I recently wrote about burning mouth syndrome- and how for diagnosis to be considered for oral dysaesthesia as a primary condition would require exclusion of all secondary conditions: B12/folate/ferritin, autoimmune conditions and salivary gland disorders. My angular cheilitis issues have been resolved now, but remaining problems include burning tongue with piecrust edges(tooth-marks) and yellow/white coating as daily issues, off and on all day. It has improved in appearance since frequent B12 injections started, but burning still a daily problem.
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Cherylclaire
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Prior to being diagnosed with b12 deficiency I had biopsy on tongue. The reason for doing this was too see if the amalgam fillings were the cause! no surprise then that it cleared up with b12. It's just left me with red scar along the side of tongue.
You'd be surprised just how strong the muscle is in the tongue! Talking was hard work as my tongue was so swollen and every word sounded weird. Soup was on the menu 24/7. What we have to go through before we get the right diagnosis
My tongue was like that, so big that it wouldn’t fit properly in my mouth. I was continually biting it when eating and trying to talk, it looked and felt horrible. I kept blaming it on jagged fillings that were making it so sore and swollen but it was the lack of b12.
That's appalling! West Suffolk hospital wanted to do that to me too! I was so lucky that a locum pharmacist saw me, recognised my true problem and I managed to get blood tests done before the biopsy. I am eternally grateful... And sorry you had to go through it!
Interested in this as I think my problems, in this instance, ARE caused by dental work. I never had tongue/mouth issues until I had a diseased wisdom tooth removed and a massive filling put on the next tooth, which was cracked. All my issues began in the immediate vicinity, then moving to my tongue, upper palate, even spreading to my throat, but I kept being told it's 'globus' or 'dysphagia' and now 'Sjogrens'. Despite me saying I think it's linked directly to dental work, nobody responds. I haven't been able to see the dentist since the start of the pandemic but prior to that they said they looked and 'couldn't see anything, possibly a nerve issue'.
How did you manage to get the test to see if it was amalgam fillings? What sort of test can tell this, who referred you, and to which specialist?
I would advise against a biopsy, but years ago there was someone I read on the previous website who had blood tests for mercury, which led to her having her amalgam being replaced. She had to eat charcoal after treatment to absorb the excess mercury.
That's ok, thanks. It's all helpful. Just wanted to know the specialism as I was referred to gastroenterology and don't think that was the right department for the issue!
"Don't you stick your tongue out at me, young lady!" 😜😁😁😁
And
"Your tongue or mine?" 😂
I so know what you mean! I'm grateful for the problems with mine in a way because the sides splitting and other problems you mention are the early warning signs for my needing more methylfolate. Amazing how we can share some unusual things but still be so different in other ways too. Each of us is unique!
Just wondered... Did you know that the subconscious mechanism that stops you biting your tongue is highly dependent on calcium? OK it needs B12, folate, etc, etc, but if you bite your tongue unexpectedly, especially if you do it more than once, it can mean you are short of calcium - or D3 (and K2 if you aren't on anticoagulants) or you have parathyroid problems so are not utilising your calcium in a balanced fashion? I wish I could find the link to the science behind it - it's fascinating - but I'm too tired tonight to work out what to search for.
If you need extra calcium be careful about taking it or eating high calcium/dairy diets with other foods, especially iron, because calcium locks up just about all other nutrients. (Think of many plants struggling on calcareous, high pH soils - they do so because the high chalk content in effect starves their cells of nutrients because of the calcium lock-up and it's similar with us!)
If I wake up in the night I eat cheese then coz it keeps it away from my other meals and stops the osteopenia I was getting.
I get vitamin D3 tablets (and Raloxifene) on NHS because of osteoporosis of the spine and osteopenia in neck. Yes, tried to keep them apart from iron tablets or multis when I was taking them - but never thought about iron etc in food being affected! Funny how what you take as a tablet seems to get compartmentalised from food intake in your mind.
Cheese at night ? Hope you don't get nightmares, Denise !
I know just what you mean about forgetting to think about food as a nutrient source - I know but still have to battle to remember!
I'm gently campaigning from my farming perspective to get the UK government to look more at positive nutrition from foods, rather than just whether something is "good" or "bad" because of sugar or fat (things like avocados and meat can show as "bad" when they are packed full of essential nutrients so on balance are very good).
If we were taught this as little kids at school it would come as second nature. I've had an opportunity to see some of the teaching of the diabetes prevention programme and it is excellent - it would be great if this was taught to everyone from primary age up!
Most of my neuropathy issues have resolved now, except for the tinnitus that ensures I'm never lonely 🙄.
However I do still have one shoulder that nettle stings and the tips of two toes that burn, if given a hint of an excuse.
Lots of people report ongoing burning (neuropathy) in various parts of their bodies, especially their feet, even after their other deficiency issues have resolved.
Because your tongue was so badly affected, do you think it might be possible that this is your site of worst neuropathic damage?
