I found this information after worrying that I have lost my mind due to GP responses, on top of all of my very B12 like symptoms, Inc. Neurological. How I felt was gradual at first and more like fatigue and gastic upsets, intermittent mild tingling, over the last few years, but last year my symptoms catapulted into hell and as the more Neurological set in and i had to leave uni and work - I have not been the same since, I still feel like death. This was after 9 months of a PPI AND H2 (known to inhibit b12 absorption, and if you already sit lower, could put you in crisis mode)
I generally tend to sit lower (200 and something) over the last 5 years or so (maybe longer, I haven't checked).
My B12 last year was measured after begging a cruel GP to test me. She seemed to not care because I have a history of anxiety, and she fobbed me off, while I was tingling, losing feeling in my legs, face tingling, the works. I was distraught, which did not help with her biases and cruelty towards me - depression and anxiety can be related to B12, but are also a rational response to feeling so awful and fearing for your life.
After me taking supplements out of desperation for almost 3 weeks, she finally agreed. My result was serum.285 - AFTER supplements.
Again, I was fobbed off, no furher testing AT THE TIME.
4 months later when walking was becoming extremely hard, plus all else still there, and various GPs following her lead. I moved to a new practise, they tested me and after using a high dose oral spray supplement (again out of desperation) my active b12 came back on the higher side of normal...
I was distraught. I wondered given all of my symptoms and the timing of the explosion of neurological symptoms post PPI and H2, that I had now ruined my chances of getting the result I needed due to me using supplements.
It tooke ages to find that information about - active b12 and supplements.
My b12 may be circulation but not at cellular, or my b12 may be higher now but I have not had the proper intense treatment AT THE TIME, meaning injections, due to neurological symptoms, and oral/sublingual has not been enough to resolve this... these were potential theories of mine.
I have not tested positive for autoimmune, which may mean that I do not have an autoimmune disorder.
And my MMA is not quite high, but again, supplements and possible/question of circulation, but not treating the hard-core probable deficiency- at the time - may be important here. My anemia Dr that I saw recently believes MMA to be unreliable in his experience and has seen people with normal MMA respond well to b12 treatment, so again, I am confused.
Active b12 - he said your active b12 will likely have been affected by supplements. Serum and active both are. The important thing is treating the b12 deficiency (explosion) of last September now - 6 months later, as my body will not have caught up with proper treatment...
I was floored.
I am now self injecting, and my symptoms feel worse during loading doses, but I have read that this can happen to people...?
I now found a paper from NICE - describing that serum and active b12 are affected by supplements, and may skew results or not show that a person has been dealing with symptoms from b12 deficiency...
I hope this helps ANYONE feeling as confused and crap as me.
I am praying that I show improvement over the next 3 months, until my follow up with him. He seems very knowledgeable, and this is definitely worth a shot - as my suspicions are the time we're through the roof, but I never got help with it back then due to previous GP ignorance.
I will never take a PPI/H2 ever again. And, I will try to practise better self care and nutrition in future too for my stress levels, and how I was not eating as well while studying. I will also keep a close eye on my ferritin as he treated that too with an infusion (also iron flu is NO joke, but I have turned the corner finally), and my folate, plus my vitamin D which is insufficient. (He has me taking folate, I've had iron infusion, and vitamin d3 with k2)
I have been taught to self inject at home and I am injecting every other day until I see improvement before making wider gaps between my days.
Sending solidarity with everyone on here.
💛 Sunny x
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Suffering_sunny
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It got a bit lost in the woodwork but there is a pinned post on the forum from the Pernicious Anemia Society admin, posted 8 years ago.
It's titled : "Please read this before using the forum".
"Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test. "
I recommend that any new members have a look through the pinned posts as there is plenty of good information stored there. It probably needs more regular advertising to draw attention.
My new Dr luckily sees the value in looking at the full picture and knows that it is imperative to treat because not treating could destroy my body, and based on generally sitting low (two hundred and something a few times over the years), and massive symptoms after a course of PPI, H2, and antacids (at the same time! As given by my previous horrible cruel Dr). He said that not checking further at that time and writing it off as anxiety and not checking when it was crucial to do so, after a course or PPI & H2, and I had asked - could be seen as a clear case of medical gaslighting. I was in tears hearing my fears be listened to and validated.
