Lichen Planus & “ a feeling of a sunburnt lower... - Thyroid UK

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Lichen Planus & “ a feeling of a sunburnt lower lip

Avidreader
Avidreader

I have Lichen Planus in my mouth ( is this from 20 years on Levothyroxine?)

I also have a bottom lip which feels constantly sunburnt type of feeling & a small lesion or lump on lower lip ? Anyone else ? I am on AIP diet 🤢restrictive but has changed my life ! I also avoid fluoride toothpaste etc - anyone ideas please ? I’ve had all my amalgams removed too - more money ! 👀

16 Replies
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Avidreader,

I've had oral lichen planus for about ten years, but only been taking Levothyroxine since last October so, at least in my case, levo didn't cause it.

I do believe, as you have indicated, that amalgam fillings can be a significant contributing factor. My OLP started after I had a particularly large amalgam filling. The hospital doctor seemed to think it could well be connected. However he recommended that I have them removed and replaced with gold or porcelain only as the need arose (due to fracture of a filling or a filling falling out). I would prefer to have had them removed as you have but am such a coward in the dentist's chair. Also I am fortunate that, so far, I haven't suffered much discomfort from the OLP, just a couple of flares in the past ten years. I agree with you that fluoride toothpastes are best avoided. I like the Optima Aloe Dent Sensitive toothpaste from Holland and Barrett and their tea tree mouthwash.

I can't help with the burning lip or lump on lower lip except to say that I do have a lump on the inside of my lower lip but think this is due to having regularly bitten it by accident.

Hope you don't have too much trouble with your lichen planus. I do know how very painful it can be.

All the best

Caroline

Thanks for this helpful reply x

Hi, I have lichen planus too. It's an auto immune condition, so while it's not caused by levothyroxine, it's linked to having an auto immune thyroid condition. The problem with your lip could all be part if it. When it turns into its erosive form it can cause sores and lesions which can be quite sore.

It's a horrible thing but does tend to go in cycles when sometimes its better than others. For me, sometimes I just have a few white patches inside my mouth that don't cause me any problems, but other times it flares up and I have a lot of ulcer type sores in my mouth. When that happens, the best thing I've found so far is to use Difflam mouth rinse. You can get it over the counter at pharmacies and it has a slight anaesthetic effect. I've also found that it's best to avoid raw tomato, chilli and onion, as they make the sores very painful. Also avoid chewing gum if you ever do.

Finally, I saw my dentist about mine who referred me to the oral surgery department at my hospital. I had to have a biopsy, which I wasn't very happy about because I thought it was unncessary. It wasn't painful, but I was hoping to be given some medication there and then, and they won't do that without a biopsy first. I am waiting to go back for the results, but apparently they will be able to prescribe me some steroid mouth rinse to use for when it gets bad. If you haven't been referred already it might be worth asking your dentist to do that, although if you do the first thing they will do is take a biopsy as they did with me, then you may have a long wait for the next appointment.

Strangely, the biopsy has helped me because they removed some of the sorest area and it hasn't returned so far.

Hope that helps a bit.

DJR1
DJR1
in reply to AlisonL

I am treated for oral LP and lip LP by the Oral Medicine Dept at Guys Hospital. I was referred by my fantastic dentist not the clueless GP.

My treatment is steroid mouthwash

Flixonase Nasule Drops 400mcg diluted with 15ml of water and one drop of Nystan. Lip LP treated with Potopic 1%cream. Once or twice daily depending on the severity.

Cleared up in around two weeks.

However since switching from Levothyroxine to NDT I do not have any problem with LP. This has been noticed with other patients in Oral Med. Most GP insist LP cannot be treated but it can and very successfully. Unfortunately it’s a postcode lottery and I thank God I moved house and found my amazing Dentist.

Avidreader
Avidreader
in reply to AlisonL

Thanks for this - I only use an Aloe Vera toothpaste and avoid fluoride & have had all my amalgam removed and use NDT 🤔but still lower the lip troubles me now and then flare ups - I have got my Cold sores under control with L- Lysine ( Holland & Barratt ) thank goodness - always take before I travel or if In sunshine - and don’t use harsh mouth washes etc - or chew gum 🤔AND I stick to AIP REGIME most of the time - my lower lip has little

Bumps - you can’t see them unless you look

Closely - ( so I’m guessing it is LP of the lip ) I refused the biopsy of gums as dentist said it was LP. White webby In gums etc - ) I was given a special toothpaste - which works on gums - but I don’t like to use it constantly as don’t like the chemicals -

AlisonL
AlisonL
in reply to Avidreader

It's so frustrating that it isn't possible to have anything prescribed without the biopsy first. I can't say I blame you for refusing it.

