I’ve read something on here recently about Sjögren's syndrome and thought I would look it up.
I’m hypo and one of my main symptoms is dry eyes for which I have been prescribed drops for many years now. They get worse towards the end of the day sometimes getting bloodshot on the inner corners and it gets hard to focus even with my glasses on. I was also diagnosed with asthma many years ago which I have always disputed. My nurse feels the same and sent me for a scan which showed I have bronchiectis. I am prone to oral thrush which I have always put down to the inhalers and also have a dry mouth but I’m wondering now if I could have Sjögren's syndrome. I also have vitiligo which is an autoimmune disorder. Any advice would be welcomed.
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I have similar symptoms I recently had a test done it came back neg. but still have the symptoms, from what I can make out even when you test neg you can still have it. But if it's positive youve definitely got it?? Anxiety makes mine a lot worse, also I can't cope with meds they dry my mouth out even more, recently had an oral fungal infection. I manage mine now with salivex pastels, glandosane spray, gum and a throat spray which I got from my gp. I also use eye drops and ointment daily and try to keep hydrated even though I find water doesn't help my mouth when it's bad. I never used to suffer from my chest but I do have phlegm and a cough now, which I presume is to do with it. I have never felt right since being diagnosed with an underactive thyroid and was told I had fibro, so I think all these thing are definitely connected.
Sorry to hear that you are experiencing similar problems. You begin to feel like a hypercondriac with all these seemingly insignificant things which added together are quite significant. Let’s hope that we find some answers and begin to feel better soon. X
I bought the eye mask suggested in the video from Boots. The stuff I use to clean my eyes is Blephasol, which I also buy from Boots. It is also sold by Amazon so you can read reviews of Blephasol there. The eye drops I use are preservative-free and are called Hycosan Extra. I've seen them for sale in lots of places.
My nose gets very dry too, and I use something called Nasogel by Neilmed for that.
I use ordinary olive oil drops in my ears at bedtime when necessary, but although it helps it is not very good - far too messy! I need something better.
The one thing I haven't found any treatment for is my mouth. My teeth are suffering from the lack of saliva, I think I have oral thrush, and I get loads of mouth ulcers. Other than being extremely thorough with teeth cleaning and tongue cleaning, I don't know what else I can do. Mouth washes all dry my mouth even more, and make ulcers worse.
Thanks humanbean a very interesting video I’ll have a look for the eye mask to see if it helps. I have drops from my doctor but they don’t seem to prevent the discomfort.
My nose has become dry of late too though I have post nasal drip so it used to run a lot and I have a spray to use from my gp.
I also have a solution from my doctor for the thrush call nystatin which is very effective perhaps you could ask your gp for some.
My nose ran for years when I used to walk my dog (now deceased) every day. Exercise, wind, and the cold made my nose run like a tap. In fact fairly average temperatures would make it run too - it would only stop if it was very warm indeed.
But nowadays, even that amount of moisture seems to be too much, and my nose dries up and scabs up pretty much all the time. Not having to walk a dog any more has been very helpful in minimising the scabbiness. (I do wish I was well enough to have another dog.)
I have had similar problems apart from the dog. Mine is the best part of my day. Getting home and taking her for a walk. I’m sorry you’re not well enough to have a dog in your life and truly hope that you will be soon. X
I am really sorry to read you are in such discomfort, I know only too well what it is like to have all these various problems going on and also not getting much satisfaction from the Medics actually I know I am looked at as a crank by some of them. Anyhow for your mouth problems, I would strongly advise finding a really good dentist and getting that sorted as in the long term a sore mouth will lead to bigger problems when you cannot eat properly. I had oral thrush and found Daktarin mouth gel really good if used properly also cutting back on sugar helped and taking a probiotic when on antibiotics as they seemed to cause a flare-up in my mouth. I too found mouthwashes only make things worse so I now use green tea as a mouthwash and it works especially after an extraction along with a spoonful of honey put on the tooth socket the last thing at night. I do hope you feel better soon Best wishes
It wasn’t so awful of me. Mine was only sore for a few days after and 100% positive for Sjögren’s so gave me the clarity I needed. I have a neurological presentation very like MS so I needed the clarity. Many self diagnose because there are no effective medicines - just topical treatments of the type mentioned in comments here.
If you have Sjögren’s as a systemic disease then there is a disease modifying anti-rheumatic drug called Hydroxichloraquine that a lot of people benefit from - but not for the Sicca.
Officially only a rheumatologist can diagnose Sjögren’s so many confuse Sicca with Sjögren’s. Sjögren’s is a full blown autoimmune disease and not just Sicca Syndrome - it can make you very ill. You can have Sicca Syndrome with any rheumatic disease or hypothyroidism. It’s less common as a stand alone disease but is thought to be very under-diagnosed. I have both diseases but Sjögren’s is much more debilitating - hashis reasonably well controlled within 125/150 mcg Levo.
