For context, I have autoimmune under-active thyroid disease (diagnosed 2017) and eat a diet rich in vitamin b12.
In July 2018 I felt unwell with symptoms of b12 deficiency and an active b12 test came back at 34.3. I went to my GP, but my total b12 was just in range, and the antibody test for pernicious anaemia came back negative, so they wouldn't start me on injections.
I decided to self inject, not prepared to wait to feel even worse just to tick the GP's boxes. It helped!
I went through 2 loading phases plus monthly injections and by June 2021, active b12 had climbed to 177 (Test taken after loading)
Since then I have been injecting bi-monthly and today has come back at only 43 with an injection due this week. Obviously it will climb a bit after I inject, and I think I need to up the frequency again to correct the overall downward trend.
I had hoped that optimising thyroid hormones might improve absorption, but this doesn't seem to be the case.
My question is; does this journey seem consistent with an inability to absorb vitamin b12, whether due to auto-immune disease or otherwise?
Although I'm happy at present with self injecting, it causes me some anxiety that it's not formally recognised on my health record. The GP does know that I self inject, but I think they probably just think I'm a crackpot.
How do I get my GP to recognise this formally? Ideally I'd like them to offer me injections.
P.s my sister has autoimmune thyroid disease and pernicious anaemia.
TIA
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Laundretta
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Hi Nackapan, thanks for your reply! I'm not sure why but some of my NHS medical record has recently disappeared from the patient portal (added to my list for next review/interrogation of GP!). So I can't access the exact number at present, but in summer 2018 the total B12 was right on the bottom end of being in range, and the MCV had gone up from historically, while still being in range. No point repeating the total b12 test or doing an MMA test with the GP now, as I am certainly never going to allow my b12 to drop low enough ever again!
My folate, Vitamin D and ferratin are usually on the rubbish end of 'in range', even with supplementation. I must do better with the supplements to be fair. I got fed up with rattling around with pills, adding even more medication with HRT etc,etc and stopped taking the supplements last year. However, I do feel they contribute positively. I re-started them again today actually.
I did write to my GP with all my private blood tests, self treatment regime and its impact, so it is on my record in that way. I need to ask more directly for them to provide the treatment I am entitled to. I've waited while trying to amass some private blood test 'evidence' of not being able to keep b12 in me, so it is comforting to come on here and get replies that back up my thoughts.
Rookie question, but does the body continue to produce anti bodies once treated? Could a repeat IFAB test now potentially reveal them? I have found that now I'm several years into auto-immune under active thyroid disease, that the anti-body tests for that now come back in the normal range. I assume this is because I no longer have any thyroid tissue left for my body to Destroy? I wondered if this happens in PA and the parietal cells?
Anyway, thanks again for your reply and all the best!
P.S you'll find the active b12 lab range is printed in tiny writing at the top of my tiny graph!
Yes , what you describe is consistent with a B12 absorption problem
.You are up against the ignorance of the medical profession about Pernicious Anaemia/ B12 deficiency .
Did you realise that the test for P.A. , the Intrinsic Factor Antibodies test ( IFAB) is really misleading ? About 50 % of PA patients test negative . Our ex-Chairman and founder , Martyn Hooper , had to test several times before he got a positive resujt . Apparently the antibodies can appear and disapoear . As self-injecting has helped your symptoms , you can be sure that you have PA That your sister has PA underlines this , because there is definitely a genetic element involvement.
PA is an autoimmune condition that rarely comes alone . PA and autoimmune thyroid are I believe , after reading posts daily on this forum for over 9 years , the most usual “ companions “ . There are over 100 autoimmune conditions !!! I prefer to use the word “ condition” to “ disease” !!!
Yes , you should up the frequency of your injections . You cannot overdose on B12
Do you supplement with B9 ( folic acid) ? A modest 400 mcg is a good idea . Works together with B12 .
Yes we are really up against it when trying to get treatment for PA . B12 absorption is very complicated . .
