Graves swelling

[wsjkcj1]

Hi, my left eye is swelling again. This time is worse. is it common to have eyebrows and forehead over eyes swell too? It's extremely tender and I have a headache.

[C_S-]

Yes I had Grave's disease. My right eye only got swollen but mine wasn't painful so I didn't really notice it as it was such a slow process. I hadn't even been diagnosed at the time. Then the eye started to get itchy and red so my GP sent me to the Eye Infirmary; there they took blood tests and explained everything.

I was put on carbimazole and all went back to normal, more or less. Then the specialist said I didn't need any more medication and wished me luck. No suggestion of future check ups. You can guess the rest, the disease returned and my eye got even worse. This time radioactive iodine - even though they say you shouldn't have that if you have swelling eyes since it can make them worse.

Then of course I became underactive, so next it was thyroxine. But the dose wasn't enough, became hyper again, and the eye started to swell once more. Both the GP and the endocrinologist said this was not possible - eyes could only swell the once they said - but the Eye Infirmary confirmed that it was once more Thyroid Eye Disease and said that, on rare occasions, it did come back more than once.

Years label it is stable and you can only really notice if the other eye is a bit droopy when I am tired i.e. compare them. I use celluvisc eye drops to keep it lubricated, but don't even need those so much lately. I keep a really close eye on my thyroid print outs. I do all the blood tests privately and see an expensive specialist. My credit card is not happy but my mind and body is, so I don't care!

If the pressure is that bad on your eye that it is making other bits of your face swell then you really need to go back to your doctor, and fast. Once the eye swells, and the more it swells, it never goes back to the original size again. Think of a stretched elastic band.

There are operations to reduce the eye downwards, but you don't want to go there. Just get a handle on it and push the medical profession like crazy with information and persistence and you'll get there.

Good luck! 🤔

[Stefcon in reply to C_S-]

You could have been writing about me with your reply. Your symptoms and treatment is exactly the same as mine. Thyroid eye, RAI, private doctors. I have just had a slight flare up in my right eye this week, but managed to get on top of it with tweaking levoxathyrine and eye drops.

Don't sit back and let doctors who know very little about this disease dictate to you. Research it yourself and go private if you can .

Good luck👏

[wsjkcj1 in reply to C_S-]

thank you for your reply. My thyroid became hyper about a month and a half ago and I noticed my eye swelling. my eye lid was puffy and left eye protruded some. the ER doc gave me steroid shot and pills to take for a week. eventually the swelling went down or mostly. Eye Dr said my eye still measured out of socket but wasn't overly concerning. My thyroid went back to working normally but my eye started to swell again a couple of days ago. then it swelled more last night and that's when I noticed my eyebrow and tissue around eyebrow was swollen. I hoped this was normal because I don't have much experience with this. I wasn't sure what people did for the swelling. I can't take steroids all the time.

[C_S- in reply to wsjkcj1]

I never took steroids. And my eye is fine now. I would suggest that what your doctor says is "normal" is not normal for you. We are all different, not machines. My endocrinologist stressed that fact to me many years ago. You need someone to be looking out for the other signs, maybe a slight tremor in your hands for instance. And you need to be allowed to play around with your thyroid medication doses, with regular blood tests, and a continuous comparison of the results print-out so that you all know when you have reached your individual state of comfort. It's a nasty disease, but there is a lot of help out there, and not usually from doctors. They don't have the time or knowledge a lot of the time. F you have only just started with this illness I am telling you now that it can take a long time to settle. So you need to keep trying.

[wsjkcj1 in reply to C_S-]

thank you, did you only take carbimazole for the thyroid and not a biologic to suppress the immune system? While your eye was active, did it swell and reduce several times or mostly stay swollen?

[C_S- in reply to wsjkcj1]

Just carbimazole yes. And it went right down very quickly. But that was 30 years ago - things will have changed, for the better I hope. While it was active (3 times) it stayed swollen and/or got worse. But a friend of mine with a similar problems notices they swell much more when she is having a bad work day - stress. Good luck my friend from across the pond.

[wsjkcj1 in reply to C_S-]

thank you for your help!

[Sedum in reply to C_S-]

I think we could look at this differently. Drugs all have side effects and only suppress symptoms. The 'side effect' of carbimazole is a suppressed immune system. An invitation to other serious diseases. When the body isn't coping it is short of trace minerals, antioxidants and other nutrients and or clean water, or it is toxic from food or chemicals. if we increase the quality of our nutrition and limit toxins the body has more scope to help itself. I have posted before how this enabled me to lower being hyperthyroid to normal. Lets help ourselves a little more..Try high Vit C often for example, plus water. It wont do harm, it may do good.

