I'm new here, just started B12 injections as i have a lot of neurological symptoms. My Doctor is a moron, Am i on the right track ?

I'm new here, just started B12 injections as i have a lot of neurological symptoms. My Doctor is a moron, Am i on the right track ?

Hi Everyone,

10 years ago i started having tinnitus.

6 Years ago my heart started having a lot of PVC's(Premature Ventricular Contractions).

2 Years ago i started having backstapping pain between shoulderblades combined with difficulty swallowing. And from there the neurological symptoms came in one long line...

Cold hands and feets.

Bleeding gums

Ridged nails

Periods with extreme hurting tongue

Sweating extreme

Tinnitus getting a lot worse

Extreme hip pain (bursitis) I have got 3 steroid injections in the hip - they help

Esophageal spasms.

Depression/anxiety

Diff. Swallowing getting a lot worse

Pins and needles (not all the time, but the way i feel it, i wake uo a lot in the night, with extreme pins and needles in the arms, hands and legs/feets. Also, like 3 years ago, i had no problem lying in my couch, supporting my head with my arm/hand. if i do that now, or lay in any other position where legs og arms are bend for more then 30 seconds, i det extreme pins and needles.)

Off course i went to my doctor 2 years ago, when the symptoms really took off, he send me to all kinds of specialists, and i have been checked with 3 MRI scans, 3 Gastroposcy, 24 hour ph in esophagous, several swallowing rutines , and it all comes out negative - they can not find anything wrong with me.

Off course i have been googling like a maniac, and suddenly 2 moths ago i stumbked accros this difficulty-swallowing.com/ . And this site was the reason i started investigating B12 deficiency and swallowing disorders. I have found numerous scientific articles describing this. Actually also folate, biotin and B1 can lead to swallowing difficulties. Then i found out that most(if not all) of my symptoms could be related to B12/folate Deficiency.

I then started to look at my bloodwork. My cobalamin is normal but low. My ferritin is very low 30 mcg/L, Hemoglobine is low 8,4 mmol/L, Zinc is low 9,6 mmol/L, magnesium is low 0,77 mmol/L - But my MCV and MCH is both elevated beyond reference. A fellow suffer explained to me that low ferritin, would make bloodcells smaller, and that the combination with large bloodcells(Elevated MCV and MCH), even though ferritin is right at the bottom, really suggest a massive B12/folate depleetion, especially with all of my neurological symptoms.

Do you agree ?

The development in my bloodwork from 3 years ago - up til now, is that 3 years ago MCV and MCH was normal. They have been taken 4 times since then, and for every month the values just get bigger and bigger. Tha same is for ferritin and iron - they were normal 3 years ago, but for each test, the numbers for ferritin and iron just gets lower and lower.

After reading a lot about this, and getting comments on facebook, i thought, that it all added up - pointing to a B12/folate deficiency. I talked to my doctor, who did nothin else but looked at cobalamin, and concluded that my B12 status was fine!

I rushed home and ordered all the things i needed for selfInjecting, including Hydroxo, methyl and adenosyl and folate, all for injecting.

I have only been injecting for 14 days, alternate days, wich means i have gotten 6 inejctions, 3 hydroxo and 3 methylcobalamin. For folate i have been taking methyl folate oral supplement 800 mcg a day. I have also been taking iron and zinc and magnesium.

Im in doubt how much B12 to inject. In a facebook group some people inject 1000 mcg of hydroxo every day, and some has done that for 10 months. Some even inject 2 times a day. And others only weekly.

I find myself lost, as my doctor does not support this - so how do i proceed ?

At what frequency do you suggest i take injections ? Hydroxo/methyl/adenosyl ?

Is methylation something to worry about ?

Some reccomend 5mg of folate every day (not folic acid), and others swear to 800 mcg of methylfolate. What do you think is the best for speedy recovery ?

I have also ordered TMG from Jarrows, together with methyl sublingual 5000 mcg.

I have also ordered biotin in megadoses 100 mg per tablett, because i read something about basal ganglia disease, wich lead to swallowing difficulty, and should be treated with 400-800 mg of dayli biotin and 300-900 mg of dayli B1.