Really difficult to say how you can convince your doctor that you have PA . You are up against a lack of understanding and training . A positive IFAB test would be great of course . Your GP would not order one , as you have had one already . Private ones are expensive . Then you don’t know if and when the antibodies would oblige and appear ……. …..
I keep hoping for some research to bring a break through . …,
Don’t think I’ve helped you . But wanted to answer your question . Beat wishes .
Thank you Wedgewood, you have helped me because your reply gives me a bit of confidence going in to the GP to tell him he's wrong again!
Does the body continue to produce anti bodies once PA is adequately treated? Could a repeat IFAB test now potentially reveal them? I have found that now I'm several years into auto-immune under active thyroid disease, that the anti-body tests for that now come back in the normal range. I assume this is because I no longer have any thyroid tissue left for my body to Destroy? I wondered if this happens in PA and the parietal cells?
I honestly don’t know . But I do know that Martyn Hooper had a few tests before they appeared . Don’t know the reason for that . A scientist who dealt with such readings , who we had on this forum explained that the antibodies can come and go .
Nackapan and Wedgewood have given good advice about writing to GP as this goes on your record. All I would add is to be specific about your symptoms and the effect injecting bi-monthly has on you.
The question appears to be whether there is any benefit to injecting more frequently. The only way to find out it to try it. The longer between injections the harder to trace cause and effect as so many other factors affect how we feel.
As Wedgewood pointed out you cannot overdose on B12 and when combined with 400ug folic acid a day provides a relatively safe self treatment regime. I would also anticipate that injecting more frequently will easy your anxiety over self injecting as you will get more practice!
Keep a diary of symptoms, treatment and activity (you already seem to have excellent recording abilities!) and it may be that after injecting weekly for a couple of months you decide to increase your injection frequency. I offer this possibility based on my own experience. I went from every other day to daily injections and the difference has been incredibly positive.
I wish you all the very best finding your recovery path. The members on this forum are amazing and very supportive which goes a long way to compensating for our GPs! 🤗🤗🤗🤗
I am a retired GP and recently discovered a low B12 of 62
Low ferritin and mild anaemia.
I have had a colonoscopy and might have a gastroscopy.
My Coeliac antibodies and anti Intrinsic Factor antibodies came back as normal.
The second result can be misleading, in that, it might be a false negative!
Gastroscopy and biopsies is definitive but resource heavy and extremely unpleasant.
In Canada and Scandinavia they have only given oral treatment for years.
This is because 10 per cent can be absorbed despite a lack of intrinsic factor.
If you take a big dose (1000 mcg) orally daily, then 10% of a large dose mimics a normal dietary intake.
Better still, you can now purchase sub lingual (absorbed from under the tongue) Methylcobalamin.
Mine was £9 from Tesco.
Currently on offer, 3 for the price of 2.
This skips the stomach problem and goes straight into the blood stream.
There is often a low ferritin (iron store) associated with B12 deficiency.
My B12 has shot up with the above but my ferritin has plummeted, possibly due to my bone marrow speeding up blood production.
If that happens then iron stores and folate can be used up early on.
So for now and for the first month, I am covering all bases with 400mcg folic acid and iron tablets daily.
It can take up to 5 years for the B12 to drop so symptoms can creep up unawares.
These can include neurological problems like mental clouding , fatigue, depression, proneness to infection, sexual wellbeing.
You have to be in trouble if you get to the sore tongue stage and peripheral neuropathy stage as sometimes this is not reversible.
Although one’s B12 blood test returns to normal with treatment , it can still take 3-6 months for the body tissue’s B12 to normalise and the above symptoms to resolve.
I have to take much more B12 than you. Approx 15,000 mcg daily otherwise my symptoms start coming back. But this highlights the problems with B12D treatment. There is no 'one size fits all'.
