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Pernicious Anaemia Society
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B12 Injection cant come soon enough

Hi, two days off my jab (every 28 days) and for the last week my symptoms have come back, although not as bad as in the past. But last night I could not sleep, terrible sweating and my pulse rate was raised so much I could feel it pounding in my head so much that I couldn't lie on my side. Is this a normal symptom as if so I am going to start thinking about SI as I don't want the last week of every month to be this bad!.

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That sounds like my night.

I'm presently on every other day b12 hydroxocobalamin injections s until no more improvements. As the weekend 3 days. Like you I had to lay on my back. Not usual. Also pounding heart which is quite new to me and usually only after climbing stairs. Sweats also. I think you are right that you need them closer. I'm hoping this more healing and will settle. I had my best day Saturday since September so disheartening.

Hope you have a better day

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I have ordered some online from Germany so I can have them ready. Will speak to the GP this week and take some advice on their thoughts...

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Has your German supplier agreed to ship to the U.K. now?

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I have had the confirmation through so hopefully they will turn up in the next week or so. I am due my jab on Wednesday at the docs anyway so not in a rush for them to arrive, just want to get them in just in case. Its not about cost, just knowing I have them will give me some relief! Will let you know if they dont arrive as its the first time I have ordered them.

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Not sure what needles to order though!!! Too many opinions and confusing

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Sorry I cannot help you there. I suggest you ask that question on a new thread which will be "seen" by those who do self inject if they bare not following this post.

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Hi Ukb12. Re the needles, I order mine from Medisave. I use the Agani 23g to draw the b12 from the ampoules. It’s got a blue tip. I use the Agani 25g needle for injection. It is 1 inch long and has an orange tip. You’ll need a 2mg syringe and alcohol wipes. Let me know if you need any more info. Best wishes.

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very simple answer! THE TINIEST needle! take it from me - I tried to self inject this summer, did not go well at all, and thank God I had the very small diabetic needles because instead of the needle going into my leg I stabbed myself all the way through my finger! I had a friend over to give me moral support and she nearly fell on floor laughing! The good news was for a few moments I didn't realize that I had pierced my finger as I did not feel anything, I just saw blood dripping everywhere and saw the needle sticking all the way through. Alot of screaming and jumping around ensued, and I have not been ready to try since then. You really have to have a sense of humor with this whole B12 thing! Good luck getting your supplies!

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Had confirmation that the B12 has been shipped....ordered from versandapo.de

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That's good to know - thank you.

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Hi

Yes, I would frequently get a whooshing sensation each side of my head, especially when tired; and, in bed, sweating. I suffered other B12-related symptoms, too. These included one you don't hear about: development of a strange bitter-sweet odour in my urine, and in the bedroom - certainly due to a metabolic malfunction and, possibly, arising from the excretion of MMA. When finally measured, my B12 level was in the low 60s. Shortly before I received my first injection (about three weeks later after a confirmatory blood test) I had entered a curiously relaxed state of insomnia and inertia.

The inadequacy of the regulation dose rate for B12 injections drove me to supplement with methylcobalamin injections. (You should be really confident of the integrity of your supply.) A rate of 1mg on alternate days did the trick. Subsequently, I have been provided with hydrocobalamin - but, for me, alternate days of this I found less effective, necessitating a daily dose (self-injected) to avoid regression.

I assume that you have been diagnose with PA, and would suggest that you document your returning symptoms and speak again with your GP about increasing the frequency of injection. It may be that he/she would refer you to a haematologist , who might support prescription above the usual rate, to meet your needs. It has to be about the individual's symptoms, rather than norms - and certainly not at all about the high B12 levels resulting when you have begun treatment.

But unfortunately, not all consultant haematologist are understanding of the condition and its needs.

Keep at it.

Best wishes

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I have been diagnosed with B12 deficiency...rather than PA...or is it the same thing???

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P.A. is just one of the causes of B12 deficiency . treatment of which is virtually the same except that some causes of a deficiency can be "cured" or remedied whereas P.A. cannot be.

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PA is one possible cause of a B12 deficiency. The problem is that PA is quite difficult to diagnose. There is a test (looking for antibodies to Intrinsic Factor) But the test only give a positive result in 50% of people with PA.

