Scalloped tongue : does anyone get a scalloped... - Thyroid UK

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Scalloped tongue

Sammymoat1986 profile image
50 Replies

does anyone get a scalloped tongue with thyroid I’m getting tests for my thyroid done as I’m getting some odd symptoms I have lupus already so I’m trying to work out if it is my lupus or it could be thyroid related thanks in advance

50 Replies
Aurealis profile image
Aurealis

I get it with hypothyroidism

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Scalloped tongue can be low thyroid/low B12

Restless legs often low iron or magnesium

Low vitamin levels are extremely common with hypothyroidism

Lupus is autoimmune and having one autoimmune disease makes others more likely

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Sammymoat1986 profile image
Sammymoat1986 in reply to SlowDragon

this is so helpful thank you so much I’m going to buy one of these tests for sure to at least put my mind at rest thank you again for taking the time to reply to me

Hedgeree profile image
Hedgeree

Hi Sammymoat1986,

Sometimes this can occur due to a deficiency of B vitamins or iron.

Do you have recent blood test results for B12 or an iron panel (including ferritin?) Check what your levels are.

There are other causes but these are the ones that I've been familiar with.

Best wishes.

Topaz21 profile image
Topaz21 in reply to Hedgeree

Hi I hope you don't mind me asking but my tongue , mouth & lips have been extremely painful for years It looks very similar to the photo. I have been told it is burning tongue syndrome but I don't know the cause. My ferritin is at the bottom of the range and I have been losing blood from what I think may be internal piles but having a colonoscopy in Oct as I had positive FIT test & high Calprotectin. The haemoglobin is ok but I'm wondering if the tongue problem could be the low ferritin and would like your opinion pleasex

Thank you. It would be wonderful if you have found the cause after so many years of pain.

Hedgeree profile image
Hedgeree in reply to Topaz21

Hi Topaz21,

I think possibly you meant to reply to Sammymoat1986.

Sorry but I can't suggest anything for burning tongue syndrome; I've not heard of that before.

If you have any recent blood test results you could make a new post and see what responses you get.

Hope you find an answer?

Good luck.

Sammymoat1986 profile image
Sammymoat1986 in reply to Topaz21

aww bless you I know how you feel I had low ferritin many years ago which actually went alongside my lupus ao I know how you feel the sore tongue is really depressing especially when you talk for a living! I will let you know when and if I find out what the cause of myn is :)

Topaz21 profile image
Topaz21 in reply to Sammymoat1986

Thank youx Sorry you have Lupus to contend with as wellx I have Adrenal Insufficiency. They are so difficult to manage. You never know which symptoms relate to which illness due to the miriad of symptoms.Take carex

Sammymoat1986 profile image
Sammymoat1986 in reply to Topaz21

I know that’s the thing isn’t it they all mirror each other and you don’t know which one is doing what, but we have to keep our chins up

Sammymoat1986 profile image
Sammymoat1986

I can’t get in to see my gp it’s pretty ridiculous at the moment I called my rheumatologist last week so hoping I’ll hear from them this week it’s awful it’s sore and I’m really off balance and jittery maybe it is my b12 from reading the symptoms thank you so much for replying to me :)

SlowDragon profile image
SlowDragonAdministrator

suggest you make an appointment with GP (or email them) and request they test thyroid including thyroid antibodies, B12, folate, ferritin and vitamin D

you could include tick list of all your symptoms as reason for the request

Souzy profile image
Souzy in reply to SlowDragon

I second SlowDragon's advice Sammy, getting an appointment with my GP is also a near impossibility so anything that has no symptoms, I write them a letter and hand it in over the desk. That's how I ask for blood test appointments that other consultants have asked for and how I send them results from other consultants/opticians or from a private thyroid & vitamin panel I did recently.

ETA - I keep a copy of any correspondence from my medical issues either on my computer (if I've typed it) or in a file - I didn't for a year and I've paid for that by not remembering things so since July this year, I've been like my own personal secretary.

Sammymoat1986 profile image
Sammymoat1986 in reply to Souzy

thank you I have an appointment with my rheumatologist on Friday for bloods so I’ll ask them when I see them it’s not nice feeling this poorly

humanbean profile image
humanbean

I get this, and I get a lot of improvement from B vitamins and iron, the same as quoted by several others.

If I give up my supplements for a while the problem comes back.

Buddy195 profile image
Buddy195Administrator

I’ve had this and it thankfully resolved when taking a good B Complex to improve my B12 and folate. I used Thorne Basic B.