Low quality evidence shows oral and IM vitamin B12 having similar effects in terms of normalising serum vitamin B12 levels, but oral treatment costs less. We found very low‐quality evidence that oral vitamin B12 appears as safe as IM vitamin B12. Further trials should conduct better randomisation and blinding procedures, recruit more participants, and provide adequate reporting. Future trials should also measure important outcomes such as the clinical signs and symptoms of vitamin B12 deficiency, health related‐quality of life, socioeconomic effects, and report adverse events adequately, preferably in a primary care setting.
Low quality evidence shows oral and IM vitamin B12 having similar effects in terms of normalising serum vitamin B12 levels, but oral treatment costs less" To quote your link!
NHS quite happy to follow low quality evidence when it suits the finances.
Chose to ignore Regland et al., 2015, (the first to report a favorable effect of vitamin B12 injections) in revised NICE Guidelines re CFS/ME. Since then b12 found to be significant in a number of neurological diseases. CFS/ME is likely neurological
I am unsure why you sent me a medical journal about oral versus intramuscular b12 injections.
One, I was not discussing that with you.
Two, I am completely aware of the medical documentation about passive absorption.
You said "In Canada and Scandinavia they have only given oral treatment for years."
My only point is that is a completely false statement, for Canada. I have no clue why someone would contradict a person from said country, who has been diagnosed & respectfully tells you that they have had b12 injections from one's doctor's office for their condition, for years. Even if a medical journal tells you otherwise. I live here & have other loved ones with b12 deficiency if for some reason I was this magical unicorn, in your head, to get injections at my doctor's office & not pills.
My sister was taken off put on injections over and over again - rinse and repeat, for years. Her doctor, like many, thought it was all about 'level's good now' off you come. Oh! Level is bad again, on you go when it is clearly not a dietary issue at hand. Can you imagine the damage to the body to go back low enough after instense supplementation over and over? And her doctor was a lovely person, just was not educated that testing during treatment is not necessary and can cause these erroneous choices in care.
For those reading and new to all this - symptom relief is the goal with absorption issues. No 'good number' means that is 100% happening.
Not just numbers like with dietary. (But hey, it is not like vegans & vegetarians can not have pernicious anemia or any reason for any absorption issue in tandem)
Anyway a ramblin' - which I could do for pages and pages on these issues! Smiling.
I have an official diagnosis of Pernicious Anaemia ( positive IFAB test) 1000mcg B12 tablets do not help me . Neither sub-lingual lozenges , nasal or mouth sprays have any impact . I wish they did , for that would save me the bother and expense of obtaining B12 ampoules from German online pharmacies . One B12 injection every 3 months was insufficient to stop the return of nasty symptoms . But my GP would not budge. So I tried all those named solutions , to no avail .
Pernicious Anaemia and B12 deficiency are very complicated conditions , for which there has been insufficient research. There is no “ one size fits all “ treatment . Everyone has to find their own salvation usually by trial and error . . You have found the right treatment for yourself . That’s great . But It will not be the answer for everyone . Best wishes .
P.S. You write that you have a positive Intrinsic Factor result . It might mean( odds of about 50%) that you don’t have P.A. and that oral treatment would more likely work for you . Your GP would interpret that result as you not having P.A. , as many members on this forum have found to their detriment .
You also state that “ In Canada and Scandinavia they have only given oral treatment for years” Treatment for what ? B12 deficiency or Pernicious Anaemia?
I do know that in Canada , P.A. is treated with B12 injections . ………
every one is different. oral never worked for me. I eat a ton of meat and still over the years became deficient + was supplementing 100 mg of b12 on top of the meat I eat daily. Some of us just absolutely do not absorb orally. But for those that do.... keep doing the high dose oral supplementation and your recommendations will come in handy! cheers.
I understand your dilemma. What happens if you go in hospital for an extended period or you end up being looked after in a nursing home. Without your B12D on your medical records you won't get any B12.
But, in my opinion, you will never get your GP to do what you want. And the stress it will cause makes it not worth the effort.
