Hi can anyone tell me if eye disease can start with achy eye and shooting pains in the eye? Over the last few weeks the pain has become more frequent . I had an appointment at the eye hospital, for a different problem, I mentioned the eye pain but I didn't get any answers. In all fairness the clinic was running very late and was very busy.
Graves and eye pain: Hi can anyone tell me if eye... - Thyroid UK
Graves and eye pain
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purple64
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hi..i havent got graves, but i do have hashimoto, hypertension and fibromyalgia. I have eye pain as though some one is trying to push one of my eyeballs in. I have seen an optician who states that there is no problem. But it is one of the conditions or can be associated with fibro.
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Looking back 6 months, I had a shooting pain in one eye, followed by aching pain. I jus5 took paracetamol for this. My endocrinologist subsequently said I have mild TED and I’m taking furosemide to reduce eyelid swelling (worse in a morning) and 200mg selenium. So far, the pain has not returned & swelling has reduced. I’m also seeing an eye specialist this week for a separate retina problem, so will hopefully get a good eye check to reassure.
Hope your pain lessons- perhaps take some selenium as a precaution.
I bought some selenium but then I read up on it and wasn't sure if I should take it. They did prescribe a thicker lubricating drop as they are so dry due to steroid eye drops and graves. Trouble is when you go to a clinic for one thing they tend not to be too
interested in another problem.good luck with your appointment
Have you had TSH receptor antibodies tested?
thyroidpatients.ca/2019/07/...
I did in March and they were high. They have always been high despite other levels being in range. Might see if I can get them tested again.
I don't think it's necessary to re-test. I'm afraid the antibodies interact with the eyes, causing problems. In this article it says pain is not typical, but patients often complain of pressure in the orbit: en.wikipedia.org/wiki/Grave...
Yes definitely possible. Were your eyes dilated and checked when you were at the hospital?
Is your Graves currently under control? How is your TRAb level?
Resting your eyes more will be helpful. Long hours on the computer or staring into handphone, drying the eyes out, can keep the pain around longer.
They didn't dilate them this time , normally they do. Pressure was checked and that was ok. Antibodies have been high for quite a while despite other levels being in range. But just because the powers that be say they are fine as we all know that doesn't mean we are!
Pressure apparently fluctuates, as I was lately informed. You could have high eye pressure but at the time it is being taken, it could be normal.
You are on carbimazole?
Never come off the carbimazole, unless it's some life and death situation, especially when your TRAb level is high or out of range, and you have TED. It could make the TED worse.
This article might be of interest to you-
Thyroid Eye Disease: Its Causes and Diagnosis
"Touching wood", I've never suffered from TED, but the BTF leaftet on TED notes "pain in or behind the eye, especially when looking up, down or sideways". btf-thyroid.org/information...
Any idea what your thyroid levels are at the moment ? You could always shell out for an eye test.
I guess this is the downside of long-term carbimazole: there is always something to wonder about.
Hi Valarian, had eyes tested in May and new specs. The hospital prescribed a thicker lubricant yesterday as they are very dry from graves and steroid eye drops. I have a feeling my left eye will be a problem as I had the cold sore virus in it 9 years ago and so far have not been able to stop medication or drops as it flares up again. Hopefully I can hang on in there with the Carbimazole for a bit longer as having it removed or RAI doesn't stop the antibodies as far as I'm aware.
Mine is with my right eye. Serious conjunctivitis years ago. When the TED struck, my right eye was more seriously affected. And in all subsequent flares, my right eye invariably has it worst. Currently, severe blurriness, on off double vision especially when the eye is dry and eyelid pores are clogged.
I think u are aware, with TED, TT is preferred over RAI.
With regards Graves antibodies, carbimazole over time, does lower antibodies. TT does get rid of antibodies. No thyroid, no antibodies. RAI depletes levels but at a slower rate and depending on how long and if the thyroid is completely knocked out.
Still, there are reports of the occasional case, many years after TT or RAI, TED develops.
Regardless, once TED has developed, its a medical condition on its own. The original thyroid disease that triggered it could be well controlled but the TED can still be acting up.
Thank you for that I didn't realise that TT stops the antibodies. I had the cold sore virus in my left eye which has caused scarring . Still on medication and eye drops as it can flare with no treatment which has left this eye weaker than the other also steroid eye drops has caused a mild cataract.i also had iritis and blepharitis at the same time.
Yes the steroid is pretty strong stuff.
Sorry to hear about the scarring on the eye. Has that affected your vision?
What are your symptoms for iritis?
