hi all. I wondered if anyone had experienced cooked B12 aka B12 ampoules that have gotten heated and no longer work effectively.
I SI EOD but the last half a year I have felt awful and experienced a lot of regression in symptoms. I can feel the nerves in my knees starting to go again and I’m honestly struggling.
I’m wondering if perhaps they got too hot over summer…
A new batch of ampoules are on the way now! But I wondered, how does everyone determine a bad batch vs ‘normal’ regression through something like winter. Is it ‘normal’ for a flare to be this severe? Maybe worth noting I do have quite extensive permanent damage from the deficiency which probably doesn’t help!
B12D really does humble you doesn’t it… life is one big cycle of trial and error
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AJackson21
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Thank you x I wonder if they got a little hot over the summer as it was about 2 months after that that I started to feel a bit rubbish and it’s gotten worse from there. I remember saying to my other half that the colour of the ampoules looked lighter than before, but I didn’t think much of it because there’s every chance it’s just my brain being weird! I think I’m going to refrigerate mine this summer if it gets too hot!
Hiya, yes luckily I’ve had the full shebang and my doctor reviews my results every 6 months. I had an iron infusion in Jan last year and still take daily vit D and folic acid. Luckily I know when my folate is getting low because I go a little loopy 🤭 and my ferritin is still nice and high.
It seems unlikley. Cyanocobalamine and Hydroxycobalamine are very stable in water sealed in an ampoule and I'm assuming thats what you are using as methy is hard to get and unstable when in solution. I'm also assuming you are buying German or French B12 not from China or India which might be fine or might be colured water.
It's so hard to tell. As much as you can realise 'this isn't right', there's still always a bit of doubt in your mind as the illness can fluctuate so much!
B12 ampules should be kept in the top of the fridge door in the original cardboard box. Mine stays at 5 degrees Centigrade & that way there is no possibility that it will deteriorate till the use by date. I take one out when I need to inject and still keep it out of the light and use it straight away. I do not find that cold B12 hurts and it will soon warm up in my body.
The instructions from the manufacturer for mine say to leave in a cool dry place at room temp, so this is what I've done. A lot of people swear by refrigerating, a lot don't do it at all, it's all very confusing! I will see what the new ampoules do and see if they improve things for me, if so then I will start storing them in the fridge during summer.
All manufacturers say to store under 25 degrees Centigrade. The best way to do that is in the top door of a fridge. Mine sit at 10 degrees Centigrade +/- 0.2 degrees. That is the best way of conserving all biological material as I know full well as a retired biologist. All manufactures tell us to ensure that 25 degrees is not exceeded. If asked I am certain they would agree with my fridge door solution. In the recent hot weather many homes exceeded 25 degrees as it was extremely hot and will continue to get hotter till we fix the environmental emergency.
I do exactly that and still find that I have odd times when some appear to work better than others but as I said its impossible to tell if its me thats off or the ampules😬
I am wondering the same thing, I ordered a 100 ampoules before the short hot spell we had in the uk last summer, the delivery was delayed then left on my doorstep in the sun 🙄I keep mine in an insulated bag in a dark draw and use an ice block when the temp goes up.
I have just ordered another 10 and will see if there is a difference in how I feel
I seem to have gone downhill again since october, I had to have a private iron infusion in july last year as after 2 years of eod b12 it dropped a lot. I did have 'iron flu' for 6 weeks after then felt better for a short time.then I tried to space to every 3 days and after 3 weeks felt terrible, so back to eod 🙄 I also take folic acid 5mgs on day of injection,
I had bloods done in nov for folate, iron, vit d, the private dr reviewed the results and all good but told me to try reducing folic acid to once weekly as my results for that were top of range ? After a short time I had the old 'dizzyness' and tiredness back, blurred vision,balance issues, again too, I've never got rid of my achey legs in the two yrs but pins and needles ,tinnitus all disappeared.
I'm at a loss to explain this, never had support from my gp even after a private diagnosis of PA which is in our family, I have changed gp surgery now and as I have hashimotos will need a blood test to check that, so trying to get the stamina up to ask if my folate levels can be checked too.
Sorry for this looooonnnnngggg post 😊
BUT can I ask is it necessary to take multi b vitamins and drink gallons of coconut water tto keep up potassium levels ,as advocated in some face book groups? I do take small dose of magnesium glycinate daily, I'm just fed up trying to work out stuff for myself 🙄
It's so tricky isn't it. I found the coconut very necessary at first! however after a few months the need reduced. I'm expecting if my ampoules did get cooked I'll need to start again while I go through the joys of reversing out again! However I never took a B complex or B multivits, my doctor told me not to take anything outside of the prescribed D, folic acid etc. I did take a bit of magnesium but didn't really notice much of anything from taking it! The trial and error gets old fast.
It certainly does !!! I feel like I'm going through reversing out again.....I sleep on the day of injection again like at the beginning, no energy, feel awful. So its either the b12 not working and symptoms returning OR its not the ampoules and there is something else wrong with me....so fed up, I've spent half of my life in bed the last 4 years, just being offered the odd prescription of folic acid by my nhs dr, and having numerous blood tests,meanwhile my b12 was dropping through the floor, thats why I went private, it cost a bit but worth every penny. Little did I know that wasnt the end of it.....🙄
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