lichen planus

[Purpleprincess1963]

hi has anyone had lichen planus with underactive thyroid? Could anyone give me some tips on helping this condition? It is so painful. I just don’t know what to eat or drink.

[SlowDragon Administrator]

Looking at your previous posts,

The cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, confirmed by high thyroid antibodies 4 years ago

Both lichen planus and hashimoto’s frequently improve significantly on absolutely strictly gluten free diet

Were you tested for coeliac disease 4 years ago

If not, get GP to test now BEFORE trialing strictly gluten free diet at least 6 months

What are your most recent thyroid and vitamin test results and ranges

ALWAYS test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

How much levothyroxine are you taking

Do you always get same brand levothyroxine at each prescription

EXACTLY what vitamin supplements are you taking

[Purpleprincess1963 in reply to SlowDragon]

hi slow dragon thanks for your reply, I was tested for gluten and coeliac last year and it was all fine , I take 75mg of thyroxine the 50 is accord and the 25 are mercury pharma, I just recently had my test with medichecks and it said I was slightly Overmedicated and that was because I had taken extra 25 as I was feeling tired all the time all my vitamins were fine except for my vitamin D, which was quite low, so I am going to make sure I take them every day, i take vitamin B, selenium, zinc . I do always have my test in the morning. I have oral lichen planus which I actually forgot to say it was in my mouth. Do you think this is because my vitamin D was low that I have this ?my dentist said low iron can cause this as well.

[LostinHeadSpace in reply to Purpleprincess1963]

Hi I had a year with lichens as a raised rash on my back, but miserably itchy. It did finally end when my vitamin D went from below range to mid-range (only with sublingual, in high doses), and when I also went gluten free. Going gluten free also worked for my face puffiness.

[Purpleprincess1963 in reply to LostinHeadSpace]

Hi lostinheadspace I am making sure I take my vitamin D every day now and see if that helps as that was very low when I got my results back a few weeks ago, thanks for your help .

[Janinel159b]

Hi I was started on thyroxine when I was 48. With no symptoms at all. I started going cold as soon as I took thyroxine. Had brain fog. Knew this was wrong. Within days I had rash on my abdomen. I saw the Dr who diagnosed lichen planus.. She didn't know what to do or why I now had this I blamed the pills and said I wanted to come off them she refused saying I hadn't given it long enough .I had to go back as it then spread to my chest. She gave me some cream for it. That seemed to help after that I had various problems. chest pain . Given beta blockers. Dizziness. Had a panic attack. Off work all time sick overwhelming tiredness have never been tired in my life like that. Just became impossible to work in the end I had to come off thyroxine as ended up in a very bad way to this day I don't know why I blindly just took them when I felt well and always had been had I suffered with symptoms I would have benefited from taking them. Two specialists I saw both had no idea why I was ill. In the end I had no choice as no support . Drs who don't know anything. I Even had to say to one shouldn't you check my cortisol . Oh yes it's not enough is it. Then I was tested properly. The lichen planus was one of my first symptoms presumably you are same it cleared up with cream. Hope you get better. X

[Purpleprincess1963 in reply to Janinel159b]

hi janinel259b thanks for your reply. I forgot to mention my.lichen planus is in my mouth which is so painful to eat and drink I did read you can get it on your body as well sorry to hear you have been poorly it’s a horrible thing to have. I hope you are feeling much better ,I just have to find out which is best treatment for oral lichen planus it’s driving me mad at the moment.😔

[arTistapple]

Anything described as ‘lichen’ anything is really a fungus. It’s thought of as a sign of poor underlying health. Poor metabolism is what is considered to be a major cause of poor underlying health. Therefore it’s a very likely hypo symptom in my book.

What the specific remedy to deal with that is creating optimal thyroid treatment. Thereby lies the main issue. This is easier said than done for most patients seeking out the Forum. We just don’t get proper investigation and we don’t get proper treatment.

SlowDragon gives good advice. Try to sort out the possible gluten issue. Meanwhile because of eating difficulties caused by lichen planus in your mouth, you must aim to get it helped/sorted, even in the short term. Any help you can get from your GP (including coeliac testing - even if it says everything is fine) is important to establish. Not being able to eat or drink is going to undermine your health further.

As you have not given your recent thyroid test results, we don’t actually know the status of your hypothyroidism. Honestly I can’t trust the NFA I see next to my results time after time. Treatment (and respect) for hypothyroidism is very poor indeed.

