I started SI in mid Feb and experienced good improvement after about 10 days. I had been injecting cyanocobalamin every other day. I was very sick when I began, lots of neurological symptoms and was struggling to walk and eat. Over the last 2 to 3 weeks I've gone backwards, it's almost as if the medication isn't working anymore.
I don't know whether the medication has been limited by some other shortage which has emerged, like maybe methyl groups or B2, but I'm clueless really. I'm as certain as I can be that the medication was effective at the start - for 5 or 6 weeks I felt better than I had for many, many years. I didn't have great expectations for it either - I almost gave up SI after a week as I thought nothing was happening.
Is a reverse like this commonplace? What other supplements might potentially unlock the B12 for me again?
Best regards
Simon
Written by
Uluru72
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. . . DIY can be satisfying & effective, . . . tho' its also helpful to have the type of support & hard gained experience, via forums like this, . . . & benevolent sites like b12d.org 😊 . . . - thank g🍒dness, . . . ! 😉
Pleased to see your reply - supplies more evidence, that recovery can occur in . . . '?fits, . . . & starts' ! 😊 😊 😊 Any more details about your 'set-back' . . . , & whether you managed to overcome it in time ??!
It is 'very' early days as yet and often we get worse before better as we heal. I have been injecting for three years and still have symptoms.
Most advise
Folate Vit D B6 or a good multivitamin I take a gentle iron supplement that doesn't constipate.
Others will advise who know more than I.
Low B12 is a real pig of a thing to have to live with but give it time as a little improvement is better than none even if like I you just function a little better.
. . . I believe B6 may be important as already mentioned ( - if that's the one which has become depleted ??!) ! I'd personably be inclined to reduce the dose of B12, esp if its been v large ( - remaining at the same frequently, perhaps?) & add small daily quantities of the other Bs, . . . perhaps from a v good quality B complex ( - maybe as drops?).
Mg may well be important - the easiest, & cheapest way to increase its intake may be by (food grade) MgCl2, aka Mg flakes ( - . . . far better in the right amounts than 'corn flakes' which I understand where originally conceived as a product to reduced 'self-abuse' . . . ! ! ! 😱❓ 😂 😂 😂 ). Add some MgCl crystals to your drinking water, to taste . . . & see how that goes - slowly does it ! Rome wasn't build in a day - & yr recovery is far more important now . . . than how long that ancient city took to be build! 😊
A range of low concn/RDA levels of B vits in yeast extracts like Marmite & Vegimite, of course; recently been having these as a 'tea' - oooh Maammy, you cld say 😊 ( - not aware that B vits are particularly heat sensitive, but in any case a small amount cld be added to cooler 'hot' ( - not boiling) water. Could then add B12/B complex drops to such a 'tea' too ! May provide some beneficial 'co-factors' . . . may be ??!
. . . as for the (misnamed!) 'vit D' ( - where cholecalciferol is actually endogenously produced in the skin with adequate 🌞shine, . . . I'd recommend you get some 🌞exposure, . . . provided that's OK for you ! 😊 If 🌞 exposure for limited, sensible periods brings about symptoms, . . . I'd be pretty WARY of increasing cholecalciferol levels ( - aka "vit D3" by historical mistake !) by tabs/pills/drops etc . . . in this complex ( - calcidiol & calcitriol) hormonal system !
. . . hope that's of some benefit, . . . Simon ! 😊 Look to reading other considered replies to yr rather important Q. ! Synergy . . . rather important in biology ( - far more so than worrying about 'self-abuse' !!❗ 😱❓ 😂 😂 😂 ).
B Vitamins are heat sensitive. The longer the heat exposure and higher the temperature, the more of the vitamin is lost. For this reasons its worth thinking about eating some (but not all) foods either raw or lightly cooked such as steamed or quickly microwaved which typically retains more nutrients (some nutrients are even increased by cooking though, such as the lycopene in tomatoes, its interesting to research these).
Fortified nutritional yeast can be used without heating, has a nice cheesy taste and is a useful B-booster. Vitamin supplements are usually kept away from heat and bright light to protect them from degradation.
Yes, it's known as Reversing Out Sydrome. This is common with nutritional deficiencies - people quite often get worse before they get better. I feel for you and your early sense of recovery - I felt the same for about 3 days. I thought to myself, wow - I haven't felt this good in years. Probably since I was a child. But it's a cruel glimpse into 'what could be' and is superficial because there's constant work and repairs to be done through regular and ongoing B12.
Don't give up on it. It will take months and probably years to get back to any sort of normality. Stopping treatment is the worst thing you can do. Solider on, it's a longhaul and a rollercoaster. Just know that you'll be nicely strapped into your seat if you're doing regular injections.
amen!! Pickle500. So true! Hang in there this "getting worse" phase lasted about 1-1.5 months for me but now I'm doing sooooo well! Keep up the injections!
Thanks for all the replies. This reverse is a big blow as I had 2 months of really feeling okay after years of difficulty, extreme difficulty, and now the peripheral neuropathy, palpitations are back, raging hunger which is impossible to satisfy, dopey brain, rapid muscle fatigue. I have had various diagnoses over the years and my b12 levels always appeared okay, my initial response to SI was really great though, after about 10 days. I can't help wondering whether this really is my problem. My GP has just prescribed me b12 ampules for SI after seeing me prior to SI and then about 3 weeks ago, regardless of normal looking test results, he seems to have been convinced by the evidence of his own eyes. He has lined up an IF antibody test for next week, though I know that's a 50 per cent job. I will stick at it, though I find it so hard to understand how 2 months of good functional health can unravel so quickly, it seems mad.
