Recently given advice from GP to start B12 tablets over the counter but told I may need injections in 3 months time after being retested. Beyond exhausted and struggling to go to work, rest of my life on pause for now.
After 2 weeks went back and now started on loading doses of B12 injections.
I am new to PA and can't concentrate long enough to understand how to interpret my blood results. Is anybody able to explain to me in very simple terms please? I haven't ever needed to do this before and feel a bit dim! In no way medically trained and feels like I'm learning a new language- thank you for reading
My Intrinsic Factor antibody is 1.6 iu/mL 0.00- 20.00 iu/mL
Pareital cell autoantibodies - positive (no figures recorded)
Serum vitamin B12 156 ng/L 187-883.00 ng/L
Serum folate 5 ug/L 3.10-20.50ug/L
vitamin D 40 nmol/L >49.90nmol/L
Basophil count 0.02 10*9/L 0.03-0.51 10*9/L
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Bequia
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The guidelines are to not retest once injections are started. GP s will often stop injections once in range but this is a mistake you need injections for life.
Thank you Hectorsmum2 I've been feeling out of my depth but because you all know so much on the forum it's starting to make sense. Thanks for taking time to reply. I will have a better perspective next time I see the GP and certainly a lot more information 😀
Hi there, I've been where you are, probably about 2-3 months ago - overwhelming amount of information, isn't it? There is so much helpful knowledge here. Keep coing back, keep asking questions, no matter what - even if it's a very quick one, to help you move on to the next piece of the puzzle! I exhausted myself two weekends ago firing questions here there and everywhere, but I have learned a ton of info I have been using with the GPs.
I'm not very experienced, but looking at your Vit D, 40 seems low, but maybe not, because there isn't a complete range, just a 'less or greater than'. Vit D can cause all sorts of problems, and none of us get enough in the UK, assuming that's where you are.
I think generally it's suggested to keep good levels (min 50% through the lab range) of vitamins and minerals, to avoid deficiency and support your body. It's a whole system, so B12 and folate for example are necessary for each other.
If private testing is something you might do, then a test from Medichecks, Blue Horizon, MyHealthOnline, would establish base-line vit and mineral levels for you at this point. So if for example your Vit D is low, you could still have problems with fatigue despite your B12 shots. And you wouldn't know.
Your GP may or may not accept a private test, but if not, you will know where you are over time if you test even once a year. Medichecks do various tests and are used a lot here medichecks.com/collections/....
Generally people test for B12, Folate, Ferritin (iron stores) and Vit D. Your B12 would of course come back super high which is to be expected on injections.
If you do decide to test, check on here for the right preparations to avoid a skewed result - I can't remember right now (brain fog) but early in the morning, fasting (water only) and something about not taking supplements for a period beforehand. Someone more knowledgable here will help you out for sure!
Some things to get you started anyway.
I hope you get benefit soon from your injections.🌸
Thank you so much Sneedle, that's very helpful.I'm so grateful to have found the PA society and to have accessed the forum. It's reassuring to learn from others with similar experiences xx
It's a right old do for sure, all this information gathering, while you're ill. Who would do a crash course in nutrition when you're ill?!
My daughter will start B12 injections this week, and I'm sorting out my thyroid medication before going back to gp who has offered monthly B12 injections for me. In all this sea of information, the private blood tests are a fantastic anchor as you can track levels against your symptoms. Rather than spending money on supplements and not knowing what's helping and what's not. You can also ask for information on the good quality and worthwhile brands of supplements at the best price - someone will help you. If you don't get a reply as sometimes happens (not often though), repost and ask again. X
"something about not taking supplements for a period beforehand"
Avoid biotin 3 to 7 days before a blood test. Often found in a B complex. Biotin interferes with many assays & can skew results. High doses like in hair/nail supplements you need to stop for about a week, at lower doses you're fine to skip just a few days.
100 % agree with Sneedle about the vit D! that can make you tired and your vit b was really low. stay on daily injections. I still do them after 2 years. I had your level and was absolutely bed ridden.
I would a confirm also that your vitamin D is very low - that needs to be at least 100 or more for optimum health. Folate low too, especially when B12 deficient. Mine was 5.2 before I started EOD injections. I managed to double it in a few months after taking folate and a B complex.
This video is specifically about Vit D & covid, very informative I think:
The video, like many posted by John Campbell, is misleading. Evidence from well-run randomised controlled trials (not anecdotal accounts from doctors like the above) indicates that vitamin D supplementation, beyond that of correcting deficiency, does not affect outcomes versus COVID-19. More detail including interviews with the researchers who ran the trials, papers etc are in my previous post on the subject here: healthunlocked.com/pasoc/po...
I didn't say that anecdotal accounts are "invalid". But anecdotal accounts are evidence from the very bottom of the evidence hierarchy. They are subject to bias, confounding (other variables which changed or affected the outcome at the same time), have no control group for comparison, no blinding and are vulnerable to placebo or nocebo affects. A well-run randomised controlled trial is a much higher standard of evidence since it accounts for most of the potential problems with anecdotal information.
This doesn't mean anecdotal information is useless or has no value, it just means that when good clinical data such as RCT's, good meta-analysis and the totality of the evidence contradict anecdotes, the clinical evidence higher up the evidence hierarchy bears greater weight.
I think we've gone off on a tangent here. The video was useful from a point of view of how important vitamin D is -my focus isn't about Covid outcomes as such. I can see hard evidence is your thing.
Thank you all, it's helping me that you 'get it'.Had my thyroid removed after a thyroid storm and was told I didn't need my b12 checking as the cause of my exhaustion had already been ascertained.
I actually feel relieved to have an explanation and finally some hope.
I hope one day I can give support to someone else on this journey too. I have been thinking I'm exaggerating to myself or lazy, but now I feel validated. This IS crippling and it IS genuine.
I wish you well too and feel so lucky to have access to lovely people who are able to offer insight. Looking for positives and feeling hopeful xx
It's vital to get adequate treatment. Inadequate treatment may increase the risk of developing permanent neurological symptoms. In severe cases the spinal cord may be affected.
Have you considered joining PAS (Pernicious Anaemia Society)?
Membership of PAS is separate from membership of this forum.
I urge UK forum members to find out what's in the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England and Health Board in Wales/Scotland.
Some local B12 deficiency guidelines in UK are not helpful. See blog post below.
Some UK forum members turn to treating themselves when NHS treatment is not enough.
Some get extra injections from private GPs or beauty salons. Some try high dose oral tablets but these don't work for some people and some as a last resort try self injection (SI).
There is more info I could pass on. Just let me know if you want more and I'll post it.
Good luck and fingers crossed that you get the treatment you need.
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Confused & could do with some advice please...
Confused 
Confused about injection frequency
Soooo confused!
Confused 
