New blood results

[Agho]

Hello All

I've told my story here previously and wanted an opinion on recent blood results.

Off Eltroxin since August '23 and had bloods done in January '24.

TSH 1.11 (0.35 - 4.94)

FT4 11.8 (9-19)

No FT3 done

TRAb very elevated, no number given. Graves confirmed again 57 years after surgery for it.

Endo said that there's nothing can be done to reduce the antibodies and since my bloods are in range come back in 6 months. Meanwhile, I feel unwell. Still getting palpitations and losing weight. Have relapsed TED with very tired, irritated eyes and some protrusion. I asked her to request a thyroid scan at the hospital so waiting on an appointment.

Has anyone any advice on managing elevated TRAb antibodies and TED? Feeling very upset at the lack of treatment available.

Thanks for reading.

[Buddy195 Administrator]

In the first instance Agho, I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED flares. Many take a maintenance dose of 100ug daily when the active phase of the condition passes. Preservative free lubricating eye drops are important, such as HycoSan or Hyloforte. For light sensitivity wear sunglasses (even indoors if needed). If you have any eye pain, my TED ophthalmologist said to take ibuprofen (with food to protect your stomach). Also worth doing is using 2 pillows at night, to elevate your head. I would also take pictures of your eyes (and keep in hidden on your phone) to show your endo/ ophthalmologist a record of your eye changes.

I received great advice and support from TEDct, so do get their information pack. They run a telephone advice line, hold regular webinars and have a Facebook group. TEDct helped me find a TED specialist ophthalmologist in my area.

Have you been offered a beta blocker to help ease palpitations (eg proprananol)?

For a complete picture of your thyroid health it’s important to have FT3 alongside FT4 and TSH. Key thyroid vitamin results are also needed- ferritin folate, B12 and vit D. Many members, myself included, test privately for these. Have you previously used a private testing laboratory in Ireland?

[Agho in reply to Buddy195]

Thank you Buddy195 for that very useful reply.

I use Hylo-forte drops twice a day to help with the dry eyes and wear react-to-light glasses all the time. Plain lens as I don't need glasses but they help disguise the eye protrusion of which I'm very self-conscious. I had full thyroid and vitamin panel done in November and all were well within range. I posted results previously.

I haven't heard of TEDct before but will get the pack and look for help there, thank you.

To answer some of your questions, I have a prescription for beta blockers but haven't filled it yet. I attend an endo in a private hospital and generally the lab tests everything I request but the FT3 somehow was overlooked this time. I intend to test again in May so will get full TFT done then.

I'll start taking selenium straight away and hope that helps the eye situation.

I'm a bit upset about the resurgence of Graves at this point in time as my daughter is getting married shortly and I feel I don't look my best right now. Thyroid disease is no fun at all

[Buddy195 Administrator in reply to Agho]

Definitely reach out to TEDct for further support re eyes.

tedct.org.uk/

I would take the beta blocker (even short term) to help with palpitations as I know from experience increased stress/ anxiety makes TED flares worse.