Hi all,I'm a long time lurker, but haven't posted myself in a while.
About 8 years ago, I was fighting to save my right leg due to bone tumors. 12 surgeries later, I lost that fight. During that time, I started losing weight, tons of anxiety, palpitations ect...This would all be normal reaction to this kind of stress of losing a limb, but I knew something else was wrong.
I finally got a prosthetic leg, learned to walk again, but I kept getting worse. More weightloss(I was then down to 85 pounds) but worse than that, I couldn't think straight, remember small words and had developed agoraphobia. Anxiety was thru the roof.
Finally, my local oncologist thought to run a b12 test. It was 90. I was referred back to my primary who ran further tests. MMTHFR(gene mutation) and intrinsic factor. MMTHFR showed a gene mutation from both my parents but the intrinsic factor clinched a PA diagnosis. Instrinic factor range was 0.0- 0.1. Mine was 98.00. They started me on loading doses for a week and then taught me how to self inject at home. Almost right away, I was feeling better. My primary tried to pull my b12 to once a month, but my oncologist threw a fit and called my primary. She said I need 3 jabs a week for life. So, they complied. For the past 5 years, I've gotten 13 viles a month. I had never felt better. I was up to 120 pounds, not one palpitation, could think straight, very little anxiety ect...
As of January of this year, my insurance decided I only need one jab per week. Since then, it has been a battle. I have always felt badly for those here fighting to get the right amount of jabs and now, same here. I decided that I would order from Canada. I have before and worked great. I'm waiting to get a new written prescription so I can order it. It has been one crazy thing after the other trying to get this tho.
So, I went from 13 viles a month to 4 viles a month. What the hell did they think would happen to my system dropping it like that. I should get the perscipton next week, but man am I going thru it!
My symptoms are back in full swing. I was building weight and now I'm back down again. As of last week, I weighed 109 pounds, can't remember words, palpitations and my anxiety is crazy bad. I need to run errands, but just thinking of going, causes me even more stress. I know I'll get back on track soon, but man, it's horrible.
Docs have been telling me that my b12 levels are always running high. I tell them so what?!?+ if it works for me, why is this a problem?
Which opens up a discussion about the amount of b12 healthy for ppl. I mean, I believe each person is different. 4 jabs a month might work perfectly for some. I guess my argument would be shouldn't it be an individual thing?
I could maybe agree that I might be able to be fine with say 2 jabs a week. I mean, it's not that I enjoy sticking a needle into my thigh so often, but shouldn't they at least step down the doses gradually???
Any input on this would be helpful.
Thanks guys💙
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Wowo23
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Thank you for responding. Right?!?! I mean don't they know testing after treatment has started is such a waste of time and does nothing but confuse medical staff
"Which opens up a discussion about the amount of b12 healthy for ppl. I mean, I believe each person is different."
It's an interesting question. For the average healthy person about 1mcg of B12 every day seems to be the absolute minimum biologic requirement. From this, an RDA of 2.5mcg gives a bit of a cushion. However, I have seen some studies showing that it is only at 7-8 mcg per day that no anomalies are seen. We know in PA that the 5mcg of B12 that is normally recovered from bile will not be recovered due to lack of intrinsic factor. So this puts the PA B12 requirement at at least 13mcg.
However, this doesn't correlate very well with the experiences of many with PA who self-inject much higher amounts than this and at high frequencies and find that lower amounts/frequencies are not adequate to control symptoms.
I have read some papers which claim that in those injecting high dose B12, there is LESS physiologically active cobalamin, than in those not injecting high dose B12. However, I was unable to verify this data, so I think it remains quite speculative. Antibodies to cobalamin have also been reported in some studies of high dose treatment, but the antibodies did not seem to impair B12 function, an area which I think again, needs more research.
I have never located any research explaining the reasoning or logic (if they exist) of the timing or dose levels of B12 treatments for PA patients. As such, given the lack of good research and the demonstrated safety of high dose B12 treatments, it seems to remain a matter of personal choice to find the dose and treatment frequency that suits best.
Demanding a lowered frequency of treatment, despite the lack of good evidence of safety of dropping frequency of treatment in PA patients, seems merely a cost-saving measure and is likely not based on any good scientific/clinical evidence. If some can be provided I am happy to learn and correct myself but I highly doubt this is about anything other than saving money.
But the money saved must be very little . We know what a B12 injection costs when we buy B12 ampoules from Germany . Like wise needles and syringes . And surely the NHS can get all that much cheaper than we can , as they buy in huge quantities . Yes , then comes the cost of a nurse for 7-8 minutes . I do not know what that must cost .
