Continuing from my previous post I now have received my test results.
Does this result conclude I don’t have a B12 issue?
I have been supplementing high strength sublingual B12 and compared to my past results I seem to be absorbing it as my levels have raised significantly, my MMA looks low in range so can I rule B12 out of my investigations re my symptoms?
Many Thanks
I don’t have as much experience as others on here and I don’t know your past history, so with that being said hopefully others will comment as well. I don’t think that it necessarily rules out a B12 issue. Have you figured out the reason for the B12 issue? If it’s autoimmune related, due to IF or PCA it can take time for it to progress. Again I’m not an expert, but I have read that testing while you are on supplements is not useful and would be better to go off of symptoms. I do know a few others on other groups who use sublingual and it works for them, just keep an eye on symptoms. Depending on what is the cause you may need to continue taking it.
Have you tried the diagnostics calculator on the B12 charity site?
b12d.org/admin/healthcheck/...
If you are experiencing many of the symptoms of B12 deficiency then the stats don’t matter much, the signs are there. My mother has all the symptoms which I only noticed because I went through it myself - her B12 serum is fine at 600ish, her active is high, MMA and homocysteine fine too, yet up until a few weeks ago when she started self injecting she was looking a bit like skeletor! Glad to say the injections are working. Told her beforehand there’s no harm in trying and a lot of upside if it works so all I can suggest is don’t focus too much on numbers when diagnosing this one!
I have done the calculator and came out low at 14.29%. ENT have referred me for an MRI and I’ve organised some more thyroid tests to check a few things out.... so we’ll see what all that uncovers.... I guess I can always come back to giving B12 injections a try it if nothing else works x
You are obviously absorbing the B12 from the sublinguals, so you don’t have PA. The B12 is getting into your cells, or MMA wouldn’t be low.
Have your symptoms improved?
Not really although I had 2 occasions during August where my ringing stopped and the sensation in my head almost felt like it was gone but it didn’t last long 
I’m at ENT today so we’ll see what they say.
I’m also going to test my RT3 and am thinking It maybe due to low T3..... I guess it’s a process of elimination..., it’s not easy trying to fathom...
Thankyou again for your help 🙏
Interested to hear how it goes.
It was an ENT consultant who told me that my tongue and throat were typical of a person with B12 deficiency, confirmed that salivary gland infection and distorted saliva ducts could have an impact on B12 absorption from food (extrinsic factor), and that my frequent self-injections were absolutely the right answer -but would take a long time and to persevere and not give up. So I didn't.
Glad I didn't because I am getting better but it's very slow and not without setbacks (unable to determine cause). No longer need to nap in afternoons for 2 or 3 hours or sleep through the night for 14/15 hours. Dizziness also diminishing. Yawns (air-hunger) not so frequent or so bad- or so loud that everyone turns around to stare in the checkout queue !
Even split, sore and bleeding corners of mouth are rare now. That was an almost permanent feature for 10+ years before GP first found that I had B12 deficiency. But who goes to the doctor just about sore mouth-corners ?
Keep looking for answers : reading research, checking symptoms lists , asking questions, keeping a daily record of what is happening to you: frequency and severity of your symptoms, when better/ worse - even perhaps what you are eating and drinking and when, at least for a while. These can help in referrals to consultants especially if you have cognitive and/or memory problems. They can also help when you are improving: it isn't always easy to notice symptoms gradually disappearing, you forget how bad it once was.
Fbirder is right in that with a raised B12 and active B12 from sublingual supplements alone, and with low MMA, it doesn't appear to be a B12 problem. My MMA, checked five times now, and always between 350-400 nmol/L (range 0-280), may yet be written off as "my normal" because it's apparently not high enough. Who would have a clue now how high my MMA was before the B12 injections started ?
Nothing about this is simple, is it ? Elimination can take an awfully long time.
What other symptoms do you have ?
Can you think of any reason for temporary improvements twice in August ?
What does your GP think ?
Is ENT appointment related ?