I would really recommend Difflam though if you haven't already used it. It really helped with a lot of my symptoms. Fingers crossed for you that it eventually calms down as it definitely sounds like you're doing all the right things.

The toothpaste I use is Ultradex, which you can buy from Boots or Tescos. It's SLS free and definitely doesn't sting like normal toothpaste, but it's a lot more expensive which is annoying!

Avidreader
Avidreader
in reply to AlisonL

Seems we have to spend a lot to feel well ! Or even just to function ! I can’t belive how much I’m spending buying NDT & also natural HRT - plus all the supplements and organic veg box from Riverford - scary money - xx thanks for advice - strange it hasn’t cleared up after 10 months off of Levothyroxine & on NDT ?

AlisonL
AlisonL
in reply to Avidreader

I'm on a T4/T3 combo and honestly for me I find it doesn't seem to relate to what medication I'm taking. It does seem to worsen though when I'm feeling more run down, although I've never tried NDT as I just can't face the stress (and expense) of trying to source my own. Good luck and I hope you find something that works for you.

Avidreader
Avidreader
in reply to AlisonL

thanks Alison, NDT I get on a private prescription from a private Endo- then it gets posted to me from a UK specialist wholesale pharmacy. yes expensive- But I'm so much better on it - I have just had to really cut down on other stuff.

(A lady I met through my Twitter lives near me & her Lichen Planus cleared up very quickly after swapping to NDT - I'm jealous! - I am looking for cheaper ways to buy it- Maybe germany, or greece? My husband is going to USA in September - where it's made- But I haven't received a response from rlclabs.com -

It is so frustrating- when Levo is given out freely .

Hi Avid. I don't have lichen plains but recently had a problem with an ulcer like growth on my tongue which was painful. I got referred to hospital and assured it was nothing 'sinister. It went away on it's own. Anyhoo...while going through this my Google research advised not to use toothpaste containing sodium laurel sulphate as it is an irritant. Most of them do contain it as it causes foaming. You could ask at the chemist or I found some of the sensodyne ones don't contain it. I hope this helps x

Avidreader
Avidreader
in reply to LiziBG

Thanks for this - I only use an Aloe Vera toothpaste and avoid fluoride & have had all my amalgam removed and use NDT 🤔but still the lip troubles me now and then flare ups - I have got my Cold sores under control with L- Lysine thanks goodness - always take before I travel or if In sunshine - and don’t use harsh mouth washes etc - or chew gum 🤔AND I stick to AIP REGIME most of the time - my lower lip has little

Bumps - you can’t see them unless you look

Closely - ( so I’m guessing it is LP of the lip ) I refused the biopsy of gums as dentist said it was LP. White webby In gums etc - ) I was given a special toothpaste - which works on gums - but I don’t like to use it constantly as don’t like the chemicals - x

Ah right. Looks like you're doing everything you can. I'm gluten free and looking into AIP diet. Hoping your lichen planus symptoms flare ups settle soon x

Avidreader
Avidreader
in reply to LiziBG

Let me know how you get on with the AIP - best of luck - it’s well worth it - but you need to make time to cook a lot ( extra ) so you’ve always got something to grab !

Yes it’s hard to stick to AIP 🤣 I spend a lot of time in the kitchen ha ha !

Hidden
Hidden

This may be an off the wall theory but here goes. I grew up in Miami Beach Florida and spent many good times over the years in the Florida Keys (I am very much an ocean person. ) The beaches in Key West are made of coral and lichen planus is a parasitic infection that is very common there. It is hard to treat because so many people walk barefoot around the island and then walk barefoot at home tracking the remnants into their houses and into their rugs. One of the things I have learned doing research on medication fillers throughout the world is that sometimes very strange things-wood bark shavings, ground minerals from the earth, and God knows what else are used. There doesn't seem to be, in my opinion, enough safety guards and laws about drug fillers and could it be possible that somewhere in the world a Pharmaceutical company is using a cheap filler made out of ground coral for their meds? I don't have the answers but it is something to consider.

Avidreader
Avidreader
in reply to Hidden

well that is interesting! Nothing suprises me really- We are what we eat & ingest ...

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