I thought the following link was important as I doubt many know that our eyes can also be affected by hypothyroidism:-
Thyroid Disease And Your Eyes: I thought the... - Thyroid UK
Thyroid Disease And Your Eyes
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They can indeed. Had TED over 12 yrs now . Started when hashimotoes
I'm not sure this article has got the reason for dry eyes with thyroid disease totally right. The reason I say this is because I don't have autoimmune thyroid disease or elevated thyroid antibodies but have had most of thyroid removed and I ha e dry eyes. To the extent that I was referred to the eye hospital. So not sure its linked only to autoimmune thyroid disease.
I wonder how many people without thyroid antibodies also get dry eye?
This link is informative and this is an excerpt:-
"Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth.
The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased tears and saliva.
Although you can develop Sjogren's syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms.
mayoclinic.org/diseases-con...
Sjogrens ruled out on the basis that mouth is not unduly dry. Thought I might pursue but COVID intervened.
Yes took me 25 yrs to be diagnosed by which time damage was done 😞
I'm sorry it took 25 years for you to be diagnosed causing damage. Is it not surprising that few doctors are aware of 'other' symptoms of hypothyroidism instead of only taking account of the TSH alone?
I have dry eye gritty feel in morning only. I simply splash warm water in to them which immediately sorts me for the day. I am also on 950 per week of levo, recently increased from 850.
Should I take T3 ? If so how much ?
If I do take T3 should I stop T4 (levo)
Am advised that a treatment involving a mix of T4 & T3 has been successfully used for some.
Finally is the TSH test an unreliable marker for thyroid problems, especially given that it doesnt test for T3.
Sorry if this is a loaded post !
Hello jeresavo & welcome
Your post might be missed as its on the end or another thread, can you make a new post?
I have no experience of taking Levo or T3 but from posts I have seen on here switching is one go is not recommended, and best done in increments.
TSH alone is not adequate, you may need a private test for TSH, FT4, FT3 and before adding T3 you need to ensure your key nutrients (B12, folate, ferritin & vitamin D) are optimal as FT4 to FT3 conversion can be affected if not.
Thank you so much for your response. I am new from yesterday to this forum. I will repost- thank Jer
Welcome to our forum and these are a couple of hints:-
Always get your blood drawn at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and test and take it afterwards. This helps keep the TSH at its highest and although it is from the pituitary gland, most doctors only look at its result when they should, preferably include Free T4 and Free T3.
I have Graves Disease .. I’ve had dry gritty 👀 eyes for many years and I am positive the condition is connected to my Thyroid disease .
My Doctor has never prescribed me anything to moisturise my eyes saying .. just buy something in the Chemist.
During Lockdown a few weeks ago , I was so bad , I had to make a private Appointment .
........as my Doctor couldn’t see anything wrong .. despite my face soaking wet with tears pouring from my chin and dry painful eyes with blurred vision .
The eye Surgeon I saw was great .. he said my eyesight and pressure were all very good But my eyes were extremely dry.
Strangely , so dry that the water was running down my face constantly .
He gave me a weeks supply of Steroid drops plus something called HYLO FORTE
Which I’d read about previously on here.
I cannot begin to tell you the great effect those two drops have had on my eyes .
What a wonderful difference!
I only need to use them at bedtime and I could kiss that Eye Surgeon’s feet for helping me .
He also wrote to my Doctor !!
Telling him that because of my Thyroid disease I need to have these drops whenever I have a flare up as the flare ups are due to my THYROID EYE CONDITION
... another lesson learned Doctor 👨⚕️
... or maybe .. NOT !
Luv Mx🌹
Yes, I too had similar experience - Graves post RAI ablation and with thyroid eye disease.
The NHS couldn't " see " anything wrong with me either - so I then sorted myself out, just make sure you keep using preservative free eye drops whenever necessary.