Regenallotment profile image
Regenallotment

I get this too, upping my Levo dose and Thorne basic B seem to have resolved it (until I had a reaction to Aldi sausage containing sulphites last week and it swelled up again). Down again 48 hrs later though. Good luck with your treatment 🦋💚🦋

Boohbette17 profile image
Boohbette17

Hope you feel better soon.😊🌺 I have Hashimotos & it comes & goes .

Marymary7 profile image
Marymary7

B12 deficiency is a likely culprit as already mentioned. Don’t take any now until after your blood test as you will skew results with a false high and you will be told you’re ok. Need to leave off Biotin for thyroid blood tests too as used/involved with lab tests. Good luck😀

HornM profile image
HornM

Hi! My scalloped and swollen tongue resolved after addressing an iodine deficiency. Iodine is a controversial supplement in this community - it's necessary to ascertain it is required before taking it. I did a 24 hour urine test called 'Halide Profile'.

CoeliacMum1 profile image
CoeliacMum1

Yes, I had a very defined scalloped tongue… I have hypothyroidism/Hashimoto’s I’m on Levothyroxine & Liothyronine and have Pernicious anaemia and have B12 injections every 3months.

However my tongue is no longer scalloped but still on the large size and can press against teeth, even though all my levels are good now.

I’m sure there’s some correlation to thyroid & B vitamins possibly iron issues although helped probably not solved it completely with me.

Leaney profile image
Leaney

I have been suffering from a sore tongue for several years. My cause was a Zinc deficiency. My dentist picked it up when I complained about how sore it was. Sent me for blood tests. Doctor's comment was - "ha ha, we hear about this in medical school but it is very rare". Zinc is linked, among other things, to Copper. My copper turned out to be above normal but no one seems to know (or care) if it is that causing the zinc deficiency or the low zinc causing the copper to rise. After years of struggling, with high doses of Zinc supplements, to get it balanced I have found that whole grains block the absorption of Zinc. I am part way through, avoiding whole grains, to see if the zinc levels will come up. It takes a while.

humanbean profile image
humanbean in reply to Leaney

This link from Thyroid UK briefly mentions zinc...

thyroiduk.org/role-of-vitam...

There is a known relationship between copper and zinc. It is expensive to get it tested privately so I've only done it once, and my copper was above range while my zinc was low in range.

If a healthy person with well balanced copper and zinc was to start taking copper supplements the chances are high that if they tested after three months supplementation they would have high copper and low zinc. If they had taken zinc instead of copper they would have high zinc and low copper.

There is a see-saw relationship between zinc and copper for everyone. For people with thyroid disease the usual result is high copper and low zinc. I've only once seen a member say they had low copper and high zinc (and she also had low iron) but it was caused by some kind of genetic problem affecting ceruloplasmin. According to wikipedia :

Ceruloplasmin is the major copper-carrying protein in the blood, and in addition plays a role in iron metabolism.

Unfortunately for people like us with low zinc / high copper it is fairly common for zinc supplements to be sold which also include copper. If you know they are related but don't know the nature of the relationship this sounds like a good idea. But I doubt it is a good idea if your copper is already over range. And lots of multivitamins (which I would never take) have both zinc and copper too.

I just wish testing minerals and vitamins was a lot cheaper. *Sigh*

Souzy profile image
Souzy in reply to humanbean

I found out very recently that low zinc (or low magnesium or being hypothyroid) could be reflected in a low alkaline phosphatase level. We call it an ALP test in the UK, I think the US sometimes calls it an ALK test, although not in this link.

my.clevelandclinic.org/heal...

humanbean profile image
humanbean in reply to Souzy

That's very interesting. I'll take a look at my liver function tests to see what my ALP is. I know it varies a lot.

...

It's been as low as 9% through the range and has only once got into the upper half of the range at 54%. (I have 21 results from the last 12 years.) It was a while ago, and whether or not I was taking zinc at that time I really can't remember.

I think I'll buy some more zinc supplements and see if my ALP has gone up next time I test my liver function. :)

radd profile image
radd in reply to Leaney

Leaney,

I don’t believe a zinc deficiency in long term undiagnosed/unmanaged hypothyroidism is that rare. It’s just not usually tested so people don’t know. 

I was told zinc is used in the manufacture of TSH so if it’s continuously high then more zinc is used. Once zinc becomes low, then copper levels elevated naturally.

I successfully addressed my zinc deficiency with high dose liposomal several years ago, and tested again earlier this year to ensure levels remained stable which they have. Unfortunately my tongue issues still remain. 

Leaney profile image
Leaney in reply to radd

I can get my Zinc levels up with large doses of prescription strength zinc but it never stays up for long. I am now trialling giving up whole grains, which is what my GP suggested at the start (several years ago now!). I did try it but was not patient enough as I am leaving out wholegrains , and I presume that includes porridge oats (?) , again and things are improving. Given the need for wholegrains in out diet I am slightly concerned about it long term.

