Fatigue: I seem to have different... - Pernicious Anaemi...

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Fatigue

Justiina profile image
15 Replies

I seem to have different stages of fatigue where the last one is purely f*** o** mood where I have 0 patience, 0 tolerance and I just wish the whole world would disappear and I got to be completely alone. I get cranky, moody and person no one should be around.

When I get my injection I turn into kitten mood, be loveable ,fun, perky ,happy, joking, could purr 😄

Is it normal to feel such dramatic mood change when B12 drops/rises ?

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Justiina profile image
Justiina
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15 Replies
fbirder profile image
fbirder

Oh Yes!

That's the first sign that I need a jab. Often it's the people around me that recognise that I've forgotten to have an injection when I've forgotten.

Justiina profile image
Justiina in reply tofbirder

So its not that odd to feel like that. Good to hear.

Before first loading doses I considered myself just as an *hole and that's the way I am. Week after first injections I sat down and was like whoah this is how it feels like to be a nice person 😄

wedgewood profile image
wedgewood

You obviously need an injection before the bad mood sets in . Try and get it , or if impossible , consider self-injections like many of us do .

Justiina profile image
Justiina in reply towedgewood

Yeah I have been wondering should I ,as I need one every 6 to 12 days (depending on how active I am) to avoid low mood. Its hard to schedule when you don't know how active you will be and if I feel bad on Thursday , next available appt at local hospital might be next Tuesday. Has been irritating me to think so far ahead whether I can go hiking on Wednesday not knowing do I feel bad or very bad on Thursday and how much it affects if I have to wait for days.

They have not wanted me to self-inject as my current injection is 3 ml (B12+B6+B1) and I am very skinny. I don't even know would just B12 fix me or is the combination working the best. I guess it could be divided and injected to both thighs.

wedgewood profile image
wedgewood in reply toJustiina

I can’t imagine why you have B6 + B1 in an injection . Those vitamins are easily absorbed in tablet form . B12 is a difficult vitamin to absorb , as it needs plenty of stomach acid and the Intrinsic factor , to extract it from meat , fish etc. . How much B12 is in that combined injection ?

Justiina profile image
Justiina in reply towedgewood

Combo was trialed for CFS somewhere and my functional doctor asked if I would want to trial it based on my symptoms. I did have low B12 and high homocysteine anyways and by oral supplement active B12 was too low. Functional doctor wanted it to be over 128 and it was 80.

But the idea was to get B6 into my system if I had bad lactate/puryvate ratio. I did not but the injections were continued as I got almost symptom free.

So I have prescription for that injection and can't get for just B12 from public healthcare. Combo is written to general vitamin deficiency and that can't be argued by GP. For just B12 they refuse it. Tho psychiatrist might go for it as they were interested of how injections affect me mentally/emotionally and ofc physically.

Its 1 mg B12 and 100 mg for both B1 and B6.

Justiina profile image
Justiina

For me the full of joy feeling come from many things with injections. Can eat, have appetite, feel thirsty, feel calm and relaxed.

Showgem profile image
Showgem

I thought too much B6 was harmful if taken for a long time. Is it a medical professional that has advised you to continue having these injections?

palmier profile image
palmier in reply toShowgem

100 mg B6 is considered safe.

ncbi.nlm.nih.gov/m/pubmed/1...

"Vitamin B6 (pyridoxine) causes neuropathy at intakes of 1000 mg per day or more, which is about 800 times the daily intake from foods. There have also been occasional reports of toxicity at intakes of 100-300 mg per day. The US authorities set the no-observed-adverse-effect-level at 200 mg per day and the safe upper limit at 100 mg per day. A report of neurotoxicity in 2 patients who had taken 24 mg and 40 mg of vitamin B6 per day respectively, may be coincidence rather than a true toxic effect of such relatively low doses. However, physicians need to remain alert to high intakes of vitamin B6 as a cause of unexplained neuropathy."

helvella profile image
helvella in reply topalmier

That link is rather old (2005). I am rather persuaed by this:

Toxicol In Vitro. 2017 Oct;44:206-212. doi: 10.1016/j.tiv.2017.07.009. Epub 2017 Jul 14.

The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function.

Vrolijk MF1, Opperhuizen A2, Jansen EHJM3, Hageman GJ4, Bast A4, Haenen GRMM4.

Author information

1 Department of Pharmacology and Toxicology, Maastricht University, Maastricht, The Netherlands. Electronic address: m.vrolijk@maastrichtuniversity.nl.

