Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: Jennie A Holden on October 23, 2016, 02:44:50 PM

Title: Burning mouth and tongue
Post by: Jennie A Holden on October 23, 2016, 02:44:50 PM
For about 12 months my mouth and tongue have a constant burning sensation very uncomfortable I've tried loads of mouth washes but nothing helps the doctors don't know what it is and aren't very helpful. Could this be a menopause symptom change in hormones??
Title: Re: Burning mouth and tongue
Post by: Jennie A Holden on October 23, 2016, 02:49:23 PM
Thanks x I've struggled so long doctors are no help whatsoever
Title: Re: Burning mouth and tongue
Post by: CLKD on October 23, 2016, 03:03:11 PM
What's in your toothpaste?   I had problems when eating chocolate, bananas ……. but not every time.  It was when I used a certain product.
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 23, 2016, 03:06:29 PM
Yes it is a menopause thing ( I have had it four years ) HOWEVER do not be told it's just one of those things until your vitamin B12 / ferritin / thyroid / vitamin D have been checked as these can all also cause it.

I have just had all these tested and I am very low in them all.

HRT got rid of 50% of mine I am hoping the rest goes once the deficiencies are sorted out.

BTW make sure you get the actual readings from your GP and are not told all is fine " within range" as within range and optimal range are two vert different things.

I have been to a lecture at Loughborough university on B12 and Thyroid by a Professor / doctor / midwife on the subject. ( hubby was seriously ill , all down to B12 deficiency ).
Title: Re: Burning mouth and tongue
Post by: Jennie A Holden on October 23, 2016, 03:10:06 PM
Thanks Maryjane x I've just changed my HRT so hopefully this will help but when I go for my 3 month check I will bring this up with them x it's so annoying and very painful
Title: Re: Burning mouth and tongue
Post by: Annie0710 on October 23, 2016, 03:16:31 PM
Mine was 197 and they told me it was acceptable!!

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Title: Re: Burning mouth and tongue
Post by: Jenna on October 23, 2016, 04:45:09 PM
Burning in the mouth can also be caused by SLS (sodium lauryl sulphate) in certain toothpastes. Sensodyne Daily Care Original is one that has no SLS in.
Title: Re: Burning mouth and tongue
Post by: CLKD on October 23, 2016, 04:48:01 PM
That's it Jenna - (Penmarric?) - when I changed my paste the symptoms mostly went.
Title: Re: Burning mouth and tongue
Post by: Taz2 on October 23, 2016, 04:58:05 PM
Hi Jennie. John Radcliffe hospital has produced this info about Burning Mouth Syndrome http://www.ouh.nhs.uk/patient-guide/leaflets/files%5C110407burningmouth.pdf

Hope it gives you some idea as to what you can do alleviate the symptoms.

Taz x
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 23, 2016, 04:59:08 PM
Sparkle your B12 is far to low......anything below 550 is considered low and ideally should be at a 1,000 for proper neurological and a whole host of other symptoms .

A lot of dementia is actually B12 deficiency, as told by a NHS geriatric consultant who would never have believed this herself until she also found out she was B12 deficient, she now checks the bloods of all her dementia patients for B12 deficiency and lots are.

Apparently for some reason it has got " forgotten in med school " about the real importance of B12 as it has been known about for a very long time.

Within range can be between 200 and 900 HUGE difference so I would definitely be treating yours at that reading sparkle. However over the counter B12 is not enough daily allowance and optimal daily allowance again are to different things. My hubby is on a very high dose as told by the specialist.

Very often a low B12 also has low vitamin D / calcium / ferritin and thyroid issues. Again the NHS testing of thyroid is just not good enough. The lecture given by a top NHS thyroid professor said exactly this.

I now have a nutritionist and I am sorting all this out.

My hubby had what at first was told to be a stroke, on a stroke ward for 24 hours.....then they decided no. From there 3 years of getting iller and iller , immunology dept , dermatologist, 3 a&e admissions , was heading for a wheel chair as had NO energy for anything was looking at early retirement.

Now he saw THREE neurologists plus the other consultants cost the NHS goodness knows what.....we were left to get on with it. So I got onto Dr Google , paid for a host of blood tests that may show a reason for his symptoms " hey presto" B12 deficiency. Found Dr Chandry UK expert , six months on he is back at the gym after 3 years and can do a full days work without almost collapsing and falling asleep, he also follows the same nutritional path as I do.

