Feeling ill for months after B12 injection

[Bollin69]

I was wondering if anyone could give me some advice on my situation....

Hashimoto’s Dx 2010
Hypothyroid Dx 2021 – started levothyroxine
Positive parietal cell antibodies (not IF antibodies) so no pernicious anaemia diagnosed

Was on multiple supplements including b-complex until starting levothyroxine in May 2021 when I stopped..

All was good, I was physically and mentally well and then in August 2023 I had some routine bloods which showed B12 was 150 and was started on B12 (hydroxocobalamin) injections. I didn't have any symptoms of deficiency but thought it would be good idea to. Had loading dose of 6 (7/8, 23/8, 22/9, 26/9, 27/9, 2/10).

After these I generally felt ok, my energy was the same however I felt a little more wired than usual. I also started feeling very emotional, short tempered, spots, slight anxiety but put it down to perimenopause.

Then In Jan ’24 I had next B12 injection - 3 months after the loading dose.

The next day I had an overwhelming panic attack (never had before) which left me with terrible brain fog, anxiety, insomnia, exhaustion, mental fatigue, no appetite, stuck in fight or flight and found it hard to function on a day-to-day basis. Was bedridden for a while.

Over the following months there has been slight improvement but it’s been very slow and I’m still far from feeling how I was pre-January.

Current symptoms:
Extreme fatigue
Brain fog
Anxiety
Difficult to motivate to get up in morning
Lack of appetite
Sleeping a bit better after total insomnia but still not great
Emotionally flat
Hand tremors (not as bad now)

It's been 8 months now and although the initial symptoms have lessened in severity I'm still not feeling myself.

On another forum I have been advised that it's from cellular refeeding syndrome and the lack of cofactors. From peoples experience on here if I start adding them in should I start to feel better? Do I start B12 again? Latest blood test in June my level was 408 - not amazing but not terrible as not had any B12 since injection in Jan. I'm not planning on having injections again - I think it was an overload (especially as I had no symptoms) but will take sublingually. If anyone had a simplified protocol of supplements and quantities that would be appreciated.

Thanks so much






Any ideas anyone? Thanks in advance.

 

[linusbert]

the cofactor idea makes sense for sure. giving isolated high dose vitamins, and then even by injection has a lot of potential to throw body out of which ever balance he had.

you write you have had thyroid problem before.
that gives me one strong indication that your problem might be iodine based.
because iodine is one important cofactor of b12. also is b2. (and of course others).
you could have whacked your thyroid more by inducing a functional iodine deficiency. maybe you already had one and your thyroid medication hid it.

you might wanna start with iodine and selenium (which is counterpart of iodine) for the thyroid. if you are lucky you might even fix your thyroid problems in the process. some thyroid problems are responsive to iodine and selenium.
you might accompany it with a low dose multi vitamine + trace minerals + electrolytes like in the 100-300% RDA range. i would not do high dose for now.

b12 and most b vitamins also are in need for potassium, and b1 also for phosphorus.
so i would add rich potassium sources. like coconut water or potatoes. you might add a little salt to not whack your sodium balance.

as you already have thyroid situation, you in addition might have a adrenal fatigue like situation. both thyroid problems as well as adrenal problems can show like you described.
vitamin C, B5 and sodium support the adrenals. a VERY low dose cortisol supplement for a few days might give it a kick. if it makes you feel better you for sure have a problem here, but i would not do it for prolonged time, just to test out the hypothesis. ask your doctor, he can make you a plan to do a 3 day course of cortisol to see if it does anything.
if you take lot of potassium now, without enough sodium, it will worsen your situation if you got a adrenal fatigue like situation. you might wanna go low with the potassium in that situation and slowly titrate potassium:sodium up.

of course the b12 also puts demands on methylation and acetylation. you should have a source of cholin and methylgroups like egg yolks.
add some glycine as buffer for methylgroups and also add some l-carnitine(-fumarate) (no acetylcarnitine) as buffer for acetyl groups.

(as taking iodine can interfere with your thyroid situation, you might wanna talk to your doctor first about this)

 

[Hip]

A family member developed joint pains the day after a high sublingual dose of B12 methylcobalamin powder. These joint pains remained, and where later medically diagnosed as arthritis. It was clear that B12 triggered these joint pains, because they appeared immediately after the sublingual application.

I wonder if this was due to B12 triggering an autoimmune attack on the joints? Of course, once autoimmunity is triggered, it's almost impossible to un-trigger it.

B12 is known to boost natural killer cell and CD8 cell immunity, so it does affect the immune system.

Subsequent high doses of B12 did not make the arthritis worse.


Immune modulating supplements can trigger autoimmune diseases in patients who have autoimmune tendencies. Dr Chia has found that the immune booster herb oxymatrine that he uses for ME/CFS can trigger rheumatoid arthritis in some ME/CFS patients.

