In remission but TED coming back?

[Ffantastig]

Hey Team, wonder if anyone can help? I've been off carbimazole after Graves, and blood tests in 'normal' range since March 2020. I had TED Dx in January 2019, 'moderate', seemed to burn itself out a few months later without treatment, though not 'cured'. But in October 2020 my eyes seemed to be getting weaker again - puffy and struggling to focus. The Endo referred me then to the Eye Clinic and I'm now seeing them in March 2021 (all my usual check ups with them have been cancelled since last March because of the damn covids...). Thing is - I don't know why my eyes should be getting worse again? My last 3 blood tests, in reverse order, were:

January 2021: TSH 1.54 (0.30 - 4.40), FT4 11.6 (9 - 19).

October 2020: TSH 0.82, FT4 14.4.

May 2020: TSH 1.21, FT4 12.6 (two months after quitting carbimazole).

The condition of my eyes doesn't seem to tally with my blood tests that I can see... When they first got worse in Oct my FT4 was actually higher. I was so happy to get off the carbi and into 'remission', and Endos are happy with my results - if it's a matter of raising FT4, I don't know if they'd be open to that... or even if that is the problem. So what else could it be? I know my eye muscles took a beating, possibly fibrotic damage, and I strive to exercise them a lot daily. Can anyone suggest anything I should discuss with the Eye Clinic next month? Thanks.

[Lalatoot]

Although Graves' disease and TED both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. The two diseases run their separate courses and do not necessarily occur at the same time.

[PurpleNails Administrator]

Is not unusual for Graves to be in remission but TED to become active.

They will be treated as separate conditions. Endocrinology will treat the thyroid gland, while ophthalmology deals with the the eye disease. Treatment of one will not impact on the other as the two diseases run independently and do not necessarily occur together.

Thyroid levels fluctuating and becoming too low is said to adversely affect TED. Good monitoring and control through frequent testing and correct treatment will avoid fluctuations.

This site is recommended by thyroid uk and has lots of information specific to TED including a common questions section.

tedct.org.uk/questions-and-...

This is an US site but also has useful information

umkelloggeye.org/conditions...

[Buddy195 Administrator]

I’m sorry that you are having another TED flare Ffantastig. My recent TED flare also occurred when my results were ‘optimal’ & both my endo and TED specialist ophthalmologist said that TED can ‘run its own course’ (ie not be linked with thyroid levels).

I’m currently trialling combined T4/T3 to see if the additional T3 reduces some eye swelling.

Have you joined the TEDct Facebook group (recently set up) as they offer great advice/ support.

Best wishes to you; please try to do things that help you relax (as stress can heighten symptoms). I like to follow mindfulness CDs/ apps (eg Mark Williams) to aid this. Keep posting to let us know how things are going!

[asiatic]

Hi, I have had Graves and TED for 5 years now and although we are told the 2 run their separate course I know that if my fT4 drops below half way in range my eyes become puffy and irritated again. I have an understanding endo who listens to my symptoms and my need to keep fT4 about three quarters through range. At the moment you are only quarter through range and according to Elaine Moore an American thyroid expert many of us go hypo after treatment with Carbimazole and need a low dose of levothyroxine.

[Ffantastig]

Thank you to all the kind people who replied, it really helps! 😍 I'm familiar with the wonderful Elaine Moore, and my great fear is being one of the (I think she said 20%?) who go hypo after Graves... 😕 Even if I could get in to see an Endo, I doubt any of the team would be happy to give me levo in the 'normal' range, but I can try - will raise it with the Eye Clinic next month. So thank you, that gives me something to work with. I hear you on the 'stress factor' though! I also love the Mark Williams CDs, though I'm not always successful at quieting my mind... 🤪

[asiatic in reply to Ffantastig]

Even if I could get in to see an Endo, I doubt any of the team would be happy to give me levo in the 'normal' range, but I can try - will raise it with the Eye Clinic next month. In case it's useful I will pass on what I have found. Eye clinic will not liase with endo in any treatment of your thyroid hormone levels that will be down to Endo alone. I knew recently I needed more levo. How could I go about getting it ? I phoned the hospital and got the name of the secretary to the Endo I had seen 2 years previously. I phoned her. 2 hours later the Endo phoned me back. I was able to put my case as to why I needed more Levo. He agreed and sent electronic script to GP . RESULT ! I should add it has taken years of researching and learning and reading on this forum to give me the confidence to stand firm to get the treatment I know I need for optimal health. Good luck with your journey.