so these are the things have noticed since starting SI 1mg Hydroxo every other day since seeing private consultant 23rd September:
1. energy has steadily increased, peaking so far 1 week ago (almost 'hyper' active/happy) - from 3/10 fatigue to 6/10
2. Similar levels with mental energy/capacity
3. Energy/mental capacity leveled out at the weekend and dropped a bit since (but also had some professional and personal stress to handle)
4. I have not menstruated and i'm probably about 2 weeks late - this has never happened in my life, but then I am 46...
5. Periodic numbness and tingling has reappeared in hands - this wasn't so bad in the past few months
6. Chronic digestive issues improved initially but gone backwards - this can happen regardless of any dietary or other changes so not out of the ordinary - I have re-introduced a few more foods that I hadn't eaten in the past few months in the first 2 weeks as digestion so good so potentially aggravated a bit
7. Asthma (adult onset in my 20's which on the whole resolved several years ago) has appeared. I buy inhalers online for emergency use and used one puff twice daily for the past few days. No other symptoms of cold, virus, etc
8. Had what feels like arrhythmia 2 days ago in the evening. I have had these periodically all my life and this was investigated aged 21 and no issues were recorded then. This was an extended period of time and I was concerend about this. It resolved after 3 hours. I am aware that B12 injections can cause loss of potassium in urine. I am eating around 4 bananas a day and a diet rich in veggies. I am also aware that asthma meds can also mess up potassium levels....
9. I have some acne on my face
10. A skin condition on my back and side which has persisted for 1 year is slowly disappearing (GP not interested in this).
11. my sense of smell is exceptionally sensitive - stronger than ever before. I tried to eat fish and simply couldnt due to the smell (I can eat pretty much anything).
Any comments or reflections on this?
With thanks, always 💗
Written by
Beccy_123
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Good to hear you are making progress. Acne on face yes this will resolve it self. It will take around three months for your blood cells to completely recover, so give it time and fingers crossed you will find improvements everyday.
Listen to your body and rest when its telling you too.
I'm really pleased for you. It sounds as if you are making a good recovery. I had similar reactions to you energy wise. However everything plateaued out after about 3 weeks. Shame because it was very enjoyable. I don't like anything about fish - especially the smell. But before taking B12 I was able to tolerate it. Now I can't bear it.
As I said in my reply my improvement was rapid. Most happened in the first month. It has been two years since then and I have improved some more. But in such small increments that I don't register them immediately. For example last week during a walk I realised my balance was almost back to normal. I don't think I will ever be completely 'normal'. I still get tired very easily. And when I turn my head rapidly I get very dizzy. And I am very clumsy, I drop things all the time. I think my fine motor control in my hands is permanently damaged. But I am really lucky to be to able to live as 'normally' as I do. And I am nice to live with now. My partner is so glad to have the 'old' me back he doesn't mind not being allowed to cook fish in the house.
After only my third small dose B12 tablet starting initial treatment I had a dramatic improvement in my sense of smell, I literally jumped up and went about the place smelling my books (i have a lot of books lol). The next morning I noticed my breakfast tasted much better too, all the flavors were stronger etc.
I wish I could say it was a constant improvement from there on out but alas my early treatment decline hadn't even begun.
Maybe try some extra biotin for the acne? Can be depleted in early treatment :
Very interesting, thanks! Lots of good info in general on B vits and B12 too. I am no longer taking a multi b vit too - consultant advised against this and advised to take 500mcg methylfolate on injection days only and to stop all other B supplements to help the body rebalance after years of oral supplements and increasing amount of B vits in general. Might also help explain the rise and drop in energy too since SI.... I am concerned about taking a B vit on its own due creating imbalances. I read that biotin competes with B5, so taking a biotin supplement could lower B5, etc. I eat plant based and am trying to introduce cheese and fish but I have difficulty digesting these (and fish isnt attractive either). I dont want to take a yeast product either for the same reasons. I also appreciate my digestive challenges are most likely interfering with B vits created/absorbed in the gut - I have chronic diarrhea and try to support my microbiome. Oh dear... what to do 🤨
I supplement twice daily with zinc, for 8 years now - not a particularly high dose but could be relevant. Had GI issues when I was a paleo meat eater too. So much cross over in symptoms with so many nutrients...
Other than Folate and B12, the water soluble vitamins are not stored in the body and thus are unlikely to build up over time - the exception is B6 which shouldn't be taken regularly in doses over 20mg except in diagnosed absorption or deficiency scenarios. Folate is also something I would avoid building up too high but this can be easily tested for (as can B6). Supplementing most of the B vitamins at 1-2 times the RDA is unlikely to cause any issues or "imbalances". Although I dont think its necessary to take so much, even much larger amounts of B vitamins like B1, B2, B5 and Biotin have no tolerable upper limit and any excess is cleared relatively quickly from the body (typically in hours to days).