By googling it seems that deficiency of almost all B vitamines can lead to swallowing disorders. Should i supplement with complete B complex ?

Sorry for the long post - i hope to get a lot of good advices, and if anyone can relate to swallowing problems and periods ef extreme stabbing backpain between shoulderblades, i would be very glad to hear about it.

God bless us all.

Cheers from Denmark

Mango

20 Replies

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  • Welcome to this forum. I can't interpret results but there are those who can.

    I think MCV is macrocysts, immature red blood cells. The elevate numbers mean that the DNA is not working to finish making the red blood cell. This is the cause of the anaemia, tiredness and loss of energy.

    Methyl-B12 is the active form that generates methionine which eventually methylates the DNA.

    Adenosyl-B12 is another active form that is used in another process in the cell.

    Without B12 this metabolic pathway gets blocked and homocysteine builds up to toxic levels and erodes the myelin sheath from the outside of the nerve.

    You've got all the right stuff. 1000 mcg/ml strength - 1ml every other day is the loading dose.

    I take cyano-1ml weekly here in the USA. When I lived in England it was 1ml monthly of hydroxocobalamin. Both of these are analogues which the body converts into methyl and adenosyl forms. These analogues store better in muscle and last longer than the active forms which are very volatile and break down faster.

    You may get a super high from methyl or adenosyl. I initially got a very bad headache from hydroxocobalamin. Cyano makes me a bit hyper but no headache.

    Folic acid - no more than 5 mg per day - get the B12 sorted first and then take as much folic acid as you can handle and build up to 5 mg.

    B1 - 100 mg and B6 - 100 mg to support nerve repair.

    TMG supports the methionine loop by providing an alternate pathway from B12. This allow B12 to do more/other functions.

    You are going to feel like you are on a roller coaster ride of highs and lows. The goal is to get this stable so you can relax and get on with life.

    New symptoms will appear from the medications. These are good albeit they may seem bad (pain) at first.

    Start a logbook and treat the B12 injection as day 0. Symptoms from the jab appear in sequence over the next few days. The sequence repeats the same way after each jab. Once you recognize the new symptoms. You can reassure yourself that they are good. You can start to eliminate stress.

    I get a soft stool the day after the jab.

    Also take a daily multivitamin for the minerals, metals and over vitamins because once your body gets the right B12, metabolism kick into high gear.

    Assess the severity of each of your symptoms. Record in the logbook, which will become your memory. You can look back in the log and see what is working and what isn't (I.e. Medications)

    Neurological damage is very hard to repair and very slow (months/years) so use the logbook to see progress and calm down.

    Any new food issues? Gluten (wheat, rye or barley) or dairy (casein protein)?

    These typically appear 24 hours later so record you food and drink in the logbook to sort out these symptoms.

    Welcome to the roller coaster ride and good luck.

  • Also stress consumes B12 so calm down and relax. Anxiety is just another neurological symptom.

    You already know most of your symptoms so the new ones will become obvious.

    Any further blood tests for B12 should have results >1500 pg/ml (2000 is where I think I need to be to repair nerve damage.

  • Any further blood tests for B12 should have results >1500 pg/ml (2000 is where I think I need to be to repair nerve damage.

    Do you have any references to support those assertions?

    Because they are likely to scare most people who read them, because they are unlikely to have levels above 2000 ng/L. Blimey! Most assays seem to top out before then.

  • I think MCV is macrocysts, immature red blood cells.

    Nope. MCV is Mean Cell Volume - it's a measure of how large your red cells are. If they're too big then that's macrocytic anaemia. There are many possible causes, two of which are low B12 and/or low folate.

    Without B12 this metabolic pathway gets blocked and homocysteine builds up to toxic levels and erodes the myelin sheath from the outside of the nerve.

    Nope. Without B12 homocysteine does build up, but it doesn't 'erode the myelin sheath'. It builds up because it's not converted to methionine - which is needed to make myelin. If homocysteine caused the problem then it could be fixed by taking TMG - and it can't.

  • Hi MangoDenmark. Just a thought...when you went to the ER last night, did you tell them you had been supplementing with potassium and did they check the level of potassium in your blood (as per the thread of replies to your post last night)?

