Hi, I am new to posting on here. I had my first B12 injection in June 2017 and have not had another one since. How long does it take for low B12 symptoms to come back please? I have copied ones from the pernicious anaemia site as well as ones I already suffer from like coldness to skin, constipation, swelling at front of neck, eyebrow loss, eyelash loss. Thankyou
Shortness of breath especially when walking uphill
Fatigue
Brain fog
Poor concentration
Short term memory loss
Confusion
Clumsiness and lack of coordination
Mood swings
Brittle and flaky nails
Imbalance
Feeling dizzy and faint
Bumping into things
Numbness and tingling
Tinnitus
Irritability/frustration and impatience/aversion to bright lights and crowded spaces
Sleep disturbances
Hair loss
Burning in arms and legs
Vertigo
Eczema and acne
Slow heartbeat
Coeliac disease
VITAMIN B12 171 (190 - 900)
FOLATE 2.2 (2.5 - 19.5)
Thankyou again
Written by
Pixie1718
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What were you told about B12 deficiency/PA when you were diagnosed?
Did you have a full blood count and do you know what your iron levels were like? And did you have any thyroid tests (TSH is the most common one - though that i a long way from telling the whole story).
Also, what country are you based in - UK? Treatment varies from country to country.
PA is one condition that will cause a B12 deficiency. Lack of B12 is another possible cause but this seems unlikely as you also appear to have a folate deficiency which makes it much more likely (unless your diet is exceptionally bad - no veg, fruit, meat/fish/dairy/egg.
Other conditions that will lead to absorption problems include coeliacs, crohn's, h pylori and a number of drug interactions. I notice that you list coeliacs above. It is also possible to have both PA and coeliacs.
If you have an absorption problem and you had neurological symptoms (which you do from the above), and assuming you are UK based then you should have had a series of loading doses (3x weekly until your symptoms improved - review at three weeks) and should then have gone on to maintenance does every 8 weeks. You should not have just been given one B12 shot with no follow up at all.
If you have an absorption mechanism this means that the mechanism that most people use to store and keep their B12 levels even is also broken - as the release relies upon the same mechanisms as you use to absorb the B12 from your food. When you have a shot of B12 it raises the B12 levels in your blood to astronomic levels ... your kidneys then start removing it at a rate of knots - 50% goes in the first 24-48 hours - but the rate gradually decreases as the levels get lower. On average it takes 2 months for your levels to drop back below the normal range ... so if you only had one shot back in June then the chances are that you are now going to be below the bottom of the normal range again.
Things don't always work that way though because serum B12 is only measuring what is going on in your blood - it doesn't measure what is happening in your cells which is where B12 is used for a number of processes. Some people respond to high serum B12 by shutting down the mechanism that allows B12 to move from your blood into your cells. When their levels are really high enough manages to trickle through but once it drops below a point (which varies from person to person) they are left with not enough in their cells. That means that the normal range doesn't apply after a loading shot and treatment should, ideally be based on return of symptoms ... though this isn't fully reflected in standards in the UK.
There is a strong cross over between auto-immune thyroid conditions and PA, and about 40% of people with PA go on to develop autoimmune thyroid conditions, but at the moment it sounds as if the problem really is that you are not being treated properly for the B12 absorption problem.
Also: were you given any treatment for your folate deficiency.
a) IFA is a good test for showing that you do have PA - it's a crap test for showing that you don't have PA. This is because it rarely gives false positives but it gives false negatives 40-60% of the time. Result coming back negative most definitely does NOT mean that you don't have PA. The guidelines produced by the BCSH (British Council for Standards in Haematology) refers to IFA negative PA for this reason.
PA is the most likely reason for your B12 deficiency.
You also have auto-immune thyroidosis and that would appear to be chronically undertreated from the results above - but hope that people on TUK can help you on that - if you are on levo then most people need to have TSH below 1 to feel okay and T4 and T3 need to be at the top end of the range.
b) your body uses B12 and folate together for a number of key processes in the body - if you continue to be folate deficient these processes will continue not to run properly. It is recommended that folate treatment starts after B12 treatment because there is a very small risk of causing SADC but the time lag is 24-48 hours not months and months ...
Please go back to your GP and ask them to give you loading doses and start you on folate promptly.
so the endo doesn't want to treat you properly because he doesn't want you to lose weight?
You obviously have problems absorbing nutrients from your food - why doesn't he want to get that investigated - seems like it would be a much more effective way of ensuring you don't lose weight.
Might be worth joining PAS. They can offer support and info about PA. They are based in Wales, UK but have members from around the world.
PAS members can access contact details for PAS support groups. There may be one close to you. Not all PAS members have a diagnosis of PA, partly due to difficulty in getting a diagnosis.
I have written some very detailed replies recently, may be worth searching for them.
Coeliac disease
Coelaic disease can be a risk factor for B12 deficiency because it can affect the gut. It's possible to have more than one cause of b12 deficiency at the same time. Having one auto-immune disease can be a risk factor for developing others eg PA
UK charity that offers free second opinions on medical diagnoses and medical treatment.
"I just have low B12 symptoms not PA as intrinsic factor came back negative and I am in UK"
It is possible to have PA even if IFA Intrinsic factor Antibody test result is negative or normal range. Sadly some UK doctors may not be aware of this.
Flowchart below outlines when PA and Antibody Negative PA can be diagnosed in UK.
Interpreting FBC is potentially more difficult if someone has iron deficiency, folate deficiency and B12 deficiency as deficiency in one can mask deficiency in another.
Low iron can lead to small red blood cells (microcytosis) and low b12 and/or low folate can lead to enlarged red blood cells (macrocytosis).
A blood smear, also known as blood film may be useful. It may show both macrocytic and microcytic cells in someone who has both iron and B12 and/or folate deficiencies.
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