Devastated and Struggling With Graves’, Hashimoto’s and TED

Editor’s Note: This post was written by a former TED community member

Hi, I’m Sandra.

I’ll try to keep this as short as I can.

I lived with an underactive thyroid from 2016 until August 2024, when I was diagnosed with Hashimoto’s after scans and blood tests. I also have a number of other illnesses that predate this.

New diagnosis after ER visit

In October 2024, I went to the accident and emergency department at St. George’s Hospital in Tooting, London (near where I live). I was diagnosed with giant cell arthritis (GCA) based on blood tests only, with an ESR of 29. I was prescribed 60 mg of prednisolone and sent home with multiple packets, pending follow-up.

All symptoms worsened, including eye pain and swelling

Unfortunately, I didn’t receive a follow-up appointment until February 2025. Neither my GP nor I could get an endocrinology appointment despite repeated attempts. From October 2024 to March 2025, I went through absolute hell.

My eyes were badly affected (I had a closed-angle glaucoma attack in 2020.) — swollen, sore, and extremely dry. My heart, lungs, GERD, bladder and bowel conditions, oesophagitis, and diverticulitis all worsened. My mental health also deteriorated significantly, including mixed anxiety and depression, as well as PTSD from a knife attack in 1997.

I’m a very strong woman, but this has affected me in ways I can’t seem to get my head around.

Diagnosed with 3 thyroid diseases and scared

I later transferred to Chelsea & Westminster Hospital in London, where they immediately started block-and-replace treatment. I’ve had numerous CT scans, imaging, blood tests, etc. I’ve now been told I have both Graves’ disease and Hashimoto’s, as well as thyroid eye disease (TED), which I understand is rare — and that my TED was untreated for a year.

As you can imagine, I’m frightened and very low in mood. I don’t recognize myself compared to last year, and I truly miss who I was.

Anyone else with TED, Graves' and Hashimoto’s?

Is there anyone else here who has all three diagnoses?

Thank you, and good luck to everyone on their journeys.

All the best.

Profile picture was September 2024