There is an excellent book called could it be B12 written by Sally Patholock , she was diagnosed with MS if it wasn't for the " on the ball consultsant " she mentioned her symptoms to ( she is a nurse ) she would have gone down the MS route it was B12 all along , MS and B12 deficiency mimic each other very often.

If after a year hubby is still doing well , he will write to all the consultants as it really is very basic stuff and should be expected by a neurologist and immunologist from top hospitals, my hubby really could of ended up in a wheelchair because if you remain B12 deficient for a very long time it can have irreparable damage to the mylene sheath. This may make some realise why I always say get your results in front of you , and do your own research.

WE ARE OUR OWN HEALTH ADVOCATES.




Title: Re: Burning mouth and tongue
Post by: Sarai on October 23, 2016, 05:04:31 PM
Maryjane you sound like somebody who is on the b12 Facebook group.
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 23, 2016, 05:14:39 PM
Sarai I was , hubby still is.

I went to the lecture at Loughborough UNI this year , did you ?

I can't tell you what a near miss it has been with hubby, Asian Drs are better at knowing about B12 deficiency as it is really quite common because of there diet, however hubby is not a vegi or vegan his will have been not being able to absorb it correctly.

Also ladies who don't no every time you have nitrose oxide for teeth / surgery it delpletes B12 , omeprazole deplete it as all these things upset the gut flora regards absorption of the B12.
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 23, 2016, 05:20:04 PM
Forgot to say amongst other things , hubby had burning mouth syndrome and a beefy tounge. Both gone.
Title: Re: Burning mouth and tongue
Post by: Jennie A Holden on October 23, 2016, 06:25:42 PM
Wow thanks everyone I'm really glad I mentioned this x I'm off work this next week so I guess I will be doing lots of reading up x
Title: Re: Burning mouth and tongue
Post by: Annie0710 on October 23, 2016, 07:13:23 PM
Your dentist may be able to help.  I mentioned my burns and metallic taste and she immediately thought burning mouth syndrome, she referred me to a specialist but the phase had passed, he took photos etc and left the appt open in case it returns but touch wood it hasn't.  It really got me down not being able to eat or drink without pain, weirdly chocolate was soothing x
Title: Re: Burning mouth and tongue
Post by: Annie0710 on October 23, 2016, 09:43:57 PM
Sparkle if you're supplementing you won't get a true result, the tablets will just make your result higher but may not be reaching your blood cells.  It takes 3-4 months for blood cells to renew so you'd need 4 clear months from supplementing for a true result

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Title: Re: Burning mouth and tongue
Post by: Annie0710 on October 24, 2016, 05:47:47 AM
They gave me supplements in 2012 then retested, I went to 219 (range 211-911) so they felt chuffed they'd got me back in range, and I believed it

It was only last year researching it all that I realised how naive I'd been (and the surgery)

I've been off supplements long enough now to retest but get embarrassed to ask as menopause and my fight for different hrt has got me phoning/visiting quite a bit lately

X
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 24, 2016, 05:49:30 AM
Sparkle I will message you , as it may be considered to much info re names etc .
Title: Re: Burning mouth and tongue
Post by: Maryjane on October 24, 2016, 06:32:05 AM
" in range " is the difference between a bath with a inch of water in it , and a bath filled to the over flow that is literally how the NHS " in range works.

If you are lucky and you are the low end and your symptoms are suggestive that this could be the reason , your GP may help.

I have seen a Professor who said doctors are scientists who unfortunately stop using there brains when qualified, and donot think out of the box.
Title: Re: Burning mouth and tongue
Post by: Jennie A Holden on October 25, 2016, 03:09:34 PM
Well just been to the docs armed wit all he info and literature on Vitamin B12 etc but doctor wouldn't give me a blood test as apparently I had them checked last March and there would be no point rerunning I can't even remember having them checked !!
Title: Re: Burning mouth and tongue
Post by: Jennie A Holden on October 25, 2016, 03:39:01 PM
Sorry I forget to say that the doc said my level was 349
Title: Re: Burning mouth and tongue
Post by: Taz2 on October 25, 2016, 04:52:36 PM
Were you advised on a possible painkiller Jennie? In the info from John Radcliffe it mentions alphalipoic acid which is available in health shops as being helpful in some cases. http://www.ouh.nhs.uk/patient-guide/leaflets/files%5C110407burningmouth.pdf

Taz x
Title: Re: Burning mouth and tongue
Post by: Annie0710 on October 27, 2016, 06:02:45 PM
Well just been to the docs armed wit all he info and literature on Vitamin B12 etc but doctor wouldn't give me a blood test as apparently I had them checked last March and there would be no pgoint rerunning I can't even remember having them checked !!

