Asking for help again. Working with a friend who is navigating the UK medical system. Tests for B12 were taken prior which showed B12 deficiency and GP did not interprete the results correctly. No surprise there.
More tests have been ordered after the GP was given information about B12 deficiency, some of which was from the PA site. Thank you so much!
The tests have been ordered for both B12 deficiency and PA. Results not in and my friend has not met with their GP. It is probable the GP will not release the test results prior to an appointment.
The goal is a prescription for 1mg Hydroxocobalamin every other day until symptoms improve preferably under a doctors care. My friends evaluation which is likely correct is their GP wants to help but does not know how.
Most likely outcome of their meeting with their GP is start with oral B12 then when levels of B12 are elevated than the BP will see this as a success and no further treatment needed. My friend is informed and if possible will preempt this.
Most likely the GP will not make the determination that neurological symptoms are present which they are definitively.
My friend understands to request a consult with a neurologist and or hematologist.
So my question is; In the event that the GP does prescribe oral B12 does anyone have experience with how quickly B12 levels will be above range with oral supplements? I know the levels have no meaning and why. My question is in case my friend chooses to self inject and as best I can want to give her information that the GP will not know they are injecting.
I am also asking to be directed to a list of neurological symptoms for the GP to review.
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It's very difficult to say how quickly levels will rise with oral supplements, since so many variables play a role, e.g. the cause/s of deficiency, if absorption is possible or not, how frequently the doses are taken, if any other B vitamins are taken during this period.
In my experience, sublingual doses can increase levels very fast - 1,000mcg every day equated to around a blood level of 50 per day for me (on my estimations). I took this for 11 days and got to 650, so I'm guessing my level was around 100. So it may not take that long to get levels up, but getting levels up isn't the problem. The problem is keeping them there for healing to commence and continue. That's why injections are always recommended -- because they flood the system and get levels high to a place where there is plenty to fall back on and keep them there. Missing a day of oral can be catastrophic for recovery because symptoms can worsen very fast with 'withdrawal' of proper treatment. Oral needs at least 3 months of daily dosing.
This symptoms chart was the most helpful to me and has Dr Chandy's oversight.
When I first realised I probably had low B12 because of my symptoms I couldn't get a blood test because of covid. I took 2000 mg daily for two months before had my first B12 test. It was 367. So I think B12 levels don't go up that quickly.
i asked the question in case the doctor decides to put them on oral supplements and they decide to self inject. Unfortunately they need the doctor for other perscriptions.
I'm just curious how we define oral. There are different forms using different mechanisms (oral tablet needs absorption from the stomach, sublinguals may or may not (depending on which research you read) take advantage of the mucous membrane in the mouth.
Since I was in the same position as charks in terms of delays to treatment from lockdown, I also took oral but the form was sublingual liquid. The B12 dose was lower (1mg daily) and I took it for about 2 weeks vs charks 2 months.
My levels got to almost twice the value of charks so Im keen to understand if their intake was tablet which may have a slower or less powerful absorption process
Originally I took tablets. But then I switched to sublingual. After researching a bit I decided to dilute the sublingual in water and drink it throughout the day. The effect was dramatic. It was like taking 'speed' ( in my 'naughty' uni days ). Unfortunately it only lasted a couple of weeks. But it also speeded up my recovery. Now, three years on, I have hardly any B12D symptoms. Unless I get stressed.
Interesting. So we could post that the tablets were ineffective in raising your levels, but the sublingual evidently was - by your reaction to it. But possibly also the raised level which was perhaps only a week or so in the end?
Great that you have hardly any B12D symptoms. That's wonderful to hear.
So, if you do have PA, it could be that you can absorb sublingual but not take in anything from the stomach. Maybe.
The tablets did work but I wasn't getting enough B12 that way to make a full recovery. But my B12 levels went up to over 1700 and my GP told me to stop supplementing as my B12 levels were 'dangerously 'high. Of course all my B12 symptoms came crashing back and I ended up at square one. When I started supplementing again I decided to take sublingual liquid as it is stronger. I take 15,000 mcg daily and find it very effective for me. I have PA but obviously can absorb via passive absorption.
