Devastated and Struggling With Graves’, Hashimoto’s & 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. In October 2024, I attended A&E at St George’s Hospital in Tooting, London (near where I live). I was diagnosed with 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. 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. 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 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. Is there anyone else here who has all three diagnoses?
Thank you, and good luck to everyone on their journeys. All the best, Sandra Profile picture was September 2024
For me at 83,male, high blood pressure and hypothyroid, full hypothyroid in a year down to barely subclinical. High blood pressure misdiagnosed as more serious than it is digital reading 170/101 in fact manual reading 138 /90. Manual readings more accurate as digital uses algorithums. So wise to have a manual reading. I was told ,must take levothyroxine,not at my age! A vegan since 1967 was almost certainly an iodine deficiency. For,me treating symptoms when clearly known cause is not established is a mistake. Relying on a GP who is looking at their watch after ten minutes particularly when you have pituitary axis issue is not the answer nor is a busy endocrinologist they do not have the time . I have found AI conversation on the internet a great help. My high blood pressure I am sure partly historic trauma buried and never dealt with. Trauma now recognised as a significant cause of high blood pressure particularly when it does reduce drop from medication. Drop excess weight, diet as healthy as possible with carefuly chosen supplements and avoidance if possible of toxic relationships is a great help, easier said than done 😀
My eyes are a mirror to yours! I was told by an opthalmologist that I need cataract surgery which is why my eyes are sensitive
Not the case Sandra going to consult with plastic surgeon to repair how awful I look. Right eye is closing I look a hot mess, over active thyroid, lost 32 pounds I weigh 104
Three years, fighting to get help. Now, in remission, thyroid stable now for 2 years,now, dealing with the depression frustration because I did not research or take the diagnosis seriously I am a hospice aide 18 years
I did this same thing myself with my right eye. They told me the only way to stop my eye getting worse was to burn a bit of my retina and give up 15% of my sight. I did it and then it eventually fixed itself on it's own. I still think about it and curse myself for not doing my research and waiting a bit longer to digest things! But then again, I'm sure they got a great amount to charge the insurance company for the laser usage! You are not alone, it is frustrating! Keep on keepin' on, DPM