20 years prior to my diagnosis of Graves I was diagnosed at Moorfield with holes and tears in both eyes and given laser treatment over a couple of weeks to rectify this damage. No reasons were given as to why this had happened to me, I explained I lived with terrible back ache and sciatica, and inflammation build up on my spine was offered as a possible cause.
20 years later with a diagnosis of Graves and TED and hypothyroidism I found Moorfields eye drops suited me, and on explaining the situation to my doctor, she offered to put these on my prescription, but about 2 years later they were removed as it was deemed unnecessary and I could buy these OTC for myself, and so that's what I've reverted to doing, as well as buying my own full spectrum thyroid hormone replacement.
P,S, looking back I think hypo/graves had been my constant companion for most of my life, as I've always thought and presented as hypo but never had a diagnosis until Graves where I wasn't hyper nor with any of the usual suspects, just exhausted, with insomnia and dry gritty eyes. ???
I think it's very sad that people have to resort to the internet in order to get more information about their conditions. Thankfully there are several and at least we get info from people who have/had the condition and how best to restore our health.
I'm glad you had a proper diagnosis and a doctor who diagnosed and prescribed.
HyloForte is the only eye drop that has made a huge difference to my chronic dry eyes. It contains hyaluronic acid which draws moisture from the atmosphere. It is used a lot in cosmetics to smooth out wrinkles, It is a naturally occurring body protein which depletes as we get older, I also take a daily hyaluronic supplement which has helped immensely with my achy joints. I have Sjogrens and Hashis. healthline.com/nutrition/hy...
Wow EyeandDry .. thank you for that information I’m intrigued!
HYLO FORTE is great stuff .. I now get it free on Prescription and also buy it on Amazon , to make sure I have plenty.
Funny you mention about it being used in cosmetics , as I’ve been using it on my eyelids and below my eyes it’s so nourishing . Now I know why ! And I’ll keep doing that ! 🌸
... And I’m now looking at your hyaluronic supplement idea too ... thank you 😘 Very generous of you to share .
Good luck with your Sjogrens I’m sorry you have to put up with that as well as your Thyroid issues
Luv Mx🌹
Very interesting. Before I was diagnosed Hypothyroid in 2011 I was already on Travatan eye drops for Inter Ocular pressure.
For the past 5 years my eye drops have been changed many times as my eye pressure stopped decreasing even when changed to Ganfort, Lumigan, Cosopt, Monosopt etc etc.
I also have blepharitis (about 5 years) and dry eyes (Hylo Forte) for dry eyes.
There sure appears to be a Correlation for me between Hashi's/taking levo/elevated eye pressure and dry eyes.
I had a CT Scan of eyes carried out earlier this year but results were 'normal' !
I have it whether T4 is top of range, below range or mid range, makes no difference. I don't know if its connected to being hypothyroid, taking levothyroxine or something else.
shawsAdministrator
Do you have both Free T4 and Free T3 checked? If not I think you should.
shawsAdministrator
I hope GP can give you a prescription to keep your eyes moist.
That's very helpful to know, thank you.
shawsAdministrator
That's a horrible thing to wake up with. At least you'd think GP would prescribe 'artifical tears'.
No RAI.
I use thealoz duo single use nonpreservative capsules. Often have to reapply in the middle of the night and morning. NHS won't prescribe anything similar. You can buy from Specsavers or Amazon. Quite an expense every month.
The GreenMedInfo website - run by Sayer Ji - ran a well referenced article a day or so ago listing the 5 major nutrients needed for healthy eyes. Have tried to post a link to the article but have not been able to do so ! Maybe it can be found on the Blogs in the link below !
1 Ginkgo Biloba - 2 Goji Berry - 3 Carrots - 4 Coconut Oil - 5 Oily Fish
Each nutrient had good details with links for further reading ...
Am off to bathe my gloopy eye which I have had since a horrid sinus infection. I am due cataract surgery at the end of the month so I have to ensure there is no infection there ...SIGH !
