I started my loading doses of B12 and l was very up and down with it. Then in October l got my first 3mth injection and it floored me for 2wks after that my energy levels started coming back up. I spoke to my doctor about it and she said that maybe I should come off of B12. I got another 3mth in January and again it floored me for 2wks with tiredness but there were days that l could hardly talk or open my eyes.
should l speak to my GP again?
After the initial 2wks my energy levels are great and I feel good. Should I just grin and bare it?
Thanks for taking the time to read this and for any response.
Amanda ooops
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Ooopsy
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When l spoke to my GP in October she said that maybe we should stop the infections but once l get over the initial 2wks there is an improvement so l’m not keen to just stop the B12.
Hello Ooopsy, If you have PA, you need injections for life. They should never be stopped. I could never go three months without an injection. I need to inject everyday. So, two weeks after your 3 month injection you crash? It is not unusual for symptoms to worsen as you reverse the damage b12d causes. It seems maybe because you are, in my opinion, going way too long between injections, your body may be confused. I think you may be getting tired because you're body is drained. When you get your injection your body is relieved and thirsty for it. It wants to start healing itself, but after a very short time, your body has used all the b12 already and you probably need more so it gets tired again. I'm not a doctor, but after 2.5 years, i have come to realize i need b12 every single day. So I self inject daily. Sometimes more.
Before my injections l can tell that I need my B12. My energy levels are ok but especially this time I noticed the body pain more and the tingling and burning could be intense. With fibromyalgia l can have these symptoms too along with fatigue so l didn’t stop to think l just kept moving forward.
So in your opinion do you think that l should have the injections more frequently?
I'd agree with near every word ye wrote. . . . . . . . . seesaw or rollercoaster as I seen it should be avoided if possible. . . . . . . I dont remember where I read it but allowing yourself from one extreme to another had adverse effects
Often times we are diagnosed with fibromiasia or MS, or fatigue syndrome, when we really have b12d/pa. It sounds to me like your doctor doesn't quite have a handle on your true diagnosis. Perhaps you need a second opinion. What tests have you had? What is your diagnoses? Can you absorb b12?
Please become a member of the Pernicious Anaemia Society if you have not already and learn about the disease. Sleepybunny previously recommended Martyn Hooper’s book and Sally Pacholok’s book.
General Practitioners are just that, they have to have such a broad range of knowledge on thousands of illnesses, conditions and diseases. Be able to recognise, treat and refer. So, please do not expect them to know in depth knowledge. They have very little training in nutrition, so again that is not their fault and they have about 70,000 patients registered to them.
It is worth keeping a symptoms diary, so you monitor your own health. We all have our own unique signs and symptoms.
Like Nackapan said Iron, folate, vitamin D and other vitamin B’s all interact with Hydroxycobalamin. We need good levels of these. I can see you take a multivitamin too. Plus, more frequent injections is most likely required..
Apart from crashing in energy which is medically called fatigue, you do not mention any other symptoms like numbness, pins and needles, tinnitus, poor balance. Dr Joseph Chandy called the worsening of symptoms, the reversing out process.
The Hydroxycobalamin is repairing your Nervous System which is extremely intricate and complex. It is also repairing every single cell in your body. We have 300 trillion of them. We have 7 trillion cells in the body.
Now, lots of people think too much, we are dictated by clocks and must do this and that. Your body is not just telling you something, it is screaming at you. I need rest, so I can repair and heal. Listen to it, be kind to it, snuggle down. It needs the medication and part of the Nervous System is called Rest and Digest or the Parasympathetic Nervous System.
Many report feeling worse before better. Sensations of pain, burning, stinging, static, worsened energy levels.
Thank you for your reply l am a member of PA society. My GP put me back on iron and l take a really good multivitamin with lots of Bs, folate and Vit D. I suffer from pain, stinging and burning plus l suffer from fibromyalgia so everything is compounded and the 2wks are very bad. I will take on your suggestion about keeping a diary of symptoms. Thank you for taking the time to reply.
I just want to add that in the beginning I did feel such a tiredness at times. But for me, it was a beautiful tiredness as in totally relaxed. Not the wired tiredness before treatment. Yours does sound so extreme though, especially with talking.
Might be worth it to try another form of b12, just to cross that variable off.
I hope you get to the bottom of it soon. All the best.
I’m sorry to read about the pain, stinging and burning. Good about iron.
Fibromyalgia can be a misdiagnosis for PA/B12 deficiency. Quite a few of us have had this umbrella term diagnosis which describes wide spread pain and fatigue. Fibromyalgia can also be a misdiagnosis for other essential nutrient deficiencies and/or autoimmune diseases where the body has to deal with inflammation.