Blepharitis can be surprisingly terrible in the way it makes other eye symptoms worse. After I started cleaning my eyelids again recently, it provided some unexpected relief to overall blurriness and the double vision. That was interesting.
Btw, I figured when I started having conjunctivitis attacks all those years back, it must have been a sign my immune system had started going south. You might find it helpful to try boosting your immune system, if u've not already started doing so. I think even at this point, it's worth fixing.
Hi ling I do have a slight blur where the scarring is but luckily it's not too bad. Iritis is a very red inflamed eye and can be quite sore. I had to clean my eye lids with a cotton bud and no more tears baby shampoo diluted in water for quite awhile when I had blepharitis . Now I just use a very hot flannel each morning to keep the oil ducts clear.I wondered if that was the start of it all🤔. Out of interest how do you boost your immune system, do you use supplements ?
That's good. We mostly manage on "its not too bad" : )
How do you use the hot flannel?
Sorry, what was the start of it all?
I don't use use supplements for boosting the immune system because of a serious strep throat when young which I think damaged my thyroid during the episode, so it's basically berserk and largely cannot tolerate supplementing.
Which leaves supplementing through diet. Cooking with ginger onion garlic does boost the immune system, but as u would expect it takes time. And it's not a good idea to eat these in huge quantities when one has Graves. Eat them as part of a healthy diet, and leave them to slowly repair and boost the immune system.
Hi purple, how have you been?
While doing some reading, came across some very interesting information by some specialist doctors who mentioned that a higher protein intake can improve immunity.
I was reminded of our exchange here and thought to share the information with you. Also, u may be interested in this link -
7 easy ways to boost your immune system
today.com/health/7-easy-way...
Best wishes.
Hi Purple64
I was so sorry to read your post. I have been in a similar situation.
I have read your replies and agree first and foremost, get your levels tested as it could be a meds’ tweek needed. There are amazing people on this site.... greygoose, slowdragon that are so knowledgeable. I would go with any guidance they give you. They will be able to help with knowing what your results are and guiding you on what is best to do.
Definitely go to an optician and ask them to check your eye pressure. Explain you have Graves and they will be very accommodating. If pressure high then contact your Endocrinologist for advise.
From my own experience.... having suffered with eye pain, as if someone/something was pushing on the back of my eyes... two things have changed that dramatically improved my Graves.......
My Endocrinologist would go on and on about the fact if I didn’t smoke they would improve. For a long time I didn’t listen, but when I did.... the improvement was dramatic so quickly. So if you do smoke, stopping really does help
The second thing that has had even stronger positive impact on my Graves is the introduction of T3 (sigma Pharm brand)..... any other brand or splitting tablets gives me horrendous headaches. (I guess not getting a correct dose or filler ingredients).
I feel for you. Living with a thyroid condition is life changing in so many ways. Take care.x
That's interesting I've not heard of T3 with graves. If only I had realised 2 years ago what was in store with this disease. They did check the pressure yesterday and left eye was 15 right eye 20 and apparently that's ok. Will get a blood test done and see what's happening, although the the usual response is its normal 😂
I had TED and found that I could not bear any bright artificial lights. Wearing dark glasses helped as did an eye mask which heated and eased pain. I sympathise as it is very debilitating. Eventually had two ops as my eyelid turned under and irritation from lashes.
Eventually ended up with thyroidectomy and eye pain solved .
I find that I squint in bright light even with reaction lenses in my glasses. Maybe this is the start of it. I do have deep eye bags and have noticed my eye lids are a bit puffy and droopy but I thought that was age, who knows 😂
Hello
I hope you don’t me reaching out. I suffer with TED due to my eyelids retracing. How did you find the surgery? Are you UK based?
Thank you in advance
I had operations on each eye at separate times to alleviate the eye lid retraction on botomn lids. Although this op was uncomfortable the thought of it was worse than actual event. Did make an improvement and worth it. I am based in the North West of UK.
My upper eyelids are still puffy though this has reduced a little since thyroidectomy.
Hi purple64 so sorry to hear that I'm in a same boat severe eye pain I have graves disease diagnosed 3 years ago not on any medication was under the care of opthalmologist but they saying pain is something neuro so has referred me to neurologist now but I know pain is BCS of my thyroid (multi noudles goiter )my right eye is badly effected I have developed photophobia light sensitivity but the health professionals have no clue😔
Thanks I'm waiting for my appointment with ENT see what they say BCS I'm really fed up with this now one new symptom after the other
The only answer doctors have is bloods are normal not normal for our bodies we all individuals new endo has discharged me after seeing me first time saying pain in my thyroid area and ear )jaw is not related to thyroid and when new ultrasound has shown noudles on my thyroid 6 of those one cystic and two tr3 mildly suspicious he s still not concerned where clearly I'm complaining about pain from the past three years I only had a goiter and graves disease with overactive thyroid but BCS I haven't treated properly my antibodies were there keep attacking I have developed noudles now my question is how and y when I asked him answer was oh lots of p have noudles well I agree but they might not have symptoms I have and I'm a complete new person which I wasn't three years ago
Reading through your posts, I do agree with you that you were not correctly treated in that you should not have been taken off the carbimazole.