So Dr Chia now does not use oxymatrine in ME/CFS patients with an autoimmune tendencies (by which he means a strong family history of autoimmune diseases such as rheumatoid arthritis, lupus, autoimmune thyroiditis (especially Grave’s disease), multiple sclerosis, and if the patients have joint pain with positive rheumatoid factor and persistently positive ANA). Ref: here

 

[Bollin69]

the cofactor idea makes sense for sure. giving isolated high dose vitamins, and then even by injection has a lot of potential to throw body out of which ever balance he had.

you write you have had thyroid problem before.
that gives me one strong indication that your problem might be iodine based.
because iodine is one important cofactor of b12. also is b2. (and of course others).
you could have whacked your thyroid more by inducing a functional iodine deficiency. maybe you already had one and your thyroid medication hid it.

you might wanna start with iodine and selenium (which is counterpart of iodine) for the thyroid. if you are lucky you might even fix your thyroid problems in the process. some thyroid problems are responsive to iodine and selenium.
you might accompany it with a low dose multi vitamine + trace minerals + electrolytes like in the 100-300% RDA range. i would not do high dose for now.

b12 and most b vitamins also are in need for potassium, and b1 also for phosphorus.
so i would add rich potassium sources. like coconut water or potatoes. you might add a little salt to not whack your sodium balance.

as you already have thyroid situation, you in addition might have a adrenal fatigue like situation. both thyroid problems as well as adrenal problems can show like you described.
vitamin C, B5 and sodium support the adrenals. a VERY low dose cortisol supplement for a few days might give it a kick. if it makes you feel better you for sure have a problem here, but i would not do it for prolonged time, just to test out the hypothesis. ask your doctor, he can make you a plan to do a 3 day course of cortisol to see if it does anything.
if you take lot of potassium now, without enough sodium, it will worsen your situation if you got a adrenal fatigue like situation. you might wanna go low with the potassium in that situation and slowly titrate potassium:sodium up.

of course the b12 also puts demands on methylation and acetylation. you should have a source of cholin and methylgroups like egg yolks.
add some glycine as buffer for methylgroups and also add some l-carnitine(-fumarate) (no acetylcarnitine) as buffer for acetyl groups.

(as taking iodine can interfere with your thyroid situation, you might wanna talk to your doctor first about this)

Hi, thnaks so much for your reply. I was in good health tbh beofre I had the B12 injections, the last one bringing on all the symptoms. I suspected adrenal fatigue at one point but I'm thinking could more be from an imbalance of the co-factors if methylation was sped up from the B12 without them being optimal?

The doctor thinks it's anxiety and depression so not sure I will get any support there. I've never had dpression or anxirty before the B12 injections.

Re iodine - I've always been wary as I have hashimoto's and there is always mixed opinions on taking iodine.

What is the best way to take potassium and sodium so they are balanced? Slowly titrate as you say. I think the B12 injections lowered my potassium - back in January I was very thirsty all the time and unrinating a lot. That has calmed down.

 

[linusbert]

The doctor thinks it's anxiety and depression so not sure I will get any support there. I've never had dpression or anxirty before the B12 injections.

dont get gas lighted into psychosomatic disease if there is none. i am right now at the point, where i think that any doctor who uses those ideas just is not worth the time.
this is a common theme here , most people can tell stories.

What is the best way to take potassium and sodium so they are balanced? Slowly titrate as you say. I think the B12 injections lowered my potassium - back in January I was very thirsty all the time and unrinating a lot. That has calmed down.

could be true! but also could be casual symptom of having minor poisoning symptom because too much b12.
or both could be true at once.

Re iodine - I've always been wary as I have hashimoto's and there is always mixed opinions on taking iodine.

i know, but i also read where it did improve this. so i really would look into iodine. maybe get some Kelp and some selenium supplement. take both.
the selenium is important, it has protective effects to the iodine. the thyroid needs both. so taking just one might cause a imbalance.

What is the best way to take potassium and sodium so they are balanced?

i have no idea. thats individual. as you are not known to have a sodium deficiency i would just use a pinch of your fingers and add it. not much, just a little.

one way to find out if body wants it or not, is to put a bit on your tongue, and watch how your body reacts. does he like the taste, would he like to have more? or do you have a displeasant taste. if you want to spit it out, i would say its a sign of no or low sodium to add.