    You say you have been checked 'for everything'...just have a quick look at last night's thread and check through the information...were you checked for other autoimmune conditions (thyroiditis, for instance)...and more crucially, were you tests for PA?

    As discussed last night, you have macrocytosis (large red blood cells) which indicated you may have pernicious anaemia and B12 deficiency, and you most certainly have low folate - check back again for the advice on this 😀.

    Can I reiterate the advice that your read through the the PAS pinned posts, and the symptom checklist, and approach your GP again, perhaps taking some evidence from the pinned posts with you.

    Your medic should certainly treat your B12 deficiency and you should have the anti-IF test done (to see if you have PA). It is only 50% accurate and you can still have PA even if the tests negative (antibody negative PA). It would also be a good idea to have MMA and homocysteine tested.

    It would be much better for you to get a PA diagnosis from your medic, if you can, since PA and B12 deficiency are really complex conditions and referrals to hospital consultants are often necessary. For instance, because of your neurological symptoms you should really be seen by a neurologist so that other conditions with similar symptoms can be ruled out.

    People here often do self-inject but this is only usually as a last resort, when all else has failed with their GP's and / or hospital consultants.

    I know you say that your doctor's a 'moron' and you obviously do not trust him/her... Is it possible to change doctors so that you have someone to support you in this trick and nasty condition?

    Hope all goes well And please let us know how it goes 😀

  • But my MCV and MCH is both elevated beyond reference. A fellow suffer explained to me that low ferritin, would make bloodcells smaller, and that the combination with large bloodcells(Elevated MCV and MCH), even though ferritin is right at the bottom, really suggest a massive B12/folate depleetion

    Ask to have your RDW (Red cell Distribution Width) measured. That will tell you if you've got some large cells or some extra-large cells combined with some small cells.

    I have only been injecting for 14 days, alternate days, wich means i have gotten 6 inejctions, 3 hydroxo and 3 methylcobalamin. For folate i have been taking methyl folate oral supplement 800 mcg a day.

    I would stick with just hydroxocobalamin for a while and see how it goes. It should be easily converted to both active forms, it's more stable and it tends to be cheaper and easier to source.

    Very few people need such frequent parenteral doses of B12. Keep a symptom diary and inject every two weeks. See you symptoms change and vary the jab frequency.

    For the vast majority of the population folic acid is just as good as (perhaps, because it has higher bioavailability and it's cheaper, better than) methylfolate. MTHFR problems have been overhyped and are mainly irrelevant.

    800 ug a day should be more than enough

    I have also ordered TMG from Jarrows

    Unless you know you're suffering from hyperhomocysteinemia, and that's hugely unlikely with the amount of B12 you're having, then there's no point in taking TMG.

    By googling it seems that deficiency of almost all B vitamines can lead to swallowing disorders

    Googling can probably find a connection between any two things. Look for proper medical reports. Be especially wary of web sites that claim a magical cure. Be extraordinarily wary of any site that carries adverts for said cures. Anybody can write any garbage on a web site and earn money by persuading people to visit that site.

  • MTHFR - Dubious MTHFR genetic mutation testing

    sciencebasedmedicine.org/du...

  • MTHFR testing, according to this old posting, has certainly helped some people:

    "At the same time my sister had results from her MTHFR C677T test which is a gene mutation which can cause issues with folate. She had previously had B12 injections which had been stopped when she changed GP as they said she was in range, even though her symptoms of tiredness were severe! ( She had a double mutation which means both our parents had this mutation) My mother has MS and my father died at 51 from a PE.

    Anyway I became convinced my son had it too. The NHS were not prepared to test for it so I went private ( they did test it but at £299) but ended up doing the 23andme test (£125, which tests thousands of gene mutations). This revealed he had the C677T mutation ( 1 mutation) plus MTRR A66G which prevents recycling of B12!!! I had my answer!! He did need B12. Also, his genes pointed to him being an overmethylator which meant he can't tolerate methyl donors, so methylcobalamin and methylfolate are no good for him.

