Updated Bloodwork! Graves, TED, Thyroidectomy?

[TeahM602]

Hi everyone! This is a continuation of my last post and questions.

I got bloodwork back this morning. I am currently on 20 mg of Methimazole daily (up from 15 in the middle of December).

TSH <0.01 (still! Has been this low for over a year)

T4 Free 1.4 (0.8 - 1.8)

T3 Free 3.9 (2.3 - 4.2)

I am in the normal range for T4 and T3 for the first time in a year. I do not have my antibody counts as I have another lab scheduled in two weeks with my new endocronologist. I was referred to a surgeon and she recommends TT.

I am certainly on the fence about a TT. I'd like to try to manage the Graves' Disease with medication for as long as possible.

My question is about my TED. I am waiting on insurance approval for Tepezza. If my Graves' is controlled is it possible my TED could flair up again? I don't want to go through medication and surgery on my eyes to only have them bulge out of my head again if my thyroid levels go up?

Anyone go through this or have an advice?

Thanks!

[Cavapoochonowner]

Hello there,I had a total thyroidectomy due to graves 2022.I also have TED.I have irriration,dryness,bloodshot and slightly bulging eyes.My opthamologist describes it as mild TED.He did say that a thyroidectomy would benefit my eyes as there wouldn't be the fluctuations in thyroid hormones which cause the inflammation.

I had to take 6 weeks of tapering off steroids straight after my operation to prevent a flare up.This seemed to work for me.This year however I have suddenly had TSH over 10,high in range T4 and low to under range T3.It seems I'm not converting well.I just take levothyroxine. My eyes have been more irritated.

I am trying to increase my conversion by increasing calories,supplements (vitamin D,selenuim,zinc,magnesium, vitamin C,omega 3,6,9.I will start B vitamins in a couple of weeks.

I am due to see my opthamologist again in a few months.I have accepted my eyes as they are and wear transition lenses to slightly disguise them.

I have to take daily drops as I also have raised pressures in my eyes(my dad has glaucoma).

I was offered a steroid injection when they were at their worst at the beginning and I had slight double vision but I didn't want it.I have had 2 cataract operations and a detached retina in the past so I just took anti- inflammatories.

This is my experience,overall I am glad I had my thyroid out as I do feel better and my eyes are more stable.Hope this helps.

[PurpleNails Administrator]

TED is considered a separate condition to Graves. They occur together often but TED can occur in those without Graves & they are treated by separate specialist.

TED sometimes reoccurs after treatment for Graves (surgery / radioactive iodine & remission of Graves) or can appear for the first time after treatment. Many report it’s is most affected when levels are high / low / fluctuating. So the best control you have of levels is what’s it going to help your eyes the most.

Some choose block & replace (higher antithyroid with replacement levothyoxine) to ensure stable levels.

If you are well replaced after thyroidectomy that will help TED but there are no guarantees either way because TED progression is independent of thyroid progression.

Do you take selenium 200mcg maximum (reduce to 100 after 6 months). This can help TED.

Using preservative free drops can also help.

[TeahM602 in reply to PurpleNails]

Great info! Thanks!