Hi all,
Having a grotty week of face/neck pain, (wondering if I have dental or sinus issues again), mild flashes of tongue sores and first-bite syndrome type discomfort with saliva being noticeably different. I also had uncomfortable eyes, but I struggle with dry eyes & put it down to hayfever etc.
In trying to find a solution, I spotted research connecting thyroid disease (Hashimoto’s) to parotid gland issues?
Has anyone else had this?
As always, thank you in advance 🙏
Have you managed to get next increase in Levo yet
Previous post shows low thyroid levels
healthunlocked.com/thyroidu...
sciencedirect.com/science/a...
Enlarged salivary glands are common in patients with hypothyroidism but this finding is not widely appreciated. Although chronic painless enlargement of the salivary glands was reported in papers published 50-60 years ago, mainly in German, it is not mentioned in current textbooks on the thyroid. Along with the parotids, the submandibular and especially the sublingual glands may be quite enlarged, and the enlargement can be a useful clue to the diagnosis of hypothyroidism. The gland enlargement regresses at least partly after thyroid replacement therapy.
if GP won’t increase you may need to see endocrinologist
Roughly where in U.K. are you
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
thyroiduk.org/contact-us/ge...
Hi SlowDragon,
Despite contacting my GP twice since I provided them with my private results, I’ve had no response about my dosage, the frequency of blood tests or preventative treatment for migraine (another flare has just started).
My NHS Endo appointment is this Thursday so I hope things will change at that point.
I physically felt a lump from inside my mouth - where the parotid gland is. I had a nasty parotid gland infection 18months ago (before Hashimoto’s was diagnosed) so this may not be new & I wondered if it was autoimmune.
I live in Herefordshire. I’m waiting to see how Thursday goes first. This possible parotid gland/saliva issue has confused me a bit.
I’m not used to not being able to push through an illness. I take it easy for a few days & then go out for a few hours & have to come home to bed, feeling awful again. It’s like self-help isn’t enough?
Thanks again, the information on enlarged salivary glands is helpful, will check the link again x.
My NHS Endo appointment is this Thursday so I hope things will change at that point.
Ask for next increase in dose Levo and be prepared to push
Have list of ongoing hypo symptoms
Also print out copies of NHS guidelines ready to quote if necessary
cks.nice.org.uk/topics/hypo...
bnf.nice.org.uk/drugs/levot...
nhs.uk/medicines/levothyrox...
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
sciencedirect.com/science/a...
The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.
Hi Oatsforlife,
There is an awful cold/flu bug going round as well as high pollen count. These can exacerbate symptoms of underlying health conditions. I've just had an excruciating painful face with sinusitis, thought I might need some teeth extracting.
Hashimotos can certainly cause dry mouth and eyes but you might also want to look at Sjogrens syndrome (Rheumatology). I have Hashimotos and Sjogrens. The Sjogrens flares up when I'm run down or when GPs have experimented with lowering my Levothyroxine.
Hope you feel better soon.
Best wishes,
Stickybiscuit
Thank you for sharing that.
Yes, I took some antibiotics that I had left over from a previous sinus infection and it helped to get the swelling down. It’s so tricky knowing if it’s teeth or not. But this time, I noticed the change in saliva.
It’s interesting that your flare-up is linked to thyroid treatment. How was your Sjogrens diagnosed and who diagnosed it? Can they treat it?
Thanks again x
I was referred to Rheumatology because of muscle and joint pain. I had a blood test which showed that ro antibodies were present. They also had me spit into a cup for about 5 minutes and poked blotting paper in my eyes to see how dried up I was. Not very glamorous.
As I'm not really badly affected by Sjogrens, I don't have any treatment for it. You can buy eye drops or bathe your eyes, gently massage your meboiam glands or use a hot compress on your eyes to melt any solidified tears.
You do have to look after your teeth and gums really well too.
Ah, I see - not nice! - I don’t have muscle/joint pain often. But I have seen the optician & dentist a lot in the last 2years!
It could be that it’s linked to hypothyroidism, as the SlowDragon information suggested. It’s just all very confusing & a ‘grey area’!
Take care x
I am also wondering if there could be a link. I also have hypothyroidism and in December had an ultrasound scan on my thyroid. The report came back with info about my thyroid but also said something was noted in my parotid gland possibly a cyst. I was referred to maxillofacial surgery but have only recently had my appointment through which is in June. I was not aware of any issues in that area and this was just picked up in the scan.
Thanks for sharing that - it sounds like there is a link - the glands are so close in proximity and if our lymph glands are affected by Hashimoto's then it seems logical. I don't remember any of my thyroid scans referring to the parotid gland but I guess it may not have been swollen at that stage. I hadn't thought about maxillofacial - so it maybe that the endocrinologist may not advise on it - but thanks to all the responses given to my post, I will ask about it.
Good luck with your maxillofacial appointment in June x
I suffered with chronic sinusitis, sore throat, general respiratory infections, & dental issues prior to taking thyroid hormones. I only have issues if I’m under medicated & my temperature is too low. Your GP & endocrinologist probably won’t understand the links between optimum dosage & your general health so you might need to experiment with self medicating THs & supplements to fix yourself.
Yes, same here - have had chronic sinus issues for years but everything else has piled on during the last 18-24months. You're right in saying the GP won't accept the links to dry scalp, dry eyes, mouth/tongue sores, parotid gland, neck pain or even migraine issues currently - they've said so. They will only discuss one issue at a time too - so I have no hope there.
It was the ENT consultant - who's been helping to improve my sinuses over the past year - who referred me to Endocrinology (not my GP) after 2 scans as he says it's just not acceptable for me to be in so much discomfort for such a long time. The limited information I can see on the NHS Endocrinologist suggests a diabetes specialism.....
I think, as SlowDragon says, I will probably need to go privately if the NHS consultant won't consider increasing my dose - or even monitoring blood tests regularly. I can only hope. At least I have more information and confidence behind me now - thanks to this fabulous group of people!
Thank you and take care xx
It’s ridiculous that GPs can’t join the dots!
Have you tried using a saline nasal spray daily? It’s been preventative for me, & also helps reduce my hayfever symptoms. Also antihistamines have reduced the frequency of severe flare ups so I rarely need antibiotics.
I self medicate thyroid hormones, currently just using Metavive supplements. I went on the advice from the forum re the essential micronutrients as I couldn’t afford a consultant fee as well. I get private blood tests occasionally, but mostly depend on how I feel to tweak dosage.
The advice on here is such a lifesaver! Good luck with your doctors, or ignoring them altogether!
Hi,
Yes - I use a nasal rinse daily & have a spray so it’s generally better than it has been but I still have flare ups. I’ve used antihistamines before but I stopped using them regularly because of side effects.
I had the weirdest experience at the NHS Endocrinologist today. He didn’t look at any of the results I took or read scan reports. I asked about my pain & referred to the ‘thyroid inferno’ that the scan identified twice and he didn’t know what ‘thyroid inferno’ meant. His view is that he listens to patient’s symptoms over blood test results, he felt I’d been put on a baby dose of Levo & prescibes T3 if needed.
My confidence slipped when he took bloods at 12.30 - I hadn’t fasted or stopped my Levo the night before, as I hadn’t anticipated bloods at that time of day! So I imagine my thyroid function will be ok….
Thank you for helping - have a good long weekend x
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