Hi and thanks for your reply.
ENT confirmed I have tinnitus (which obvs I knew) but said I’m a tad deaf in my right ear, which I didn’t know, I don’t think it’s bad enough for a hearing aid, he said could run in the family but I disagreed and know this is related to my autoimmune thyroiditis. Just before it was diagnosed, my antibodies were sky high and gradually over years things were going wrong with my body, I told him about my head ‘pulling- sort of crossing which sent me staggering across the room, I said I lost the cognition in my left hand, pins and needles, and could see double when I looked up, I said the Levo had fixed other things but I’m now left with this ringing and weird balance issue like something is unsteady in my head, he said it is probably related to BPVV but wasn’t too concerned as I’m not getting headaches although he said I could have an MRI to put my mind at rest... so I’m going to.
I think you are right about writing things down - I actually forgot to tell him how forgetful I’ve become and processing info is difficult and also that my voice has got hoarse (which is linked to thyroid) but also new to me and has been going on several weeks (I was never a good singer but I literally can’t sing!! There is absolutely no range, it’s gone very flat and croaky and has been like this for a few weeks now). I actually thought to tell him but by the time he’d finished speaking I forgot, but I knew there was something else I hadn’t mentioned!!! How ridiculous is that and I’m kicking myself now!!
I’m just hoping I can mention when having my scan to check out my neck too....or wondered if I should go back to my Drs 🤔
I’m glad to hear you finally got to the bottom of your issue and that you are slowly improving 🙏.
I have ordered some more thyroid and adrenal tests so I’ll take it from there...it’s all a bit scary but you just know when something isn’t right!!
The 2 times I got a bit of respite from the ringing and the head felt almost normal was 1st time stood in the sea in Blackpool with my friend 1st sunny day of the summer - felt v relaxed
2nd time - in the car going to my cousins for a few days again very chilled and relaxed
It was funny the consultant told me to reduce my stress load and meditate and recently I’ve been taking more time off work... I need to get back into my meditating - but I think there’s a bit more to it than that 🤔🤔🤔
Thanks again 😊
A bit more to it than that ? I'm sure there is. Doesn't sound right.
Forgetting to tell consultant you are forgetful ? Think we've all been there.
Often in the past I have thought "I'll just stick to the main problems/ the appropriate symptoms for a particular consultant, because if I tell them the truth about all of it, they'll think I'm a hypochondriac. That is when I decided to make a list and hand out copies: they can decide what is relevant and I don't have to remember everything or decide anything.
Consultations are difficult enough: what to wish for ?
A symptomatic day so they can see for themselves.
Or a day without symptoms so you can understand what they are saying.
To me, the hopeful part of your story is that if it can happen twice, it can happen.
Here's wishing for good days of respite more often for you, jamjar.
Have you posted on the Thyroid UK HU forum yet ? Thyroid can change and needs regular checking. Symptoms might strike a chord with people there.
Although autoimmune problems often do come in groups, PA very difficult to prove, especially if sublingual supplements working and MMA low. Have folate, ferritin and vitamin D levels also been looked at ? All or any commonly low with B12 deficiency.
I think I have learnt a lesson from this consultation and will def make notes for next time..
Consultations are difficult enough: what to wish for ?
A symptomatic day so they can see for themselves.
Or a day without symptoms so you can understand what they are saying.
This made me laugh because it’s so true!!!
I think next time I’ll just hit them with every symptom big or small and like you say have it written down so I don’t have to rely on my disastrous memory!!
I do post on TUK and will be posting following my Thyroid and Adrenal Test , I think the next thing pending results is to trial T3/T4 combo.
I’ll have to come back to B12 if all else fails..., it’s so bloomin complicated and expensive
Like you say I’ve had a couple of glimpses of feeling normal so I’ll hang on to that!!! 🤞🤞
Results of MMA test - does it mean anything helpful?
Viapath now doing B12 with MMA test with home kits
Result of 'active B12 test'