Treatment is overwhelming and I feel awful just now, but I know that if I don't get help, this could paralyse, or even kill people. So not treating/trying is more scary.
This information is so helpful, keeping the faith and persisting even when symptoms initially get worse and I feel so unwell.
Thank you, I appreciate each and every one of you 🙏🏼🌼
Really sorry to hear about what you have gone through . We hear quite often on this forum that people feel worse when they start injecting B 12 after a long period of B12 deficiency. It’s actually acquired a name now “ Reversing out “ ! In actual fact it’s a good sign Your body is reacting to the B12 and waking up . You must keep injecting.
So don’t get put off for goodness sake . Also definitely take a folic acid tablet daily -say 400 mcg like is taken in pregnancy . It works together with B 12 . Eat healthily and look after your “ gut” . Say a little Kefir every morning or natural yoghurt .
It sounds like your now seeing someone who actually understands. I can relate to the feeling of going to die I felt the same. It's like living in hell with nowhere to turn, looking back it was very frightening.
Remember some feel worse before better I know I did. The important thing is to keep those injections going in. It's been a horrid journey but hopefully some if not all of those wretched symptoms will improve.
Thank you for sharing, it is intimidating that you can feel worse or existing symptoms feel even worse before better. Keeping the faith and trying to cope with these symptoms is hard.
I appreciate all of you on here who have taken the time to share your experiences, it is getting me through this 🌺🙏🏼
Hi Suffering _sunny, I'm so sad and angry to hear how you were treated by a previous gp, but very glad you've now found an understanding one. Below is an edited version of a reply I recently sent to another group member:-So many of us feel unwell during the loading dose process. After dose 5 I told my husband to be ready to call 999 during the night as I really felt so terrible I thought I was going to die. Still here though! I postponed dose 6 for a week, during which time the internal buzzing and nerve tingles came back. That showed me the injections were doing something positive, and at the same time I found this forum which reassured me it was a 'normal' reaction. Thankfully I never felt as ill again, although most days bring a varied selection of interesting symotoms - some of which i never even had before B12 injections!
Most nurses and doctors of course know nothing about the 'reversing out' phenomenon and their only response is that we should stop, instead of guiding us to rest, check co-factors, and be very patient... 2 steps forward, 1 step back.
Have faith that things will settle and improve, good luck x
Yes, my symptoms ramped up and oddly at jab 5 I felt similar!
But jab 6 the symptoms are still kicking off, but maybe less so... so I am hopeful that the next 3 months will be rocky, but I will get there and be better off for it 🙏🏼🌺
My new Dr said that it is common to feel worse before better and that seeing a difference can take months for some people.
Shocking the amount of GPs who have no idea about any of this.
I am incredibly lucky to have found a new Dr who is knowledgeable. The thought of anyone being left like I had been before him makes me cry.
Thank you for sharing your experiences, I know it is very hard ❤️❤️
"new Dr said that it is common to feel worse before better and that seeing a difference can take months "
I was left untreated for years so was in a bad way when I finally started to treat myself.
It took weeks even months to see improvements but eventually many symptoms disappeared and others improved. I'm so pleased I persevered. My life after treatment started was so much better than before.
I improved for at least 8 years running after treatment started.
I wonder how long I have been going through this in total, as I sit lower naturally, but the meds dragged me too far under. It gives me strength to know that the road can be long, and I should persist.
I am so pleased to hear of the differences and healing that have happened for you after treatment 💕 wishing you nothing but the very best 🌺🌺
I question the parameters set by the NHS, and how it's made to work for 'most people' but I ask myslef if this is about expense too and ignores those who are having their health in absolute danger due to this, I question GP/Dr lack of knowledge, testing, and inability to judge/listen about tests when people have taken oral supplements...