My Step Mum has just had one of her cataracts operated on yesterday and she is ok. She cannot wash her hair for 3 weeks! which I find strange and she has eye drops to use every day and she says it wasn't painful just uncomfortable. She was supposed to have the op in March but then the virus stopped it. My poor Dad had to wait in the car for 3 hours in all this heat because he wasn't allowed in the hospital. She now has to wait to have her other eye operated on.
I'm sorry you are having surgery but hope you have a swift recovery.
I saw an optician yesterday for eye health check up as eyes so dry, painful and red, used to be intermittent and now almost constant. Was affecting my sight to the point thought my glasses were constantly foggy. GP just shrugged his shoulders but I was getting to point didn’t feel safe to drive.
Alongside drops without any preservatives, she recommended the hycosan brand, she suggested I put a hot eye mask on for 10 minutes and then gently massage across lids to help release the natural oils from the edge of eye lids. The oil helps to keep the eyes moist alongside the tears. Apart from autoimmune disorders causing problems other things she listed were age, not fully blinking when looking at a screen for long periods and some medications.
My optician recommended much the same things. They're so much more helpful than GPs.
I'm putting a link to something called "Blinkers" . They're designed to prompt you when using your computer.
dryeyezone.com/blinkers?rq=...
If you decide to use one let me know how you get on.
Thank you. I don’t actually use a computer/screen much but I’ll book mark that for future reference.
I think my problem is a combination of auto immune, medication (bisoprolol is evidently a known culprit) and age.
The opticians advice to use a heatpad really worked well yesterday. I didn’t allow time this morning and have suffered all day.
Thank you 🌻
I have dry eyes but that article may have helped explain why the ophthalmologist and Neuro ophthalmologist are puzzled. I have damage on both optic nerves and have lost outer peripheral vision in both eyes. They were looking at optic neuritis. But as I had episodes each time I was in a thyroid storm that would be a feasible explanation. It did take the 3d scan from specsavers to prove the damage.
Hey there Scrumbler
There is a blood test and a lip biopsy run for Sjogren's Syndrome.
Mine both came back negative with the surgeon telling me before she took the sample from my mouth that she has never seen anything like the state of my mouth before , but that she thought it was not SS.
Dr <redacted doctor name> is the Medical President of the British Sjogren's Syndrome Society, and works out of the Great Western in Swindon and the Savernake Hospital in Marlborough.
Thats who I saw. She was very helpful and wrote a really comprehensive careplan to my GP which he found very helpful x
Ah, so pleased you found some help : though obviously not the time lag of 25 years :
I know of another lady who went to her privately and found her very understanding and diagnosed her Sjogren's prior to the lip and blood tests, and who went home with some medications that actually helped with the symptoms.
I think she then went on to the Birmingham Hospital for the NHS testing but am not sure if she actually managed to get a NHS diagnosis and continue the treatment through the NHS.
Yes I went on to get help from NHS ( not Birmingham) following consultation with Dr <redacted doctor name> x
The Liverpool dental hospital does the saliva test first followed by a biopsy for sjorgrens. My dentist sent me. I also saw the consultant at the eye hospital who told me I had thyroid eye disease and would go blind in two years have me steroid eye drops and an appointment for a month which was promptly cancelled them cancelled, then cancelled , then cancelled so I rang up and asked for an explanation. Big error no I wasn't going to go blind not that type of the disease only dry eyes but now 6yrs on I have lost some peripheral vision and they don't know why.
Doesn't seem appropriate to tick the like box, so I'll simply send commiserations.
It's a deplorable situation all round really, isn't it.
In short, no :
It's taken around 4 years, at it's height there was about 18 months with absolutely no saliva and the pain was seriously, something else.
I didn't know how important saliva was and that it contains a pain killer said to be over 6 times stronger than morphine.
I couldn't eat properly and guess my vitamins and minerals had plummeted further compounding everything.
Initially it started with what looked like a worm growing on the inside bottom lip, then months of tingling and burning, before no saliva, no taste, and 24 hour pain.