Any idea what your TRAb level is?
Any recent thyroid panel done?
Thanks ling my TRAB antibodies result is 0.4 and range was 0.04....0.4 this was in last year October my TSH in April this year was 2.12 range was (0.27...4.2)and T4 was 16 range (12...22)
Any test for FT3?
When is your ENT appointment?
How long were u on carbimazole before it was stopped?
When was carbimazole stopped?
T3 no recent test but I got tested myself through medichecks I think last year it was 4.36 with usual medichecks lab range ...my ENT appointment is on 1st of August moved from 11th of July for no apparent reason ..... carbimazole I took for only 8 weeks in 2016 when I was diagnosed then stopped altogether since then I'm not on any thyroid medication since August 2016 was diagnosed at the end of may 2016.... something unusual I don't understand I have graves disease but my ultrasound s keep showing thyroiditis aswell
Was TRAb tested in May 2016 to confirm the Graves?
Why was the carbimazole stopped after only 8 weeks?
Do u have blood test results from back then?
Yes it was tested by endo same lab range and result was 1.3 so it was positive when I was diagnosed my TSH was 0.02:(0.27....4.2)and my T4 was 52.6(12....22). Carbimazole was stopped BCS I was becoming hypo my TSH brought up within range 1.14 something and my T4 went to 10.4 with same lab range they never tested T3 maybe the first time but I don't see them online in my health records ...I got all the printouts of my previous results I was getti g hypo symptoms aswell that's y GP stopped the medication and my endo agreed with her whilst I was keep complaining about symptoms
Did they reduce the dose of Carbimazole ? It seems odd that you weren't kept on a low dose . 8 weeks is not very long to have made any difference I wouldn't have thought.
At first I was put on 15 mg carbimazole by my GP then 4 weeks later at my first appointment endo reduced it to 5mg then 4 weeks later stopped completely
15mg starting dose is pretty low.
Sounds like you are very sensitive to carbimazole.
What was your TRAb level when the carbimazole was stopped?
They never tested TRAB levels when they stopped carbimazole
I'm not sure what is missing from this picture.
It would appear your doctor did not follow the treatment protocol for Graves which is to have u on carbimazole therapy for 18-24 months. The dose could have been titrated down to the lowest possible dose your body could tolerate. But for some reason, your doctor decided to stop it completely. What is the reason?
What symptoms were u complaining about when the carbimazole was stopped?
Was the carbimazole stopped because they thought you had Hashimoto's? What were your TPO and TG antibodies results at the time? You mentioned your ultrasound tests showed thyroiditis. If it was Hashimoto's, carbimazole would have been the wrong medication to be on.
It is strange isn't it my blood results were going towards hypo and they never tested tg antibodies yes TPO I asked my GP in 2017 to test they were slightly elevated 55 was results and range was (0...50) symptoms I was combining about thyroid and ear pain in my jaw aswell my vision pain in my same side eye light sensitivity...hair fall ...aches and pains in my legs numbness in my hands and arms at night etc ..I remember when I went first time for ultrasound in October 2016 the radiologist said thyroiditis when I asked endo about it he said oh yes could be post partum or Dequervin thyroiditis ...again last year another ultrasound showed thyroiditis with one 10mm noudle now ultrasound this year last month showed 6 noudles 3 on each side two of them they mildly suspicious and one is cystic BCS they not bigger than 1cm new endo wasn't concerned has discharged me and referred me to ENT he believes that my pain is not related to thyroid 🙄which makes me really angry BCS there are days I get really breathless get really tired don't know what to do
Compared to TPO antibodies, TG antibodies are not as specific to Hashimoto's. Having elevated TPO levels is indicative of Hashimoto's or Graves or both.
Those symptoms could very well be hypo symptoms.
Hashimoto's can also cause TED.
Follow ups would be -
1) for nodules. You are referred to ENT for that?
2) for thyroiditis and Graves. Full thyroid panels at regular intervals in case you need to be medicated. Or in the event, your thyroid burns itself out and you become permanently hypo.
