Hi, am here again! I’m not sure can handle these side effects to the course of B22 injections have just completed (Monday), I haven’t slept well since having them (sleep & night sweats for months before), I’m having palpitations and anxiety through the roof (also suffered with this last two years before diagnosis of adrenal insufficiency), this is going on and on. It’s affecting every part of my life and especially home life. Is there anything other than the Anti D’s I am on (which are probably helping in some way), just to get through this period which I understand is called the reversing out period?
Really, really appreciate your help on this.
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Fruitcake61
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It can be a tough time. I am very fortunate to have an understanding and supportive partner, and this allowed me to rest and do very little on days when I felt unwell. I did share a lot of info with him to help his understanding of the weird and wide ranging symptoms of PA.
I also tried to take the attitude that it took a long time to become so ill, therefore it would take time to improve. Like you, I had bad insomnia during loading doses and an almost constant migraine, and the anxiety was horrible. I even postponed loading dose 6 as I felt I was dying after dose 5. My mantra became 'This is not me, it's my B12'
Other members here advised keeping a diary of your top few symptoms, and this does help you to see improvements even if they are small and slow. But things will improve with frequent enough injections. Now my other mantra is 'It's a marathon, not a sprint'
Thank you, you’re right I have to remember this .. that it can take a while. I think I’m more concerned and frustrated as also have Adrenal Insufficiency and it took years to get diagnosed and on correct medication that suited me. When I then didn’t improve very much and eventually found to be B12 deficient, I though ah this is it, I can get some balance now with my health. It was a shock really to feel so much worse after the loading doses. But it’s helped so much being able to ask questions on this forum. Thank you.
Yes, when I was diagnosed B12 deficient I was glad to have found a reason for all my weird and seemingly unconnected symptoms. Then I started researching... and realised it was not going to be a quick fix!
These first few weeks are the hardest, as healing on so many fronts takes a LOT of energy and burns through folate, iron and potassium, so do make sure your levels are good. I believe our red blood cells take up to 4 months to renew, so at that point blood oxygenation and energy will be much better.
The key is to get injections frequently enough to maintain the healing momentum - which probably won't be the 3 monthly ration your gp suggests. Remember neurological symptoms should be treated with every other day injections until there is no further improvement, according to NICE guidelines if you're in the UK. I am fortunate in having an NHS prescription for B12 ampoules and have been self injecting for 15 months.
Thank you that’s really helpful and so understand it can take up to 4 months to feel benefits. I think I am only due a booster in 3 months so do you think this is sufficient?
Unfortunately 3 monthly is the usual NHS frequency after loading doses. No-one seems to know how this was decided, and for many people it isn't really enough. Do you know why you are deficient? Were you eating plenty of animal based produce - meat, eggs, dairy? If so, it's likely you can't absorb B12 and you can't recycle it as normal, so you will not be able to use what your body has stored from the loading doses. If you are vegan or veggie, the loading doses may have brought your levels up enough to last, with an improved diet.
However, a quick read on this site will show you that most gps don't understand B12 deficiency and don't treat it very effectively. That's why so many of us self inject more frequently, with or without our gps knowledge. If you have neurological symptoms like neuropathy, poor balance, tingling, brain fog, migraines, etc, the NICE guidelines say every other day injections until there is no further improvement so you could try to persuade your gp to take that approach. See how you go, and if your deficiency symptoms start to come back before the three months go back to your gp. If you need to explore self treatment, people here know everything!
So .. I think it’s an absorption issue as I have had stomach problems for years and also recently diagnosed with adrenal insufficiency. I have been taking folic acid since December and last week had another blood test to ensure my folate levels were increasing. I also had my last loading dose on Monday. I picked up a copy of my results today and they say :
B12 & Folate >128 Range 51 - 128 pmol
Serum folate 19.3 Range 3.10 - 20.50 ug/l
last bloods taken in November showed Folate 2.7 ug/l. B12 61 pmol
Does this mean that my levels are now normal or would this be because have just completed loading doses?
Would appreciate your advice on this. Thank you again.
It's most likely that after loading doses your B12 levels are as high as can be measured by the lab. For that reason it's not recommended to retest after you start injections because it will always show as top of the scale, but that doesnt mean your body can now absorb it from food as your gastric situation hasn't changed. With malabsorption it's likely you will need injections more frequently than every 3 months. Folate level is good!
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