I have developed quite a lot of swelling and eye burning, numbness sensation over the last 2 weeks. if I ask someone, they'd say they don't see anything wrong with my eyes as its not very visible.
I have gotten this before (last year) but not as badly, and back then it resolved and my eyes went back to normal, up until 2 weeks ago.
My question is, is it worth waiting or should I rather seek treatment? I'd probably get offered some anti inflammation medication, even though it increases your diabetes risk and I have a bit of a high blood sugar (not yet diabetes, pre-diabetes).
Also steroids might help now, but if it comes back, can I stay all my life on steroids?
It's really hard to choose, to treat it and risk developing diabetes and other side effects from the anti inflammatory medication, or to not treat it and risk getting the classic Grave's disease stare.
I have seen the endocrinologist in May, and all was well, I had an ultrasound, no problems detected (though my thyroid was swollen back then and still is). She said I can come back after 6 months. This re-assured me at that time, but I get inflammation all around my head and neck. Swollen thyroid, burning eyes, half my face feels numb when I sleep.
I'm not sure if there really are just so little options of treating this thing, or if I'm doing something wrong.
On 25 may I had:
TRAB: 1.86, detection limit was 1.75 for grave's disease (so very little antibodies I'd say)
FT3: 4.6 (range 3.1-6.8)
FT4: 17.2 (range12-22)
TSH: 2.49 (range 0.27-4.2)
I have been in normal ranges with these 3 values for like half a year, so I'm not sure what they can do for the eyes except the steroids which would kill my health even further.
Has anyone tried with weak anti inflammation medication like aspirin, ibuprofen?
Do those help? I took a bit of aspirin sometimes but no effects.
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I would seek an opthalmology appt. When I was hyper and had sore eyes I was quickly referred even though I felt it didn't merit attention. I was prescribed selenium. I was also seen regularly and had my eyes monitored by tests and by an opthalmologist.I don't have Graves.
Yes, also got prescribed selenium and I kept taking it ever since the first visit to the doctor. However, I'm not sure it's doing anything for me...or who knows, it could be worse without it.
Lalatoot, did you have a diagnosis of TED? I am currently euthyroid on carbimazole (toxic nodule) but was refused a ophthalmology referral as I don’t have Graves antibodies & told it was Impossible I have related eye issues without. Even though I have worsening eye misalignment.
I was not well cared for and no one tested antibodies. However my ft4 was into the 50s and I relapsed hyper the three times I came off carbi. When tested for antibodies 3 years later I was told negative and no reason given for my thyroid problems. I was given a diagnosis of Ted initially but I believe that was based on me being hyper not on me having Graves. I never had bulging eyes . Once I moved away from Lincoln my eyes were never bothered about medically again. I have had real bother with them and never needed drops.
I would definitely recommend you see a specialist ophthalmologist ASAP, as early diagnosis and treatment is really helpful. The TEDct are a useful group & helped me find a TED specialist in my area. You can get a referral through your GP, endo or optician. Definitely start taking selenium supplements if you haven’t already; 200mcg a day for at least 6 months is recommended for mild/ moderate TED and if you smoke do stop, as this can make TED worse. Preservative free eye drops like HycoSan or Hyloforte are useful and if you develop light sensitivity wear sunglasses. My ophthalmologist recommended ibuprofen for pain but you may need to take something to protect your stomach if taking daily. I’ve not needed steroids so far, so you may not need them. It’s useful to see a TED specialist, as they can take measurements of your eyes, alignment etc and monitor you carefully.
Keep posting if you need further advice or support. We are here to help one another! 😊
Hello, I have graves disease and have been on treatment since 2018.I also have mild thyroid eye disease which started around the same time.Puffy swollen eyes, bloodshot , dry , gritty , light sensitive, and particularly my right eye is a little starey. I was referred to a hospital opthamologist by my endocrinologist and have been seen regularly since.I used to have pain and aching moving my eyes and also a bit of double vision.They describe my case as mild.They recommended I take 200ug selenium per day and take ibuprofen for the pain and swelling.They never prescribed anything stronger.They also have given me Xialin gel for daytime use and Xialin night ointment and this has made my eyes more comfortable. I Wear sunglasses when it's bright.I have found all these things helpful.He did tell me that one of the worse things for thyroid eye disease is fluctuating thyroid levels , especially going underactive so he recommended block and replace for my graves which I take 40mg of carbimazole and 100mcg levothyroxine per day. Hope my experience helps.
Mild! If anything, all you described is definitely not mild, it's life interfering... I experience exactly the same as you, except my vision is not affected yet. So as your levels got stabilized, have your eyes gotten better? Or do you still get some eye symptoms after 3 years now? Did you take block and replace all this time?
My eyes have improved slightly.The puffiness and bags underneath have gone but there is still puffiness above.I have had all the tests, measurements etc.They have improved slightly but are not back to normal.Some days are worse than others with the sensitivity to light and looking bloodshot.I was on the titration method of treatment for about a year but my thyroid levels were all over the place due to hospital appointments being too far apart. I have been on block and replace since December 2019.My eyes have settled a bit but my last appointment a couple of months ago they looked pretty bad and he said he could refer me for an operation to improve their appearance if it bothered me.I said no at the moment as I can't face it but may consider it in the future.Honestly I don't know if they'll ever go back to how they were. That's not to say you will have this experience, we are all different aren't we.
I’ve seen so many medics about my eyes, even some ophthalmologists know little about TED. The BEST advice & treatment I’ve had came from the TED specialist ophthalmologist, so do try to push to see a TED eye specialist. TEDct are really helpful & have a list of specialists. Very best wishes!
TEDct seems to be directed at people from the UK. Not sure how it works in my country, but I'll see with the endocrinologist. I'm not from the UK, I don't even know if there exists something like a TED eye specialist in my country (Romania). But I see there is some information about the disease on that site so it's definitely helpful.
Others have given you good advice that I totally agree with. Keep putting in preservative free lubricating eye drops and a thicker ointment at night. It will eventually get better. Looking back your history I don't think your treatment for Graves was good. You went hypo on treatment which can escalate TED. Although my TED has plateaued my eyes will swell up if my thyroid levels drop lower than half way through range. Your levels may be too low for you. Do you have any hypo symptoms? If so you may benefit from a small dose of Levothyroxine. It is all trial and error.
I've been feeling pretty ok for the last month or so, I don't really know if the thyroid struggles to keep those levels, but my guess is that it's been triggered by recent stress at work because the eye trouble started around that time. It's too much of a coincidence. I try to not stress, but I had to work more than usual and it involves staring at a screen so I've used my eyes all day.. It's also quite surprising that your eyes react to dropping levels even though they're still in range. Seems it's all differing a lot based on the person.
It's also quite surprising that your eyes react to dropping levels even though they're still in range.It is frequently mentioned on the forum that where we are in the range is important. We each have our own sweet spot which for me is half to three quarters through range. Below half way for fT3/fT4 and I feel unwell, breathless and eyes will swell. Stress likely does play a part perhaps raising your antibodies. Your last bloods were May. Perhaps your thyroid levels have reduced further since then causing the eyes to start swelling 2 weeks ago.
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