[Purpleprincess1963]

thanks artistapple I take on board what you’re saying I will have to speak to the doctors next week and see if they can help, they actually haven’t seen me face to face since Covid it’s disgusting only a nurse or phone call 🤬I was gargling with salt water but then I read you shouldn’t so I most probably made it worse 🙄

[CatsofCatford]

I get it on my lips when my Vit d levels drop … when I start supplementing with Vit d it goes

[Purpleprincess1963 in reply to CatsofCatford]

Thanks I’m on the d vitamins for sure now thanks

[CatsofCatford in reply to Purpleprincess1963]

Hope it works for you too x

[Murgatroyd]

Hi I have underactive thyroid and then suddenly developed oral lichen planus about 10 years ago. Oddly it started after I had a drink from one of the springs at Glastonbury and I was also told that it was an autoimmune reaction to fungus! It did get really awful and I had ulcers all over my gums. My dentist prescribed Betamethasone tablets which you dissolve in water and use as a mouth wash. Also switched my toothpaste to a fluoride and non mint version and this did help to clear it up to a degree. My gums are generally bad though which I think is part and parcel of having underactive thyroid. You might want to avoid spicy food and alcohol for a while until it calms down a bit.

[Purpleprincess1963 in reply to Murgatroyd]

Thank you murgatroyd I know exactly how you feel. I actually did go last week when I think back I’ve got it the last time when I went which is strange.

[Ruby1888]

Hi, I have oral lichen planus too, you have my total sympathy as I know how painful it is. I've had it for about 4 years now and when I have active lesions on my tongue eating and even talking is agony. So I try to avoid the foods that cause lesions which for me are spicy foods like Indian, Mexican, Chinese and savoury snacks like crisps and salted nuts...so basically everything I love!! I tend to stick to chicken, fish, eggs, Greek salads, baked potatoes and chips. I was prescribed Betamethasone steroid tabs to use as a mouthwash to speed up the healing of the lesions and make it less painful. Hope this helps a bit x

[Purpleprincess1963 in reply to Ruby1888]

Thanks ruby1888 I have made a note steroid tablets you were given. I’m going to see if I can get them as well.

[Buddy195 Administrator]

I too tested negative for coeliac, but (like many with Hashimotos) am certainly gluten intolerant. I recommend you fully eliminate gluten for a couple of months to see if this benefits you.

[Purpleprincess1963 in reply to Buddy195]

Hi buddy i will try eliminating gluten. I think it will be hard for me at first but I will try and give it a go thanks.

[Buddy195 Administrator in reply to Purpleprincess1963]

You need to 100% eliminate all gluten for 2-3 months to see if this helps. Let us know if it helps!

[HandS]

hi, I had a v severe case of oral LP many years before I became hypo. It was so bad, I could not eat a thing without first using an anaesthetic mouthwash - which only worked for seconds at a time.

I was sent as an urgent next day appt to hospital and the consultant performed a tongue biopsy. Once results were back, my dentist was instructed to remove every trace of amalgam fillings from my teeth.

This took several months during which time I saw the Consultant regularly. As each area of my mouth was treated, the LP disappeared within weeks of the amalgam being removed, whilst the other areas remained covered in white lacy, agonising sores.

I was made a gum shield to wear at night. I was not discharged from the Consultant for 8 years and saw him regularly. There was never any spread elsewhere on my body. On discharge I thanked him for all he had done and his words were “when I first looked in your mouth, I could have cried for you. It was the worst case I had ever seen, but remarkably, also the most dramatically healed once the amalgam was removed.” I was alway surrounded by his students every visit!

if any of this is relevant to you, I recommend you see your dentist - it was dentist that got me into hospital the next day.

Just my experience - and I wasn’t hypo at that time.

I sincerely hope you can get treatment - it is an incredibly painful condition.

With best wishes

[Purpleprincess1963 in reply to HandS]

hi hands, I actually had my amalgam fillings removed years ago but I do seem to get this problem when I have a lot of dental treatment so I don’t know if there’s a connection but the ladies on here are saying about Lo vit d connection as well. I feel like for you what you went through 🥺

[HandS in reply to Purpleprincess1963]

I think I was lucky that the tongue biopsy identified a link with the amalgam and the treatment worked - and also because it didn’t spread - which was something that was checked for 8 years. I have had only mild flare ups that have not lasted.

LP must have a complex variety of triggers which are difficult to isolate and therefore people are often treated symptomatically .

I think I have been fortunate - touch wood! - and in my case it seems to have been unrelated to my thyroid issues.

I hope you can find relief and good treatment.

