I have heard a specialist ophthalmic nurse insist to a patient that Graves' Ophthalmopathy only occurs in hyperthyroidism.
Whilst a full review article including links to all known case reports might be desirable, even one case report demonstrates that it is possible.
I think it is also good that the authors have openly admitted they did not know how best to treat - and just adapted the usual treatment from its occurrence in hyperthyroidism as a best guess. (What else could they sensibly do? But it highlights their difficulty.)
Cureus. 2022 May 12;14(5):e24954.
doi: 10.7759/cureus.24954. eCollection 2022 May.
Graves' Ophthalmopathy in the Setting of Primary Hypothyroidism
Sarah Alajmi 1 , Sara Alshehri 1 , Aishah Ekhzaimy 1
• PMID: 35706740
• PMCID: PMC9187251
• DOI: 10.7759/cureus.24954
Free PMC article
Abstract
Graves' ophthalmopathy (GO) is commonly associated with hyperthyroidism secondary to Graves' disease (GD). Although rare, there have been case reports of it occurring in patients who are hypothyroid with underlying Hashimoto's thyroiditis (HT), as well as in euthyroid patients. Below, we describe a case of GO developing in a patient who has hypothyroidism secondary to HT successfully treated with high-dose steroids. We present a case of a 53-year-old female known to have primary hypothyroidism (Hashimoto's thyroiditis) diagnosed at the age of 39 years and has been on levothyroxine since diagnosis. She presented to our endocrine clinic complaining of new-onset diplopia and periorbital swelling for five months. There is no previous hyperthyroid state or radioactive iodine therapy. Examination showed left-sided upper and lower eyelid swelling, limited abduction with diplopia, and mild punctate keratopathy. Laboratory investigation revealed positive thyroid-stimulating immunoglobulin of 500 IU/mL (normal value: <140 IU/mL) with thyroid-stimulating hormone (TSH) and free thyroxine (FT4) in the euthyroid range. She was found to have a small heterogeneous thyroid gland on ultrasound suggestive of atrophic thyroiditis, and magnetic resonance imaging (MRI) of the orbits demonstrated bilateral ocular proptosis with extraocular muscle enlargement. The patient was diagnosed with active moderate-severe isolated GO with a background of HT, clinically and biochemically euthyroid on levothyroxine. She was referred to an ophthalmologist and was started on a course of high-dose oral prednisone tapered over three months, which was followed by oral selenium and botox injections to both medial recti muscles. Graves' ophthalmopathy is an uncommon presentation in hypothyroid and euthyroid patients but should be considered in the differential diagnosis. The incidence varies between studies from 2% to 7.5%. Awareness of this clinical presentation is important, as early detection and treatment can prevent visual complications. To date, there are no clear guidelines on how to treat GO with underlying HT. Treating our patient with high-dose steroids extrapolated from treating GO secondary to GD showed significant improvement in her symptoms.
My sister had really bad TED, she had awful swelling, double vision and all the rest, she is hypo and no history of Graves although my other sister and I both had Graves. I have known other hypos with TED.
It is flat out denied by too much of the medical establishment. And, even in the article, its rarity other than in hyperthyroidism is quite strongly stated.
(I think papers which use terms like "rare" should always have to express numerically what they mean.)
I’m under a leading Professor of ophthalmology with a specialism in TED. He has diagnosed me with TED and Hashimotos and told me that he has many other patients with an under-active thyroid (although it is far more common in Graves/ over active) and has a few patients who are euthyroid. Recent TED webinars organised by TEDct have also had specialists support this , although admittedly many endocrinologists and ophthalmologists who are not TED specialists are a little behind the curve!
The gap between what the absolute handful of best informed, most specialised specialists know and even the next nearest can be huge. Let alone as we move further away.
There is far, far too much re-wording and interpretation of documentation. Which means that most of it never gets updated.
Every flaming part of the NHS - every department, establishment, CCG, GP surgery, opticians, and on, decides to produce their own versions. Even if the only changes are names, addresses, dates. But once produced, that is that.
This, even if your professor published the most excellent details paper, we'd probably have at least hundreds of NHS documents which will never include that information.
Care for TED is awful. I’ve read many examples on here of those even with known Graves & positive TRab or TSI. To have eye issues readily dismissed by GPs & specialists.
Those who are hypo, euthyroid or like me hyper but without antibodies don’t stand a chance of help.
In this article from rare diseases it notes “However, not everyone with thyroid eye disease has these immune system abnormalities suggesting that other abnormal antibodies or other factors can cause thyroid eye disease in some people. Researchers are still investigating the underlying cause of the disorder.”
So not only can it occur in those with hypothyroid it can occur in those who are euthyroid & do not have thyroid antibody formation too.
I had very slight eye misalignment from years before, when I complained it seemed to be worse after a year of being on carbimazole. My GP immediately assumed I had TED and told me to tell endocrinologist. Who promptly dismissed any connection & said as not thyroid related - see GP. (Whilst pushing a consent for to the RAI which I “must” have). GP didn’t understand and said but you have hyper - why won’t they help? In the end I saw optician and they wrote letter advising referral.
Even that wasn’t straightforward. The optician read my medical history in the pre appointment online form & phoned the day or appointment to cancel and said I must have a consult with emergency eye service first. I waited all day for a telephone consult & they advised I should have sight test - with optician.
After several months on wait list hospital booked a video consult. First thing specialist said was video consult was in error & should be in person. Then she said she can see the misalignment, but as it’s mild (& vision so far unaffected) the NHS would not offer surgery and having TED complicates it. I said I was told it wasn’t TED, so I’d like to know the cause & prevention of it worsening. She was clearly flummoxed & said TED had been mentioned in notes - but id be put down for a fact to face consult.
I’m sure I have TED but who the hell do you go to to get it investigated? Opticians behave as if I have never mentioned it, complete gaslighting. I told the doctor, I told the endocrinologist and then I got sent for myasthenia gravis testing which I don’t think I ever had. Never the most likely thing like TED always something completely obscure and highly likely to be irrelevant. It’s started up again after c 10 years - all I need for starters is an antibody test. I think you can buy one but it’s quite expensive but why should we always have to do their work, just because our physicians won’t. I could raise it with the GP but the local eye hospital is a nightmare you get an appointment letter after the appointment date given has passed, you can’t get through on the phone and they don’t allow any re bookings any longer than 2 weeks ahead and they’ll probably cancel it anyway and tell you to rebook ad nauseum . I’m told if you can actually get through all the ridiculous barriers and get to see them they are quite good. It’s awful really as it can cause very serious problems, and greatly impact on quality of life. I just can’t face the battle at the moment. I’m hoping it goes back into remission
So often, the non-medical aspects have as much impact on us as the medical. That is, the whole getting through to them can prevent us getting treatment at all.
Yes that’s exactly what happened to me. I was not listened to and made to feel I was imagining it all. In the end I gave up going to the doctors because I believed I was a hypochondriac and not ill at all. I became so poorly just trying to get from moment to moment became my sole focus. I was a physical and mental wreck. I’m glad something in me pushed me to go to the surgery with the intention of not moving out until I had got what I needed. I think deep down I knew I would die if I didnt get help fast. I was lucky to get a fantastic GP who acted quickly and decisively and saved my life. But why did it take so long for anyone to listen? I repeatedly mentioned there was a history of thyroid disorder in the family and thyroid cancer. Was it because I had no goitre and was very thin? Or was it just laziness a middle aged women must be the menopause attitude, although I had problems long before that.
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