Hi, I have posted before, recently this year. I have neurological symptoms including burning mouth and peripheral neuropathy, brain fog, not sleeping etc. I completed Dr Chandy's B12 deficiency symptom chart and it came up with 9 body systems affected. I cannot thank you enough for all of your help and advice, haematology treatment guidelines and all other info links that I could read and print off.
My GP appeared to be really understanding but stated that I was far more aware of B12 deficiency issues than she was and wanted me to discuss with a haematologist. My GP did a referral through the practice system and I received an appointment date for beg of April which was immediately rejected by haematology staff due to blood level B12 being in range. I know this because when I received the letter I tried to change the appointment online and ended up phoning the app line. They were very helpful and gave me the Patient Liaison tel no, who put me through to the medical secretary of the haematologist who I had been assigned to. I just wanted to mention incase this route could help anyone else get through and speak to someone in the unfathamable system. You can of course then complain and take things further through the Patient Liaison Service (PALS) if you wish or need to.
I was told by Dr Chandy that my B12 levels would have been dropping for 10 yrs or more for my levels to have depleted to 191 in 2011 and that was why I was now presenting with neurological symptoms in 2017. Obviously deficiency takes it's toll therefore over the years, creeping up on us without our realising. In 2011 my B12 level was taken because I had asked for it re a sudden symptom of burning mouth (which lasted a few weeks only) B12 was 191ng/L and I was told by my GP that it was perfectly normal. I did however start to supplement and gradually it rose over the years into the 2-300's and in April 2016 to 500ng/L after a concerted effort of B12 and Bacterial Fermented Complex. I had thought niaively at that time that this was top of the range and stopped supplementing, when symptoms hit me with a bang this year.
I have autoimmune, RA which is often linked with B12 def. Have lowish serum iron with abnormal low transferrin percentage yet high ferritin which indicates sequestering of iron because of inflammation and abnormal low MCHC which means a low haemaglobin content in red blood cells, which is probably why I have to breathe hard on exertion and heart pounds when walking up stairs or hills when my vision breaks up, or is that re B12 deficiency. From my perspective B12 and iron metabolism is going to be linked as well as thyroid and TSH rapidly climbing and in addition family history of PA (which astoundingly only occurred to me in the last few wks especially as it was my mum, my dad and my grandma)
It is as if GP's cannot join up the dots. She and a previous GP and a Rheumatologist all told me over the years when I enquired about my MCHC being abnormal low when looking at annual blood tests, as to what it meant and they all said. 'We take these tests but dont look at them, other than the first 4 - so white/red cell and platelet and haemaglobin. The rest we ignore' So no big picture ever.
I asked for a copy of my GP's referral letter to haematology and although empathetic to my face the referral ran with an undercurrent of hypochondria, and self diagnosis so please could they take me off her hands. Well that was enlightening
So I have given up on the NHS, GP's and consultants - not worth the time and stress.
I Have seen some posts where people take Jarrow's B12 (5000) Chris Kresser also recommends Jarrow. So I have ordered and been taking for the last 3 days 5000mcg. So my question is, can I be imagining/placebo effect or can they take effect straight away? This is the 3rd day and suddenly feeling not as much burning mouth and burning in hands and feet and ringing in my ears is less (noise, which I have had seems forever) Will it be OK to take my Bcomplex in addition? (is a fermented methylated form and only contains 263mcg of B12)
I wanted to ask if it is safe to take such a high dose continually? And should I take 5000mcg until symptom free/or much better and then change to 1000mcg?
Sorry for such a long post (very therapeutic to get it all out on paper so to speak) Maybe my experience will help others.
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LynneG
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The 5000 mcg methyl sublinguals are safe. I take 2x twice a day as needed to fill in or about 30 minutes before meetings to clear my head. They last about 2 hours for me.
This is in addition to my weekly cyano injections.
