Thyroid eye disease

[Nil15192]

I need help! I have hyperactive thyroid, one of my eye started to swell and bulge out little bit. Now one of my eye is bigger than the other one. I completely lost self confidence.

My gp said his going to refer me to a eye specialist but this takes 10 days for the referral to be sent.

I am on Carbinazole tablets and don’t know if this can also cause the swelling ?

I need to know if anyone else had this problem and did it go away?

[pennyannie]

Hello Nil and welcome to the forum ;

Thyroid eye disease is generally caused by either Graves or Hashimoto''s both of which are auto immune diseases and something has triggered your immune system to attack your body, and when your immune system attacks your thyroid, because the thyroid is such a major important gland, the symptoms experienced need medical intervention.

The Carbimazole is an anti thyroid drug which will block your T3 and T4 thyroid hormones from rising any further and slowly your over range T3 and T4 will fall back down into range, when the AT medication should be reduced accordingly, as if not, you risk becoming hypothyroid with equally disabling symptoms.

Too high a level of T3 is classed are hyperthyroid just as too low a level of T3 is classed as hypothyroid - and it's important that you are dosed and monitored on your T3 and T4 blood test results and not your TSH,

Initially the only way to tell Graves and Hashimoto's apart is through a blood test analysis of which antibodies are in your blood : some antibodies are common to both of these AI diseases but the TSI ( a thyroid stimulating ) and or a TR ab ( a thyroid receptor blocking ) are unique to Graves Disease and the deciding factor.

AT medication is prescribed for Graves but should not be prescribed for Hashimoto's.

The AT meds should slowly ease your symptoms, so try not to worry as this can simply exacerbate your symptoms.

There are specialist TED - Thyroid Eye Disease clinics throughout the country and would suggest you be referred to a specialist centre and you can contact the tedct.org.uk charity yourself and they will provide you with help in your area.

I developed TED after RAI thyroid ablation for Graves way back in 2005. but there are many forum members who have experienced where you are currently and there is always help and support on this website.

Do you have any blood test results and ranges to share with forum members ?

Is your antibody blood test back yet so we know which AI disease you are dealing with ?

When your metabolism runs too fast as with hyperthyroidism or too slow as with hypothyroidism you may find it difficult to extract your essential nutrients from your food so it's also advised to run ferritin, folate, B12 and vitamin D levels as these core strength vitamins and minerals all need to be maintained at optimal levels to help you through this phase of the disease.

[Buddy195 Administrator in reply to pennyannie]

I would recommend you start a selenium supplement as research shows this can help with mild TED. Start on 200mcg and reduce to 100mcg after 6 months.

I have TED with Hashimotos so cannot comment on the Carbimazole.

I found it useful to take regular photos of my eyes (& keep in hidden on my phone) to show the ophthalmologist & endocrinologist. It helped having a visual record to discuss with specialists.

Please don’t overdo it in Google as they post worst case scenarios. Please be assured that my eyes now look nothing like they did 18 months ago. Wear your sunglasses (even indoors if it helps with light sensitivity). If you are in the UK TEDct are really helpful & provide info packs & also run an advice line & Facebook group. Very best wishes to you.

[pennyannie in reply to Buddy195]

I'm already sorted thank you Buddy :

[Buddy195 Administrator in reply to pennyannie]

So sorry I thought I’d responded to Nil15192

[asiatic]

Hi Nil, I probably developed TED because I was not well monitored after starting on Carbimazole and was kept on a high dose for too long causing me to go hypothyroid which can worsen TED. I hope you are having frequent blood tests. Have you recent results you can share ? Make sure you are referred to a clinic that specializes in TED as not all do. As mentioned TED ct can advise.

[slidingonamoonbeam]

Hi .There is an approved medication for Thyroid eye disease called Tepezza.Google it.Also selenium is recommended.I take one brazil nut a day as selenium can be toxic if too high a dose.One brazil nut a day is safe.try not to stress as that can worsen the situation.All the best. It's not easy dealing with all this I know.Sunglasses are helpful if you have light sensitivity.Sorry I don't think Tepezza is available in the UK as yet .You could contact Horizon therapeutics in Dublin for more information.

[Cavapoochonowner]

Hello there, I have graves disease and TED.I see an opthamologist at the hospital for the TED.They say my case is mild but I too have one eye that bulges a little more and the usual dry, gritty , bloodshot very light sensitive eyes.In the past I have been prescribed ibuprofen for the pain and swelling and am currently using Xialin eye ointment at night and drops in the day which are on prescription. At the moment my graves is a devil to manage which has resulted in my thyroid levels going up and down. My opthamologist says steady thyroid levels are best and being undermedicated can make eyes worse. I cannot really remember what my eyes looked like before as I think I've got used to them.If I mention it to anyone they say they hadn't noticed .Obviously we notice because we're constantly aware of it and looking out for it.The appearance has improved for me over the last 3 years so once you are seen and receive treatment for your hyperthyroidism and eyes if necessary I'm sure things will settle down for you.Best wishes.

[Buddy195 Administrator]

Be careful if you choose to get your additional selenium with Brazil nuts as the content varies according to soil type. If you are in the UK, SeasideSusie has useful information on Brazil nuts in supermarkets. I chose to supplement selenium with a tablet so I could be sure how much I was taking.

[Bellazzurra in reply to Buddy195]

Same, and I’ve had really good results. How about you?

[Buddy195 Administrator in reply to Bellazzurra]

Selenium helped lower my antibody level & improve CRP/ overall inflammation levels.

[Bellazzurra in reply to Buddy195]

Thanks for the feedback. That’s a great result! I haven’t checked my autoantibodies since I started taking Selenium, but that would be amazing if they were reduced. I have noticed that my neck is practically back to normal, and the goitre is almost nonexistent.

[Annajames]

Hi. Have you gone to an optician's yet? They should always be the first port of call for anything involving the eyes instead of wasting time going to doctors. Any optician's will do and you should be able to get an emergency appointment on the same day you contact them and be seen straight away. They will then refer you on far quicker than a doctor can, possibly the same day.

Just to add, I had a similar issue a couple of years ago when one eye suddenly appeared slightly more prominent but it turned out to be an infection. I had seen a gp but they just said it's common on levothyroxine to have dry eyes and gave me lubricating eye drops that I was allergic to. I phoned the optician's the next day and they saw me an hour later, diagnosed an infection and gave preservative free medicated drops and my eye was back to normal in a few days.

[Bellazzurra]

Hello, I have Graves’ Disease and also had mild TED. After taking selenium supplements (200mcg) for 2 months, my eyes are more or less back to normal, which is rather incredible - even my endo was impressed by the before an after picture. I found out about the research on Selenium and TED on this platform, and I’d recommend giving it a try if you tolerate Selenium. The studies show that 100mcg - 200mcg of Selenium for 6 months improves TED.

[Bhattinsami]

I used homeopathic medicines for three months and my hyperthyroidism symptoms getting better now ..

[Calliope62]

Hi Nil,I had TED with Graves. I was initially treated with strong anti-inflammatories and then steroids to stop my eyes from bulging. In conjunction to this I used a good eye supplement with lutein and selenium, I wore tinted lenses, avoided smoky atmospheres, used eye drops and hot compresses to relieve discomfort and flush out toxins. Don't despair; my eye protrusion was apparent, and did upset me a lot, but now you would never know that I have had TED.

One word of warning - if you do go down the steroid route make sure that they also prescribe something to protect your gut, such as Omeprazole. My GP spotted that the hospital had failed to do this, thank goodness.

Best of luck!