I have been trying to raise my B12 levels for a number of years (since i was diagnosed hypothyroid and advised B12 levels needed to be higher). I have been taking supplements since April 2022 (although slightly erratic as i sometimes forget) but my B12 levels have not significantly increased , see results below.
My main symptoms are brain fog, anxiety and my arms and legs often go numb at night. My thyroid levels are now under control but these symptoms have not improved. I have previously completed the B12 symptom checklist (score of 40) and sent to the GP but he did not consider injections.
I would like some advise please:
- Would you consider these levels deficient in B12
- is it worth me upping the supplements or should i be trying to persuade the GP to give me injections. If so any suggestions how?
B12 results:
27/9/21 - active B12 66pmol/l (25.1 - 165)
4/10/21 - 313ng/l (180-640)
18/2/22 - 358ng/l (180-640)
5/4/22 - 267ng/l
18/11/22 - active B12 - 125pmol/l (37.5 - 188)
12/9/23 - 371ng/l (180-640)
Homocysteine CV risk
5/4/22 - 14.4umol/l (0-15)
Methylmalonic acid
5/4/22 - 214nmol/l (0-280)
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Threes
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Is your Homocysteine still at that high level ? If so , needs investigation. Can be cause bylack of B12 but also has other reasons
. Even if B12 is at normal levels , it may not be getting into the cells where it is needed . It’s then called functional B12 deficiency , and you need injections .to get rid of your symptoms .,
If yourGP will not do this , you shoujd consider self injecting. That’s what we all do on this forum . I ts easy and cheap.
You can get injections at some beauty clinics . Or try a private GP for your first injection . in case of an anaphylactic reaction to a first injection ( very rare)
B12 has a huge range but people tend to sit at a particular point in that range.. If someone has an absorption problem then levels start to drop. The serum B12 test is only accurate to about 20% and to be honest the results above do seem to be bouncing around this level, meaning that there is no evidence of an absorption problem. - and it looks as if slightly over 300 is where you normally sit on the scale.
If you have a B12 result from before you started supplementing that was significantly higher than the results below that would indicate that you have an absorption problem and the supplementation has masked it.
I am not aware of any reason why being hypothyroid means you need to maintain higher levels of B12 and the reality is that if 310 is your normal level using supplements to change it is going to be very difficult. I know there is a lot of chatter on the TUK forum about needing levels of 1000 but nobody has ever been able to provide a reason for that. I suspect it comes from a recommendation that people who are being treated for B12 absorption problems maintain levels abour 1000, but that's just a guess.
People with thyroid problems often develop issues with B12 absorption - many possible reasons for this - including slow gut transit and, in the case of auto-immunity - the development of other auto-immune conditions.
It is also true that the symptoms of PA have a huge overlap with other conditions - including hypothyroidism..
I am not saying that B12 isn't an issue, just explaining that the test results don't point to B12 as an issue.
Thank you for your response, I expected my results to increase more than they did when I started supplements which made me wonder if I had an absorption issue. Are you saying that no matter how much you supplement levels will only rise to level that is needed (I.e. your normal level). I was not meaning that people with hypothyroidism needed higher levels just that i had been advised that my levels were low and needed to be higher. Are you saying these levels would not be considered low? As you say there is a big overlap in symptoms with PA and hypothyroidism. I think I have the thyroid levels under control now and hence looking for solution to brain frog etc. Maybe I am just getting old!
I was mainly trying to explain that the results aren't conclusive and the fact that they are steady implies that there isn't an absorption issue going on.
The amount of B12 that can be absorbed in the stomach is quite limited. The aim of high dose supplements is to use a process called passive absorption - which happens outside the gut. Whilst this averages at 1% of the the dose taken it is very variable and doesn't seem to work in about 30-40% of people based on studies of the use of passive absorption in cases of B12 absorption issues.
Basically that means that the fact that your levels aren't increasing using high dose B12 is inconclusive for an absorption problem.
The test results are in the normal range and the lack of variability implies that B12 absorption isn't an issue.
The protocols for treating B12 deficiency do put a heavy emphasis on symptoms (because its more or less impossible to diagnose deficiency based purely on blood tests). The issue with symptoms though is the overlap with other conditions.
Please note that this forum isn't a substitute for professional medical advice - the best I can actually do is just explain why it is difficult to see that B12 is a likely candidate for your current symptoms.
Hi ThreesSorry yre experiencing such symptoms. My experiences don't fit with the ranges the NHS provide, so I'll share with you & hope it can be of help.
When serum b12 500, felt v.unwell, extreme fatigue, recurrent inf, balance issues, migraines,to name few. Ferritin 12 so took iron...How's your ferritin?
3mnths on-ferritin 42 but b12 dropped 292. Still unwell.
6mnths on-b12 261 & mch over range now,still unwell.
6 months on ferritin low agn 24, mch further increased, like you was experiencing waking up finding left hand side numb. migraines, confusing words,tired,& many more b12 sympt,but Dr refused to acknowledge.
I researched b12 at this stage seeing as it had dropped,it took few months to convince Dr to refer even tho I was paying forActive b12 (27) & referred for MMA (700+) diagnosed as Functional deficiency by St Thomas.