Jump2 profile image
Jump2

I have this too - and agree with all of the above comments . I’ve had the tests and take the supplements ( prescription iron and over counter supplements that so many of us take / are recommended here as many of us share similar deficiencies ) .

I never had a scalloped tongue till I started levo thyroxine and have also been thirsty ever since … I do think it improved slightly when my Endocrinologist added HRT and zink and lactose free levo to the mix but who knows 🤷🏻‍♀️ . But it remains something that’s gets better and worse at times .

Oral health consultant who I saw recently said it was common , not unusual, nothing to worry about etc . Which I didn’t find helpful !

good luck with GP and your specialist - I remain convinced that levo aggravate my tongue from day one and that certain brands that I took in my first year made it worse . Have you changed brand recently ?

humanbean profile image
humanbean in reply to Jump2

Perhaps it might be a good idea to find a new oral health consultant. :(

Jump2 profile image
Jump2 in reply to humanbean

Indeed , I just went along as the GP referred me ( who unwilling to accept it was thyroid or thyroid meds related- I did try and say I had read on multiple platforms that it was very common with thyroid patients … ). It was a one off appointment. As the dentist in the comments here says it’s common , can be teeth clenching etc . But I know I didn’t have it before . Yet again it’s reassuring to read about other peoples’ experiences here and in my case to to see an Endo privately to help navigate these things . It’s why I read these posts everyday , so much good advice .

Blearyeyed profile image
Blearyeyed

I've had this several times over the years.

I've just been diagnosed recently with Vitamin B12 Deficiency Anaemia.

As others gave said get the test for liver function , full blood count , Vit B12, Folate, Vitamin D , Ferritin and the Thyroid Panel.

Vitamin and iron deficiency and dehydration are the most common causes of scallop tongue. Having Lupus your body is constantly using up more water and vitamins to help heal itself and manage lupus inflammation. So its really common to get vitamin and mineral deficiencies even if you have a good diet , especially if your Lupus causes you stomach problems which can mean you absorb less nutrients from your food or any supplements you already take. You can be dehydrated internally even if you dont feel thirsty.

After the blood test start taking B12 and B complex as you dont want the supplement to affect the accuracy of your test . Take B12 with food but without Vitamin C foods or drink as this can affect the absorption.

The best Vitamin B12 supplement is one that is most easily absorbed , methylcobalamin. Holland and Barrett B complex supplement contains this type of B12.

If you find you are also anaemic Solgar Gentle iron is the best iron choice , it is less complex than Ferrous products and is already active so its gentle on the stomach and doesn't cause constipation. Take iron at a separate time to your B complex after a meal because its better taken with Vitamin C.

A vitamin and mineral complex supplement and additional Vitamin D and Magnesium are also beneficial with Chronic Health issues.

Other causes of scallop tongue can be hypothyroidism ( unfortunately when you get one Autoimmune condition you can often get others) , but it can also be caused by general mouth inflammation , TMJ ( jaw misalignment), mouth infection and even Anxiety or Sleep Aponea which can cause you to start grinding your teeth or accidentally biting your tongue in your sleep.

Vitamin B 12 deficiency anaemia or Pernicious Anaemia are common with Chronic health problems , you can get injections for these which do make many of the issues like Fatigue , Pain and Mouth and Stomach issues much better.

Drinking iced water throughout the day, as well as helping the dehydration , helps bring down the swelling .

Green tea ( with or without natural flavourings) can help clean the mouth while your tongue is inflamed as mouth wash can hurt.

If it turns out you could be catching your tongue a mouth guard at night helps some people. Having a dentist appointment would also be a good idea as they can check for any jaw issues or gum inflammation.

Mariajane73 profile image
Mariajane73

Hi Sammy this is because your tongue is slightly swollen and the scallop marks are from your teeth. It’s generally inflammation x

Scavaig profile image
Scavaig

hi. I’m a dentist. You have what we call a ‘pie crust tongue’. It’s caused by grinding/clenching your teeth at night, but other factors will be involved. The posh term for this is bruxism. It is sometimes caused as a reaction to stress, but can be caused by other things. I agree with the other comments, but Have a word with your dentist - there are things they can do to help.

I agree it’s very common, it is said up to 50% of the population my suffer from bruxism, and yes, in itself it’s not dangerous. Hope that helps.