[Pandora70]

I was referred to the local University dental hospital and was told it’s an auto immune condition - ironically a few years before I became hypothyroid. The consultant linked it with familial Rheumatoid Arthritis and Asthma and said stress would exacerbate it.

The consultant recommended Aloe Vera toothpaste and mouth wash. Avoiding alcohol based mouthwashes is important. Also whitening toothpastes are best avoided. I have been prescribed a steroid spray when it really flares up.

I also use products from Oralieve which are very mild and soothing:

oralieve-direct.co.uk

A really painful, miserable condition - I hope you can find some respite from it.

[Purpleprincess1963 in reply to Pandora70]

thanks Pandora 70 I do use aloe vera toothpaste and I stopped using my whitening toothpaste as I thought this might make it worse . I will try anything which i think may help .

[Popoff]

Hi, i also have lichen planus. it depends on many causes. and it is normal for lichen to reappear from time to time. There are ways to manage this conditionsIt, but it would be wise to consult your GP or dermatologist for a formal diagnosis and management. I hope this helps.

[1Florie]

Hi I also have oral LP. it developed before I had medication for my thyroid ( I had part of my thyroid removed) After receiving Steroid ointment ( which was almost impossible to apply) for 2 years at my local hospital I was told there was nothing more they could do and live with it. Fortunately for me a lady I was working with at the time was studying homeopathic medicine and suggested Acidophilus Bifidus (forgive my spelling). Must be the Bifidus strain. It takes time to work but, it does work for me especially if I have to take antibiotics. I am also Gluten free my tests were negative but I feel so much better not having gluten. Hope this helps.

[Dhalialover]

Hello, I also have this and I was diagnosed with erosive lichen planus by a Maxillofacial Consultant before hypothyroidism. I sympathise as no one can understand the pain, especially because when it flares you cannot bandage your mouth and not use it for a week!!!! For me it is definitely linked to anaemia. It is like my mouth warns me I need iron. Gluten, spicy food, vinegar, ketchup etc and crunchy dry foods are to be completely avoided. Also chocolate and high sugar foods flare it so there is a candida link so I only eat those things if someone treats me and it would be rude to decline. I take Betamethasone mouthwash on prescription when there is a bad flare, but Corsodyl mouthwash is just as good, but since finding BlueM fluoride toothpaste I don't need it as often. GP's are useless and do not understand. It was my dentist who referred me to the consultant who was horrified at the state of me and I actually needed surgery to remove a small section of my inner cheek that had become precancerous. My GP had just told me to not eat crisps for years, despite never eating them as I have never been into crisps, so maybe ask for a referral. I hope this helps.

[CoeliacMum1]

Have you been tested for any associated conditions eg Sjögren's syndrome which I guess could exacerbate things in the mouth.

Apart from what many others are saying re Vitamin levels etc have you ever considered any more natural less harmful to the mouth preparations? Not the general prescribed types that most dentist advocate, the ones free from SLS’s, Flouride even menthol if that irritates you.

I was getting constantly a sore mouth and gums after eating. I don’t knowingly have any conditions to pinpoint this problem for any treatment as such. However both myself and my husband ditched all flouride toothpaste types the Oral B, Colgate and similar types last year, tried various ones and settled on Gutology (on subscription as cheaper) and remarkably my mouth is very much better. I had been getting increasingly worse gum disease according to dentist but no bleeding when I brushed. I thought it was a perimenopausal symptom, but husband was also getting some gum issues too lately…and the dentist wanting more deep cleans after my first ever deep clean 3 years ago, it took months for my teeth stop being on edge and irritation, it didn’t take much at all to get a sore and itchy irritated mouth… although I do get various allergies and this could also be exacerbating my problem also …I refused other deep cleans.

After 2-3months I had my routine visit to dentist dreading a basic clean at least but she was very surprised and inflamed gums were minimal and asked me had I changed anything as much better I didn’t tell her regarding this toothpaste , in case got lectured on flouride safety 🙄 but said I that switched to electric toothbrush.

I do have 3 amalgam fillings and she wants to take out and refill one (I've told her I’d prefer to lose the tooth) as wish I never had them in first instance. I am leaning towards the thinking now these things for some, well many, they are not safe, especially those with many sensitivities and autoimmune problems… in fact could they be contributing to getting these autoimmune conditions, although dentists harp on safety of these fillings along with flouride (known neurotoxin at certain levels) but that’s another subject altogether to address… but for some, I think we are getting too much of these things in other areas and doesn’t help us at all… so I myself for now try to keep various exposures to a limit .