Well I say it is but if I post my thyroid bloods here everyone tells me otherwise. I think Hypothyroidism is often blamed for other stuff going on but of course our bodies aren’t just a sum of parts - they have to work in harmony so thyroid is just part of this.
The endo explained that Sjögren’s is much the more serious autoimmune disease and the Hypothyroidism is just a straight forward minor partner. I choose to believe him but I add in extra 25mcg Levo every few days - or more if I feel I’m stiffer and more sluggish than usual and that usually does the job. Involves a few white lies on repeat prescription comments though eg “been on holiday (if only) and somehow lost my package of 25mcg?” Lol!
I can tell the difference now though between hypo related fatigue and Sjögren’s. This is a good link which puts what I’m saying about fatigue in perspective I think:
Thanks I will take a look. It sounds like you are on top of your symptoms and know how to improve things which would be lovely. My gp told me I might never feel well.
Ha ha - I walk with a cane and have severe fatigue, neurogenic bowel disorder and other MS-like symptoms so you’re wrong about on top of things!
If you are on the right dose of Levo or T4/T3 or NDT or whatever, Hypothyroidism should be well controlled and shouldn’t be causing your problems - it isn’t a systemic disease like rheumatic diseases are or neurological diseases like MS.
No of course not - but I would say that, with your existing autoimmunity ie vitiligo and hypothyroidism and bronchil issues you aren’t wrong to look beyond hypothyroidism for answers. However I would add that, although having clarity is great - and stops us taking too many dead end roads, false trails - if you have Sjögren’s you shouldn’t expect any treatments to really help. Unlike thyroid disease or diabetes it’s fairly untreatable so the fatigue etc is usually just ongoing and somethimg you will have to manage as best you can.
Hope this doesn’t sound too depressing but Sjogrens is very different to hypothyroidism and uniquely isolating and untreatable as yet. You can’t just stick your blood results up on a forum for discussion like people do here for example.
Ps of course I’m not saying you don’t have Sjögren’s - but you should get properly checked by rheumatologist not just presume you have it as some are advocating. Also i’m responding to some of the more ignorant comments people here and on another similar post on here have made about self diagnosing, lip biopsies and there being no treatment for Sjögren’s anyway etc. If you think you have it then push hard to get it officially diagnosed - it’s a complex, multi systemic autoimmune disease!
The more people learn and get properly diagnosed the more research, trials and awareness raising will help us sufferers. X
Thanks for the advice. It’s a shame there’s not a program at the doctors that links all the seemingly minor problems together and points gps in the right direction. Maybe then we wouldn’t have to find our own answers. X
Yes I agree. Even some of us like me with serious problems such as kidney involvement or nervous system involvement are often treated for each thing in isolation. This is why I get so annoyed and frustrated when people confuse relatively minor Sicca with full blown Sjögren’s.
Theres obviously more research needed for me. All I want and I’m sure we all feel the same is to feel well again. The medication I’ve been on doesn’t seem to make any difference so I guess I was looking for answer elsewhere.
I come across so many people who turn out to be hypothyroid (the most common form of autoimmunity I think?) but just take Levo and never give it another thought because it works for most people. So if it’s not working for you then it’s probably because you have something else going on as well - so you may right to search elsewhere. Good luck!
I'm booked in for my lip biopsy on the 20th November and I see the ophthalmologist the Friday before. My blood tests were also negative, so we'll see what transpires!
There is a nonavasive test for Sjögrens. Don't remember what it's called. Thought about taking it because wasn't too excited about the biopsy that could have some adverse effects. Skipped both eventually since the diagnosis would not change anything
It could change things if you had Sjögren’s diagnosis actually - the more that are properly diagnosed the more it’s understood and researched and you can be monitored for glands, organ or nervous system involvement. Each to their own but you have to be sick enough to feel the need to know enough.
There is really only treatment for topical symptom relief. I have dry eyes and mouth some, but have found good eye drops, VitK3 and Niacnamide vit B3 that all help. B3 in high daily dose really helps with all possible neurological and also tissue symptoms. Have no wish to be monitored😉
Okay well if that’s all you have wrong then you probably don’t need to be monitored or try disease modifying drugs or have your parotid glands checked for non Hodgkin’s Lynphoma - and that’s fine as long as it’s not self diagnosed as Sjögren’s.
But until Sjögren’s is recognised as a relatively common and potentially serious rheumatic disease, those with it in severe systemic form won’t get the help or support we need.
And B3 hasn’t helped my neuropathy, nor has B12 or vitamin D or any supplements or any of the autoimmune diets. And believe me I’ve tried it all!