This is exactly my concern. I am only 47 so I would hope not a problem for a some decades yet, but I feel it needs acknowledgement. Also, what if I suddenly can't access supplies of B12 to inject?
This is not being negative, but being realistic. I have been having similar thoughts.
I have Lasting Power of Attorney for Healthcare for my nephew should he lose capacity. He has given me written wishes of what he wants as a healthcare plan.
I think my solution is to appoint someone I absolutely trust as a Lasting Power of Attorney for Healthcare in relation to B12 and make it absolutely clear what my wishes are.
I would be interested if anyone knows differently but it is my understanding that your healthcare wishes will be followed unless there is an overriding reason not to do so (ie it’s not legal). I am not aware of what an overriding reason could be for B12 injections not to be administered as you cannot overdose on them.
There have been many studies but no definitive results. One thing is sure. There are a lot of people here who have to inject and there are a lot of people like me who find oral B12 works. I think that everybody should try the oral route first. It is easy to supplement with and I found it worked very quickly for me. And, after all, the original cure for PA was oral - lightly cooked liver. Thank God for the doctor who came up with an alternative.
PS. It isn't true that all people with PA have to have injections. I have PA.
Thank you that's a very helpful overview. It's very interesting that both you with oral treatment and those who self inject have benefit. You might think that with being unable to absorb B12 in the stomach, an oral route would not work- but this is not the case. Is this the passive absorption I've seen mentioned?
Yes. This is why I take 15,000 mcg B12 liquid daily. I dilute it in water and drink it throughout the day as passive absorption is so slow and inefficient. So there is always some B12 in my gut being absorbed. Originally I took tablets. They did something but I didn't start fully healing until I switched to liquid.
Wow that's wonderful how it works for you - how long have you been on 15 000 and what has the effect been on your symptoms over time? Liquid seems to be the key.
Just over 2 years. At the beginning I had many physical and neurological symptoms. At one stage I couldn't even stand up without help, had no bladder control whatsoever and couldn't talk when I got stressed. Which, as you can imagine, was all the time. At one point I found myself literally bouncing with rage because I couldn't explain something to a nurse. The rage was yet another symptom which was totally out of character. I was such a nasty person when I was B12 deficient.
Now I am almost 'normal'. I still tire easily and have problems with balance and motor skills. But these things are liveable with.
I think any B12 sublingual will do. As long as it is at least 5000 mcg. Amazon sell them. But I found that using under my tongue didn't work for me.
In the past someone on this forum stated that the B12 molecule is too large to enter the blood stream sublingually. Apparently to pass across a biological membrane unassisted a molecule needs to be relatively small and lipophilic. The B12 molecule is both large and hydrophilic. And, in addition, human saliva contains a protein - haptocorrin (HC) - that binds to the B12 molecule. This makes it so much larger that there is no way it can passively pass across the buccal membranes. The sublinguals work because they are eventually swallowed and are passively absorbed by the gut.
This is why I dilute the liquid in water and drink throughout the day.
Good point about the liver although if I recall correctly it was eaten by someone with adequate intrinsic factor then regurgitated before being fed to patients with pernicious anaemia! Liver on its own is insufficient - it’s the regurgitation that makes it effective. Martyn Hooper covers this in his book.
Yuk!!! And I thought raw/lightly cooked liver was bad enough. Where did you hear about this? I have never come across this fact in any of the many articles I have read on the subject.
I don't want to get into a 'bun' fight but I have checked the facts and it was regurgitated hamburger meat that was tried first which was then replaced by raw liver as it was more effective. .
That’s very encouraging. I witnessed an elderly gentleman specifying his Do Not Resuscitate wishes which went on his medical file. Definitely worth looking into. Thank you 🤗🤗
We can only hope that the situation changes. I am lucky I find that sublinguals work for me so I don't have quite the same problem as you. But what happens if I get dementia?
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