Have you had a test for Intrinsic factor antibodies to confirm PA or is there another reason for your b12 deficiency. When you supplement it can inflate the results for months and if it's in range the gps and consultants don't really want to know.
I waited until after my antibodies test which was positive luckily before supplementing. In addition to two monthly jabs from gp I also take 4 x 5000mcg solgar sublinguals every day and self inject once a week. Without this symptoms to tend to rear up.
Thank you for replying. My GP and haematology lab won't accept that I have B12 deficiency.
Although low 6yrs ago at 191 when first tested at my request when presenting with first symptoms - My GP sent me away with a tap on the head, alls fine, your B12 is fine. By chance I listened to an interview of Dr Daniel Amen (nutrition based psychiatrist /Spect Scan guy) who declared always be top of the class when it comes to B12 levels, I then read his book. That was my first introduction to the importance of B12. How the Japanese B12 range is 500-1300 which accounts for their population having the lowest dementia and heart disease. This made me sit up and listen, I by then had learned that I could have a print out of test results and found my level had been at the absolute bottom of the range.
So I have supplemented on and off over the years, when I could afford. I control my RA with nutrition and so lots of supplements rather than the NHS drugs, so I have to question what I am spending. So my supplementing B12 and then later a complex has kept me in low normal range for yrs. If I hadn't been proactive and had never supplemented I would no doubt be low enough to qualify for NHS consideration, but that's not how it is.
My GP referred me to haematology and before knowing of rejection I had blood drawn for intrinsic factor ab's and B12, also a film of blood cell activity?
Awaiting results.
GP had spoken to a haematologist before referral and she told me that he had said that they could look at a film of blood cells to determine more. Whether that is a particular test or something the haematologist would need to prompt at the appointment I don't know, I didn't ask as had thought I would be seeing. If it is a test then that will have been included in the blood draw. The referral was rejected by haematology before I had even had my blood drawn for this test.
Would you know what this film of test should illustrate?
May I ask, isn't it unlikely that I have a problem with intrinsic factor if I am absorbing B12 from supplements? I have only ever supplemented methyl B12 though, Does methyl bypass intrinsic factor? My GP had thought it was unlikely that I had a problem with IF which is why she didn't test at first. (I suppose based on B12 blood levels)
Thanks for your info on your doseage.
I had been thinking of supplementing with a combined Adenosyl /methyl B12 sublingual but I read an article by Dr Jockers - who is a functional nutritional doctor and he states adenosyl is an unstable form so best avoided. It is however the form mitochondria in cells use and companies sell. Have you come across?
Just a new girl me! But burning mouth, pins and needles. Feet and hands at night mostly.
B12 tested was 400 nevertheless I supplemented with B12. 5,000 and B complex by Solgar.
Have been using for 6 months now, last blood test showed 1000 plus a bit
Sorry don't have my paperwork to hand.
BUT BIG BUT. No burning mouth 🙂 NO Pins and needles . Took a bit, can't remember but maybe some weeks
Burning mouth, is horrible. It really got me down,. Good luck. And hope you get some help to put it right.
Don't think it can do any harm, unless you feel you need to get a proper diagnosis as supplementing give a false high serum level for a long time, I believed it's said some months.
I had some MCHC with iron panel. Always over range ( just had backlog of test results uploaded by surgery, new policy). Never had B12 tested as a result! Maybe those symptoms could have been helped sooner. Had them for years☹️☹️😡😡
You can't believe how helpful to me it is to read your post. Sometimes fighting the system makes you feel that you are going mad. As if it isn't bad enough trying to cope with all the symptoms without support and understanding.
The burning mouth is a nightmare, in all my gums, such a sore tongue and cheeks and scarlet lips on fire. The burning hands and feet, spreading up my limbs and all other symptoms. It is such a relief to know that taking sublinguals worked for you. I will look at Solgar complex as my complex is running low and dont want to be without. I have only just bought the Jarrow B12 '5000'
I really believe that all functions in the body are interdependant and if I get the B12 sorted then this may sort my iron metabolism - hopefully. Having B12 issues is obviously going to affect inflammation levels and it appears that inflammation is at the root of my iron issues.
