I have probably had b12 def since I got really ill 43 years ago, but kept taking B complex and so all testing failed to show a problem. I had my first diagnosis of macrocytosis in November, despite the B complex, maybe because I was trialling a high B1 protocol (via Elliot Overton's work). In December I got so ill that I decided to take hydroxyb12 sublinguals whilst waiting for an appointment with a haematologist. The antibody tests were both negative. I added a multivitamin and general B Complex.
I cannot tolerate B12 orally in megadoses - 1mg every other day leaves me too ill to function - weird gait, leg pain, nausea, extreme depression, shortness of breath, increased tingling, burning pains and pins and needles, weakness and exhaustion mainly. I tried HomocysteXPlus by Seeking Health and cannot tolerate that either. I was supposed to have a hydroxyb12 shot tomorrow, my first.
Last night I read that people with ME/Chronic Fatigue Syndrome, one of my many diagnoses, often cannot tolerate start up symptoms and need to go much lower dose and very slowly. This is counter to the advice to start injections and have them every other day at least 1 mg.
Have I misunderstood something? I have rescheduled the shot for next Tuesday but now not sure that I should not continue instead with the sublinguals but lower dose and more slowly. I have heaps of very concerning neurological symptoms, and cannot be sure the haematologist will treat me. The shots I can get are supposed to be 1mg weekly and "see how I go", but this doctor now specialises in something else and so I do not even get a consultation with him. I don't want to give them a try, find I cannot tolerate them and then find the doctor reluctant to allow me to continue.
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1mg of oral B12 every other day would only be scratching the surface of a serious deficiency. Its a tiny amount of B12 - only 10mcg would be absorbed via passive absorption if you have PA. Thats 5mcg a day at alternate day dosing, which is only twice the RDA for a healthy person. An injection gives you 1mg directly into the system, bypassing absorption issues.
A B-Complex will not be sufficient to treat a serious B12 deficiency. If you have 43 years of inadequately treated B12 deficiency, you will most likely need 1mg injections EOD. The symptoms you describe you describe are consistent with the bodys reponse to receiving B12 while very deficient. Increasing tingling and pins and needles is usually caused by nerve repair which reveals (and begins to repair) pre-existing damage. Do take care that other nutrients are in good supply including iron, folate etc.
I wouldnt get too caught up in an ME/CFS diagnosis until your B12 has adequately treated for some time. With a concurrent B12 deficiency ME/CFS would be very hard to identify/disentangle. Focus on properly treated B12 first. It is not uncommon to feel "worse before better", this is sometimes called early treatment decline. It will probably be steeper or last longer the more severe your deficiency is or how long its been untreated. 43 years is a long time to have an inadequately treated B12 deficiency. I would expect a significant early treatment decline but it does get better if you stick with it.
Sublinguals at less than 1mg would be very inadequate to treat B12 deficiency. But it is a good thing that you have some response to the sublinguals as it means you can absorb B12 in that way (many PA patients cannot) so they may help between injections.
I didn't think the sublinguals would be enough, but my concern is that I have had intolerable starting symptoms with the sublinguals, so how would I go with a shot? Maybe I need to have smaller shots more spaced out. I have been told I can, for example, have half a shot, but the remainder would be wasted. I was thinking that if a bad reaction would start to show itself in just 10 minutes post jab, maybe I could have half a shot, wait the 10 minutes and if coping, do the remainder of the shot. I definitely want the shots because of the neuro symptoms, but maybe I won't tolerate them yet and need to start with sublinguals and ramp up slowly. That would not be ideal, given the advanced nature of the neuro symptoms.
The less B12, and the less frequently you get it, the more likely it is that the deficiency will be inadequately treated. In the long run, that means worse pain and symptoms than going through the "reversing out" symptoms of regular adequate B12 treatment. Its not pleasant I know, I felt everything you described, but its not really avoidable and it will get better and stabilize, I found the worst symptoms like you described were at the starting few weeks/months of treatment.
Already on sublinguals the pain is much worse. At times too painful to walk or sleep, so very debilitating. Awful deep deep depression, feeling poisoned, utter exhaustion and weakness. I need to have some level of function, but I am not surprised it is tough given my age and how long I have been ill.
Do realise that a negative result for an Intrinsic Factor Antibody test , does NOT mean that you don’t have Pernicious Anaemia! This is medically acknowledged" About 50% of PA patients test negative . .
I do, but not sure how PA would then be different from other B12 malabsorption syndromes. Also not sure the haematologist will know this. I have to put together the guidelines and research in case she does not.
Maybe your issue isnt necessarily low b12 since b12 or folic can cause macrocytosis anaemia. Also have you had your thyroid levels tested? There is a link between hypothyroidism and macrocytosis anaemia
Yes I have had countless thyroid panels done over the years. I suspect my reaction to hydroxycobalamin confirms that the deficiency is B12 and not folic acid. I have also had many folic acid tests over the years, but also probably inaccurate due to my supplementing it. Can folic acid serum tests be relied on to be accurate if you have been taking it? My diet is very high in folate and as I understand it is less likely to have malabsorption problems. So much to learn, I may be wrong about lots of things, my mental status is very poor now.
Sorry to hear about your health status. I would encourage you to share your thyroid results on the thyroid forum. I was told for over a decade that my levels were normal when they weren't .
I'm not sure what the answer to your question is but I do know that high levels of folic acid can hide a b12 deficiency. I would assume that any supplements would skew the results and not show an accurate picture of what your body does on it's own.
I too have on and off macrocytosis and cant tolerate large doses of b12 and folic. My main symptom is palpitations/tachycardia, insomnia and tingling feet. What helps me a little is eating lamb liver and taking liver supplement.
Another thing to look into is your vit d. Hopefully its optimal since its helpful for overall health.
Good to know other tests, Vit D and iron, are accurate and can be relied on. So much variation from day to day with my symptoms has had me so confused for all these years, and now I hope that I will get some sort of ability to plan my days around feeling worse, but also plan to feel better on other days to keep up some kind of social life. Thank you.
Are you sure the lozenges are hydroxycobalamin? It's quite unusual, most tablets are either cyanocobalamin or methylcobalamin. Anyway, perhaps a different form would work better for you?
Definitely hydroxy, and no added nasties either. I had bad reaction to methylB12 shot years ago, so thought hydroxy safer to start with, and others here have said that is the case.
I think you’ve had lots of good advice here and I was in a similar position only months ago having been deficient for at least 20 years.
I did space out the injections because the reversing out symptoms were very painful but the good news is that after a month I felt so much better for most of the time.
I had 2 full shots B12 in weeks 1, 3 and 4 and I have been every other day self injecting since. I was also give folate, D, C, and magnesium supplements.
Be brave and move forward, learn how to self inject as you will need B12 far more regularly than a GP is probably willing to give you.
Self Injecting and obtaining supplies is not as scary or as difficult as it sounds (and that’s from a needle phobic!)
Only then will you be able to see what symptoms are B12 related, most of my symptoms have cleared apart from extreme fatigue and even that is improving.
Be realistic if you are 30 years deficient allow yourself at least a couple of years recovery period.
No, no, no!! It takes time to come to assess the situation and come to terms with what you need to do. You are doing well. Be kind to yourself (I have been told this many times!) 🤗
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