Dry mouth and sore tongue

[sapphiresam53]

I wonder if anyone can help, I have an under active thyroid and I take 50mg thyroxine my mouth and tongue is sore and I have ulcers also a dry mouth , just wondering if there’s a connection.

[greygoose]

Could well be, yes. How long have you been on 50 mcg? That is just a starter dose. Do you have a copy of your latest blood test results? If so, post them here, with the ranges and let's have a look.

Have you had your nutrients tested: vit D, vit B12, folate, ferritin? Low nutrients could cause problems like that, so essential to get them tested.

[sapphiresam53 in reply to greygoose]

Hi , I’ve been on medication since November, I was supposed to have an appointment in December, then January, now it’s a phone appointment at the end of May. I’m going to pay to get a blood test and will certainly check my vitamin levels. Thank you for your info

[greygoose in reply to sapphiresam53]

Of course, the present situation does make things extra difficult, but your doctor should have retested you six weeks after starting the 50 mcg, and increased the dose by 25 mcg. He had plenty of time to do that before lockdown.

[knackersyard]

I suffered for years with a sore swollen tongue. Raw patches & too big for my mouth.

I was “sub clinical” Hypothyroid, but also Zinc deficient.

I’m now on T3 (as repeated tests showed I don’t convert T4 at all), but also take ZMA at bedtime. Tongue is now fine. Not had the problem for years.

[SlowDragon Administrator]

50mcg levothyroxine is only a starter dose

When were thyroid levels last tested?

How long on 50mcg ?

Bloods should be retested 6-8 weeks after each dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

[sapphiresam53 in reply to SlowDragon]

Bless you thanks for the info, I’ve been on the 50g since November, I was supposed to be seen by the endo in December, they keep cancelling so now it’s late May. I’m going to try for a private blood test and check all that you’ve suggested. Thanks again

[SlowDragon Administrator in reply to sapphiresam53]

Your GP should put dose up....extremely rare to get referred to an endocrinologist at this stage ...

See/contact GP and politely insist of thyroid testing including thyroid antibodies, vitamin D, folate, B12 and ferritin

Come back with new post once you get results

[puffyface]

Ask at your chemist for dry mouth pastilles...they help you to produce saliva. Also ask your doctor to check this. Do you have autoimmune thyroid issues...ie. Hashimotos? They might look into Sjögren’s syndrome which has dry mouth and sore tongue as one of its symptoms. I hope you feel better soon.

[Thyroidmeg]

I’ve got a dry mouth too I’m on 200mcg levothyroxine . I also have but d3 deficiency and dr prescribed gel caps

My Ferritin was really low 11 but haemoglobin was ok so they didn’t treat that

[pennyannie in reply to Thyroidmeg]

Well that ferritin level surely needs attention - I read no thyroid hormone replacement works well unless ferritin is over 70 :

My ferritin was flagged when at 22 and I was feeling very unwell - hope you're now supplementing .

[SlowDragon Administrator in reply to Thyroidmeg]

Thyroidmeg

Suggest you put up a post of your own with your thyroid and vitamin results

....ferritin is far too low

Your GP should do full iron panel test for anaemia

irondisorders.org/Websites/...

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Helpful post from earlier today by humanbean

healthunlocked.com/thyroidu...

[Thyroidmeg]

I’m due another test soon and will put them up then. I knew it was too low so asked to see doctor (I’d read that to avoid hair loss ferritin should be over 70) and he looked at my hair said it’s fine. Yeah I know I need a decent dr🥴

I’m not taking anything for it just now tho?

[SlowDragon Administrator in reply to Thyroidmeg]

You shouldn’t start any iron supplements without getting full iron panel test for anaemia first

But can look at improving iron in diet

[Thyroidmeg in reply to SlowDragon]

I’ve been having red meat more since last test and spinach etc. Got blood pressure meds too

[humanbean in reply to Thyroidmeg]

The idea that spinach has special properties with regard to its iron content is a myth. And apparently there is more than one myth surrounding spinach. I just did some googling on the subject and it seems the stories about iron in spinach and how they originated are more complicated and confused than I realised.

This site is worth reading :

dailyiron.net/

For info on the iron content of different foods see this link :

apjcn.nhri.org.tw/server/in...

...

Personally I get a sore mouth when I run low on iron, vitamin C and any of the B vitamins.

...

There is a condition called Sjogren's Syndrome which is an autoimmune condition affecting the moisture producing glands all over the body :

en.wikipedia.org/wiki/Sj%C3...

There are tests for the condition if you think it might fit your symptoms.

[pennyannie in reply to Thyroidmeg]

Hey there Thyroidmeg

Asda sell very clean tubs of frozen chicken livers. I flash fry in a little olive oil and then whizz down into a soft mixture with a dollop of mayo. I use 1 tub a week, eating a spoonful for breakfast most days.

When my ferritin was low at 22 I couldn't even stand for too long to cook anything, but managed this little task, and it helped me start to build up my strength again.

I couldn't tolerate the NHS iron supplements and wasn't offered an alternative to ferrous sulphate so I also supplemented with Solgar Gentle Iron and purchased liquid iron sachets from Spatone. - it took a while to build but so needed as then my thyroid hormone replacement, and my brain seemed to kick in at roughly the same time.

[Timetraveler67]

I have been suffering with repeated ulcers on my tongue also I get sores inside my nose and lots of blister type spots inside my lower eyelids. This has been going on for over 20 years long before I was diagnosed with autoimmune thyroid disease. There so painful and take ages to go, then I have a break from them for a couple of weeks before it all starts over again. I treat with sea salt mixed with warm water that’s the only thing that seems to help. Sorry I don’t have an answer for you but I wanted to share that I also suffer these problems. I hope you feel better soon x

[hyggirl]

Hi sorry to hear about your symptoms. There is an excellent product range called oralieve which is designed for dry mouth, gel, spray , mouthwash, toothpaste. You can get it direct but it is now also on amazon.

[sapphiresam53 in reply to hyggirl]

Thank you

[RoboTh]

This is my worst symptom and it drives me insane. Definitely linked to hypothyroid and low ferritin. I have both

[RoboTh in reply to RoboTh]

I've tried salivix pastilles but I could use one pack a day and it doesn't really solve the issue just masks it