Pernicious Anaemia Society
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Self medication

Hi I would appreciate some advice about my situation. I have been a carer for a number of years and have suspected that I have had B12 deficiency. I experienced numerous symptoms, aching thighs, balance problems, pains in stomach, tingling toes, beefy tongue, mental fatigue and numerous repeated infections over perhaps 10 years. Due to bring a carer and the lack of success with the GP of the time, I ended up self medicating - at the time I had no choice. Now that my mother who I cared for has died I am greaving and pretty exhausted but also need to find if my health will allow me to get back to work. I have been taking Adenosylcobalamin, Methylcobolamin, and last year took a course of self injected Hydroxocobalamin (under the guidance of the B12d charity). Along with a multi-vitamin, folic acid and Ferrous oxide. Over many years and trial and error it seemed to be an effective combination. I now hope to get some clear indication of where my health is. Could anyone tell me how can I proceed to achieve a diagnosis considering the problems of having taken supplements? Are there any tests that I could have (even if I pay a private clinic) that would give useful information as to the possible cause? Something I might take to my new GP to clarify and avoid misunderstandings over my levels of B12, folic acid, iron. How should I proceed now i have arrived at this point? I think the deficiency has been around for many years but seemed much worse after I had an operation for Urethral Strictures in 2014. After very obvious improvements in all symptoms after discovering the benefit of B12 supplements, currently my symptoms have worsened due to the increased stress levels I suspect of my mother's death.

Hope you can help, thank you

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Hi Pebll I am so sorry to read about your mother's death and it is understandable that you are feeling so exhausted.

I think the best way forward is to be honest and straightforward in your approach to your doctor. Make a list of your symptoms, explain your past self-medication, the benefits you felt and how long ago it was that you supplemented with B12 as obviously if it is recent it will "skew" the results of a serum test.

You could ask whether your doctor would do an "active B12 test" or an MMA test but he/she may want to wait before doing so depending on the time gap.

You could also ask whether he/she would give you a "trial" of B12 loading doses to see if the improvement in your symptoms mirror those you had when you were self supplementing.

Were you given nitrous oxide as an anaesthetic when you had surgery in 2014 - if so this may have had an adverse affect on you B12 and may explain why you felt so much worse afterwards.

I am not a medically trained person but there are others on here who will be able to give you good advice.

I wish you well and bid you goodnight.

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Hi Pebll

So sorry for your loss. I lost both my (elderly) parents 7 yrs and 5 1/2 yrs ago and I can appreciate how it can be such a very difficult time.

Yes, I can understand you wanting, and perhaps 'needing', to get back to work. Well done you!

I can only agree with clivealive's suggestions and I do hope your GP will be sympathetic and supportive.

Lots of {{{Hugs}}} :)

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Thank you much appreciated!

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Hi,

I am sorry to hear about your mum.

"Are there any tests that I could have (even if I pay a private clinic)"

Have you ever had an Intrinsic Factor Antibody (IFA ) test?

This can help to diagnose PA but is not always reliable. It is still possible to have PA even if IFA result is negative or normal range (some GPs may not be aware of Antibody Negative PA).

stichtingb12tekort.nl/weten...

Flowchart in link above outlines when PA and Antibody Negative PA can be diagnosed in UK.Makes it clear that people who are symptomatic for B12 deficiency should have an IFA test and start initial b12 treatment, whether B12 level is low or within range.

IFA test can be carried out even if person has been supplementing B12 but may give a false positive result if carried out close to having a B12 injection. Doctors usually suggest leaving at least 48 hours and up to two weeks after a b12 injection before having test. I don't know how other types of b12 supplements may affect IFA test.

MMA, Homocysteine and Transcobalamin (Active B12) results can all be affected by taking B12 supplements.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

"how can I proceed to achieve a diagnosis considering the problems of having taken supplements?"

Do you keep a symptoms diary charting how your symptoms fluctuate in response to B12 treatment?

Is your GP aware of all your symptoms? I gave my GP a copy of the PAS Symptoms checklist with all my symptoms ticked plus added any that weren't on list.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

I also gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"....

and a copy of BSH Cobalamin and Folate Guidelines

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

Link about writing to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Link about nitrous oxide

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

PAS (Pernicious Anaemia Society)

If you think PA is a possibility, may be worth joining and talking to PAS, They can offer support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

Other diagnoses

Have other possible diagnoses been excluded?

It's not uncommon for people on this forum to have thyroid problems or other auto-immune diseases such as Coeliac disease, diabetes etc.

Thyroid Disease

Might be worth putting any thyroid results on Thyroid UK forum on HU.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

Coeliac disease

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

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

I am not medically trained, just someone who has spent years trying to find out what is wrong with me.

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Thanks very much for all of this. I begin to get the picture of what approach I need to take. I have printed the info in the links off to read. I've yet to approach my new GP as I've not been registered for several years- things have been pretty chaotic, and not been functioning that well. I had numerous blood test from my previous GP 5 years ago or so but nothing was flagged up at the time although I was constantly presenting with infections of different kinds. I'd not been able to keep a diary - a long story associated with my mother's illness and mental state. The best I can do is make a list of symptoms I guess. I'm half hoping that the significant stress I was under made things worse and if that subsides I may find myself in a different position in time. Joining the society seems like a good idea! I will request IFA and MMA tests and see how things turn out I guess. Many, Many Thanks!

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Sorry to hear are about your mother.

If I were you I wouldn't be that worried about finding the cause of your deficiency. Even if you were to get a positive diagnosis of PA there wouldn't be anything you could do above and beyond what you're currently doing.

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Thank you its good to have your support here!

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I'm so sorry about your mother, Pebil.

It seems from the neurological symptoms you've described that you may not have been absorbing B12 for some time and are quite severely depleted. I can appreciate you wanting to get back into work as soon as possible but this could be added stress and set you back. Having been a carer and going through bereavement means you probably do need time to rest and recover, if possible - stress and overdoing anything appears to hinder recovery in B12 def. and it may be that increasing frequency of B12 injections might help.

Re. new GP and diagnosis, I can identify with your problems and I'm afraid I opted out and now SI to avoid battle with new GP.

Re. finding the root cause, having had long standing digestive issues, I had a private endoscopy done quite a few years ago after a particularly bad bout of gastritis that had only been treated with Zantac. Endoscopy clearly showed H/Pylori. which, as you probably know, causes gastritis, in turn leading to B12 deficiency, as well as absorption of other vital nutrients.

I believe there is a breath test for H/pylori and it could be one issue to rule out or prove lack of absorption as well the answer to stomach problems.

Very best wishes Pebil

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Dear Polaris, Thanks very much for your post! That's a great idea imho, I will try a test, at very least it will give some much needed progress. Looks like they are readily available!

Your other posts are really informative too, having a good read!

Pebll

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