[C_S- in reply to Sedum]

Yes I agree Sedum. My private specialist has advocated the holistic approach, so I am now on more B12, vitamin D,C and A, zinc, magnesium, and iodine. But selenium, now there's the one to help TED - forgot about that!!

[Sedum in reply to C_S-]

I take Sisel's Triangle of life. Would really recommend it. we need 82 trace minerals a day and a wide range of antioxidants. these plus so much more in The triangle. zest.mysisel.com

[C_S- in reply to C_S-]

Only my right eye too! Nobody seems to notice it now and I’ve more or less forgotten about it. Or perhaps I am just older so not so sensitive. I frequently use my eye drops though.

[alangardner]

absolutely classic symptoms of '' thyroid eye disease '' ----- which has to be treated totally separately from graves or hashis ..... my lady had the exact same problem and was refered directly to the ''adnexal dept at moorefields '' ...... the treatment regime is different from other thyroid meds [ i.e. steroids - under supervision - , radiation [ not rai] .. which is superb .. , or possible surgery [ even for cosmetic/asthetic purposes ] ........ but at all times YOU the patient are fully aware of all choices and good and bad points ....... the main man there is mr david verity ------ and in my opinion is absolutely brilliant ....... little tip though if you go there make certain you have as earlier appointment as possible otherwise it may take an entire day ..... pm me for more info .......alan

[wsjkcj1 in reply to alangardner]

sorry forgot to mention I am American. I find better advice here than I can on other sites. I'm just glad the symptoms are typical. I'm new to this so not sure how often my eye will swell and when I should be concerned. I looked online and found non surgical treatments are steroids, ibuprofen, eye drops. I wondered if the swelling was mild, do you just take ibuprofen to help control it? Obviously, I can't stay on steroids. I have other autoimmune disorders already and take ibuprofen pretty regularly already.

[C_S- in reply to wsjkcj1]

Jeepers, Ibuprofen etc won't help! Thought you were coming in from abroad. Look up Mary Shomon. She mainly talks about Thyroid issues in general, but she is your guru in USA. I have been a member of the Thyroid Eye Disease Society for a long time here in the U.K. Keeps me well up to date!

[alangardner in reply to wsjkcj1]

exactly how I feel about this site ....... if I can explain what we did to help the situation it may well be of help to you ......... firstly my lady's T.E.D. was very bad [ and obvious by sight ] the 1st part was a high dose of oral/i.v. steroids for 4 weeks slowly reducing over 6 months together with eye drops -- we found out that a topical spray purchased over the counter worked even better to relieve the dryness , because it can be used when outside when needed -- with constant monitoring ....... then followed up with radiation therapy [ minor - non intrusive ] ---- which was superb , carried out at st.barts --- and then follow up monitoring [ every 6 -7 months ] --- this regime has worked for her even though it has taken about 2 years to get there ....... apart from that we were offered surgery after if we chose , but this would only be for aesthetic purposes ...... so we decided not to go down this route it is now manageable , easier , and a damn site more comfortable for her ......... with the help from our g.p. and never forgetting all the good people on this site who helped with this and her thyroid problems , and continue to do ---- which I for 1 will never forget ...... hope this is of help to you ...... alan x

[wsjkcj1 in reply to alangardner]

I agree surgery would be my last option. Thanks for your help. I like to get as much information as possible to be able to compare when new symptoms arise. It's great to hear there is remission!

[MrsJim]

I completely second what alangardner said about getting there (moorfields) early as the clinics over run pretty badly but it's worth the wait, they're all fantastic. I'm not under Mr Verity but the nurses, staff in fact the whole team are amazing but get the earliest appointment possible to reduce your waiting time.

[alangardner in reply to MrsJim]

if you go to moorefields in the ADNEXAL dept [ ground floor clinic to the left ] you should be able to see mr v ----- he is superb and I would recommend anyone to him

[wsjkcj1 in reply to alangardner]

I live in the U.S. I just started with an endocrinologist. Hope he is good.

[MrsJim in reply to alangardner]

alangardner thanks so much.

Fortunately at the moment I don't need his help. I've got bilateral corneal erosion so under Julian Stephens for that.

But you're right about the care Moorfields give, its second to non. I only wish the rest of the NHS was like it.