Struggling with Thyroid Eye Disease

Hi everyone. I was diagnosed with TED in March this year, shortly after having a total thyroidectomy. I'd been diagnosed with hyperthyroidism 18 months previously and as my condition was never stabilised on carbimazole a total thyroidectomy was deemed to be appropriate. I'm also a long term insulin dependent diabetic. I am really struggling with TED. It's without doubt the worst thing I have ever experienced, and I have had my challenges over the years. My endo started me on 35mg of Prednisolone daily upon diagnosis, but to be honest I feel like it's done me more harm than good. I'm now being weaned off the steroids, currently on 5mg alternate days, and I feel worse than ever. I've gained 4kgs, have steroid moon face, a broken foot (literally stood up and bone fractured) erratic diabetic control, feelings of depression and mood swings, and my eyes feel and look worse than ever. Today I woke up and thought I can't deal with this any longer. I have a very supportive family, but I feel so low. Every morning I dread waking up and feeling the pain in my eyes. Most of the time I can't see clearly, I can't exercise or go far because of my broken foot and life feels very bleak right now. I've gone from being an indepedent person who deals with whatever life throws at her, to a wreck of a person who doesn't feel that she has a life worth living.

6 Replies

  • Are you under a specialist TED opthalmologist ? If not ask your GP for a referral.

  • Hi Sarah Miranda. I was diagnosed hypothyroid when I was 53, I'm now 69. Put on Levothyroxine which I still take, but perhaps 8-10 yrs ago my Dr thought I might be Type2, so he put me on Metformine - that was a big disaster for me, Levo and Metformin did not work together for me.

    I started having symptoms of muscle strength loss, fatigue, loss of appetite being the major ones. I within a couple of years had developed a blood disorder, affecting blood cell counts which led to other problems, though I didn't 'feel ill' fortunAtely. I've since been diagnosed as having 2 Auto Immune conditions.

    One idea I can give you is, look on - check out the various meds you've listed against each other and or against known health conditions. Read it all fully on each search and see if that will give you any answers or things for you to consider. I also use labtstsonline to check out blood tests I've had - always ask your surgery for a copy of them. See how your own tests compare with norms online. Don't look for problems if there are no discrepancies, but I found using those when researching my own health history was very useful in "getting to the bottom of things".

    I hope this info helps you also. I'm not medically qualified, was just doing what the doctor/specialists didn't seem able to. I found more answers on the meds, blood tests, and support communities sites than anywhere else and then posted on here, to share what I learnt, depending on which was the Relevant health support Community. Sambs x good luck.

  • You definitely need to be under an Ophthalmologist. I take it you have been prescribed eye drops? Something gloopy like lacrilube for night times may help and regular drops (preservative free) as often as you require during the day.

    My Ophthalmologist recommended 200mcg of Selenium daily.

  • Thanks for your replies. Yesterday was a really bad day, feeling slightly better today. Yes I'm using Hydroforte eye drops continuously and Lacrilube gel at night. The problem I have is the swelling is so uncomfortable. Yesterday morning I felt as if I couldn't raise my eyelids they were so swollen and distended. And I just felt I couldn't go on another day like that. Spoke to my endo and asked to be referred to Moorfields, after reading advice from TED Charitable Foundation. I have seen so many different doctors and they don't confer with each other and I get conflicting advice all the time. At the moment I'm coming off Prednisolone, which has given me inflammation of the lens in both eyes and that's added to the discomfort in my eyes. I

  • Poor you, I do sympathise, and yours is worse than mine. Try the Selenium it may help. Also, how are your thyroid levels? Any imbalance high or low will affect your eyes.

  • My thyroid levels are still fluctuating as it's not that long since my thyroidectomy and we're still trying to find the right dose. Will see endo again in about 6 weeks for another check up. I'm confused about selenium, as the diabetes specialist I saw at my last check up (also an endocrinologist) said there was no evidence to support the use of selenium. However he is also the same person who wanted me admitted to hospital for intravenous steroids and the opthalmologists said absolutely not, get off the steroids! You see what I mean about conflicting advice?

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