Biotin and B5 are absorbed by the same receptors but unless you take large Biotin doses with every meal you're not going to impact B5 Pantothenic Acid absorption in any significant way. So many foods contain B5 that deficiency is more or less unknown. Just having more Biotin in your system is not going to decrease B5 - its only an absorption issue and you're vastly overestimating its significance and impact. If you wanted to be especially careful, you could take the Biotin between meals (2 hours after a meal or 1 hour before). You could also take B5 at rda or twice rda, the other side of the day from the biotin, but I dont think thats warranted, or necessary. I'm not sure whether or not the acne is a Biotin issue but a moderate dosage Biotin supplement would likely be quite safe for a couple of weeks to see if it affects your acne since its suspected that this can be a cause. Check with your doctor and make sure to stop Biotin within a week of blood tests to avoid affecting test results though.
It sounds like you have digestive/absorption issues though so really some blood tests could be a better course of action to check if you are too low (or too high) in things mentioned and then calibrate over time the dosage you need to bring up your levels of that nutrient. But just because you took large doses of B vitamins, even over years, does not mean you created an "imbalance", only a blood test could confirm that and as mentioned, excess of most B-vitamins are clearly fairly quickly from the body, with only ones to be quite careful of on dosages are B3, B6 and Folate.
Sounds like improvements taking place. Take it easy with energy at first: don't use it up too quickly. Some symptoms get worse before better, some things heal that you weren't even aware were symptoms. Good thing is you are getting somewhere.
Spots initially quite common. If I have had a "blip" (unexpected sudden deterioration), those spots return after I have improved again - like going back to the beginning occasionally.
Arrhythmia can be B12 deficiency symptom - but keep monitoring as can be other things. I had ventricular ectopics -which came out of the blue and eventually a few months later went the same way without medication. But had a 24-hr monitor from local hospital to find this out- GP can arrange that. This was because my occasional thumping heart became a daily nuisance, and worse, nightly: would wake me up suddenly, heart racing. Now gone- but have restricted coffee in case !
Smells: at first, my sense of smell became acute but completely confused. For instance, my local supermarket smelled of raw sewage every time the automatic doors opened. I knew it was wrong, but it was also real for me ! Even now, I sometimes double-check with partner before I say anything about odours. In case it's just me and my confused nose. I guess brain waking up and trying to make links, relearning in some way.
Chronic diarrhoea: this was one of my early symptoms that made me go to GP in the first place, in 2015: along with fatigue. muscle loss and left hip/lower back pain. Earliest symptoms seem to me the hardest to get rid of completely.
B12life - I think you meant to send this reply to Beccy_123 .
Nice to hear from you anyway.
Nerve repair: when my injections were restarted at a frequency of 2 a week, it still took about 3 months for me to actually feel sure that I was being injected. Not that it hurt me, just that for once I didn't have to ask if they had finished yet ! I was overjoyed. It was 23rd December 2016 - a Christmas present .
So if anyone is having to wait for something, anything to happen, or having EOD injections until no more improvement can be gained.... don't give up too soon.
I had no change in smell, but don't base anything on me.
Arrhythmia - definately a b12 issue. I almost checked into the ER it was so bad, but just needed more time as in months more time of doing EOD SI. This should resolve with time. My resting heart rate also ran very high but is good now as well.
Fatigue: It is true that things get worse before getting better so you need to keep on doing the frequent injections. Don't get convinced to space them out!!! I kept trying and it's a waste of time! Also, when you get more energy you think you have to make up for lost time, then you do more then you deplete what you have! I did a 10 mile bike ride as soon as I got energy because I was so excited for the improvement, only to find out it set me back for 2 weeks. so after that I did 1 mile gentle walks for 1 year. After 2 years of daily, I can do more, but the more I do, I still need breaks in between or the sciatica, back pain and tingling in the foot all comes back. The moral: be patient, keep up on the frequent injections and don't give up.
Nerve pain.... as I started injections, about 2-3 months into the EOD injections I started to feel pain all over all the time radiating all through my body to the bone. It felt like cancer or something. It was horrible. But it went away after 1 month,. I believe this one of the things meant by "it gets worse before it gets better". B12 is required for cells to regenerate. Our cells are constantly regenerating. With b12 deficiency, the cells don't regenerate like they should until you start doing injections. The theory is now they are regenerating and your nerve cells are repairing all at the same time. Thus the overall pain that I experienced while my nerve cells repaired. If you get this phenomenon, just keep doing the injections no matter how bad you feel. Hang in there. Be good to yourself and things will get better as they said.
I can't tell you how helpful those words were to me at that time because the pain was so bad that I was pacing during my zoom meetings and if I had not heard those words from this forum, I might have given up. Those words rang loud and clear in my mind and kept me going. So I hope to return the favor. It's so hard when you are in the beginning stages. However you are on the right path.
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