Latest BMJ research document on PA/B12def. with useful summary if GP won't read the whole document. A good idea to take someone close for support at your next appointment as low B12 and the neurological symptoms you are experiencing should be treated without delay every other day until no further improvement to avoid permanent damage:
Hi Catriona1505 are you saying that you told your doctor that you have all the above symptoms and with low B12 and deficient Folate readings he has not offered you or suggested any treatment? I am absolutely astounded
your results show clear folate deficiency and possible B12 deficiency.
serum B12 isn't definitive as a single indicator of B12 deficiency - people vary a lot when it comes to B12 levels and used as a single measure it will miss 25% of people who are B12 deficient (and pick up 5% of people who aren't).
whilst your symptoms could also be due to folate deficiency treating a folate deficiency in preference to a potential B12 deficiency is problematic and can lead to permanent neurological damage.
Ideally GP should start treating with B12 shots and then 24-48 hours start addressing the folate deficiency. If your GP feels that they want further clarification before treating then MMA test should help clarify.
Catriona - You must feel rather unwell... My advice is not to wait for GP to contact you, you could wait for ever... but on Monday ask to have an urgent appointment and ask for B12 injections treatment. Do not let your GP fob you off.... You need treatment to begin asap. It is also most important for you to know whether it is only B12 deficiency or PA (pernicious anaemia) as the treatment will be long term injections for PA, for life.
Wishing you luck and hope you will start to feel better once treatment has started.
As I understand it, if you 'only' have b12 deficiency as you put it, due to malabsorption, you still need treatment for life. The symptoms are the same, just as debilitating but you make it sound as if it isn't. Plus, many people may have PA, despite testing negative.
B12 deficiency is debilitating of course and needs on-going treatment. Unfortunately in U.K most GPS don't follow the guidelines and post loading doses patients have to wait too long for their maintenance injection which is wrong. As I understand it once there are no more neurological improvement then GPS only prescribe maintenance doses of B12. If one has PA B12 injections are for life every other day.
Indeed the tests for deficiency and absorption problems are flawed and too many patients suffer as a consequence and need to "fight" for treatment! This is so wrong.
You need to start treatment now! I had majority of these 🙁doctor thought I was crazy 😒 it just gets worse and worse. Before I'd just stare at my hands and notice the colour pigments was changing? Like orange/blue fade colour. Get cold shocks and just have panic attacks and couldn't relax had to Bath about 5times a day just to get warm and relax id notice a panic attack by feeling my neck muscles get stiff and my face 😕I really suggest you get your doctor to rethink b12 injections! Refuse folate Meds until b12 is back up! Doctor failed this for me and made my b12 crash even more 😑
Flowchart makes it clear that in UK, patients who are symptomatic fro b12 deficiency should have an IFA (Intrinsic factor antibody) test and start initial b12 treatment. This applies whether or not B12 is low or within range.
B12 Deficiency Symptoms
I gave a copy of PAS list to my Gps with all my symptoms ticked.
IFA test can help to diagnose PA (Pernicious Anaemia) but is not always reliable and it is still possible to have PA even if IFA result is negative(called Antibody Negative PA).
There are other causes of B12 deficiency besides PA. See lists below.
What does your GP think is causing low folate and borderline B12?
To be honest with all the symptoms you have listed and your results, I'm surprised you have not been offered treatment.
Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.
My experience is that some doctors are not as well -informed about b12 deficiency as they could be, so I'd suggest reading up as much as you can about it.
Other sources of B12 info
1) Pinned posts on this forum. I found fbirder 's summary of B12 documents useful to read. Link to his summary in third pinned post.
2) PAS (Pernicious Anaemia Society)
I'd suggest talking to them soon. They are sympathetic and can point people to useful info.
Your folate level is below range. I have read that if someone is folate deficient, it is important to make sure any co-existing B12 deficiency is also treated. See Management section in next link.
the risk is extremely small. it doesn't apply once serum B12 levels have been raised by injection. Standards recommend leaving supplementing folic acid until 24 hours after treatment with B12 starts.
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Newly diagnosed with PA. Need encouragement!
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Recently diagnosed coeliac and PA.14yrs symptoms.Long fight 4 diagnosis.