Those who are properly tested diagnosed usually get offered Hydroxichloraquine which actually does help some people - as can Pilocarpine if tolerated.
I took a high dose of B complex when neuropathy first started - it did nothing because my neuropathy isn’t due to a B deficiency - my rheumatologist initially diagnosed RA and I was asked to stop self administering after 6 months. Now I know it’s Sjögren’s related - probably root canal treatment but I’ve had autoimmunity since I was a young child.
• in reply to
Ps i ran all sorts of tests on myself privately for the first few years of all this neuro stuff. It is too late now as much damage has already occurred but I monitor my bloods very carefully and read a lot.
I am taking a 4g daily dose of niacindamine, plus B komplex for the rest of the Bs. 4g is the clinically effective dose. I am taking it also for my joint issues. Good research results on this😊
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
If you have Hashimoto's, which is likely as you also have vitiligo then are you on strictly gluten free diet?
I agree with humanbean regarding the eye regime, my eyes were very sore and irritated this was a while before my doctor considered I could have sjorgens, I went to my opticians, she already new I suffered from dry eyes but could see blepheritus this time and referred me to a specialist. The outcome for my eyes is as humanbean described except I use simple eye ointment at night which I find soothing. maybe a check up at the opticians might be helpful ?
My husband has dry eyes worse than mine, and he used simple eye ointment, but he's been unable to find it for sale anywhere for ages. So now he uses vita-pos :
which he has to buy online because he can't find it in shops anywhere. Where do you get simple eye ointment from?
The problem I had/have with both simple eye ointment and vita-pos is I can't get the damn stuff in my eyes. It curls up into a lump and won't go into my eye. My husband just laughs at me and gives me useless advice, so I get nowhere.
Please consider going gluten free; Sjorgen’s is also an autoimmune disease and from the sound of it you may also have Hashimoto’s which is autoimmune too. Surprising all autoimmune function is controlled from the gut and gluten is a #1 irritant.
Your GP won’t tell you this but it’s worth trying - cut it out for a month and I’d be surprised if you don’t see any benefit. (Gluten is a protein found in wheat, barley and rye).
I’ve got Coeliac Disease so have no choice but to avoid gluten; yes it was daunting but that was 15 years ago, it’s quite easy now. I was then diagnosed with hashis then went hypo and have been in just 25 Levo for 3 years now. I think I was “lucky” to get a CD diagnosis first thus avoiding gluten for a long time now because from everything I’ve read it (gluten) is evil. I was tested for Sjorgens a few years ago but was negative. Unfortunately there’s about 100 of these autoimmune diseases and if you have one so are more likely to get another; joy xx
I decided two years ago to go Gluten and Dairy free and I havent looked back even my Drs were surprised at how it helped to control my inflammation and improve my OA ,RA and Fibo, its not as difficult as you might think and I agree 100% that all problems start in the gut so look after that and your health will improve.
Thank you. I’m considering it but am waiting to see what the endo says first. Too many things to think about when I don’t seem to think well at the moment!
I had lip biopsy and it was 100% definitive of Sjögren’s. Sjögren’s isn’t just dry eyes and mouth - in can affect each or every part of your body including skins, lungs, kidneys.
If your only symptoms are dryness and oral thrush then, if your antibodies are negative you probably wouldn’t want a lip biopsy.
It’s only if, like me, you were previously diagnosed with wrong disease (Sjögren’s can mimic RA and Lupus) that clarity is needed. In your case the full blood screen and a lip biopsy might help because of the bronchiastasis - which could be due to Sjögren’s affecting your lungs. Also it’s good to know you have it and many get pain relief from taking Hydroxichloraquine. But the Sicca itself is pretty much only manageable with good preservative free topical treatments. I don’t get oral thrush but I do have Sjögren’s related Trigeminal Neuralgia with burning lips and gums - for me it’s a very neurological disease rather like MS.
What eye drops do you use? I was on snotears for many years and then got a corneal ulcer. Apparently they have preservatives in them which can make things worse so I got changed to Celluvisc which don't. Another item the CCJ stopped and I was then given a different one which came in such hard plastic that I couldn't squeeze it to get a drop out so was wasting so much they switched me back to Celluvisc. I was on an ointment at night (can't remember the name now) but the CCG stopped that and changed it to Xailin which I actually prefer as it's not so thick. For mouth I use Salivix pastilles during the day and Salivese spray at night. My ophthalmologist recommended baby shampoo on a cotton bud for the eye lids at night too. I have to say I don't bother with that as the ointment seems to be enough at the moment.
Everyone is different. I can use Lacrilube where Xailin gave me an allergy. I have a genius optician who wrote a letter to my new GP explaining what he wanted her to put on repeat and why. This is:
Hyloforte preservative free drops (been using these for donkey’s years - the UK Sjögren’s expert and my new ophthalmologist also agree it’s the best)
Celluvisc if I’m out with discreet bag (very rare!)
