Oculoplastics - a good experience

[Someday_maybe]

Updating for anyone following my crazy journey!

Oculoplastics appointment today which was a very positive experience. Consultant and Speciality Doctor were both very compassionate, respectful and knowledgeable.

Lots of tests etc completed today and visual fields last week so the brief summary is no evidence of vision loss and no compression to or damage of optic nerve at the moment. As expected, active TED in both eyes, with left slightly worse than right.

Priority is thyroid control.

Plan is for MRI of face and steroid injections into the eye muscles hopefully starting before Xmas. Recheck TRAb in 6/8 weeks to compare results, on the basis that increased TRAb will likely mean TED will worsen, whereas decreasing TRAb will likely mean TED has peaked.

Review 3 months- Consultant will likely recommended thyroidectomy if increasing TRAb or things aren't stabilising.

If things are settling, with or without thyroidectomy, then it will be maintainence until TED becomes inactive and then eyelid surgery if I want it - but it's a long way off, and probably 5 years in total.

Yay for a good experience though. It was very welcome!

[pennyannie]

Hey there again :

Glad you had a good appointment and feel comfortable in what has been suggested -

Is there any liaison between departments ?

One would think there has to be as this is a joint treatment plan with' thyroid control ' being the essential main component -

Hopefully all will become clear when you see this new endo consultant -

Have you heard back from the medical secretary re your dose of the AT drug ?

[Someday_maybe in reply to pennyannie]

Hey,

The 'liaison between departments' yesterday consisted of the consultant losing his **** that (a) the visual fields testing from last week had not been uploaded and sending someone to find it and manually upload it and (b) no-one thus far had recommended/prescribed selenium supplements so what the heck were the Endo Team doing and the only reason I am taking it is based on my own research😂

But yes, I think once I've seen the new Endo Consultant next week, it will be easier to get a joined up treatment plan going even if that means me doing the joining up for a bit until it's a workable plan.

Medical secretary advised getting NHS bloods done (the ones I posted here medichecks) so I did that yesterday whilst I was at the hospital and should have those results today - I've let the Endo Nurse know also in the hope that someone checks the results and calls me this afternoon with an update. Interestingly whilst the Endo Nurse seemed skeptical when I told her I think I am now (massively) overmedicated, the Consultant yesterday was far more 'trusting' and agreed it sounded like I am - I've developed aphasia type symptoms in the last 4/5 days as well which fits firmly in the hypo category. I will chase results and subsequent plan for officially reducing AT meds this afternoon again.

[pennyannie in reply to Someday_maybe]

Yes - I'm so sorry, this reads as though your cognitive functions have now been impaired - it is too low a level of thyroid hormones - especially T3 - - and with the brain and heart takes the lions share sof T3 - just to function - the rest of your body is being further short changed of thyroid hormones.

I'm not sure what to say - other than your observations of the situation are brilliant -

I'm glad I asked you though as you need to try and decompress from all of this -

hopefully just writing out your experience has alleviated some of the anxiety and uncertainty you must be feeling - many use this forum just as a source of relief and that's ok too:

Onwards and upwards :