Compared to the cost of many drugs , it cannot be a huge saving . Then, the under-treated patient begins to feel unwell and needs a doctors appointment . There’s a cost to that . Undertreatment is likely to lead to vulnerability and other illnesses .
It's utterly pointless to measure serum B12, either active, or total, once injections have started. All that's doing is testing what's actually in the vial used for injections, and it says what's in it on the vial.
Your IFAb level is a great help, as it's not arguable that it could be wrong. You have PA, or whatever we're calling it now, and as such, B12 injections are the answer. Everyone's requirement for B12 differs. Some folks manage on infrequent doses, and some clearly need more.
If you're happy with self-injection, then 'stick' with it. Megadose oral B12 can help some, but not all folks.
You might be a continent away, but your experience there is much the same as ours here.
In my experience, the body gets used to a certain level of supplementation, so dropping the frequency drastically leads to problems. If they had gradually reduced the frequency, you may not have felt as bad. In any case, since you are already reduced in frequency, may be you can do twice-a-week now and it will also probably work fine. Dropping to once-a-week from thrice-a-week will take some time for the body to adjust to the lower dose....
Goodness you've really been through the mill, I salute your spirit and determination Wowo23. Your experience with B12 mirrors so many on here the UK forum - never ceases to amaze me the sheer incompetence and lack of knowledge about the B12 condition, less alone how mismanagement can and does lead to a multitude of health problems that must cost our NHS (and your insurers), etc, millions of pounds and time. Like many on here, we've had to stand our ground and fight our corner and in many, many cases resort to joining 'the row your own boat' club and SI for our health (and sanity!). Wishing you well, and know that you are in a safe space on our forum any time. 👍😍
Yes, I remember you. Sorry to hear you are having a hard time of it lately - and needlessly.
After being totally unresponsive to the "usual" NHS treatment regime after B12 deficiency was found, my GP had my serum MMA tested and serum B12 retested - for good reasons. She suspected that I had functional B12 deficiency. Sure enough, my MMA was raised and the testing lab confirmed her diagnosis. She'd also had the foresight to eliminate renal problems as a possible cause previously. I was restarted on what should have been 3 injections a week, the nearest most surgeries can get to every other day treatment. I actually got 2 a week as nurses were too busy (!) Never mind, it still started gradually working for me. Everyone noticed these improvements, even some of the nurses.
When I had a "blip", and returned to the GP, she decided that I had gone beyond primary care, and sent me to various consultants. Sadly, she also dropped my injections to the agreed maintenance dose of 1 a month. Sadder still, a locum haematologist told my GP not to give me more than 1 injection every 2 months, halving an already inadequate maintenance frequency.
I started self injecting, awarding myself the luxury, since not too busy, of every other day injections. Just to see. A little over two years later, I was able to drop this to two injections a week. I am unable to drop this any further. This works most of the time for me, unless very ill (Covid for instance) or very stressed - both situations requiring more frequent injections temporarily.
This is no miracle cure, just what I need to manage my symptoms. Any less and they return noticeably. Those closest know the signs. Just as my angular cheilitis returns within days if I stop using nipple cream twice a day (yes, I did say nipple cream), so my other B12 symptoms return rapidly without the injections.
By the way, 2 injections a week is the amount advised by metabolics consultants if a study of a patient's DNA shows a genetic malfunction in the system. They told me that, dishearteningly, patients return to them in a much deteriorated state when GPs have chosen not to follow their treatment advice.
No doubt my B12 level is always above 2000 ng/L now and has been for years, but I still remember with a shudder what it felt like when it was below 200 ng/L . How you functioned at all at 90, I just can't imagine.
When I told my GP that I was self-injecting every other day, she stopped testing my B12 but regularly monitored my folate, ferritin, vitamin D and thyroid etc. These took a couple of years to stabilise at useful levels and can still be a problem. The B12 testing ? "Pointless" .
Her words not mine.
You could find out what your MMA is doing, but you shouldn't have to. The B12 experiment has already been carried out and the result is in : you need 3 injections a week to control your symptoms. Yes, you might be able to cope with 2 a week, but only do what feels right to you.
I live in BC, Canada. Cyanocobalamin is available over the counter here. It only costs in the range of $6 for 10 doses, $13 with needles included. At $1.30 per dose, why use insurance to pay for it? It's a lot less than getting a cup of coffee.
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