I am 24 years old, and relatively new to this condition - I was diagnosed with PA in September after finding low b12 and folate levels 3 months prior (I was initially put on tablets, and after no improvement they tested for IFAB which was positive.) I had 6 loading doses across October, with maintenance injections since being a little irregular (4th Dec, 1st Feb, 22nd Feb, 9th March, 23rd March). Irregular time gaps as I started off much less frequent and my GP has been agreeing to increase the frequency to now every 2 weeks - compared to most GP's I think she definitely is listening to me when I am explaining my symptoms, and obviously since agreed to a bi-weekly injection, which sounds like a LOT more than what most get??
The problem is.. I actually still feel horrendously unwell... I can barely do anything for myself... (can't even take the bin out as an example).. my overwhelming symptom is extreme fatigue/weakness. I had improved a bit across December, and then since its just massive dips and I feel I am getting worse.. It is to the point that I feel so weak I actually feel like my body is deteriorating.. it sounds dramatic, but I genuinely feels like I am dying, just incredibly slowly..
After all of the injections I have had so far, along with taking 5mg folic acid, Vit D, eating well etc - I feel like suuurely I am getting more than enough B12 now at every other week that I shouldnt be feeling this awful.. at least not worse? I'm feeling very distressed, feel like I have literally zero quality of life, and now I am genuinely concerned there something more going on....
Any advice would be hugely appreciated..
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Runnerblue7
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was the folate prescribed by your doctor. If not then suggest you stop taking it for a while to see if that helps.The dose you are taking is the dose used to treat a efficiency.
You only need to supplement folate if your absorption problem is also affecting absorption of folate but maintenance doses would be much lower.
thanks for the message yes it was prescribed - I was on it for the 3 months before my PA diagnosis (my folate levels were off the scale low initially), then stopped them in October when we saw the IFAB positive I started B12 injections.. after fatigue was getting a lot worse, GP thought worth trying to go back on them as of about 3 weeks ago - I imagine to review once I finish this course..
how would I know if I have an absorption issue with folate also?
the body doesn't store folate in the same way as it stores B12 so if your levels fall or are low whilst you have a good dietary intake then you have an absorption problem
Everybody is different. It may be that injections every other week aren't enough for you. Try asking the GP to make them weekly.
And get your folate levels tested. 5 mg is a lot and shouldn't be prescribed for more than 4 months without a proven absorption problem. If it's not prescribed then stop them immediately and switch to 400 mcg a day.
If you still don't feel any improvement you could try 400 mcg of methylfolate a day. It's more expensive, but a few people may find it better than folic acid.
I presume your doc has checked thyroid function and diabetes. If not, get that done.
Thanks fbirder, really helpful.The folic acid is prescribed by GP since my levels were so low, but good to know not necessarily to be taken long term - dont think I've had any proof of absorption issue here, just very low levels..
I've had both thyroid and diabetes test.. only thing they tested for thyroid was TSH level, which was completely normal - are there any other tests you would recommend here?
I remember the "slowly dying" feeling all too well. Recovery takes time, and often people get worse before better. No-one warns you that can happen - mainly because GPs do not seem to recognise this and so have no plan B for it. Quite often, this is when the antidepressants get offered !
Of course there might be another reason : usual problems are low folate, ferritin, vitamin D and/or Thyroid issues. Your folate supplements might be too high if taken for more than 3 months and not retested after by GP. Your ferritin hasn't been mentioned. Vitamin D -is that prescription ? Thyroid mentioned by fbirder too - can be another autoimmune issue (often more than just the one a problem) or can be affected by all the other struggles.
GPs usually test just TSH and T4 but a fuller thyroid check will also include autoimmune checks: anti-TPO and anti-TG. Although not generally NHS available, can be done by postal blood test and online results.
Get everything tested first. Go via GP if possible- she seems very good and is responding to your reported symptoms. A great help to have one you can trust.
It took me a long time to get ferritin and folate to stop being erratic - probably two years to get stabilised at optimum levels. Thyroid, although affected - signs of struggle- no autoimmune problems found. Had this checked because two of my sisters have Grave's disease (which is autoimmune thyroid) and other autoimmune problems rife in family: psoriasis, vitiligo etc. Worth asking family members if there is a history- that could help you. As for vitamin D, I get it on prescription because osteoporosis was found in spine.
