Hi all. I am new to the group and this delightful condition we all have! Similar story to many, blood tests showing low B12/folate/ferritin (although this hasn't been mentioned at all by my GP). Had 6 x loading doses followed by 5mg folic acid that I'm on for three months. I was told last week that since my test for IF antibodies was negative that I do not have PA. I had a terrible time with that GP and have sent a long letter of complaint explaining why this is inaccurate. They have therefore said I don't need a quarterly injection, just 1mg oral B12 daily. This is a seperate battle I am having, to get a diagnosis of what is the cause if it isn't with PA. Again, it seems like many of you struggle with GPs but I am in for the fight!
I am 40, female, and have some worrying neurological symptoms such as meralgia parasthetica (numb thigh), confusion, lack of concentration and anxiety. I didn't have any of these symptoms until around 4 months ago. I also started with a thumb tremor a few days ago which is very annoying! I am off work at the moment as I have a high-risk job and can't focus enough to be safe at work (and I can't get through a day without a nap!). I wanted to ask the group, after your loading doses, how long before you started to feel better? I feel like I am losing my mind; one day I feel slightly better and the next day like I've been hit by a bus again. I definitely felt worse after/during those injections as I felt really lightheaded too. It has been 10 days since I started folic acid tablets and I was hoping to go back to work next week, but I simply do not feel much improvement yet. The GP is so unhelpful and it takes 3-4 weeks to get an appointment at the moment. Any support or experience would be appreciated since I truly feel like I am being a wimp as the GP assured me I would feel better soon after loading injections.
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ClaireWF1346
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Thanks Nackapan . I am aware of the IF testing and stated this to my GP several times but she just keep repeating the same thing "you don't have pernicious anemia". I walked out in the end through frustration but have since sent a complaint letter to the surgery stating the facts and demanding they provide me with accurate advice. I have been allocated another appointment in a few weeks.
I am a member of PAS but there is so much information, I wanted to how long members on here suffered at first. I need some normality back! I have just woken up from a 1.5 hour nap as I am so exhausted again and suffering with headaches too. I had hoped to feel better by now as I have been off work almost 4 weeks. I have been told that my thigh numbness might be permanent.
No mention at all of the low ferritin but it was within the normal range, just at the bottom end in the 60s I think. My B12 wasn't as low as some others on here, it was 214 when last tested, but I have had symptoms for at least 9 months. Just thought I was "getting old"...
B12D/PA is a cumulative progressive illness and we are not diagnosed until a great deal of decline has happened. Not only does the decline have to be stopped we also have to reverse the harm that has taken place which involves the whole body and mind. We become out of kilter. Depending on how far down the deficiency road you are, it will take months and years to reverse the harms and find a new stability. If you are older recovery is more precarious.
Ouch. There was me thinking I just needed to have a few weeks off to allow my loading dose to take effect! It is difficult to make people understand - when you say what's wrong I think people think it's just case of changing what you eat or taking supplements.
also, if your b12 is that low and you eat meat. Mine was 190, That's severely low. It takes 4 years to deplete the stores and end up that low.
I was that low and was bed ridden. Forgetful. All sorts of back pain. Poor coordination.
The only solution was to inject b12 DAILY. After 2 years I was out climbing mountains. I'll never be the same but I am doing great. There is hope!!
If left untreated the symptoms can become Permanent.
This, it's best to get started with injections so you can heal. Don't let anyone talk you into spacing injections.
As long as your liver and kidney function tests came out normal, then you cannot overdose on b12. The only time b12 is toxic is if you have an underlying, unrelated, already existing problem with the kidneys or liver but if those tests were done and they are normal then you are good. B12 won't cause a liver of kidney issue.
The healing process will be slow as in 2 years or more for me.
I highly suggest requesting frequent injections. If they won't give it to you, have them teach you how to self inject so you don't have to keep coming in for the subsequent injections.
Any time I tried to space out the injections my symptoms returned and I would have to start over again
Then don't tell them just keep doing their regiment and buy your own supplies so you can do frequent injections. It's what most of us do because b12 deficiency is so misunderstood.
