach. The only thing they never took a look at was my small intestine. But assured me it could not cause an issue?

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"The only thing they never took a look at was my small intestine"

"assured me it could not cause an issue"

I have read that some people develop B12 deficiency due to abnormalities of/conditions affecting the ileum. B12 absorption takes place in the terminal ileum.

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