You are young, Runnerblue7 , and will get on top of this condition, I'm sure. Let your GP help you get there. If you have any neurological symptoms, you can have every other day injections until no more improvement can be had. Although many have to fight for this or don't ever get that frequency, your GP might be more aware of the medical guidance on this. My GP, when I did not respond well to B12 injections, started reloading injections at 2 injections per week and this lasted for 6 months despite making the nurses jittery!
Although this was not a complete answer for me, it certainly stopped the rapid deterioration.
Hey Cherylclaire,Thanks so much for your message!!
I'm glad I'm not going mad with the way I describe the feeling - feel like I have to be careful when I use that description because people will think I am being super dramatic, but that's genuinely how my body feels!!
My iron / ferretin was all normal.. vit D was just on the border within normal range, so a bit low.. its just an over the counter supplement I'm taking for that at the moment.
Sounds like its definitely worth getting more tests for Thyroid - GP had just said not an issue since TSH was normal, but I am lucky with how willing she is to listen, so I will definitely raise it again in my next appointment!
I would ask to re-do a loading dose period, but I'm anxious it will make me even worse than I am now.. is this something I just have to push through? / is it even a thing to get "worse" from having more B12??
I'm sorry you also went through a long tricky period to get to where you are now, although glad you seem to have got your levels to balance out. Thanks so much for all your advice, it's really, genuinely appreciated.
I think fbirder had an explanation for why people can feel worse after starting B12 treatment. All I can tell you is it's definitely a thing: many people have posted about it.Just knowing that can be a relief.
Many times I've thought "surely this is more than just a vitamin deficiency ?" - but if it is, no alternative has been found in over five years. I am satisfied that all other avenues have been explored, and that my symptoms do not fit neatly anywhere else.
I am currently still "seeing" an oral medicine consultant, who has really helped with angular cheilitis (split, sore, bleeding corners of mouth) and a rheumatologist, who is looking at whether just vitamin D alone will help with bone density / osteoporosis issues. Since my blood tests in November were the best in all that time, I am quietly hopeful.
Take good care and stick with your GP.
Far rather a responsive doctor who listens than a fruitless search for an expert in B12 deficiency.
B12 deficiency can definitely make you feel very poorly. “Slowly dying” is a good description as I’ve really felt like that before my deficiency was discovered, also have been on 5mg Folic acid, Ferritin and Vitamin D.
If all else is well then feeling better from B12 injections can take some time as I remember it was about 4 months of 1 weekly injection before I really felt a difference.
At first I also thought how can this be due to low B12 until I googled the symptoms of low B12.
Try and push for more frequent injections as your GP sounds to be very understanding, more frequent injections may mean a faster recovery for you and 1 every 2 weeks might not be enough, (I found 1 per week suitable for me) and try for other tests if there is any but B12 will definitely help you, just give it more time. Sounds like B12 most likely.
Before I was diagnosed and started on B12 injections I had that feeling too. The Feeling very real that I was dying. Once I actually felt like I was decomposing. After the injections I didn't feel that anymore or since. I healed up to a certain level and not beyond but I could live with that. I had alot of permanent damage. So that's how it was for about 20 years, daily injections maintaining me at my level of healing but with permanent damage. Not complaining I was grateful for the improvement I got. Now the injections have been stopped because my blood test B12 is high but I am getting my old symptoms back. Haven't been able to convince a Doctor yet I need to stay on injections to maintain and not go downhill. Maybe you are not getting enough B12. I needed daily injections. Good luck. Oh you could try sublingual B12 maybe. It worked for me for a long time but has stopped working lately. Don't know why. 5000 sublingqual, hold under tongue for 20 minutes a day or less often it that works. For years that worked as well for me as the injections. The injections were 1000. I am trying to get injections precribed for me again since suddenly sublingual is not working...a mystery.
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yes it was prescribed - I was on it for the 3 months before my PA diagnosis (my folate levels were off the scale low initially), then stopped them in October when we saw the IFAB positive I started B12 injections.. after fatigue was getting a lot worse, GP thought worth trying to go back on them as of about 3 weeks ago - I imagine to review once I finish this course.. 
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