Have any self-injectors ever found their symptoms coming back big-time over a period of several weeks and wondered if they've been using a duff batch of B12?
I have been self-injecting every other day for 18 months because of persistent neurological symptoms (paraspinal muscle spasm). I was doing great and improving slowly but steadily from day one.
Then suddenly about 6 weeks ago I started to go downhill. One by one my PA symptoms started to come back. I really started to panic thinking maybe my PA diagnosis had been wrong (despite my near-miraculous recover on B12!) and that there was something else going on.
Just as I was preparing for my appointment with my GP I had the idea that perhaps my latest batch of B12 (Depot from Panpharma) was somehow to blame because it was not effective. I ran the idea by the doctor who seemed unusually receptive (!) and in the absence of any other theory about the possible cause of my sudden decline, he agreed that I should order a new batch and see if that helped. I am going to place a new order tomorrow.
As unlikely as it sounds I am praying that I am right and that it is a faulty batch. I can't think of any other cause for the return of my symptoms and clearly nor could my GP.
Has anyone else had a similar experience?
Written by
migi2z
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Thanks Nackapan, that's very encouraging if a bit worrying too. As for the doctor, I got the impression he really didn't know much about PA. I was so surprised at how readily he accepted my theory (I usually prepare for a battle) that I didn't think to ask for a jab either.
Yes, lots of us, especially at about 18 months to 2 years in!
Usually the B12 is fine, it just means you have become deficient in something else which is stopping the B12 from being fully effective. Something else has become the "limiting factor".
The main things to check are: folate, other B vitamins, vitamin D, potassium, magnesium and iron, but don't rule out more obscure things too.
It's all about balance! And fine tuning the balance of everything gives you good results again.
Unfortunately this doesn't always remain constant, depending on what's healing most at the moment, what you are getting from your diet, what you are using up for energy to meet your demands from activity, and what your environment is like - plus additional things like illness, etc!
I hope you find what's doing it and continue to improve again soon. I've been through it lots of times over and am still significantly improving, if I get the balance of all the additional things I need right, 9 years on. Last week I had a couple of days where I was the best I've been for about 12 years, a few weeks before that I was celebrating the best I'd been for 10 years! But in between I've forgotten to take a supplement, or misjudged how much I need (my guts don't work properly so pose additional challenges!) and I'm pretty slowed up again. The important thing is not to take anything less than feeling 100% as OK and always striving for improvement.
Thanks to everyone who took the time to respond to my post and for all the advice, information and support. What an amazing group this is!❤️ Your knowledge and commitment have helped me more than I can ever express on my PA journey and this was another example. Very much appreciated. Best wishes Migi2z
You don't mention specific PA symptoms that are returning so
I'm going to shoot from the dark here.
The probability of this being a bad batch of B12 is very low considering your supply is from a reputable supplier. Not that it can't happen so you should pursue that. But there may be other things to consider.
My personal mantra with PA is "it ain't just B12!". I've learned this the hard way through experience. I think I may be the poster child with advanced state of PA AIG.
You may want to check (be tested for)
Thyroid antibodies, indicating autoimmune Thyroiditis or Hashimoto's. This is a autoimmune condition commonly associated with PA.
Check for gastric acid levels. Acid reduction a natural progression of PA. Easiest way to get an indirect assessment of your gastric acid levels is serum Gastrin levels. If high, above normal then you have low gastric acid or hypochlorhydria. If Gastrin is very high, like over 1000, a condition called hypergastrinemia, then that will indicate zero gastric acid or achlorhydria. The reason this is important to keep an eye on is achlorhydria is what causes the micronutrient malabsorption issues associated with PA as deniseinmilden mentioned in her response above.
Serum Ferritin levels. Low normal us above 30 but those with PA/AIG should keep Ferritin above 100. See my post on Iron Deficiency Without Anemia (IDWA). Iron malabsorption is a common occurrence for those with PA.
Keep a check on glucose levels and A1c. Another known autoimmune disease associated with PA is diabetes type 1. This will present initially as type 2 diabetes but may eventually progress to insulin dependent type 1.
All of these presenting together is called Polyglandular Autoimmune Syndrome (PAS).
I mention all of these because they all have so many overlapping symptoms that it is difficult to discern which is causing them.
Anyone that is truly diagnosed with PA should be on the watch and tested for the above.
Yep. . . . . Thought the same thing bought new b12 not one bit better. . . . .Then bought hydroxo instead of cyano , still not one bit better. . . . . . It was me not he B12. . ... . There something else your low on. . . . . . I use B6 since about a year from diagnosis. . . . . Look up Vit B6 deficiency symptoms and see if they match your problems. . . . . The only orall B vitamin that works for me is B9. . . . . . . B12 doesnt go off quickly unless left out in daylight for days . . . . .It looses about 7% after 7 days broad daylight so little chance of that for most. . . . . . .I keep my ampoules in the fridge in spite of all this room temp blurb and have used them well past the use by dates but the dates I been getting of late are all good. . . . . I could not afford to throw £££ away. . . . . And it is not the kind of stuff that rots or goes off. . . . . .
Cynical head on: GPs like the idea of faulty vitamins … they don’t recognise them most of the time.
Experiential head on: Could it be your body is wanting more B12? When this happens to me it’s usually because I have made progress up the recovery curve. I increase my jabs and the symptoms disappear.
I had to replace my b12 ampules as they were months out of date and were not helping. I think it might be me as I don’t feel so good these days after a TBI in December. I do hope you can take your issues up with the manufacturer they should replace your box of b12.
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Stopping b12 injections 
B12 serum monitoring 
Nof able to absorb every brand of B12, specially generic brand
