to wonder about my tongue and Dr reply?

[KissingOffTheMenu]

Hi lovely mumsnetters,

Ive had this tongue problem for nearly a year, it comes and goes, but never goes completely away, there always is a central “line” down the middle.

Ive seen GP, and been referred to Maxillo Facial clinic, but I’m told either that it’s not harmful, or it’s not known why it occurs in some people.

im not particularly worried as such, but I am of the mind that if your body shows unusual symptoms, then surely something is out of whack?

it also feels very tingly, like I’ve been eating lemons, and tastes nasty, sometimes it goes very dry and feels nobbly lije a cat’s tongue.
The side edges of my tongue go “frilly” too.

I’m in a loving relationship, and he’s very understanding and sympathetic, so no pressure, but I’m not up for kissing more than just lips to lips, I’m sure you understand.

Anyone out there that’s had this, got this, can give me there ideas and experience?

Thank you so much

Ooh that looks unusual. My daughter has geographic tongue, looks like mini red flowers in on it, has that been mentioned? Have you been tested for Sjogrens disease, that causes some weird tongue stuff due to lack of moisture?

You should ask for some blood tests to get iron and b12 at least. You need general bloods done. It clearly isn’t normal for you and a ‘pie crust tongue’ can be a sign of vitamin deficiencies at least.

Thank you for your well thought out reply.

Ive asked all the points you suggest, and had blood test that cover any possible deficiencies.
Ive even asked if there’s anything I can do via diet and lifestyle, but I’m net more or less with shrugged shoulders.
I was just hoping that a fellow mumsnetter had at sometime this condition, and had found a way to combat it.

No sign of it at all til middle of last year, and now it seems I’m stuck with it.

I know it’s so minor compared to known serious issues, but surely I deserve to not have this negatively impact my life, just coz it’s perceived as non life threatening.

Thanks for your input.

I've had a big red patch on my tongue for a year. It tingles and gets sore on and off. Also been to max fax and they don't know what it is but said its nothing to worry about.

They did loads of tests and didn't find any deficiencies but I noticed that even though they tested for 20+ things they didn't do a vitamin D test. So I got one privately and it was very low. Have been taking supplements and my tongue has got a lot better. Could just be coincidence but may be worth a try. I don't know why they didn't test for vit D.

I've also changed toothpaste to sensodyne pro enamel which doesn't have any SLS in it and think that has also helped.

It hasn't gone away though. It's frustrating not to have answers isn't it?

Looks like “black hairy tongue “

Ask chatgpt and it will come up with some possible diagnoses.

When did you last see a dentist?
They're probably better trained to diagnose a tongue problem than a gp.

Hi.

to answer a couple of Qs -

My Vit D is fine according to blood tests

ive not used mainstream toothpastes in many a year.

ive not thought to ask dentist specifically, but sure when they did my last check-up, it would’ve been obvious to them, if if were a dental issue I could’ve been advised on.

in general, I’m a pretty healthy individual, my weight is within advised numbers, bmi is fine.
I eat mostly healthily, sometimes not, coz I’m no saint.
I exercise daily, and I’m quite pleased that I didn’t catch a cold from my other half recently, and we live together in a pretty small space, so it would seem to me that my immune system is fighting fit.
oh, and I take probiotics.

I think it’s very much a 🤷‍♀️case, but I still don’t like that I can’t get rid of it.

Thanks again to all the ideas and suggestions.

100% that’s black tongue, how’s your oral health? Need to see your dentist over it. It can also be linked to some vitamin deficiencies and in the odd case diabetes

Before or when it appeared did you by any chance do a course of antibiotics? I remember some years ago I was taking a new antibiotic and was reading the leaflet where it said one of the side effects was a black hairy tongue. I only remember because I was obsessively checking my tongue for weeks after I had to take it.

Gee, I really can’t remember that far back whether I took antibiotics before the tongue thing occurred.
So I’ve had the condition for about ten to twelve months.
Dentist hasn’t commented.
I have had antibiotics (for a uti), but the timescale would be difficult to assess.
I do keep a diary, and there’s a goood chance I would’ve marked up any course of antibiotics as I have a poor memory and I hate taking (nitrofuratoin) them.
I think I might’ve marked up when the tongue symptoms occurred too.

so thank you for that, I’ll seek out my 2024 diary.

As far as blood tests are concerned, I’ve had had them, and not one deficiency 👍

i wasn’t actually looking for a name for my funny tongue, I just want to know if there’s a way to make it go as suddenly as it seemed to appear.

Thanks to you and all the others suggestions.

Dentist here. No need to see a dentist ( unless your oral
hygiene can be improved) as you had been referred to max fax anyway.its Black Hairy Tongue. What did max fax say? It’s relatively common, and can start out of nowhere. Have you used tongue scrapers? Sucking a peach stone can help?
are you a smoker?
it can also be anxiety induced. How is your oral hygiene?

I think that you definitely deserve to have it sorted.

It took me a very long time to get diagnosed with Coeliac disease when I had pie crust tongue and burning mouth syndrome. It didn’t look as bad as yours tbh but it was inflamed and uncomfortable and combined with up to 20 mouth ulcers at a time was horrible!

My bloods would often come out ‘normal’ but when I asked to see a copy of them it showed that mine were on the very lower end of the scale of normal. So do get a copy of your blood work and investigate what is considered normal.

Despite several visits, a doctor didn’t test for Coeliac disease until after about 4 years of constant discomfort. Any by then I was very ill with fatigue, nausea and malnutrition.

I was referred for potential mouth cancer twice and told to ask my dentist who just shrugged. I know it feels very lonely when the doctors you trust just shrug and say ‘poor you’. But it is affecting your life and it is unusual. You need someone to listen to you.

Do push for more support from your doctor and double check they have checked for everything it could be. Sometimes they don’t have the time to connect any dots.

And of course if you are taking iron and b12 or any vitamins already that can mask the actual blood results.

Fingers crossed for you! Hope you find the reason.