B12 levels can change anytime , unfortunately Drs don't cover b12d in detail in training

X
Title: Re: Burning mouth and tongue
Post by: Otes73 on October 27, 2016, 06:21:42 PM
My sister has burning mouth syndrome and is low in B12. From what I can remember your can be within range but not have enough free B12 which the NHS doesn't  test for. She paid £30 for a private test which was done via a finger **** test at home and then posted to the lab. This showed she was indeed low and the GP did then prescribe B12 injections when she produced these results. She also has CFS and digestive issues so no matter how many supplements she was taking they weren't helping. You can buy online high strength B12 lozenges which are supposed to be very good. I can give you the name if I'm allowed?! Not sure as I'm new to the forum!
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Title: Re: Burning mouth and tongue
Post by: Michelle46 on October 27, 2016, 06:55:37 PM
I had burning mouth syndrome for 4 solid months. I was referred to a maxofacial specialist which I saw twice. It has subsided now but was absolutely awful. Nothing helped other than ice lollies x
Title: Re: Burning mouth and tongue
Post by: Otes73 on October 27, 2016, 07:46:35 PM
Jarrows 5000 mcg B12 are the ones she was recommended. I think these are the strongest available other than injections.
I agree it's totally wrong you should have to pay! I know there is a very good forum dedicated to this B12 where my sister got some really good advice. X
Title: Re: Burning mouth and tongue
Post by: Otes73 on October 27, 2016, 09:01:09 PM
She's slowly getting better but it's taken a while. She's stopped taking lanzaprzole (not sure how it's spelt!)
She was informed it can lower B12, she's also given up gluten and dairy which has helped her acid. She still has some inflammation but has started taking a prebiotic, magnesium and a food enzyme so fingers crossed for her.
There's a B12 spray too but I think the jarrows are a higher strength.
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Title: Re: Burning mouth and tongue
Post by: Otes73 on October 27, 2016, 09:57:00 PM
She went to see a nutritionist after getting nowhere for years! She's only 40 with a 4 year old little girl and desperate to get her health back. She advised before she could help with the CFS her digestive issues were a priority as the nausea, bloating, burning and sore throats are making her more exhausted! The above are the regime they put her on. Very slowly there are improvements which is great.

Hope you find something that helps you, I'll speak to her tomorrow and see what else she was advised.
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Title: Re: Burning mouth and tongue
Post by: Maryjane on October 28, 2016, 07:31:24 AM
Hubby was on 9,000 a day then 6,000 and now 3,000 as directed by specialists, the under the tounge ones are better.

If these hadn't worked he would of had the jabs , however the way the HNS do the jabs they are to infrequent.

Buy the book "Could it be B12" by Sally Patholock it is really worth buying. You will probably have a light bulb moment.

Also it is highly likely it won't just be B12 that's the problem .....all the B bits, .Vit d , ferritin , gut absorption . Need healthy working guts to absorb thevits , bad guts can't absorb nutrients.

We are what we eat.

Can't remember if I have already posted this so apologise.

I am about to embark on a nutritional path , will report on it in 3/6 months if I feel it has worked.
Title: Re: Burning mouth and tongue
Post by: Otes73 on October 28, 2016, 09:51:41 AM
Yes MaryJane, she also takes a vitamin B complex, vitamin D and ferritin as she was low in all of these! She maybe in Peri too as oestrogen was low but as she'd just come off the pill they are going to retest her in 6 months.
I think it's good to source the highest quality supplements you can afford as a lot of the cheaper ones are full of rubbish fillers. Plus research the best time to take them to get the most benefit.
So far giving up gluten has been better for her tum and also raw peppers and onions etc.
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