One of my major problems is sudden onset extreme weakness, hitting an absolute wall out of the blue. Can this be a b12 thing? I know the Krebs Cycle needs b12 to liberate energy so I guess it's possible...
Hi Simon, . . . the 'reversing out syndrome' is one alternative possible explanation, I feel. Its worth knowing about this, & easily 🔍'd for, with some info on B12d.org - a site WELL worth knowing abt, re B12 issues ! 😊
However, I'm inclined towards your own view, based on the info supplied. Long ago, with a high dose B6 supplement as advised by a GP, I began to feel FAR better for ?2 or more weeks, . . . with the symptoms then returning in force: with hindsight, . . . I'd now infer that as my stores of B12 got used up, . . . then the improvements began to abate ! Make sense ?
This is why the suggestion to keep up with yr 💉s, in frequency, but perhaps reduce the dose, while you trial other B vits, Mg, . . . & sensible 🌞 exposure! I'd also personally consider reducing frequency ( - in a similar situation) to see what happens, as a way to tweak the protocol! In your case, you are the best judge of what to do, having considered a range of reasonable options, as you are ! 😊
Potassium also, maybe from ?Lo-Salt etc, . . . & avocados ( - rather than 🍌. . . say, due to their higher fruct/glucose !) ??!
If its possible to have fasting insulin measured there, it cld be worth calculating yr "HOMA-IR" - which only requires the fasting blood glucose (FBG) in addition. Search for a "HOMA-IR" calculator - know there's one on MDcalc.com ! 😊 Worth doing this, & interpreting the result reasonably ! 😊
[ - due to the consideration of your post, . . . I've TODAY gleaned - as if for the first ⏳❗😊 - that eating 'corn flakes' & the-like - esp. with skimmed milk - is, in fact, . . . a form of 'self-abuse', no matter how inadvertent ! 😱❓ 😂 . . . 😂 . . . 😂❗ This, & other 'ultra processed foods' (UPFs) cause ( - & propagate any) HI ( - hyperinsulinemia) which sadly our medical profession knows little about ( - correctly, that is!) 😱❗].
this isn't a generic formula that works for everyone ,
But take a multi b vitamin with your injections.
Your nerves and cells are regenerating all at once. This will pass but only if you keep doing the injections. Do them daily even. It's so worth it.
Once you get to feeling better reach out again and I'll give you more vitamines to take, but I don't want to add too many variables into your formula just yet.
Lots of great advice and support on this forum. Reach out if even just to complain. It's therapeutic.
Hey Uluru72, I have experienced doing better only to feel worse. I have found that for me the feeling worse is in part that my nerves are coming back on line. I find what my body/nerves are telling me is I need more B12.
To date every increase in B12 has followed the pattern of doing better followed by feeling worse then an over all improvement over time.
I have just increase my SC injections from 1.5 to 3 mg of hydroxocobalamin a day. I inject three times a day.
I was told elsewhere you need a full range of B vits and then extra folate. My specialist advised me (on weekly injections) to take 5mg folate twice a week as there are some risks to taking higher amounts.
A few brands do a B complex without b12 and folate so you control your own levels or else get a cheap 100% Dra one and top up the rest.
I already take high strength liquid Vit D. And sit in the sun 30m a day if its out (am in the UK).
I also read you should take a break on the Bs after 4 months as certain B vits are fat based and accumulate.
Some people take iron but my level is just ok and I don't tolerate it.
All B vitamins are water-soluble, not fat-soluble, but a nutrient being water-soluble doesnt mean that its impossible to overdose on it. Most well-known is the possibility of a B6 overdose which can cause neurological damage (observed at very high doses if taken for a long time). For this reason supplements containing B6 are often restricted to 25mg or less in Europe (and there is a draft document discussing bringing them even lower) but US B6 limits are higher, at 100mg. The active form of B6 seems to be safest (P-5-P).
There are upper limits for safety set for other B vitamins too, the EFSA (European Food Safety Authority) has set those limits at:
Folate: 1mg
B3: Nicotinamide : 900mg , Nicotinic Acid : 10mg
If you're not absorbing properly due to gut issues then it makes sense to take additional supplements but if absorption issues are corrected and folate levels are normal, theres no reason to take huge amounts (like 5mg), B12 injections do not "use up" folate at the kind of rate that this kind of logic seems to imply.
Never take iron if you don't need it, the body has no easy way to rid itself of excess iron and significant amounts will cause inflammation which will worsen gut issues and, somewhat ironically, make it harder to absorb iron due to increasing hepcidin.
Ask for a full panel of blood tests... if you can get them. It does sound like something else has become the "limiting factor".
The main additional requirement is folate but all the B vitamins are essential.
And potassium, magnesium, iron and vitamin D are the next most common that can get short once your body starts going into overdrive to repair the damage caused by the B12 deficiency.
You might also need methyl and various other things, depending on what your problems are.
Don't give up - there are solutions to the problems, you just have to try to find them.
Good luck and don't be afraid to ask again if you don't get the right answers first time.
I'm up to my 👀 in work and life at the moment (woohoo - I'm well enough to be!) but please badger me if necessary for answers.
You could try reading through my past replies - I'm not a medic but am a qualified animal nutritionist so have a bit of useful knowledge.
Along with all the other good advice please consider trying a selenium supplement. I reached a plateau where more b12 didn’t help and was getting low on energy. After tests I found I was deficient in it after testing and have to keep up daily supplementing to keep the energy levels good. It is difficult to tell the difference between low b12 and low selenium. You will know quite quickly if it is having a positive impact.
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