This article explains all the misconceptions as well as facts.
ncbi.nlm.nih.gov/pmc/articl...
The pernicious anemia society has great info as well!
pernicious-anaemia-society.org
Ask any questions on this forum.
I was not low on folate so I don't and haven't dosed folate.
some people speed up their recovery by doing multiple injections per day. When I exercise I do multiple.
Everyone is different, but for me, To this day, 3.5 years in, I still must do daily injections at a minimum.
Don't wait. Get injecting by getting your own supplies now. It saved my career and my life.
Cheers.
Be good to yourself. It takes a lot of patience and self love.
My lowest reading was 194 for B12. I eat meat, two eggs per day and lots of broccoli, spinach etc. No chance it's diet related with me. I actually climbed a mountain in Cape Verde just after that blood test! Was extremely breathless and did not know why. Now I understand! I am in the UK and it's impossible to see a GP without waiting weeks/months so my next appointment is 16th April. And that was only given to me because I wrote a stinking complaint letter. They have already told me I won't be given any quarterly injections, only oral supplements of B12, so there is no way they will give them to me more frequently! I do actually take 1300mcg of B12 per day as the research shows some will filter through. I have considered going to a private GP but the costs are high.
Where do you purchase injections from? Can you do then into your leg muscle? I imagine if I told me GP this was my plan, they would strongly advise me against it and I doubt they would teach me to inject but I have nurse friends that could.
Thanks for you advice, even though you have told me what I was dreading to hear. I am just over a year into a civil service career and it isn't ideal to be off sick so long at this point, even though they have been completely supportive.
Thigh is what I do or mostly glutes, but glutes are dangerous and must be done right or you can paralyze yourself. I've been doing it for 2 years in the glutes but was trained by a nurse what to avoid.
Well ClaireWF1346, firstly thank goodness you work with the civil service so will be treated fairly re any necessary sick leave. Secondly, I am 4 months into this process and have been fortunate with my GP, was given the 6 loading doses then as symptoms returned within a week, continued with twice weekly injections while other tests were done. All tests except B12 normal, so after seeing a private specialist in Cambridge was diagnosed with Autoimmune negative PA. He showed me how to self inject subcutaneously which is easier and less painful than the surgery's intramuscular jabs. After reading the specialist's letter and at my request, my GP currently prescribes my B12 ampoules at the twice weekly rate. This is provisionally for 3 months. Currently I'm injecting every 3 days, and upping it to every other day if very busy or stressed - or if anticipating extra mental/physical demands.
My healing is now becoming noticeable (cramps and tingles massively improved, brain clearer) but it's not linear so can sometimes feel like 2 steps forward, 1 step back. And I have new stomach symptoms! Healing also depends on how much damage had occurred before starting supplementation, your age and other health conditions. I'm 66 years (was feeling 106 pre injections, now around 86...!)
So you are on the path, age is on your side, but patience and recognition of the need for self care and rest during this initial stage is a big requirement. Such a bad situation with your GP practice, well done for taking them on. I took the route of respectfully providing info to my very busy GP who wouldn't have time to do his own research (!) and being open about my intention to self inject to save everyone time and money. But I'm very fortunate in having a doctor who was willing to listen and not immediately dismiss me. You may have to change doctors but unfortunately there's no guarantee another one will be any better. Very best of luck with that and with your healing x
Thanks so much for your advice. I think I will have to get my current sick note extended again, see the GP on 16th and see what action is proposed following my complaint about them fobbing me off with oral supplements without identifying the cause and then go from there if no follow up/investigation is suggested. That may be in the form of a private specialist. I don't have the GP each time and I can only enrol at my surgery as it's all about catchment areas. What did you search for when locating a specialist? A hematologist? Or something else? I am in Leeds, West Yorkshire and couldn't see anything relevant during a quick Google.