Technoid has mentioned about the Energy currency of cells and I like their theory.
Please know I am medically qualified and have gone on to obtain qualifications in biochemistry (nutrition), microbiology, the Gut-Brain Axis and I know how the NHS works. Plus, it is geared to prescribing drugs.
My profession are affectionately known as rotweillers who wear lipstick. We are extremely protective of the women, babies and dads that we care for.
Just a thought on the reversing out mentioned. Because you are having one every 3mths it might be that your symptoms worsen due to the long gap between jabs and so this process begins all over again because the good that’s done is being undone. It can be difficult getting the frequency you need that’s why many are self injecting. Dr Chandy’s book has been uploaded to b12d.org in its completeness where you can read it or just click on chapters you’d like to read. The website is a little clunky so best on a lap top or pc. I hope you continue to improve. It is so important you educate yourself. 🙂
You might need to adjust other nutrients if they are running low, or adjust injection frequency.
I have a secondary theory which is that exhaustion might occur due to depletion of something called "ATP", the energy currency of cells, as the body hurries to generate more B12 for you (adenosylcobalamin). It is only a theory of mine and I think it would be fair to call it mechanistic speculation, but if you want to test it, Creatine is a very safe supplement and you could consider trying 3g-5g a day, provided you have no kidney issues and see if it affects the onset of fatigue from injections.
I had similarly exhausting fatigue after my very first injection and from diving into the biochemistry this is my current speculation on why that might have been.
Hello Technoid, I am interested in your suggestion about a creatine supplement. The one blood test result I have that has always been below reference range is Creatine and this has always been ignored by my GP, never explained, over at least the last 5 years. Any further info. would be gratefully received or any suggested reading. Apologies to Ooopsy for jumping into your post.
Creatine is generally not measured directly but Creatinine is, usually with the aim of seeing if the kidneys are working well. Creatinine is a by-product of creatine. Highly elevated Creatinine may suggest a kidney issue. Low Creatinine may result from low body weight and low muscle mass. I have not heard of Creatine being directly tested in routine tests.
You are absolutely correct that I have mixed up Creatine and Creatinine, many apologies. Many thanks for your usual high quality comments and valuable assistance.
hello, I can only relate my experience. When I initially had injections I slept (my symptoms started to come back rapidly) so started s.i. My body quickly adjusted to frequent e.d. injections, so not sleeping .
In my opinion you may need more frequent injections.
Your exhaustion after the B12 injection is your body healing from the damage caused by the B12 deficiency, else you wouldn't have felt it. In fact, it shows that you were B12 deficient to begin with. Hence, stopping injections will be the worst thing to do. The nerve problems, what you call fibromyalgia, are just B12 deficiency symptoms. When they start returning or start becoming worse, you should know that your next B12 shot is due. I would suggest at least a monthly shot for now and even a few weekly shots in the beginning before going to monthly. More than anything else, listen to your body and take a shot when it is needing it. If the doctor won't give you, self-inject and if you are really too scared to do it, at least do orals. 1000-2000mcg cyanocobalamin has worked well for me and my wife while the methyl oral did not work as well. Good luck!
After the initial loading doses I went backwards with 3 monthly. I repeated the loading doses privately after 8 months and then had monthly. Still not enough. A year later and I took the plunge and tried EOD. I still do that. I've seen a huge improvement, take co-factors which I'm sure have helped. But it's a rocky road. Two steps forward, one step back and sometimes the other way round!!
If we get a virus, have to push the boat out (metaphorically speaking unless anyone is into sailing) such as dealing with a family situation, or attend a celebration then our bodies can go haywire.
It is non-linear and it really is about learning to live with a chronic illness. People can have a whole collection of new made up words because of brain fog. I, personally, love them and have acquired a new one to describe a feather duster. But then I do the bare minimum for housework because it is MY energy and I choose very wisely how I spend it.
Good luck in this! It can be so hard. After insufficient loading doses I was on a biweekly injection schedule and each injection would put me to bed for two days. This went on for over a year. After several years I finally was prescribed injections every 5 days and I finally feel almost like a normal person most of the time. I hope you can find what works for you and that you don’t have to struggle too long!
I recently messed up my cofactors. I wasn’t taking enough folic acid and despite B12 injections EOD, I started getting numbness and palpitations again. My MCV increased too. I went back to 5mg folic acid daily and for two weeks or so, boy was I exhausted? But now my MCV is decreasing again and I feel better.
The point of this story is that sometimes treatment is exhausting when it’s making new red blood cells and doing what it needs to do. Is there any possibility of that being what’s happening with you?
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