It amazes me how doctors cannot apply commonsense and see beyond the end of their nose.
I am so sorry that you have obviously had to go through so much - but you got there through your own strength which is admirable.
I saw a rheumatologist for 19-20yrs referred re Rheumatoid. She monitored my health, supported where necessary, was someone to evaluate progress with and was interested in me and my nutritional approach and respected my no drugs. She was the professor - top dog of the department. However she retired and the new example of the rheumatologist replaced her. My appointments and blood tests were only annual but he stated his job was to manage people on the drugs he prescribed and as I wouldn't take them then there was no point in him seeing me or anyone in his dept because they all thought as he did. What an endightment of practitioners today.
Cannot thank you enough for posting. You have given me hope
Thanks Steap. Yes I chose 5000 over 1000 as think I really need high dosing (as I would get with initial injections. If only I hadn't been supplementing over the years and put blood levels up) I was worried 5000 seemed high but from other replies it seems not. I have to get rid of these symptoms - which only seemed better for an afternoon after first taking 5000, when I posted and then came back full force again. So will take more than 5000 per day now to see what happens. I took another at 3am ths morning as woken up with terrible symptoms again Do you know what an injection equates to. They are 1ml arent they? is that 1 gram. So 5000 mcg is, gosh, I can't work it out but tiny compared?
Right, Thanks for the advice. So cutting and spreading throughout the day. Next time order 1000 - then can spread throughout the day more easily. I thought the thing with hydroxy was that you may not convert well? as with many things.
Do you know how many tablets in mcg equate to an injection. Because of my symptoms I want to load up as if initial injections. Last 2 days i have been taking 1 also when waking at 3/4am, so that's 10,000mcg per day.
I could take methyl and adenosyl 50/50
But read on Dr Jockers site (functional nutritional doc) that adenosyl is unstable but methyl can be converted to adenosyl if have normal functioning enzymes.
Like you say all trial and error as all different.
As have methyl at the moment will try for effectiveness
I would just like advice now on how many mcg I could best take per day?
I'm no expert but I think with most it's really absorbing the b12 initially that's the issue.
Once it's in very few people have a problem with converting between the various forms.
I'm guessing if you had that issue it'll be more likely to be genetic and you'll have had issues all of your life.
It's really all about which method and preparation offers the best results symptom wise and no one but you can advise on that.
I don't think you can do a conversion or text book comparison between injection and tablets/sprays because we all absorb,excrete and retain at different speeds and amounts.
Probably even on different days too.
Everything I've read so far suggests that injections are the best way to get and keep levels up. That's important if you've gotten to the stage of neurological damage. Getting them and then getting them often enough is a big issue though as we all know or we wouldn't be discussing tablets.
Also remember this is nutrition not medicine in essence so you can't just use b12 on its own. You need a balanced 'diet'. You may be replacing the b12 bit but you still need equal amounts of everything else it needs to work and fix things.
You need to be eating really healthily and adding things you can't get enough of from food alone.
A multi vitamin is a good idea as long as it's not megga doses.
We're nearly all low on vitamin d too.
Sunlight is good not bad just don't burn and get it every day.
Add a banana a day or maybe even coconut water for extra posassium and keep properly hydrated. All the toxins from the repairing needs to be flushed out.
Thanks Steap, a person after my own heart - good to hear such advice. I follow a sound nutritional approach and follow /read the work/ books of Doctors using a functional nutritional approach.
I have come to this mindset over many years because I use a nutritional approach to control my Rheumatoid Arthritis because I refuse the NHS drugs.
I take a liquid bacterial fermented B complex as well (i have taken on and off in addition to methyl B12 powder when I can afford. As you can imagine I spend a huge proportion of income on diet - grass fed/organic/ free range/ with no refined polyunsaturated oils and no processed foods and I take many supplements to ensure good nutrition a root cause of RA.