I am not very good at literally doing nothing...I have never really had time off work before this. But I think I need to change my mindset for a long journey of recovery rather than the fast results I was promised following the loading doses!
It is definitely tough to change your mindset from busy person to gentle recovery! I found my specialist through this forum, he's in Cambridge but certainly worth a trip if you can't find anyone closer. I will send details in a private message, and maybe someone here can recommend someone in your area. But they seem to be unicorns...🦄
It's a lot to take in but your in the right place to learn about the condition. I love the fact your ready for a fight because for many of us that's what it turns into hence why there are so many of us self injecting. My Dr refused to see me anymore when I tried to educate her and passed me on to another Gp. I expect as your a member of Pas you already have the new guidelines.....
Some respond to injections quicker than other's. I made slow progress with some symptoms resolving quicker than others over 4 yrs so it's been no quick fix. I like many others also have the numbness but mine is in my feet. My Dr insisted on my seeing a neurologist. He was an arrogant man who new naff all about B12 and tried to label me with FND ! I raised a complaint.
I now self inject daily and have made some improvement but I also have a lot of other conditions going on hence my slow progress. I have made some headway by insisting to be seen by a gastrologist which I feel should be the first port of call a Dr should request unless your a veggie. I have absorbtion problems but still under investigation.
I am prescribed folic acid, I also take a gentle iron tablet, B6, B1 and K2 which I buy myself. If your Dr requests future B12 blood tests quote them it states in the guidelines not to retest once on treatment.
I am sorry your having to fight which is exhausting when your already drained but infortunately it is something we have to do.
I am ready for a fight! It IS exhausting and adds to the feeling that I am being a wimp about the whole thing. I shouldn't care what people think (or what I think people think...) but it is so misunderstood that the answer seems to be to get more sleep and you'll be fine. Obviously that isn't the case! 4 years....wow. I hope you continue to improve. I have PCOS but other than that, I am healthy. I hope that means less than 4 years to feel better. It looks like I'll trundle on until my next GP appointment and if they won't help me, I'll tell them I will start to self inject. I will go armed with information.
Tread carful with regard your Gp you dont want your injections stopped if you can help it. I was given the loading dose then the one size fits all regime of 3 monthly. Because I still had the most wretched symptoms I requested to be given them more frequent, after a battle they agreed 2 monthly. It has been a blood long haul but my advice is to see the Gp dont mention self injecting just see what they suggest and take it from there.
My daughter suffers with PCOS and oestrogen deficiency. I am going to send you a private message on something I just googled. You will find it if you click on the paper aeroplain at the top right of the page with chat underneath it. 👌
Recovery can take a long time depending on how long things were bad but only happens when your 'Active B12' is kept high. Right now, your GP is doing a bad job in not getting you enough B12. I suggest a weekly shot till full recovery, which can be several months to a year. I must also say that many people are unable to reduce the frequency of injections once on a given schedule without experiencing symptoms, so you may have to be on injections for life, but it is worth it. Good luck!
Thank you. It's just so frustrating that I finished my loading doses and have to wait a month to see a GP again about more of them...if they will give them to me (unlikely). I will keep up with my strong oral supplements and hope some is filtering through.
Sorry to hear you're having such an awful time with your GP. I have a great GP, but even that has limits. It's really positive that you are already informed and are sticking up for yourself, good luck!
As you'll have seen from the other replies, recovery time is really varied. I wanted to add my reply as we're a similar age and sounds like we're at a similar place in our careers. I was diagnosed in summer 2022. I had my loading doses and was signed off for around 2 months. I pushed myself to go back to work as I had started to see some improvement and the GP had said once I had the next jab at 12 weeks (along with being 3 months in to taking vitamin D and iron supplement), I'd feel like my old self again. Sadly this was not the case. I quickly realised it was way too soon to have gone back to work, and there is a massive difference between being able to get through a day doing nothing and getting through an intense full time work week. I was signed off again in December. I saw a private haematologist at this point who prescribed me another course of loading doses and brought my regular injection frequency to 6 weekly. I started to feel better again and went back to work on a phased return in March last year. Initially, this was working ok, but by June I started to dip again. I've been having my injections every 4 weeks since then, but at the end of last year I had to acknowledge that I couldn't keep going, and in November I dropped my hours at work to part time. I now work 3.5 days per week, as this was as low as I could go financially. I'd love to tell you this has made a difference, but honestly, it's still pretty frustrating. I'm still exhausted a lot of the time. I put the majority of my energy into doing my best at work so I have little left for my personal life, but I still feel like my career is stagnating / constantly wondering how long before they start trying to manage me out so they can replace me with someone who can do the job fully.