(Not quite the same as a foot, but.... OMG am I glad you have a sense of humour! 😀)
I sincerely hope in time it does gradually continue to improve, especially as you are so good at ensuring that you give your body the nutrition it demands. 🤞🍀 ❤️
I too have a sore and nasty tongue. Diagnosed 2 weeks ago levels 120 spoke to gp last night and new gov guidelines are anything over 115 can be treated with supplements which i was quite upset about l. Been taking b12 10mc per day was told it will take at least 3 month for me to feel any benefit! Gonna be a long 3 month ☹ feeling sooo exhausted and tored constantly and my body aches constantly I'm 49 so not too old.
Dawn, have you got a copy of the test results ? It would be useful to see what the unit of measurement used was (there are two different ones in use) and especially what range was given for your B12 test result ?I know of no new government guidelines that would say this.
There are some that think that high-dose B12 tablets can be used in some cases - but this does not seem like the high dose being discussed. Also if you have a low starting-point without a diagnosis, without any known cause, you may benefit from at least an initial loading dose- which is usually 6 injections within a few weeks.
It would be worth keeping a daily symptoms chart - listing your symptoms and marking down when they occur during this period.
Foggyme , can you provide links to the guidelines that GPs should be following currently ?
"new gov guidelines are anything over 115 can be treated with supplements"
What a load of rubbish...at least I am not aware of any national guidelines that say this....
Suggest you consider joining PAS and asking them about this. I'm sure Martyn Hooper the chair of PAS, would know as PAS has input into NICE guidelines.
I know it is possible to have severe B12 deficiency and in range B12 result but trying to get this information through to UK GP’s is a different frustrating story isn’t ? I have yet to find the energy to fight my GP.
I will ask my son for the references links etc. The info I mentioned comes from a UK hospital haematology clinical lead.
So what has 115 ng/L got to do with it ? That figure seems to have no significance.Your level is low - considerably lower than the bottom of their range.
This should not be being ignored, otherwise there is no point in having a range at all.
I can see that folate and vitamin D were checked. What about ferritin- how is that doing ?
I'm 63 - way older than you -and I can't see why I should put up with poor health just because I've been around for a while, not if there is a solution. Neither should you.
By the way, I was tested and found to have B12 deficiency in 2016: my level was 196 ng/L with a range of 197-771 ng/L. I was treated straight away because below range is below range. Despite the injections, as you can see, although I have got improvements some symptoms remain five years on !
Hopefully, someone will send you the links to current GP's guidelines tomorrow. If not, please try putting up a post of your own as sometimes it gets missed at the tail-end here. Just write what you have written -about what your results were and what your GP advised.
Apparently Gp says because im at 120 and new guidlines are 115 and above treated with supplements they wont inject me. I have no idea where he has found 115 new level guidelines from?? No confidence in them to he honest and yeah i completely agree age is but a number and we should be given the same treament irrelavant! Im sure my Gp makes his own rules up as he goes along No mention om results for the other thing?
You are absolutely entitled to know what guidelines he is using. Afraid, you might not wish to do so, but you really need to ask, as firmly as needed, to get hold of them. Otherwise you are being denied the right to be informed.
(Whilst I wholly agree that it is a ridiculously fine point based on numbers.)
Helvella is right - but I would still first wait to have a look through the established guidance for GPs, so that you can ask for what you are entitled to in terms of treatment and frequency, in order to get as well as you can as soon as you can. (Sorry I can't do the links myself, or I would have already.)
Thanks so much for all your advice. I'm due another b12 serum test Sept (not sure that will happen with lack of blood bottles) should i ask for my intrinsic factor to be checked aswell? Lower limbs andfeet and lower arms and hands I'm getting random twitches and some very quick but painful stabbing pains. I'm still extremely exhausted and tbh getting a bit tired of it now. I just want to feel "normal" again ☹
Intrinsic factor antibody test can literally go either way: it is positive, for those with PA, between 40-60 % of the time. That would be fair enough if all GPs and consultants were aware of that -but they aren't. If they were, they would not be using this test to decide who has PA and who doesn't . At least, not on the first result.... best out of three ?
Might give you a fighting chance: a positive result is 95% certain - which is about as good as it gets in the medical world. They should stop mucking about at this point.
Good luck getting there !
Begging your pardon, but your GP sounds like a bit of a plank, so maybe the best approach is to ask what he thinks is going on with you ?
To be honest, none of us seem to be aware of any new guidelines, apart from those being worked out currently by NICE and Martyn Hooper (founder of the Pernicious Anaemia Society) - who himself needed three IFab tests before getting a positive result. Likely to take many years to complete, but at least we are being kept up to date. Suggest you join the PAS for support and updates.
Meanwhile, no GP is allowed to make up their own version - so worth digging deeper.
Hi yep he is a plank and he really cant expect me to carry on feeling like this with no answers! Your right I need to be a little bit more assertive with him! Hopefully I get to see him face to face and not just on the phone Thanks again u lot honestly buck me up no end!!! I am so grateful xx
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