I was diagnosed back in Feb this year after my Intrinsic Factor blood test came back positive and I was diagnosed with Pernicious anaemia.
I went to the drs with symptoms of exhaustion, pins and needles, heart palpitations and nausea as well as brain fog.
I am 41, working full time, have 2 children at home but not really children any more they’re 17 and 19 and my husband who also works full time but I get home from work and literally can’t put one foot in front of the other let alone have the energy to cook dinner.
I am having B12 injections every 8-12 weeks and my last lot was 3 weeks ago but I have felt no affects of this at all! I could sleep my life away at present.
can anyone relate just be good to hear how others are feeling and coping?
thank you in advance
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Lucymay82
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Yep, I felt pretty much like that at the start. (I also have a positive I.F.) The three monthly injections kept me alive, but not living, if you see what I mean. I now self inject twice weekly and feel much better. Originally, I injected weekly, which held me fine for a good few years, then I started back sliding symptom wise, so twice weekly it is.
I now go out for long walks (3 - 4 miles) a few days a week and look after my Grandchildren, who are 4 and 1 on a Saturday. I do get tired days, like now, as I'm getting over Covid, but the good days far outweigh the bad now.
If you have any questions, just shout, we're a friendly bunch and there are a lot of people here with a lot of knowledge, so ask away 🙂
Maybe this is something I will need to do also. I have an appointment with my drs next week and I don’t think like the last injection 3 weeks ago has made a difference. The stomach bloating is after everything I eat and now I’m forced to buy baggy clothes to hide the fact that I look almost 3 months pregnant. Which is also impossible as I’ve had a full hysterectomy.
I’m having to explain to family members and work colleagues the symptoms of this invisible disease. I sometimes feel like people just hear me say I’m always tired but don’t fully understand why which is also making me feel low.
P.A. tiredness feels nothing like normal tiredness - a good night's sleep just doesn't cut it. That's the problem with invisible illnesses, there's nothing to see, so people assume its all in your head, or worst still, that you're being lazy, when it really isn't the case at all. It does drag you down, both mentally and physically. You have to learn to be kind to yourself and also to pace yourself while you get better.
I'm the support for the rest of the family, I think 😂
Lol thank you you are. It’s so nice talking to someone else who has the same condition as I don’t know anyone else with it. I do feel that people aren’t as kind to invisible illnesses but this is affecting my life just as badly at the moment to the point I love my job and the people I work but I’m even thinking of changing it or selling our house to be able to afford to work part time. Honestly by talking to me you are helping more than you know.
I had a very intense job and was only a year into what I had hoped to be a long career. But, once I learnt that stress is an aggravating factor to B12 deficiency (and the job stress had probably made all my symptoms much worse) I had to make the difficult decision to resign. I know it's sensible to put my health first but it's really difficult to come to terms with. I was like you - a zombie at home and just waiting to a reasonable time I could slope off to bed! Now working part time and things are much better all round (with EOD injections) but it's tough to know what to do! Wishing you well.
I too have the tiredness mentally and physically but it goes up and down through out the day, at almost 3 months of eod injections. it does wear on me mentally at times I get tired but lay down a lot. I'm sure if you start injections eod you will start to feel better. I think I just get impatient at times.
I was diagnosed with PA after low serum B12 and active B12 tests and also a positive IFAb test, all carried out by my NHS GP.
The GP initially gave me injections every 2 months (no loading doses) and then increased it to every month as I was finding that the exhaustion and brain fog kept creeping back in before the next injection. I could just about cope with the demands of family life with monthly but there was nothing else left over and my day was over by late afternoon.
At that point I experimented with si weekly and this significantly improved how I was. I ended up si twice a week and have stayed with that regime for 5+ years now.
I feel lucky as my life is now on an even keel with constant energy levels and almost no symptoms, with the exception of occasional abdominal discomfort and a tendency to bloating (this initially improved when I did a course of Symprove probiotic).
Since the early days of PA my children have grown up and have mostly left home and I’ve retired so I can put my feet up a bit more if needed. Having said that, I help out with grandchildren twice a week and cycle fairly long distances 2-4 times a week (and Lands End to John O’Groats last year) so it’s by no means all rest!
It took about 18 months from diagnosis to si twice a week and about 2 years in total to get my life back. I think this would have happened sooner if I’d had twice weekly injections earlier.
I'm so happy for you to be all leveled out. I too have bowel issues I inject eod for almost 3 months and I was wondering on the symprove probiotic treatment. is that available on line and how did that work for you. I'm improving but I think I get too impatient on recovery but everyones postive post's keep me hopefull on the recovery and having their life's back. I'm still dragging most of the time of the day's and rest a lot. I did retire last June when I started crashing and dr.'s couldn't find out what I had wrong and went down to 86 lbs. I'm at 100 lbs today but my stomach just can't handle my favorites like fruits and vegies. I sneak them in a little but I can lose them very easily in the bowels. also did you have neurological issues during your recovery, and how long was it before you started to feel your energy back. thank you for your comments.