Despite family history I knew nothing about B12 other than Dr Daniel Amen (functional approach psychiatrist) in his books and you tube lectures states that you should not be bottom of the class when it comes to B12. And is why when I found my B12 level was only 191 6yrs ago, I started to supplement. Unfortunately as my total serum levels rose a little with supplementation, I did not see as a priority so my supplementation was on and off. Even tho I had noticed memory issues affecting conversational flow - I did not know enough to relate to B12 issues.
I was more concerned with fillers and unsuitable ingredients in supplements as I am gluten and grain free.
When I did find a dutch company who provided a pink powder which was just B12 and sugar no additives, with full instructions to take part to full teasp. And I noticed memory did improve, but unfortunately this source in Holland stopped trading so I stopped supplementing. I then found after a while the fermented methyl B complex and used instead but only contains 263mcg B12. When my total blood level reached 500 12months ago, I was so ill informed I thought I had reached the moon and so stopped supplementing. My level had fallen without supplementation to 400+ end Nov. At new year symptoms hit me massively with burning mouth and peripheral neuropathy, poor sleep and many symptoms and so I grabbed my B complex in panic - so when had blood tests they were skewed so folks on here state. My GP doesn't see this and with recent test in preparation for the referral app
(which ultimately got rejected) last wk told me to continue to supplement before test, so that we could see if my levels rise with supplementation.
I am not going to get anywhere with GP/haematology route and so need to supplement to heal and get rid of these symptoms
I do have a banana everyday with brazil nuts for selenium. Trying to get any supplements from a food origin. Like Oceans Alive phytoplankton for full complement of minerals essentially, but also provides omega 3's coq10 etc. I take Great Lakes Collagen for amino acids and intestinal lining healing. Colostrum similarly. Turmeric as an anti inflammatory, Serrapeptase as a blood cleanser/anti inflammatory, also to disolve fibrinogen which is v high in RA people and is an issue. I am fascinated by recent research on the microbiome and so am well aware re the influence of gut bacteria in our function, try to get probiotics from raw food, fermented food and organic unfiltered cider vinegar but do supplement with probiotics on occasions. I use oregano oil instead of antibiotics while ever I can and frankincense essential oil I have found to be a great healer of lumps and bumps. And have a lamp for near infra red light therapy. I get out in the sun whenever it shines and take vit D in winter months and always take vit K2mk7 as well as being aware to get K2 mk4 in diet and other fat soluble vitamins. I also make bone broth and smoothies in my nutribullet. I am a great walker and noone could try harder. I am well informed through reading and attending cutting edge online summits.
I am now learning through this group about vit B12.
And I have little faith in mainstream (except for emergency life saving hospital care)
You’re not alone. I am going through the exact same situation where drs seem to allow a patient to become critically (or at least what feels like critically) low on B12 levels as well as Iron levels before they will order the B12 shots and in my case, iron transfusions. If the liver has stores of B12 to last for years, plus most foods contain supplemented b12 and iron, why are many more folks becoming critically low? And you’d think drs would realize there is a valid reason why our bodies cannot absorb, use, or store these nutrients correctly. I think you are corrrct that it is possibly related to autoimmune diseases as well as malabsorption. My PCP told me to use 10,000 mcgs of sublingual B12 daily and that way I ought to absorb at least 10% then would urinate the rest out; and that one could not overdose, so to speak, on B12. I do believe if we can get the B12 in us, it does work quickly sometimes because we are so deficient and feel so sick and maybe even feel close to dying at times. I know you can die from lack of B12 and lack of iron. So I personally take these seriously!! Hoping you, any others with these problems, and I do much better and with more vitality in 2019!!
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Do you know what an injection equates to. They are 1ml arent they? is that 1 gram. So 5000 mcg is, gosh, I can't work it out but tiny compared?
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