I also question if the parameters are safe in this country and elsewhere (i had also read about UK, especially northern and scandanavian root places being more vulnerable to b12 issues - which not enough attention is given to in the UK), also if these tests are too rough for people, the lack of symptomolgoy understanding, I wonder how many other things have been diagnosed as other things and people have been left in agony- when I was b12 the whole time!, it even has me looking at my own family and wondering if how past members passed could have been linked to b12 (I'll never know, though if this treatment I am getting helps - I will have strong suspicion - even about my own father), I also ask myself about women and men's physiology and if the parameters are correct as past testing was all done on only white male bodies (though I of course understand that men are being ignored and failed too! As parameters are too crude for everyone), this also had me feeling a lot of concern for minoritised groups.
My new Dr said Europe says ~300, Japan says ~400 or 500, the UKs levels are not appropriate, and he sees people fall below the UK lines and come to him unable to walk anymore. With their partners carrying them up stairs etc. If anyone goes to him under 300 he will treat, but also he takes into account use of supplements, and how this has affected/ruined testing, he literally says symptomology is absolutely key, and that not treating can have dyre consequences.
I wonder if I require more too, or maybe not, I'll treat and find out. I had been put on SSRIs for years, wondering why I feel so tired and sad, and now I ask myself if there may have been other things going on but my GPs have failed me time and time again.
"I wonder if I require more too, or maybe not, I'll treat and find out"
Might be worth keeping a daily or weekly symptoms diary. Track up to ten symptoms (more if you have the energy), score severity, note amount and date of any treatment, note date/results of any relevant blood tests.
There may not be obvious improvement if you compare day to day or week to week but try comparing month to month or even year to year.
A symptoms diary could be useful evidence of improvement or deterioration in symptoms to show doctors.
hello Suffering sunny, you have had a simply awful experience and I fully understand and sympathize. Now, you have found a doctor that actually listens.
I had to start s.i. to get the treatment I needed.
NHS, for financial reasons the total blood serum test range is set low; gps should take into account clinical symptoms, most do not. The 3 months maintenance dose that most gps and nurses insist on has no clinical basis. Mainly, the treatment for neurological symptoms is not followed.
Blood tests by gps once you are injecting is useless/not recommend as your blood will be flooded with B12.
Whether you need more B12 injections is dependent upon your symptoms. I had my last loading injection on late Friday, my diary notes 3 symptoms back by the Monday. So s.i. daily was right for me.
A month or so in I experienced a time when I felt really awful, black pit awful but I kept injecting till I came through it. It felt that my brain was systematically moving through my body assessing damage. Now 10 months later I have made real progress, but I do not take this for granted I keep injecting.
Research says below 500 the brain shrinks and 400 is a deficiency state. Active B12 tests should be 70 or over.
The issue, for me, was my serum was low but not right below the line in September, after almost 3wks of supplements 🤦♀️. Begging my GP was futile and she was literally smirking at me as I cried.
I had no help, took more supplements and then my active was 'med/high' in January, again this could be use of supplements.
Supplements definitely affect serum, active (link in original post), and it can also affect mma and Homocysteine (another user showed me this info on this thread).
My new Dr understands this, but my previous ones didn't listen as I was falling apart, and felt/feel like I am dying.
Over the years my b12 has been in the 2 hundred and somethings multiple times, I had no idea that it sat low and what this meant, I also feel it was utterly irresponsible of my previous GP to not only write me off as 'anxious' and leave me to rot, but to also prescribe a PPI, an H2, and antacids (at the same time!) Knowing my tendency to sit low. My ferritin is also at about iron deficiency line, so this has been treated too with an infusion 2 wks ago.
I am 6 jabs into loading doses... my symptoms are currently worse (a lot of tingling and feeling of malaise, etc, everything I have felt before but turned up), though jab number 6 was possibly slightly less awful, but I am told this flaring and getting worse happens often, and after however many months some folk can make a full recovery. For neuro symptoms he said it would be at least 3 months, but can take up to a year to feel better.
All of this because of my previous GPs negligence, and lack of listening when I cried and spoke about, even showed, the bottles of supplements I had been using. While body tingles, shocks, aches, and has numb feelings, etc, etc - I swear I genuinely feel that one particular GP shouldn't be in healthcare.
It is so hard for all of us to persevere when it makes folk feel even worse. It is scary, though I am hopeful 🙏🏼🙏🏼🙏🏼
Glad to hear you are making real progress now ❤️ ❤️
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