Once saliva started to return several teeth needed to be removed, about 12 in total with a bridge fitted in front bottom jaw where I had lost the front four.
I'm almost back to normal though can't taste anything and stay on bland foods.
I think my eye dryness started about a year before the mouth issues, my memory of around this time is a little foggy, and they resolved with copious eye drops, as my mouth kicked off.
After over 2 years of going around various hospital departments in 2016 this culminated in an abortive endoscopy, as I had no saliva to swallow the scope and then the trolley angrily swung around for a colonoscopy, where to my horror the same pain sensation as in my mouth was in abundance, up my back passage.
I fainted and woke up attached to various leads and machines and a man determined to finish what he had started. Results were negative :
I had had both an endoscopy and a colonoscopy years earlier, prior to my Graves and RAI in 2003/5 - without sedation and a model patient - so why now - what had happened to me ?
I was referred to as a conundrum by my doctor and then discharged with no real answers and so virtually housebound thought maybe that Graves Disease I was treated for in 2005 has come back. I purchased Elaine Moore's book on Graves Disease and read all about " me " and that symptoms similar to Sjogren' s, can present after RAI and started my own research.
I did buy a second copy of Elaine's book, as my doctor knew I was dyslexic and thought she might also like this information but that didn't go down too well, and then I was knocked back again for asking that I have a T3 and T4 blood test , and a referral to an endocrinologist.
By this time I had also Dr P's book and had been following his advice regarding adrenal support, and also reading up on here, and self medication seemed to be shouting at me, though I was initially reluctant and waited until after the endo appointment and the letter declining my trial of T3 as my TSH was suppressed.
Thinking on :
I think anyone who has had RAI thyroid ablation should be allowed to run with a suppressed TSH or monitored and maintained at the hospital as T3 and T4 blood tests would be mandatory, and the proper adjustments made to both these vital hormones if deemed necessary.
In primary care a TSH is not the appropriate measure, the ranges and guidelines not fit for purpose and with just T4 being the only medication available to prescribe how can a doctor do his job, even if he knew how to ?
I was well when left alone on 125 Levothyroxine - though had a suppressed TSH and therefore reduced to 100 T4 but then not well, but in range, and given anti depressants whilst on this constant see sawing of 100 / 125 T4 :
I was kept at 100 T4 for about 4 years and this is when all my problems started.
If you have RAI thyroid ablation it is to destroy, disable, burn out the gland in situ :
Why would you then want to keep trying to activate this dying gland, full of a toxic substance and Graves antibodies back into life with some functionality ?
It is simply is beyond my comprehension:
Reading Prof. A Toft's 2017 article -
Thyroid Hormone Replacement -A Counterblast To Guidelines :
it does seem to me that he probably knows and has seen a lot more than many of us, and for him to say that he is currently reluctant to suggest either a thyroidectomy or RAI thyroid ablation for his Graves patients says it all, in what he does, and doesn't say, as he retires from his illustrious career as a leading endocrinologist within the NHS.
Oh, I' m sorry about that -I've a feeling her NHS results weren't conclusive and think she was having to look at getting the medication privately.
This is such a relevant subject. Most people don't even think that Hypo can cause eye problems. As most know having Hypo can and usually does initiate other (hormone/vitamin) deficiencies. I noticed long ago that my Vitamin D levels (like most people) kept dropping. Then I noticed that my eye pressure(s) kept going up every time my D levels dropped. I probably wouldn't have even put 2 and 2 together except that I had moved to another town and was establishing a new (eye) doctor relationship. Going on that information I had my vitamin A levels checked and they were also very low in the range. I've since corrected both and my eye pressure(s) have been very good. A side note was/is that my eye doctor noticed that I had cataracts in both my eyes. He also noticed that they seem to be in his words "shrinking".. I had no idea what role Vitamin D plays in our eye health, especially if you have dry eyes which a lot of Hypo people have.
Thank you for the link. Had never heard of these issues. What it did not mention was that hypothyroidism and autoimmune disease increase your risk of cataracts
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