Hi, yes Symprove is available online (in the UK). I suspect my bowel problems were the opposite of yours as I had constipation and no matter how much fruit and veg I ate nothing was moving.
Pre diagnosis my symptoms were fatigue, brain fog (particularly forgetting what I was talking about mid sentence), digestive issues and a bit of tingling/vibration feelings.
I was lucky that I was diagnosed early on when I hadn’t realised that I was ill. I just thought I was getting older and was tired from my job as a personal trainer and being mum to 3 teenagers and one younger. Lucky for me I had an on the ball GP who tested my B12 levels for other reasons than me complaining of any symptoms (I’d had a severe oral allergy which suggested low stomach acid and from that he tested B12). My serum B12 and active B12 levels were low and I tested positive for IFAb.
The GP initially started me on injections every 2 months which made me realise that after 4-6 weeks the brain fog and fatigue were creeping back in. The injections were brought back to monthly by the GP which helped but it wasn’t until I started si weekly then twice a week that I had the energy to get back to full fitness. This took a good 18 months to 2 years.
thank you for your reply and your journey with recovery. that helps me have hope. I still have a ways to go it looks like but have seen recovery happening compared to how I was in the beginning. I will maybe order some of the symprove, I need to get my stomach better so I can eat a more variety of foods. I'm pretty limited for now.
You sound like you’ve been on a bit of a journey with yours and luckily found an Even balance and managing your life very well.
It does sound like I will need more injections. I am wondering are they supposed to be checking blood levels of B12 to get an idea of how long they last in me? As I’m newly diagnosed. Last year I went to the gp with these exact symptoms and yet it was only this year they did the correct blood test to find out why, it was just written off I feel for a year and hence my symptoms worsening.
My level was very low around 93 and then after the loading doses I went up to 1500 so almost felt like an overdose and I’ve had one more injection since my loading doses but they’ve never checked my bloods again to see how much they dropped in that time which I thought would have been a sensible thing to do just to see how quick they drop.
I am speaking with my gp next week so I am going to stay hopeful that they will review me to help me going forward.
Once you start supplementing you should not check your B12 levels. The frequency should be based on how you are feeling. You need them often enough to have no symtoms.
The hormonal changes of the menopause was my trigger to b12 deficiency. A euefectomy was my mother's trigger at 38.
I imagine hormonel changes are grossly underestimated in triggers for PA/ b12 deficiency.
I agree with what all others have said .
I got too ill to work or function .
As after being in your position for probably 3 yesrs with no b12 as b12 test was not done I literally crashed after being told menopause, stress ,anxiety ect .
So do act now.
There's only so much our bodies can take .
I'm in a much better place 5 years on .
I presently have a 2 weekly NHS
Not easy I know .
I was referred to a neurologist as symptoms so severe .
That helped greatly my demise as other conditions ruled out.
Nothing else medically found to date.
Was on no medications.
Ask for a trial of more frequent b1e injections.
I agreed to take responsibility for self In jecting .
I do sc at home .
Has been opposed many many times.
But must be a way forward.
Gp's very aware now in 2 practices to spread the word.
Get evidence .
Actually read up to educate nurses abs gps.
Trying to explain
even though I appear 'normal ' now that never get 'ordinary tired ' seems impossible to thise not dealing with this condition.
I expect 'ordinary tired 'rather than 'ill tired ' are my good days now .
Do persevere and do everything you can to get some quality of life back.
Hi there. Would you mind me asking what your B12 levels were. I'm also diagnosed with PA due to IF but my GP (I'm in Ireland) says my B12 levels (120 I think was the last one) are fine at the moment.
Like you I have absolutely no energy. I could sleep forever. I went to bed at 8pm last night. Feel like a child going to bed so early 😴
Apologies for short reply, I have an arm injury that restricts typing.
"I am having B12 injections every 8-12 weeks and my last lot was 3 weeks ago"
How many loading injections did you have?
Pins and needles is a neuro symptom. Do you have other neuro symptoms?
I would expect you to have had a B12 loading injection every other day for as long as symptoms continued to improve then injections every 2 months.
If you only had 6 loading injections then that pattern is aimed at people without neuro symptoms.
It's vital to get adequate treatment. Delayed or inadequate treatment increases the risk of developing permanent neurological damage. In severe cases, the spinal cord may be affected.
Many UK forum members resort to treating themselves because they cannot get adequate treatment from NHS. Some get extra B12 jabs from private GPs or beauty salons, some try high dose oral B12 (1000mcg or higher) but this doesn't work for some (didn't for me) and some as a last resort turn to self injection (SI).
