Hello, I'm due to start a course of loading B12 injections on Thursday and have a few questions. I'm pretty sure the nurse doing the injections won't have the answers and GP already regards me as a nuisance
Is it ok to be on HRT whilst having B12 treatment/being anaemic?
My periods stopped out of the blue 2 years ago - GP said early menopause, but could it have been B12 deficiency and might they return??
GP plans to leave me 6 months after loading doses then retest my B12. Is that right? I've tested negative for PA, but B12 has fallen despite good diet and high levels of supplements.
Should I be referred as I have unexplained B12 deficiency, plus some other anomalies in my blood tests?
What side-effects are likely from the injections? I work full time and have 2 young children to care for. I'm used to feeling rubbish, but will I be able to function? I'm also worried about acne/rashes - I'm extremely self-conscious as it is!
Thank you
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BlackInk
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Hi BlackInk I cannot answer all your medical questions but do you know whether your Folate level was tested?
I doubt very much whether the B12 will have any effect on the HRT or vice versa.
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Do you "see yourself" among any of the above people?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
You haven't listed any symptoms apart from "feeling rubbish" - do you suffer any of the above?
As for side effects - some people have slight palpitations but it is by no means certain that you will get them. A wiser person than I has written previously "The pimples/acne, is likely to be caused by microbes on your skin reacting to the additional B12 by producing substances that your skin is then reacting to them. In theory this could be resolved by use of a good skin wash. You might have better luck talking to your pharmacist and seeing what they can recommend prior to your next maintenance shot - though there is always a chance that it was something that won't recur". - again, you may not be affected.
It is not uncommon for some symptoms (if you have them) to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
I hope you will soon start to feel the benefit from the injections but if there is no improvement go back to your doctor and ask for the loading doses to be continued until there is "no further improvement" according to the N.I.C.E. guidelines.
Assumption should be that you have an absorption problem. a few are treatable. If you have acid reflux that can be due to low stomach acidity which would fit with PA, the most common cause of B12 deficiency which would mean injections every 2-3 months per UK guidelines.
Acne affects some people but is a long way from being a consequence for everyone. There is noway of saying in advance how you will respond to injections. some feel benefits quickly. for others it takes a lot longer
I recently had loading doses of B12. Like you I work full time and have two young children. I think it is wise to take it a bit easy when you have the injections at first. I did feel worse before I started to feel better. It seems this is quite common, despite several people giving me the impression that it will be a boost and work wonders immediately. I think this is the case for some, but can depend on how long you have been deficient. I had a rather busy and stressful time during my last loading doses, as a result of not resting I made myself worse.
Regarding spots. I have had lots of little ones since the injections, but the are on my hairline so not visible.
As others have said below, check your folate and iron levels. Get the guidelines for treatment to hand and demand you are treated appropriately. If you have PA then you require injections 2-3 monthly.
Your situation sounds similar to mine. I first went to the doctor suspecting I was perimenopausal, though I do still have very light periods. I am vegetarian, but I also think my diet includes enough B12 that I wouldn't expect to be deficient. No, they definitely shouldn't be stopping injections after loading doses and retesting. Injections will give you a 'high' result up to 4 months after your last one. The official guidance says that treatment should be based on symptoms, not blood tests, once you have started treatment. But most GPs for some reason don't know about this, or think they know better.
Your folate and ferritin levels may fall 'within range', but they are too low - the reference ranges are notoriously bad. To be optimal folate needs to be about 15. The ferritin range is massive - in my area the range is 11-300, but you need to try to get it to at least 80. When you start the injections the reserves you have will be rapidly used up. Another group I'm on recommends supplementing 5mg folic acid a day for as long as you are on every other day injections. That's 12 of the OTC tablets, but you can buy higher doses online. Iron is needed to raise your ferritin.