Sammymoat1986 profile image
Sammymoat1986

thank you so much to everyone who has replied it’s been a huge help and I’m going to book an appointment with my gp, scavaig I have been to the dentist for grinding my teeth and they gave me a guard so that’s why I was wondering if it was something else

Scavaig profile image
Scavaig in reply to Sammymoat1986

ah good, yes a night guard is normally a help. As I said, normally people grind their teeth at night - so dentists say wear the guard at night . However, people may also grind / clench their teeth throughout the day as well, so it might not be a complete cure - but please persevere 👍if you find yourself doing that try to relax😉- as I say it’s an incredibly common problem. I hope you feel more reassured - just to say - there will be periods when you feel more stressed when the bruxism is worse, but times when you don’t feel so stressed it won’t be so bad. Hope that helps .

knackersyard profile image
knackersyard

I had that for years. Tongue felt too big for my mouth. Scalloped all round with raw smooth patches on top. Blood tests repeatedly showed deficiencies in Vit D & B12 and TSH up to 11. As a male, my Thyroid was ignored & only after my pushing was I given a “trial” of Thyroxine.

I now treat myself with Vit D & B12 and NDT (Thyroid-s). The good news is my tongue is now completely normal. I never thought those smooth raw patches would heal, but they did. So yours should too.

Digger0 profile image
Digger0

A pale, scalloped tongue indicates dampness within the body – which, in Traditional Chinese Medicine, is “considered to be the cause of many illnesses such as metabolic disorders...." eg Thyroid!

Batty1 profile image
Batty1

that’s what my tongue looks like.

Sammymoat1986 profile image
Sammymoat1986 in reply to Batty1

I can’t believe how many replies I’ve got I feel so greatful I thought I was going mad and feel like a lot of symptoms are in my head I felt gaslighted before my lupus diagnosis and feel a bit the same now but I’ve learnt to listen to your body and know something is wrong I have a list of symptoms I’ll let yous know how I get on thank you again xxx

tcpace profile image
tcpace

One of the first things the late Dr Skinner asked my daughter to do on her first consultation with him was to stick her tongue out. That, amongst other things ignored by mainstream endos, convinced him that she was hypothyroid despite her blood tests being "normal".

Kimkat profile image
Kimkat

I have had scalloped tongue for as long as I can remember. I’m hypothyroid now but have also been hyperthyroid, even when I had no symptoms of either my tongue was scalloped so it could be something else.

helvella profile image
helvellaAdministrator

Sometimes the term is used synonymously with Piecrust tongue.

A swollen tongue can become quite painful.

A simple open pastry pie with scalloped edge
JOLLYDOLLY profile image
JOLLYDOLLY

I think you are likely to have a B12 deficiency, you need to get your folate and ferritin levels checked. It could also be pernicious anaemia. I had it before I was diagnosed and my tongue was similar to yours and also swollen, kept biting on the darn thing and there seemed to be a white coat on it. I also have vitamin d deficiency and at one point iron anaemia. All these conditions can walk hand in hand with thyroid conditions. You most probably need a full panel of blood tests and not the ones, I mentioned above. Hope you can get all the tests done soon.

Eddie83 profile image
Eddie83

I had what was termed "geographic tongue" big-time when I was severely hypothyroid (TSH up to 20). Looks much better now, but I still have a couple furrows which could be permanent because I was hypothyroid such a long time.

Jackobee profile image
Jackobee

I have an under active thyroid and have suffered with a scalloped tongue but this was put down to low b12. Hope this helps

babsi profile image
babsi

I found this:

It’s got so many different causes, and many are thyroid issues.

goldenstatedentistry.com/bl...

healthymarge profile image
healthymarge

Hi Isn't it just terrible that we with a thyroid problem are not really fully supported by our GP's. My TSH just keeps going up and down and my doctor just says increase/decrease my levothyroxine accordingly. I had an ultrasound of my thyroid and the radiologist said she could not see it and it must have just shrunk! My doctor made no remark on this result! My tongue is permanently scalloped and bright red at the tip and sometimes sore so I totally relate to your symptoms. I'm going to get a food tolerance test done as it could be due to something I'm eating. Does anybody know what a good ferritin blood test result would be. My latest is 67.5 (10-291). TSH is 0.32 (0.33-4.8). Cholesterol always high at 6.39 (0-5) LDL 3.33 (0-3). Many thanks!

Sammymoat1986 profile image
Sammymoat1986 in reply to healthymarge

good luck with your food intolerance test I really hope you get some relief it is sad when your doctor made no remark I feel sorry for you it’s a constant battle with chronic Illness

Sammymoat1986 profile image
Sammymoat1986

to be honest I think from reading etc my tongue is more likely b12 as I’m really off balance and got the most pale lips and just feel so rubbish

Sammymoat1986 profile image
Sammymoat1986

so rubbish when you don’t know what’s wrong and it takes weeks to get an appointment im getting seen this week for my results thank god

This is my Lips currently they look almost blue
klr31 profile image
klr31

Check your B12.

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