PAS (Pernicious Anaemia Society) have support groups in UK.
I was diagnosed in my 40s as well. It took me a decade to learn that I needed to manage my care myself. The doctors are really in the dark about how to treat PA and you MUST treat symptoms, not try to measure levels. How you feel is the right indicator for how often you inject. Learn to self inject and get your supplies without the aid of your dr. Here in the states cyanocobalamin is the only thing that gets prescribed. Even if you can get a scrip for hydroxocobalamin, it hasn't been manufactured here for over a year and they won't commit to actually producing it. This is ridiculous. Currently, I self inject every two weeks and monitor my supply to make sure I don't run short.
Well here. Sorry to read how you are feeling. It is worth joining the Pernicious Anaemia Society for accurate information. There is a lot of false information out there and poor GPs receive little training in this area.
Buy a copy of Dr Joseph Chandy’s book Vitamin B12 Deficiency in Clinical Practice. Keep a symptoms diary or tracker. Get copies of your blood results in hard copy especially the Intrinsic Factor blood test. You do need good ferritin, folate and vitamin D levels too.
The British Society for Haematology state that it is pointless retesting B12 levels once treatment has commenced. So, the blood test saying 1500 ug/L is a waste of time and money. So, no you have not nearly overdosed. Plus, it is not addictive. That is another fallacy we often hear. Post or mid treatment we can have sky high levels. It does not say what is happening at cell level and certainly cannot report exhaustion, pins and needles, heart palpitations and nausea as well as brain fog.
Please ask GP for Coeliac Disease test and H.pylori stool test. The explanation to family, friends, colleagues, boss for Fatigue is My body attacks itself. This is a simple way of letting people know what an Autoimmune Disease is. These are systemic, they affect the whole body and are classified as Energy Limiting Illnesses.
Now, your children are the perfect age to undertake the preparation of dinner and other household chores. As is your husband. You delegate. When your children leave home they will have all these life skills and will be rather self-reliant and independent. Consider talking to your boss, or taking time off sick even reducing your hours.
Most of us self-inject because we need more than the bog standard 2 to 3 months. Plus, it costs GP Practices an arm and a leg to pay the nurse to administer the Hydroxycobalamin.
It is a learning curve and the body really needs time to heal. The Nervous System absolutely loves relaxing, that is how we repair and regenerate.
You can have your life back. But you need more B12. Once every 8-12 weeks is not enough for someone with your symptoms. You need loading doses of every other day at the minimum until your symptoms go away. Then find a schedule that keeps those symptoms away. I start getting symptoms again in 3 weeks. So I get my husband to give me an injection once per week. It is so sad that doctors are often so oblivious in how to treat this. My heart goes out to you. I was in a similar mess (sleeping 16 hours per day) before I finally got a diagnosis. I am 63 now and have enough energy to ski, play ice hockey 5-6 times per week, to take dance classes and to have a normal life. If you can't get enough B12 from your doctor, you may need to self-inject or get someone to give you your shots. I find it much more convenient than going to my doctor regularly. It also means I can get my injections when I am away skiing for several weeks.
I'm so moved by your recovery. I hope I get there as well, I was going to ask if you had any neuroligical symptoms during your recovery? I'm on my 6th weeks starting and inject EOD. I 've had improvements emotionally and neurogically but I can't go walking and exercising yet. I did my whole life but maybe one day. your comments are great to have support.
Early in my journey, after PA diagnosis, I needed to inject daily just to get through the day. After several months, every other day kept me going for nearly 3 years. Only recently have I been able to reduce the injections to roughly once every 4-5 days without feeling worse in between injections.
It took years (if not decades) for me to get as bad as I did and thinking some loading doses followed by once every month would be enough was quite unrealistic.
Also, found out that I have chronic reactivated Epstein Barr Virus and Hashimoto's Thyroiditis which also greatly contribute to debilitating fatigue. If you haven't ruled out hidden infections and other autoimmune issues, I strongly encourage to get properly tested.
I need to often read encouraging posts as yours and others on here, If I may ask did you have neurological symptom's as well in the begining or during your first treatments any reversing out symptoms? you have recovered so nicely , that gives us new beginners hope
Neuro symptoms were most definitely worse in the beginning and I have experienced quite a bit of reversing out. It is difficult to determine how much of what remains is PA related and how much is from Hashimoto's and/or EBV. I do find that daily Curcumin supplements help greatly with the remaining neuro symptoms. Hoping you experience much improvement and soon!
thank you, I will have to look into that. I will look up the Hashimoto's as well to see what that is about. I'm so happy to hear that you do so great with your recovery, I'm only in almost 3 months of inj. eod. but I had the last 6 1/2 years of not able to find out with lots of specialist what I had wrong with all the weight loss, muscle and nerve pain and getting exausted . but at least I know now and am learning on here all I can with lots of answered prayers.
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