I don't want to scare you, and hopefully you will have a much better recovery, but I wanted to share my journey so far and hopefully encourage you to take enough time off now to heal, and push against the urges you're going to have to get back to work as quickly as possible! Good luck with everything, especially the awful GP experience, I hope it gets better for you.
I too am new to the group. I was diagnosed with fibromyalgia about 18 years ago, and coped fairly well with it. But the last few years I have had on and off anxiety, fatigued more than before, and various gut issues, like bloating and nausea. I have also had hip/groin/leg pain which I have been trying to get diagnosed for two years no am currently having acupuncture, seeing an osteopath. I am also seeing a psychotherapist as I have had some had some stress in my life which doesn’t help. I have been through every test imaginable, scans, MRIs, ultrasound, X-rays. And many GP appointments and blood tests. My B12 has been, over the last 15 years or so fairly good, between 300 - 450, however the last year it has been lower. In September 2023 it was 168, and in March this year it was 213. Of course my surgery has put ‘normal, no actioned required’ on my notes. But on going back through previous readings and doing some online tests for various things, it shows my levels have dropped considerably from previous readings. Also my Folate level is always on the lower side. Also my iron is appearing lower than previously. I did a histamine intolerance test which came back showing I had extremely low diamine oxidase which converts histamine. So there is obviously something going on with my system, but unfortunately GPs, and other health professionals, don’t look at the bigger picture. I have arranged a call with my GP for this Thursday to discuss B12 injections, so fingers crossed.
So, ‘once more unto the breach dear friends ……’ I think that’s the saying. One day I do hope to be well again.
It sounds like you're having a rough time of it and I imagine the fact that your historical results are not being considered only adds to your frustration and stress. Try to stay positive and hopefully you will have the treatment you need soon x
keep battling, although it’s hard you can get there !!!
I had a positive IFAB test amongst other things and my B12 level was sub 40, the lowest the B12 consultant had ever seen or heard of.
GPs were rubbish, health assistants even worse. Loading doses helped a little but were a temporary sticking plaster.
I eventually bit the bullet and had a private consultation in Cambridge, as well as an iron infusion.
Resultant letter recommended EOD injections ‘while symptoms persist’ and I have been in this prescription since August 23. Most symptoms have abated but I still get the odd mood swing, pound and needles, brain fog etc.
I remember being told that you need 1 month of EOD injections for every year you had been undiagnosed and 8 months in I feel this may be close to the truth.
I am back doing sports most days, last week I averaged 25,000 steps per day and feel good physically.
Bear in mind that B12 is marked up for subcutaneous injections which is a much easier way to get it into your body, and leaves you the perfect excuse to mai rain some body fat 😀
Keep fighting, self inject and beg borrow or steal for a private consultation. The money I spent on this was recouped after 3 months of self injecting with gp approval compared to buying from Germany.
I am all up for an excuse to maintain body fat 🤪 Going to look into a specialist in my area as I feel like I am just waiting to decline again... although I feel I may be too late as I'm exhausted again. Slept 12 hours each night this weekend and that's with a day nap too! In my former life I would naturally wake up when my body had had enough - after busy days I would sleep longer but quiet days sometimes would only need 7 hours and be awake. I really hope the GP I see next just lets me go back on regular injections until they at least know the cause of the issue. It's heartening to hear so many people in this position as it makes me feel less like I am losing my sanity.
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