PLEASE NOTE, they referred any Activeb12 result between 25-70 for MMA,so at 66 yours wldve been tested & considered at risk.
Loading dose/ monthly inj.
In time symptoms really improved, took couple yrs for pins needles to stop,migraines no more.
Then I worsened, told it was iron supplements making me nauseous & maybe too much b12, covid then hit & swopped to sublinguals.
I found out ltr tho that at that time mch was overange agn, b12 was 1700, much above the 1100 ish it'd bn sitting ok on & ferritin was low,28 agn. So actually, I prob just needed more iron in the mix to get ot all working! ?
Since sublinguals B12 been dropping,various other health issues have been blamed for poor health & I'm on round 2 in my life of getting this sorted!
Bit longwinded,but just trying to help you see there is no one size fits all in all of this & keep open-minded by yr symptoms.
St Thomas nhs hosp proved that it's poss to have a b12 def & v.high MMA with a serum b12 level that is well within an NHS range.
A result of b12 600 this time around proves that a b12def can exist at such a level & some of us can have pretty scarey symptoms going on by then.
As other members have said yr homocysteine cld be pointing towards b12 issues,yr MMA though not high,is not bottom of range either. Then agn, it's very poss to have b12 def without either of those being high, so it really all boils down to symptoms!
I'd ask for a full blood test & do a recent check of Active b12,folate,vit d,ferritin & then get bk on here with results.
Thank you for your response, sounds like you have been through quite a journey hope you're feeling better now. I am realising you need to monitor all your vitamins and symptoms quite carefully. In someways my symptoms don't seem bad enough and maybe I am just getting old!
I will get some more tests done and see if things have changed. I 've seen comments saying there is no point testing once you have started treatment. Does that only apply to injections?
I was trying to highlight the fact that your serum b12 levels may well fit in the NHS range,but aren't very high and in many countries they suggest symptoms can appear at 500 & under, mine this time have been about as bad as I'd ever want & level read 608! Seems the 3x1000 sublinguals a day were keeping the serum in range (although it's been dropping) but not enough to.stop.symptoms.Your level raised a bit after starting tablets but your symptoms haven't improved. As fas i know,numb arms and legs are nothing to do with getting older & need looking into...don't let anyone tell you you're getting old!INot everyone gets all of the symptoms & I think numbness is quite bad enough!Do you get pins and needles too?
Yes good idea to get those tests done, you may be able to get more indications from that. Yes all very difficult once supplementation has started,but then again it can be difficult to prove beforehand on this system too it seems!! You'd see if the supplements have raised numbers even higher I guess,but at the end of the day if the symptoms aren't improving & are b12 related then the numbers don't mean much at all...
When you are using supplements, what dose are you using? Try at least 1000mcg sublingual. If your symptoms don't go away, you could need injections. Your test results are in range but usually we see people having really high B12 levels when they are supplementing.
I was taking thorne basic b complex and jarrow B12 (1000mcg). I am now taking Igennus super B complex 1000mcg sublingual and igennus super b complex high potency 900mcg.
I expected my results to increase more than they did when I started supplements which made me wonder if I need injections.
I had a test result of A 762 pmol/L on a test where the normal range is 150-650 pmol/L back when I was taking sublingual B12 and it was working for me. I haven't had a recent test: my doctor switched to injections when I got tingly toes without bothering to test the B12 levels. The injections are working for me.
Hi - a few people have mentioned your homocysteine levels. I have been lucky enough to receive 3x a week B12 injections (+ folic acid) on the NHS which reduced my homocysteine from 22. My other tests were in range - B12 a bit lower than yours but my MMA was also a lot lower - mid range. I also have hypothyroidism. I had also tried to raise my B12 levels with tablets but didn’t have any success.
The injections helped enormously, however when the 3x a week ones stopped I very quickly became worse again. They retested my homocysteine c. 4 weeks after the injections stopped and it was 12. I felt awful, tired, an emotional wreck etc .etc! I assume that when I was feeling well during the injections my homocysteine would have been lower. My point is, that even with a homocysteine of 12 I still felt terrible.
My injections were restarted and it has taken a further 8 weeks for me to feel well again
Despite having neurological (mainly neuropsychiatric) symptoms I was only offered treatment after my homocysteine test. If you are feeling worse that you did when you had that test then perhaps it will have tipped over the range?
I raised my b12 level to 254 with supplements, I’ll never know what it was beforehand. If you feel tired and generally below par it’s quite understandable to try self treatment before seeking a doctor’s advice and that’s the trap that many people fall into. B12 levels in range but low.
Even though your MMA and Homocysteine are just in range there is a pattern with your b12 suggesting sub optimal metabolism, which I think is likely to cause considerable symptoms.
I had a Hcy level of 11 after oral supplements and I experienced anxiety, depression tiredness and recurring sore mouth/ tongue.
No doctor has acknowledged that I had an issue and in the end I resorted to self injection. That was a revelation to me - that I had muddled along from one bout of depression to another all my life. I feel so much better now with energy and a more positive attitude - but it took b12 injections to clear the mental fog.
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