It can be diagnosed by exclusion. If there’s no other reasonable cause of the deficiency (if you’re not vegetarian or vegan, you don’t take PPIs or metformin, you don’t abuse nitrous oxide, you haven’t had gut surgery, you don’t have coeliacs or Crohn’s disease) then you prob sly have PA.

A gastroscopy can also diagnose it. Pernicious Anaemia is caused by an autoimmune attack on the stomach. This can cause Autoimmune Metaplastic Gastric Atrophy (AMGA). The atrophy will be in certain areas of the stomach, and show up when they stick the camera in your stomach and the biopsy samples will show the metaplasia.

AMGA and low B12 was enough to persuade my idiot haematologist that I had PA.

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I think more investigation is required then....

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If you don't fit in with any of the other causes, and you're not being denied treatment because you don't have actual PA, then I wouldn't bother. The treatment should be the same either way.

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Thanks for the info, everyday i learn something new.

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Your post is making me laugh so hard! Thank you! the phrase "my idiot haematologist" is priceless! I use it all the time to refer to every single doctor, neurologist etc. that I have encountered on this journey. I'll tell you about idiots - the naturopath I went to had never heard of a loading dose (beginning to wonder if they'd ever heard of B12) or the concept that if they actually used their eyes to look at the patient this could help them determine the urgency and how often to give the injections. By the time I went to said naturopath I could not walk on my own, had to have a friend half carry me in (hint - this is a clue) , and was so sick and having balance issues I couldn't even sit up during the appointment (another clue) ---- do you think they grabbed a clue???? Of course not, they didn't even give my 1st injection for several weeks and then I was given injections once every 7 days for a months until I read Mr. Hooper's B12 book and found out (I was soooooo mad) I should have been given an injection a day for about 2 weeks. And then after 6 months of bungled injections and totally insane B12 advice, I find out i have neuropathy . . . and on and on. Oh well thanks again for the laugh and for letting me vent!

Good luck!

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Here is a real naturopath talking about naturopathy - naturopathicdiaries.com

My rule is to never place my health in the hands of anybody whose title ends in -opath, be it naturo-, homeo- or psycho-.

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Oh my --- wise words indeed! Unfortunately I had to, in the end, go to the naturopath because after several years of pretty much begging doctors to help me I realized they were not going to, so in desperation I went to naturopath to try one last blood test. I will be screwing my courage to the something or other (can't remember the quote, think it's Shakespere?) and learning to give myself the injections. I Have sadly realized over past year that I must only use naturopaths for their strong point which is injections and they will do lab tests that doctors don't think are necessary (like B12 levels) - and leave it at that.

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I live in the US and inject every 14 days or my fatigue and foggy headedness and lack of motivation comes back. The shots give me energy but the downside is I don't sleep. I sleep like every other night and it's broken sleep. I think it's a side effect. Maybe now that thr b 12 has built up in your body, you need to lower the dose or inject less frequently? Try doing so. If your symptoms come back, then go back to every 28 days. But your side effects don't sound too positive. Not an "overdose" but I think it's stressing out you're body maybe. Much love to you and keep us posted. 💙❤💜😀😀

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Let me ask you dianewilson1900, do you have PA (pernicious anemia)? Do you have IBS or IBD, crohns, ulcerative colitis, etc?

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Yes, I have a laundry list of problems: Non Celiac gluten sensitivity, IBS, Candida, diabetes, low thyroid, gastritis, diverticulosis, diabetes related kidney disease and I take Metformin and a PPI. I also have problems with all kinds of milk and soy. Metformin and Pantaprazole (PPI) alone affect my ability to absorb B 12 and other nutrients. I had the paretiel cell test done and it turned out fine, and my MMA was normal, only 95. However, I have been asking my doctor to give me a homocysteine and intrinsic factor test but he won't budge. I have a long history of nutritional defiencies. I have had iron deficiency anemia, My B 12 was low last spring (119) and my iron was low back in November. I highly suspect I have low stomach acid 90% probability. have to take 1000 mcg injections every two weeks or my symptoms come back like clockwork. Where my doctor is confirmed, I dont need a test to "prove" I have malabsorption issues. I KNOW I have malabsorption issues! My last B 12 level was 894 (November 2018) but my body doesn't UTILIZE the B 12 properly at the tissue and cellular level. That, or my body is using up more B 12 than it can replenish..btw this is US estimates. It actually took a couple of months for the injections to work. Sometimes one injection would be GREAT for two weeks where I would have a lot of energy and be able to think clearly, then the next few injections, nothing. They say it takes time to work and you will notice some low B 12 symptoms clearing up while others dissaper. Then some will resurface again, on and off, on and off the first few months your on them. Your symptoms actually get WORSE before they improve. People on this and PA facebook groups I belong to have all mentioned this to me. Now my injections are working much better. So expect a mixed bag the first several months you are on them. You have to find how often you need to inject, what dose and what works for you. It takes time.