Artelac Gel which I use at night but also during daytime as it’s less relieving but gives longer lasting effect.
I have no corneal abrasions and am told this is because I use drops and gel so frequently. My eyes are tearless so they can’t figure out how I’ve never sustained scarring. But I can and it’s due to regular use of this lot!
Not heard of Hyloforte. Is that UK? Lacrilube was the one the CCG stopped here. I'd had it for years and was quite happy with it but luckily the Xailin is OK for me.
For general info to others here who have commented saying they have self diagnosed “Sjögren’s” on the basis of opticians or GPs telling them they have sicca - this is really upsetting for people like me with actual Sjögren’s as their main and very debilitating disease. It’s so frustrating to have everyone with dry eyes and mouth calling this their “Sjögren’s”.
My eyes, nose and ears are very dry but my mouth isn’t. Yet I have terrible cavities from my childhood because the disease started in my mouth when I was young. This is what has caused my severe Trigeminal Neuralgia and perhaps my widespread SFN and autonomic dysfunction. I have to walk with a cane as I lose my balance and have white matter on brain, paired bands in spinal fluid and much else plus terrible fatigue and neurogenic bowel plus GI problems, central sleep apnea etc etc. Some get non Hodgkin’s lymphoma due to Sjögren’s.
These dry eyes (now plugged) are the least of my troubles as this disease affects the entire body. Saying “I have dry eyes and mouth therefore = Sjögren’s” is like someone with mild tiredness from a night of insomnia calling it their Hashimotos.
It’s very important for those with Sjögren’s for the general public and health professionals to take it as seriously as they need to. This won’t happen if people self diagnose on the basis of having dry eyes and mouth. People who get lip biopsies done usually do so because they feel desperately unwell, not decide lightly. Some have gone for years being fobbed off with Fibromyalgia or ME and lots of other problems such as chronic bronchitis or pneumonia, Liver disease, kidney disease or have been misdiagnosed with MS or RA as I was.
Sjögren’s is much much more than dry eyes for most with lip biopsy diagnosed Sjögren’s.
I’m currently waiting for my go to come back to me. My Levo keeps being increased each time I’m tested but my t3 is still low so she has requested advice from an endo. I’ve asked her if I’ve got hashis but she thinks not and I’ve also asked her about going gluten free and solenium. I also asked about ppi but she says I have to stay on them. I think this is why she is seeking advice all the questions!
My latest results from 31/10
Tsh 1.2 0.3-4.2
Free t4 21.3 12-22
Free t3 4.6 4-6.8
Tpo 9 0-34
They don’t test the other antibodies
I’ve not had any vitamin tests since last October when I was told they were all fine.
Vitamin D was too low, ideally at least around 100nmol (assuming UK units)
GP's (and endo's) know very little, if anything, about nutrition and importance of vitamins
We see that time and time again on here
Selenium is often very beneficial. I was advised by one of top UK gastroenterologist to make sure to supplement (I have Hashimoto's)
Same is true of gluten issues. Most endocrinologist are completely unaware of the connection between leaky gut and hypothyroidism. Or between leaky gut and need to be gluten free
Multivitamins generally not advised. Definitely nothing with iodide in. (To risky when hypo)
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Your FT3 is too low.
Improving vitamin D, adding selenium and perhaps looking at vitamin c, zinc and vitamin A
You are totally wasting your money with a mult-vit, for so many reasons. They usually have totally useless ingredients - the cheapest - that you can't absorb. If there's iron in it, it will block absorption of all vitamins. If there's calcium in it, it will bind with the iron so that you can't absorb the iron, either. You don't want calcium, anyway, and you certainly don't want iodine! And, even if they did use the best, most absorbable vitamins and minerals, there wouldn't be enough of them to do any good. So, if I were you, I wouldn't waste my money.
Unless your at high risk from your stomach acid I really would try to go on something like Zantac instead or work at modifying your diet, I was put on PPI and they did me more harm than good the long-term side effects need to be taken into account and if your Dr insists on you taking them please make sure you have your B12 and magnesium levels checked along with all vitamins and minerals as they really do interfere with the absorption of them through the stomach
High I have this eye trouble. Use Clinitas during day, nlephasol and hot wheat bag.
Great trick from dr was to use surgical tape to hold eyelids shut at night, to stop drying at night. I use vitapos and tape at night. Has cut dryness during day down and have had fewer eye ulcers.
Clinitas Multi are eyedrops available from Boots etc but can be prescribed, Blephasol is a cleaner for eyelids Amazon are best. Vitapos is an ointment, prescription or buy from Boots or LLOYDS etc..
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