Dry Mouth

My mouth has been so dry now for over a year. I have had blood tests done by my GP who said everything was fine no presence of Sjögrens! However I thought that you needed a biopsy to confirm this! The strange thing is this only seemed to occur when I had my levothyroxine dose raised by 25 mg every other day! I am now in limbo and keep looking on the internet for answers but am worrying myself about the underlying cause. Would love to hear from anyone else who has had a similar experience.

[Mary-intussuception]

Have you had any tests to check your Adrenal function?

I used to have to carry water with me everywhere I went. Endo arranged Short Synacthen Test to check my adrenals first before I started my Levothyroxine. But results were ok. Been some improvement since on Levo, still have problems sometimes. I just have to remind myself to keep drinking water.

[MaisieGray]

What were the blood tests, and what were the actual results? There's no single test that will confirm a diagnosis of Sjögren’s, so the more tests that are positive, the easier the diagnosis; but if you don't test positive for autoantibody SSA, one of the clearest blood test markers for Sjögren’s, then the diagnosis is more difficult (although being negative doesn't necessarily mean you don't have Sjögren’s). A positive lip biopsy is considered by some to be the “gold standard” for diagnosing Sjögren’s but it isn't necessary if you've got a number of other positives, and indicators - for instance an ophthalmologist can look at the layer of tears on the front of your eyes, which if patchy could be a sign of Sjögren's syndrome; a spit test where you spit saliva into a cup over a five-minute period and the amount is then measured or weighed can be carried out; and your tear production can be measured by placing small strips of paper in your lower eyelid for five minutes to see how much of the paper is soaked with tears.

But there are other causes for a dry mouth as well - some meds can cause it, as can being a mouth-breather, diabetes, alcohol or smoking, anxiety etc etc.

[radd]

JewelsP,

I also have the dry mouth and have done for many years. At my lowest I also had glue like sticky saliva and suffered weird metallic tastes.

And I too was convinced it was because of a filler in my Levothyroxine but have been medicating WPThyroid for the last three years and still have the dry mouth which no amount of water will quench.

In 2016/17 I had all amalgam removed from my teeth and Guys Hospital Oral Medicine Clinic conducted over 50 tests for various antibodies including smooth muscle, gastric parietal cell, mitochondria, liver/kidney microsomal, hep2 anti nuclear, rheumatoid factor, Sjogrens .... all results were negative.

WBC, RBC , all nutrients, loads of lymphocytes & sub sets (way beyond my understanding), immunoglobulins, C reactive protein, ENA identity ... all within range.

Ultra-sound scans on right & left submandibular, parotid gland and others in face/neck area, and I even did the saliva spit test as described by MG above ..... all normal function.

Totally flummoxed, their next approach was to offer Nortripyline Anti-D’s and psychiatric counselling. It was at this point they eventually reduced me to tears. Now a days no doctor is willing to even discuss my mouth issues because they tell me I have been seen by the best doctors in the country. Never mind there has never been any positive outcome.

Like others on here my body was completely broken through years & years of long term undiagnosed hypothyroidism/Hashimotos. I am sorry I can not give you anything positive .... except other than my mouth issues, I have managed to regain a really good recovery with optimal thyroid hormones and nutrients.

If you type "dry mouth" into the search box at the top of the page, you will receive numerous hits.

[Hidden in reply to radd]

That is a dreadful situation Radd. You just can’t believe that after all those tests nothing was found! So sorry no wonder you were upset. Thank you for sharing.

[Hidden]

Thank you all very much for taking the time to reply. No I don’t think that I have had my Adrenal function tested maybe that is something to consider. The information regarding Sjogrens is very informative.

[Mary-intussuception]

It could be your Steroid inhaler. And you say you are on a high dose.

Do you use a spacer and rinse mouth well after each use?

(I've just seen one of your other posts.)

[Hidden]

Hi Mary yes this has crossed my mind to although I had been using a high dose steroid inhaler a long time before the dry mouth started. So again not sure if this is related. Thank you for your reply.

[wakeham]

Hi Jewels sorry to hear that you have been feeling so unwell! but I'm afraid my news is not a lot better but I hope it might give you food for thought ! I have had a sore throat for 10 yrs in fact I asked the GP to test for thyroid problems and that was when I was diagnosed with Hashimoto's disease which has over the years lead to an autoimmune disease of RA

I like yourself have had many test for the dry throat ,ulcers on the tongue and in the dry mouth, at the moment they say sjogrens disease. But I'm now on a lot more drugs as well as thyroxine so I don't think I'm going to get to cause. I hope that you have better luck Jewels. kind regards wakeham.

[Hidden]

Thank you for your reply wakeham. Having auto immune diseases is really rubbish isn’t it! The things that can go wrong as a result and the more drugs we have to keep taking is mind blowing! So sorry to hear that you have had so many issues to contend with yourself. I really hope things settle down for you.

[wakeham]

Thank you for your wishes Jewels , I really hope that the GP works with your blood test to get it right! But have they said that would send you to an Endocrinologist? If they do make sure you do some homework and find one with really good reviews! Because it makes a difference, all the best. Regards wakeham