A lot of people feel worse when they start B12 - people talk about 'reversing out' through the symptoms. Personally I didn't really get this - it's just been a bit of a bumpy ride with ups and downs along the way. Although it's hard, it is really important to rest as much as you can. When you've been battling deficiency for a long time without even knowing it, you get used to just trying to push through. But to carry on doing that is likely to really slow your recovery down - I've certainly found that it's tempting on a good day to try and conquer the world and make up for all the lost time, but I have found it has set me right back. It needs a total recalibration of your judgement about when you need to stop. Exercise and stress both use up B12 and will stop your body using it for healing.
I did get really bad acne - face, back, chest. When I first came up with low B12 I was given 6 loading doses and then no more. Because I wasn't taking the cofactors the B12 didn't really seem to do much for me, and because of the acne Dr no.1 said it wasn't worth continuing, and to just take a mutivitamin. I've learned more about it since then! A year later I was on my knees with dizziness and exhaustion, and still had the acne... Dr no.2 (a locum) started me on loading doses again, and I took the cofactors. The regular doctors in the practice wouldn't prescribe injections more frequently than every 3 months, but I sourced my own supplies and have been self injecting every other day for about 6 months now, and am (mostly) feeling well now, but it has taken most of that time, and I have to be careful not to overdo it still. The locum doctor is supportive of the self injecting, and the others seem to have reluctantly accepted it.
My acne has improved beyond all imagining - I now just have a slight remnant of it on my back. I believe that continued frequent injections have been what has sorted it.
I think it is not something that has had much research, but there are theories that the acne is caused by the body finally being able to deal with the homocystine in the body, which it then excretes through the skin. This makes sense to me with what I have experienced, but I don't have the scientific knowledge to back it up. I have found that I have these tiny hard crystal type bits working out of my skin, like very fine grains of sand. On their own they're really dry. The key moment of recognition for me was when I squeezed one out (sorry I have always been a picker!) and it dropped on to a piece of paper on my lap and then I *heard* it roll down the paper. I think it is when these block the pores that it creates the acne.
Other things I have found helped a lot are - time in a steam room, which helps to sweat out the nasty stuff. Exfoliation (though I am a bit inclined to be too rough so have to hold myself back). Moisturising - I have been using extra virgin coconut oil - you only need a tiny amount and I think it has some antibacterial properties.
It is worth knowing, as you fight for appropriate treatment, that the NICE guidelines and British Haematology Soc say that if you have neurological symptoms of deficiency, you should have every other day injections until symptoms *stop* improving. Levels need to be in the 1000s consistently for healing to take place. Anecdotally that can be months or years. Look up which symptoms are classed as neuro - it's more than you might think.
I wish you well as you go forward - I hope you have a GP who will listen to the evidence.
Thank you all for your detailed replies, I really appreciate it!
clivealive - Yes, I have more than half of those symptoms and have been forward and back to the drs about them over the past two or three years. I was told menopause then they literally pushed a prescription for anti-depressants on me. Only then I asked for my blood test results and saw that my B12 has been below range and falling the whole time as well as a positive ANA results that they didn't mention to me.
Gambit62 - Do you know where you've read that low B12 can cause early menopause? I'm convinced it's related for me, but can't find any evidence online. I have all sorts of stomach issues, but IF and parietal cell tests were negative.
beginner1 - I'll arm myself with all the info, but the more I read the more the dr seems to think I'm a hypochondriac!
natcap1 - I'll try to take it easy, but as I'm sure you know it's easier said than done! I hate admitting to anyone I'm not well, so tend to trudge on regardless!
JoRR - I'll ask my dr about supplementing iron and folate first. I know he will disapprove as my results were in range. I really don't want to take matters into my own hands as I feel they'll be even less likely to take me seriously. I wonder if there's anything in the Nice guidelines about optimal levels when having B12 injections?
I'll try not to worry about unpleasant side effects and will mark up some print outs to take along with me.
quite similar as the other people told you I can confirm that there is no harm you can do to yourself except taking a needle too long or not clean ... There are no serious side effects of b 12. If you have heavy complaints due to b12 undersupply you should take a sufficient dose, dayly for 2 weeks, then perhaps every second week or so. You should just see if it helps; you cannot have a control in the clood chemistry since this all will be influenced by the supplement.
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