    He started on 1mg hydroxycobalamin lozenges and 5mg folic acid and within a week his energy levels started to improve, plus I noticed he seemed more sociable. He also takes 10mg of NADH ( active B3) which is good for overmethylators. He's continuing to improve so I think this treatment has helped him a lot. Hope this helps someone!! "

  • he had the C677T mutation ( 1 mutation)

    Being heterozygous for the MTHFR C677>T mutation means that the enzyme works at about 80% efficiency. The body can easily get around such minor limitations. If it had dire effects then we'd see it much more often as around 40% of the population are heterozygous.

    If the MTHFR enzyme wasn't working properly then supplementing with folic acid and hydroxocobalamin would do no good at all! MTHFR's job is to convert methylenetetrahydrofolate (CH2THF) to methyltetrahydrofolate (CH3THF). The CH3THF is then used to methylate cob(II)alamin (from B12 - any type) to produce methylcobalamin. In most people folic acid will get converted to CH2THF).

    If MTHFR isn't working at all then any folic acid one takes isn't converted to CH3THF, which means that any hydroxocobalamin isn't converted to methylcobalamin.

    The fact that folic acid and hydroxocobalamin worked is proof that there was no problem with MTHFR.

    As for MTRR A66>G (which I am heterozygous for, like 50% of the population). This study showed no correlation with AA, AG or GG with high cysteine levels.

    sciencedirect.com/science/a...

  • I've just read through all the scientific evidence they quote.

    Didn't take long.

    Where is the scientific evidence that a MTHFR heterozygous mutation requires B12 and folic acid?

  • You obviously didn't read to the bottom of the page, which gives it

  • Nope.

    All I can find are adverts for a couple of books and stuff written by Ben Lynch - the guy who dropped out of medical school to study naturopathy. The guy who has spoken out against vaccination.

    But no peer-reviewed scientific papers.

  • I could probably find some but given your prejudice against anything alternative, I can't be ..........😊

  • I'll tell you what. I'll get myself a diploma in naturopathy, so that I'm believable.

    I was thinking of studying Spanish (I'm addicted to studying), but becoming a qualified naturopath is easier. Membership of the CMA as a bonus.

  • 🤐💤

  • in addition to b12/folic acid you may need a camera inspection of your thyroid area.

  • Hi Everuone,

    This will be short.

    Potassium was in range at the er.

    I dont have a thyroid - taking hormones for that.

    They didnt check for PA.

    Last week i shipped a MMA urine test, wich came back today, and the level of mma is not high. Its normal. But at the time for the sampe, in the week before i have had 2 or 3 injections with b12. Can these influence the result ?

    Im sorry but cannot convince any doctors to investigate furter about PA.

    Foggyme - what about the folate deficiency ?

    Can i do any harm by injectiong b12 txice a week, anf supplement with 5mg folate a day ?

  • Hi Mangodenmark

    I started a detailed reply earlier but got sidetracked and lost it....

    In many European countries and Japan, your B12 would be treated if below 500, as deficiencies can begin to appear in the cerebral spinal fluid below 550 pg/ml.

    Nevertheless, your symptoms alone indicate B12 deficiency especially with numbness, tingling, difficulty in swallowing and, together with elevated MCV and MCH, should be treated with B12 injections 'every other day until no further improvement' - (these are the BNF/BCSH guidelines in the UK).

    This latest BMJ research document also recommends treating on symptoms as you will see from the summary there is, in fact, no reliable test:

    BMJ Research document:

    cmim.org/pdf2014/funcion.ph...

    More excellent links:

    b12deficiency.info/b12-writ...

    stichtingb12tekort.nl/surve...

    "Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately"

    Many people on the site self inject and it seems to be a matter of finding what is right for you (you cannot overdose), bearing in mind that symptoms can appear aggravated at first, as though the nerves are are beginning to come back to life.

    I agree a B Complex would help as all the B's work synergistically together.

  • PS. Bottom of page 4 under 'How is response to treatment assessed' of the BMJ document answers your question about the MMA test and also says " Within eight weeks of treatment the mean cell volume should have normalised (77-95 fL). Iron and folate status should be checked because coexisting deficiency is often obscured in vitamin B12".

    I do hope you start to see improvements soon.

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