 

[bad1080]

i second the importance of potassium when taking b12

 

[Bollin69]

dont get gas lighted into psychosomatic disease if there is none. i am right now at the point, where i think that any doctor who uses those ideas just is not worth the time.
this is a common theme here , most people can tell stories.

could be true! but also could be casual symptom of having minor poisoning symptom because too much b12.
or both could be true at once.

i know, but i also read where it did improve this. so i really would look into iodine. maybe get some Kelp and some selenium supplement. take both.
the selenium is important, it has protective effects to the iodine. the thyroid needs both. so taking just one might cause a imbalance.

i have no idea. thats individual. as you are not known to have a sodium deficiency i would just use a pinch of your fingers and add it. not much, just a little.

one way to find out if body wants it or not, is to put a bit on your tongue, and watch how your body reacts. does he like the taste, would he like to have more? or do you have a displeasant taste. if you want to spit it out, i would say its a sign of no or low sodium to add.

I refused to accept I was depressed but almost succumbed to their beliefs when feeling at my worst throughout this.

I didn't know you could have poisoning symptoms from B12? More so symptoms of everthing else out of balance or perhaps over methylation?

Yes will look into iodine and selenium thank you.

I don't think I have sodium deficiency so will just use a pinch. How much potassium would you start with? And what would the maximum be?

Thanks

 

[Bollin69]

i second the importance of potassium when taking b12

I wish the doctor would tell you this and also to make sure ferritin and folate are optimal before taking injections. And to take a B complex as well. Maybe I wouldn't be in this mess if they did.

 

[linusbert]

I don't think I have sodium deficiency so will just use a pinch. How much potassium would you start with? And what would the maximum be?

i eat 0,5kg potatoes a day , thats 1500mg potassium. i dont think there is a maximum from food.

I didn't know you could have poisoning symptoms from B12

i dont think its clinical intoxication, but i feel that too much of a thing for us chronic sick who have problems with detoxification can suffer symptoms of toxication. vitamins and minerals and a lot of things need to be in bio available form in body, usually bound to proteins. i guess if body cant make it into usable form it will be "detoxed" , peed out etc.

 

[almost]

On another forum I have been advised that it's from cellular refeeding syndrome and the lack of cofactors. From peoples experience on here if I start adding them in should I start to feel better? Do I start B12 again?

Hi @Bollin69, welcome to the biochemical wrestling match we all are involved in. I'll be interested to see how things progress for you, and you've received some good counsel here.

I found this paper recently, which may be of value to your case. Some interesting portions:

In a later study, the same workers found some
improvement of symptoms in some individuals who had CFS and
who were given repeated high dose treatment with methyl vita-
min B12 and folic acid [8, 9]. Treatment response was found to
be dependent upon adequate thyroid hormone, suggesting a role
for active vitamin B2 in the response to folate and methyl vitamin
B12, which could potentially be due to the absolute necessity of
functional vitamin B2 for the integrity of function of the methyl-
ation cycle.

and

Urinary Organic Acid Tests, which were carried out on 326 per-
sons with chronic fatigue syndrome, identified two main areas
of metabolic insufficiency, functional vitamin B2 deficiency and
functional vitamin B12 deficiency. Initiation of CFS appears to
occur under conditions of prolonged functional B2 deficiency,
which eventually results in functional vitamin B12 deficiency. The
functional B2 deficiency results in reduced efficacy of metabolism
of fats, sugars and proteins, whilst the functional B12 deficiency
reduces the production of CoQ10 and creatine. The combination
event reduces not only the efficiency of energy production from
fats, sugar and proteins, but also the efficiency of energy conver-
sion due to reduced production of CoQ10 and creatine. The func-
tional B12 deficiency can often be missed, as paradoxically, serum
B12 may be normal or higher than normal and as such is often
over-looked by the clinician. Resolution of the condition involves
establishment of functional vitamin B2 sufficiency as well as high
dose administration of vitamin B12, either through injection or via
TransdermOilTM application.

Note the potential conflict of interest here as this is on a b12 oils website.

In any case, I'm contending with a serum sufficient, yet possible functional insufficiency of B12, so I'll be upping my B2 intake to see if that helps. I hope you find the answers you're looking for.

Edit:
I forgot to add that even riboflavin, which is commonly reported to be the "safest" of the b vitamins, can be problematic:

The fact that nearly everyone has several highly idiosyncratic bottlenecks in energy metabolism means that some supplements such as riboflavin that could be generally supportive of step 2 in most people will disproportionately or even exclusively support step 1 in others.

https://chrismasterjohnphd.substack.com/p/the-dark-side-of-biotin?sort=community

So as always, pay attention to how you respond.

 

[linusbert]

how to test for functional b2 deficiency?
i guess for b12 you could do methylmalonic acid.

edit: just saw this, they are talking about hashimotos at 30:00

 

[Byles]

You might also have had an adverse reaction to the benzyl alcohol usually added to B12 injections. There might even have been other additives.

 

[Byles]

Also regarding the concerns of selenium and iodine, a natural form might be a better fit. Personally I take horsetail tea for selenium (don't take every day) and seaweed flakes (on salad you barely taste them) for iodine.

 

[linusbert]

brazil nuts are also rich in selenium