Thank you for the reply. I just increased my sublingual intake of B12 to 5000 mcg twice a day. I am going to wait until the effect has leveled out and then raise it again. I am comfortable now with I can tell how changes effect me. Before it was just guess as best I can.
My over all thought process is to increase until the increase does not have an affect. Then I will reduce until symptoms return. I am allowing that I am healing and the amount that was best at one time may not be as I heal.
I have never been able to reduce my dosage. In fact sometimes I need to increase it if I am doing anything physically challenging. For example I am going on a walking holiday soon and will have to take more to compensate. But that is the bonus of oral B12. You can easily tailor the dosage to fit your needs.
The finding the correct loading does does seem it may be a physicians fantasy. If I go cold water open water swimming I need to hydrate more and consume more calories. So needing more sometimes makes sense.
Thanks for the info on the sublingual. That makes sense to me. I prefer the sublingual to injections as I am comfortable taking more B12 than with injections. I prefer sublingual liquid. I look at stress as part of life. I am finding that unnecessary stress caused by others for no good reason really sets me off as of late. Working on that.
Unless your friend’s doctor thinks this is diet-related, because you friend is a vegan, a vegetarian, or is eating the ‘wrong’ foods, oral B12 would be completely the wrong treatment, and the doctor should follow the NICE guidelines and start your friend on loading doses of B12 injections in the form of hydroxycobalamin:-
I am not sure I understand the original question correctly, but your friend could always opt to pay for some B12 injections from a beauty clinic, to see how those go, and as it is all completely above board, they can just tell the GP that they paid for the B12 injections at a beauty clinic, as a ‘wellness boost’. I am not sure how regularly beauty clinics are ‘allowed’ to give B12 injections as a ‘wellness boost’ but I suspect they would do them at least monthly, if not more frequently. That would be a valid explanation for raised serum B12 levels. Cost of B12 injections at beauty clinics seem to range from £15 - £45.
Or there are private anaemia clinics, that would be able to help (I know of one in Cambridge), in terms of PA / B12 deficiency diagnosis and B12 injections. This is more costly though.
If the GP puts them on oral tablets rather than injections, they could point out that NICE guidance says that for those with neurological involvement
"Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months."
Your friend could also ask GP to check what BNF (British National Formulary) book says in Chapter 9 Section 1.2 (very similar to above quote).
The BNF info on treatment for B12 deficiency is in the link below
Click on "Indications and dose" then click on "For hydroxycobalamin"
Prior to seeing the GP, I suggest your friend finds out what's in the local B12 deficiency guidelines for their ICB (Integrated care Board) or Health Board.
If your friend can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which b12 deficiency guidelines are used locally and for a link to or copy of them.
Local B12 deficiency guidelines can vary greatly across UK and some are very unhelpful.
I hope your friend is not in the area discussed in blog post below.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present. Always keep copies.
If your friend thinks the appointment might be challenging, might be worth asking to record appointment. I suggest asking in writing to GP or practice manager well before appointment.
A bit more about oral treatment for B12 deficiency
If you or your friend have the time, search online for " Cochrane Review Oral vitamin B12 versus intramuscular vitamin B12 for vitamin B12 deficiency" and read its conclusions.
Note on oral treatment - from B12 Institute (Netherlands)
Thank you for your reply I appreciate your efforts and concern. However, I am familiar with the efficacy of oral administration of B12. The only positive thing I have ever read is it may prevent further damage. I did read one paper that was without citations that cyanocobalamin orally was as effective as injections. I ignored that.
Sublingual administration involves placing a drug or vitamin under your tongue to dissolve and be absorbed into your blood through the tissue. As I use a liquid b12, Buccal administration also occurs which is the absorption of the B12 through the blood vessels in the gums and cheeks. These routes of administration are used with some medications.
I have done a trial of injections of cyanocobalamin, methyelcobalamin, and hydroxocobalamin and a short trial of methyelcobalamin with sublingual adenocobalamin lozenge.
The reason for the many trials is due to procurement issues in the USA. I am currently in the UK.
I have not found any information on the absorption rate of sublingual specifically with B12 and that science would be helpful. (It would not be an indication of efficacy.) I am using applied science based on other absorption rates. I rely on symptoms for my finial determination.
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