I recently had some blood tests and my B12 came back low at 180, normal range 197-771. My folate was 4.7, normal range 3.9-26.8. Full blood count and ferritin fine, I had iron deficiency anaemia and have been successful treated for that and all those levels looking good.
My question is, at what level should low B12 be treated? I’m supplementing myself with a BetterYou spray, but I am exhausted all the time (it’s been put down to long Covid) and over the last week or two I’ve been getting weird sensations pins and needles like feeling in my fingers (not constant) so got me thinking if it’s related to the B12… I have a telephone consultation with my GP in about 4 weeks time, but the recommendation was to check my bloods again in 3 months, but I’m not sure how much I should push this to get them done sooner or not… or if anyone has any recommendations of anything better I could be using to supplement myself until the next blood test?
I would treat your level with B12. Many countries don’t like to see it under 500 and anywhere under that.
Also, many doctors from what I’ve read are treating long covid with B12 and Vitamin D. Studies have shown many people that are deficient in either are getting long covid.
It actually makes me wonder is it long covid or is it a vitamin deficiency.
I’m still learning even after having injections for over a decade. Now that I inject more frequently many of my issues/symptoms have went away.
Thank you for replying! That is so interesting re the link between long Covid and vitamin deficiencies… I’ll push for a sooner appointment and ask if the bloods can be repeated sooner… thank you!
Welcome here. Unfortunately, PA/B12 deficiency is poorly understood and many of us are very symptomatic but have levels ‘in range’. Yours is low and you have symptoms.
You have symptoms of fatigue, pins and needles. Plus, a medical history of Turner Syndrome, Iron Deficiency Anaemia, Thyroid Disease, Long COVID currently waiting results from liver scan and you have had a negative blood result for Coeliac Disease. Although, you may have Non Coeliac Gluten Sensitivity. The only way to know is give up gluten and see how you feel. Sorry, if I have missed anything out.
Unfortunately, 70 % of the immune system is in the gut. So, anything like COVID can trigger other illnesses. Plus, nutritional status is important with COVID and recovery.
‘Vitamins A, C, D, E, B6, B12 and minerals are crucial’ from Pal et al (2022) Role of Nutrition and Diet during COVID-19 pandemic: A narrative review. J Family Med Prim Care. 11(9):4942-4948
No need to read the whole lot. Scroll down to the section just before the Conclusion.
You are being proactive and using a spray which to date has had no effect. Many of us have tried sublingual (dissolves under tongue), B12 patches and nothing works. Everyone of us is unique. Some people manage on tablets 🤷♀️
In the U.K., each Integrated Care Board, Trust or Health Board have their own cut-off levels. So, it varies where you live to treatment which is colloquially called the Postcode Lottery. Then there are different ways in individual GP practices treat and even differences in GPs within the surgery. The best advice I can give is join the PA Society and give them a ring or send them an email. You will also have access to their very informative literature. At your next appointment you may want to consider asking for a referral to a Dietician.
Also it is worth noticing if your appetite has been impacted, have you gone off certain foods ? Or are craving certain ones ? Keep a food diary and a sign of good health is not only your toileting habits but what your stools look like. Here is a link to the Bristol Stool Chart.
Thank you so much for your reply and all your detailed information and links, it’s so helpful and very much appreciated! I think I definitely need to get a sooner appointment with my GP and get this all sorted…
From what I understand, you have thyroid disease so you have all these vitamin deficiencies. Your symptoms are definitely of B12 deficiency and you shouldn't be waiting to get treatment, as it will only get worse. How much B12 does the spray have? You need at least 1000mcg oral/spray etc. to have any effect, and that is for maintenance and will take time to kick-in if only on it. I suggest you take a 4-8 weekly shots and then you may go to 1000-2000mcg orals or monthly injections.
Also, I may mention that there are studies and also my personal experience that cyanocobalamin oral works better than the now more common methyl version. Good luck!