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Hi - you just might need the injections more frequently - I know I do. I am getting them every other day to heal neuropathy issues and find it difficult some weeks to get through the two days on the weekend. I am also healing several nutritional deficiencies at the same time, and just discovered a growth of mold in my back room. Great - I just read an article online that mentioned that if you have the bad mold in home it could make it hard to absorb nutrients. Well good luck to you, this is a complex business.

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Thanks for the advice. Maybe I do need them more frequently. I never thought of that. Or maybe I should try 500 ML once a week instead of 1000 ML every other week because that 1000 ML is a big drop off when it wears off. Maybe it's bringing me up too high, then I crash. Or you could be right. Maybe I need it more frequently. My low B 12 symptoms have improved otherwise. Its when the shot wears off I have problems. In immediately fine after I inject. Fatigue and not being able to think clearly are the only two symptoms. Thanks. 💜💙💕❤

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When I start to have trouble sleeping I find upping my intake of potassium and magnesium helps. I eat bananas and drink watermelon water for potassium and take a magnesium supplement before bedtime.

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Something similar happened to me but I don't think necessarily you need increased doses. My burning feet came back fairly bad, and dizziness too. Also, am not having "sweats" in the literal sense, but rather some unpleasant goosebumps that I did not have before the shots. Also, a lot of intestinal spasm that were never there before. I don't know if this is part of the recovery or if I'm still getting worse, but I believe its part of the recovery and my body and brain still not adapted to these dormant neuron firing up for the first time in years.

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m7m2018 / ukb12...

If symptoms of B12d deficiency return before the next jab is due, abate when you have that jab, then reoccur before the next one, thus forming a recurring/remitting pattern, this is a sure indicator that more frequent B12 injections are required.

Ukb12...if you always experience a re-emergence of symptoms in the week leading up to your next injection, sounds like more frequent injections may help.

Good luck 👍

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Hi. I live in the US and have been with this site for awhile. I also belong to a UK based PA/low B 12 facebook group. I've been told many times from both sites that it's common for symptoms to get worse before they get better. Its your body's way of readjusting and restoring the new B 12 levels. Think of it like tuning in a radio for the first time. Your turnig the dial and hear static. As time goes on and your body adjusts, it will find the right frequency range and you'll hear music and people talking over the air come in a lot clearer. Have you been checked for diabetes btw? I have that and burning feet is neurapothy related and dizziness low blood sugar. But these thing can certainly occur with low B 12 as well. It did with me. It took several months of injecting B 12 1000 ML before I noticed a difference where the benefits were clear and consistent. Expect some symptoms to clear up sooner than others, and others to stick around a little longer. Then they may come back for awhile, then go away. As time goes on, eventually you should notice the full benefit once you know what works for you dose wise and how often you need to inject. Not all people need injections once a week, or twice a week, etc. Its highly individualistic to the persons health needs, medicines their taking, health problems, etc. See what works for you and hang in there

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I didn't get the burning feet (by the way - yuck) but as soon as I began injections every other day for my neuropathy in feet and legs - oh boy the pain and tingling. Luckily somebody on this forum had posted that making sure to get more potassium helps with the pain. I also have good results using magnesium oil. I feel like my apartment is turning into a science lab! My dizziness and wobbly walking came back in last couple weeks - first time since beginning shots :( But, I am thinking it is a side effect of the anti-biotic I am on. Hope so.

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Apartment turning into a science lab? That's hilarious! I actually collect screenshots on my phone of medical advice regarding B 12 and stufd" and THATS about to turn into science book. No human on the planet has this off quirk but me I bet. Love your comment btw...💙💙💜❤

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Hi diane - not only is my place a science lab (I really wish I had studied chemistry or biology) I tried to give self a B12 injection couple months ago and missed my thigh but instead stabbed myself in my finger :) I think I'm going to start a youtube thingy to record all the crazy things happening to me! Cheers!

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