2 Department of Pharmacology and Toxicology, Maastricht University, Maastricht, The Netherlands; Netherlands Food and Consumer Product Safety Authority (NVWA), Utrecht, The Netherlands.

3 National Institute for Public Health and the Environment (RIVM), Bilthoven, The Netherlands.

4 Department of Pharmacology and Toxicology, Maastricht University, Maastricht, The Netherlands.

Abstract

Vitamin B6 is a water-soluble vitamin that functions as a coenzyme in many reactions involved in amino acid, carbohydrates and lipid metabolism. Since 2014, >50 cases of sensory neuronal pain due to vitamin B6 supplementation were reported. Up to now, the mechanism of this toxicity is enigmatic and the contribution of the various B6 vitamers to this toxicity is largely unknown. In the present study, the neurotoxicity of the different forms of vitamin B6 is tested on SHSY5Y and CaCo-2 cells. Cells were exposed to pyridoxine, pyridoxamine, pyridoxal, pyridoxal-5-phosphate or pyridoxamine-5-phosphate for 24h, after which cell viability was measured using the MTT assay. The expression of Bax and caspase-8 was tested after the 24h exposure. The effect of the vitamers on two pyridoxal-5-phosphate dependent enzymes was also tested. Pyridoxine induced cell death in a concentration-dependent way in SHSY5Y cells. The other vitamers did not affect cell viability. Pyridoxine significantly increased the expression of Bax and caspase-8. Moreover, both pyridoxal-5-phosphate dependent enzymes were inhibited by pyridoxine. In conclusion, the present study indicates that the neuropathy observed after taking a relatively high dose of vitamin B6 supplements is due to pyridoxine. The inactive form pyridoxine competitively inhibits the active pyridoxal-5'-phosphate. Consequently, symptoms of vitamin B6 supplementation are similar to those of vitamin B6 deficiency.

Copyright © 2017 Elsevier Ltd. All rights reserved.

KEYWORDS:

Neuropathy; Neurotoxic; Pyridoxine; Supplements; Vitamin B6

PMID: 28716455

DOI: 10.1016/j.tiv.2017.07.009

ncbi.nlm.nih.gov/pubmed/287...

Justiina profile image
Justiina in reply tohelvella

I wonder how it compares IM to oral? As I get 100mg for example once a week IM where those who supplement orally take 50 -100 mg daily basis.

But that article suggest it's the type of B6 that is the issue, not B6 itself.

Justiina profile image
Justiina in reply toShowgem

Yeah I was told its safe daily basis up to 6 mo. Since loading doses I have gotten injection every 1-3 weeks , no I'll effects of B6. But I am going to ask to try just B12 to get more frequent injections. I don't want to use this combo too often to avoid B6 toxicity. Tho I also seem to have mutation suggesting I might need more B6 which could be I tolerate more B6. Don't know, hoping to.get more answers. My neurologist also knows I am on these injections and as this combo is originally meant to treat delirium , he is familiar with it in his work. I am not alcoholic nor had a single drop of alcohol for a decade and it was new to him it's given to CFS but in the end he is ok with it as it keeps me functional.

But yeah I am not comfortable with the idea of using this injection for very long. It just has been the only source for injectable vitamin at the moment. Now that I know how much I benefit and I most likely have B12d that isn't going away I feel more comfortable to try out self-injections if denied to get prescription to B12 only.

Imogenta profile image
Imogenta

I have immediate mood effects - if I drop off B12 I get pretty ‘closed in’ mentally/emotionally pretty quickly I realise now it’s a physiological response - something like the anxiety and shutting down you might feel if you were starving - which is actually what’s happening. Your body/mind knows it’s missing vital nutrients needed for functioning or something. I get much more worried and far less able to handle multiple things - I worry about everything and find it harder to interact with people close to me smoothly. After injecting I get a noticeable depth of calm and all naturally loving and flowing. It is so different I now inject daily - I want to live like that - my full life. I am sure it is helping me physically also. The difference is so clear and I lived so long in that state of lack that I simply want to be fully well. It is hard to explain to people t it’s kind of like those people who are colour blind then get colour viewing glasses - quite profound psychologically.

Teloch profile image
Teloch

You've just described me down to a tee, thank you, I now know that I'm not alone.

I also lose interest in EVERYTHING when my levels are getting low :(

Justiina profile image
Justiina in reply toTeloch

Me too! I can't care less. I don't get depressed per se but just not interested of anything. When level is good I get interested of anything , even boring chores satisfy me. And I have patience to do very boring stuff. I connect with surroundings and find joy.

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