3) for the eye pain and light sensitivity. Follow up with ophthalmologist if new symptoms develop. With TED, it's important keeping the primary thyroid condition under control, hence the blood tests are important.
And lastly, cut down the stress and anxiety immediately. Difficult to do. But it'll help with symptoms.
Thanks ling ENT yes appointment coming up will update u ....for eye pain opthomologist has discharged me two months ago they don't believe anything wron with the eyes so has referred me to neurologist don't know what they will do ..
Worst symptoms at the moment are pain in thyroid right side same side ear/ jaw / eye and head which I have to ask ENT if u guys think my blood results are normal y this pain is constant and still there
Yes since the ENT appointment is coming up, make the most of it.
Ask if you can get a pain killer.
Best thing to do now is to stress less and be chill. I'm not sure how it works but these goitre nodule conditions don't do good with stress. And if they are hyper functioning ones, they or they can make the thyroid spew out more thyroxine and push stress levels up making symptoms worse, and making you feel ill
About 4 month ago I experienced flashes in my left eye so I immediately made an appointment to have my eyes tested. (I honestly thought I had got a detached retina) After examining my eye he told it was the vitreous gel becoming detached but I was come back if it got worse. Ever since I have been suffering with this horrible disease my one eye has looked like it is slightly bulging. I have mentioned to my GP about it and asked could it be anything to do with my thyroid and his was response was no its probably to do with ageing. I have quite good eyesight and only wear reading glasses for close work and I don't need them for driving. I am convinced all my eye problems are a result of my high antibodies but the Doctor thinks otherwise.
That's such a typical response. I really don't think GP's understand thyroid conditions and all the symptoms we get. As far as they are concerned as long as TSH is ok then so are we 😡. I do find the local optician is better for understanding thyroid eye.
You are seeing an ophthalmologist?
The bulging eye is of course TED. Can the ophthalmologist give you a referral to a different endo?
I asked the optician and he said it wasn't that bad and recommended some drops for dry eyes which I don't have.
I wondered if the different viruses I had in my left eye and the stress of looking after my mum who had Alzheimer's was the start of all this thyroid problem. Sorry I didn't make it clear.
I just soak the flannel in very hot water, as hot as you can take without burning yourself, then hold it on my eyes. I do this about 2/3 times in the morning when I get up.
Alzheimer's, really sorry to hear that. That must have been really tough : (
Thyroid disease takes a long time to develop. And it has the capacity to pick up and trigger previous illnesses/conditions. Like with the eye for example.
The high stress from care giving certainly could be a trigger of the Graves.
Hi Ling, I think I get spikes in my levels as one day I can be exhausted then I have about 5/6 days running around like someone possessed 😂. Need to make a blood test appointment 🤔.
That link is really interesting thank you.
Hope you are keeping ok.
Hi purple, lovely to hear from you
: )
The spikes might not show up on the blood test. I can have very severe episodes and when I get tested 2-3 days later, my levels are as per usual pattern. Blood pressure might be somewhat off baseline but that's about it.
The trick, if doable, is to control your daily activity levels so you're not doing too much on any one day, and on the days when u find u are feeling more tired, then u should rest more on that day.
And if you experience that jittery trembly feeling, take a once off Propranolol. It helps.
It takes a lot of conscious effort to make such adjustments, and constantly reminding yourself that LESS IS MORE, LESS IS BETTER.
Best wishes.
Hi Ling, I did wonder about the blood test not showing anything.
I must admit I hadn't thought of that. I tend to try and get everything done when I get a spike while I have the energy. That probably isn't the best idea.
I will now try and adjust to spreading things out over the week. Think it will take a while. It's difficult when you have had a "normal" life to suddenly have a multitude of symptoms due to your immune system 😤. How long have you had Graves?
Take care and it's really good to chat .
From diagnosis, it will be 5 years in December but it's been going on for quite long before diagnosis. I've been having to adjust my activity level down down and down in the course of the 5 years. Fortunately, there's still energy to care give and work some.
Yes, it's gonna take time to adjust routines. The sooner u do it, the better you'll feel. It's human to just go go go when the energy's there. But as we know, with Graves, there's always payback and the inevitable crash. So pace yourself.
Also, on the days you feel u can go on and on, eat more and/or more protein cos it means you are burning more calories when that frenetic energy is present. For myself, I might take a little more carbimazole for the day as well and watch my symptoms very carefully for hypo effects.
Overall, try to have protein at all 3 meals, this will help with maintaining muscle mass as we age, and because Graves disease affects the muscles. Plus why not, since we now know that sufficient protein improves the immune system.
How are your TRAb levels now? Are they improving?
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