Thank you for your reply… the spray is 1000mg so I’m guessing it probably isn’t strong enough then? My plan is to contact the GP surgery this morning and see if I can get things sorted sooner… thank you!
It's not that it is not strong enough and more that it is not being absorbed by your body. You could try sublingual B12 (high dose). If that does not help you need injections.
This is a link to the bmj best practice for b12 deficiency. It identifies that your serum level indicates probable deficiency. This diagnosis is confirmed as you have classic neurological symptoms of b12 deficiency. You should be treated with b12 injections every other day until no further improvement.
Further blood tests if you are supplementing orally is going to confuse the situation and might make the GP not give you the treatment you need if a future test shows a small but clinically meaningless increase in serum levels.
I would decline further tests and ask that you are treated for b12 deficiency.
It is worth noting that b12 deficiency and hypothyroidism are common co morbidities - both are usually autoimmune conditions. As one wise physician once said, if one autoimmune disease is present look for others.
I agree with these suggestions. The excellent B12 summary article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency", goes into oral vs injections in some depth, and specifically warns that a person who is not able to absorb sufficient B12 through the digestive tract and supplements orally runs the risk of raising serum B 12 levels enough to boost test results into the normal range, but not enough to make B12 available to cells.
This article also emphasizes that B12 deficiency is a clinical diagnosis, based primarily on signs and symptoms, rather than a diagnosis based on blood chemistry results. Blood chemistry results can help to validate a clinical diagnosis, but cannot rule out a diagnosis of B12 deficiency. Based on symptoms, the patient should be started on B12 injections. When there are neurological symptoms, injection frequency should be twice a week or every other day, or, at minimum, once a week. If the doctor is not sure of the diagnosis, a trial of injections every other day for 3 months should be begun, at which time there should be a thorough evaluation for improvement in symptoms. Of course this means that there should be a thorough evaluation for symptoms at the onset. Here is one listing of B12 deficiency symptoms:
There are other good sources online as well. Maybe someone else will suggest one or two. Incidentally, there is little actual research into B12 deficiency symptoms, so listings of symptoms are based on observations by patients and clinicians.
I suggest that you read through the symptoms in the above link, or other lists of symptoms, and mark the ones that you have, and for each one that you have, describe severity in terms of frequency, resulting limitations, and so forth, so that you will be able to document any decrease in symptoms.
When you see the member name Hidden, it means the member is no longer a member and will not get a reply from that member. This link below takes you to an explanation.
I've seen many people sign up, then leave within minutes or hours.
I really don't know why - at least partly because we usually can't contact them to ask!
However, we on Thyroid UK have had a number who have been serial joiners/leavers. Who have joined - posted/replied, then immediately left. Only to rejoin the next day, the next time they want some information. Maybe they used a member name that revealed their real name and they want to anonymise themselves? Or they are embarrassed by something? Or they just want to totally disengage for a while? Some seem to think that is what is expected - post and go.
One in particular did this over many years. The long-term admins would recognise her quite quickly and some of the contents of her posts/replies made it absolutely unique to her. And every name she used had a certain characteristic in common. Also, VERY helpful and nice to interact with.
If it is an IT issue, well, there is nothing to be done other than contact HU support. But all too often the name is not easily found - maybe in a daily digest?
hidden, you must change from hidden before I can answer. If you truely have this problem we can help but please update what you need to update to fix the hidden profile
your issue is real and we know it. No one has to know though but you! You are the key more than you know. It's a real struggle and it takes courage. But by the fact you found us, means you have that courage. When you feel like giving up, that's ok. Take a break and get back at it. When I didn't feel like doing injections I just asked myself, do I want to get better? And it would convince me to switch my brain into doing it and switching my thoughts to positive thoughts. Like that we are lucky in that b12 serums are available and we have a solution. It will just take a lot of self love and patience. Hang in there and love yourself. Don't worry about people judging you for this. It's your journey!!!! They don't need to understand!!!!
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