Do I have Ords?

[northsix]

I’ve been having a big flare up of symptoms following knee replacement last July. Recently my eyes have become very inflamed, blurry vision, pain when I move my eyes sideways or up and down and they ache and feel like they’re burning. I finally saw the GP who was quite concerned so ordered an Opthalmology appointment. That came through yesterday for March 24th 2025! I asked the GP if it was okay to wait that long and his reply was that he didn’t think so but he wasn’t an ophthalmologist! Regarding the long wait he said it was an indication that the NHS was broken. Anyway, the appointment came through on the NHS app and I was running through my test results and I saw that I was tested for serum thyroid peroxidase ab at the end of January last year. I was never told I was having this test done - the GP was testing liver function, but I noticed the result was 13 iu/mL and the range was below 5.5. The healthcare professional’s comment was ‘no comment’ and I probably called the surgery for the result and was told all was well. Does this mean I have Ords? I have Graves’ disease and only 15% of my thyroid left and I’ve been feeling pretty awful for a long while now. Any comments gratefully received. Thank you x

[Buddy195 Administrator]

Concerning your eyes;

Most people who develop Thyroid Eye Disease-TED have an overactive thyroid and Grave’s Disease, whereas some have it with an under active thyroid/ Hashimotos (like myself) and a few have it who are euthyroid (no thyroid condition).

I recommend you take a Selenium supplement, 200ug daily, as this has showed to help in mild/ moderate TED when taken in the first 6 months. Many take a maintenance dose of 100ug daily when the active phase of the condition has passed. 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.

Above all, please don’t overdo it on Google images, as they show ‘worst case’ scenarios.

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.

I was originally given a diuretic (furosemide) to help reduce eye lid swelling, but it didn’t do much for me. I found both hot and cold compresses did ease some of the swelling.

I recommend you take ongoing photos of your eyes/ alignment and store in ‘hidden’ on your phone, as you don’t want to be looking at them all the time. Having this bank of photos over time is useful when I have both endocrinology and ophthalmology appointments.

I also take lutein & zeazanthin (Eye complex 7 on Amazon) for overall eye health, so this is worth considering if you have any concerns about your vision.

Regarding Antibody tests:

 Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

Can you share your most recent thyroid blood tests: TSH/ FT3 and FT4?

[northsix in reply to Buddy195]

Thank you Buddy195. I have taken on board everything you’ve recommended. I do eat a couple of Brazil nuts every day but probably the supplement will be more efficacious. I’ve been using colloidal silver eye drops as I originally thought I’d got an infection. I will get the HycoSan or similar instead. I’ve worn sunglasses all year round and often indoors for years now as I’ve always had light sensitive eyes. I will get on to TEDct as you have suggested. I was diagnosed with Graves in the mid-nineties and had a partial thyroidectomy leaving me with 15% of my thyroid. I was never given any advice post op and have struggled ever since. I have never seen an endo since the op either, although the GP has just requested an endocrinology appointment for me. The antibody test done on 31st January last year was the first antibody test I’ve had. Obviously the GP considered it normal. My most recent tests were from 4 months ago:

TSH 2.70 (0.27-4.20)

FT4 14.8 (12-22)

FT3 5.7 (3.1-6.8)

I am currently taking 600mg ThyroGold, B complex, 10000iu D3 + K2 and a probiotic. I have definitely gone downhill since then.

Kind regards

northsix

[pennyannie]

Hey there again :

Are you still taking ThyroGold ?

The TPO antibody range it 's generally only a positive when the reading comes in over 30 :

I'm not sure of a range detailing a cut off at 5.5 ?

With only a very small proportion of your thyroid gland left in situ due to Graves and having had a thyroidectomy some years ago I just wonder if these issues started when you started taking ThyroGold -

I know you felt much better on it - but there are some people who find they can't tolerate any ' natural thyroid replacement ' - whether it be ThyroGold or Natural Desiccated Thyroid - as introducing more thyroid gland into their system triggers their immune system further.

These people need to take synthetic T3 and T4 thyroid hormone replacement.

It's just a thought - I'm really sorry you are having issues with your eyes :

There is the Thyroid Eye Disease Charitable Trust - tedct,org.uk - who can signpost you to specialist eye units - generally attached to large teaching hospitals - where specialist endocrinologists and ophthalmologists with an interest in Graves and AI disease work together to find the most appropriate treatment options for the patient.

Having also had issues with my eyes - please ensure whatever drop or ointments you may use to ease any discomfort - please ensure that they are all Preservative Free - even those prescribed by the NHS .

[northsix in reply to pennyannie]

Thank you pennyannie. Yes I am still taking the ThyroGold. I’ve been on it for almost two and a half years now. Generally speaking I’d say I have fared much better on it than Levothyroxin. I have had a couple of what I call ‘flare ups’ where certain symptoms get much worse, but this one affecting my eyes has really taken hold. I have an appointment with Opthalmology for March next year. The GP THINKS I won’t have any adverse affects in the meantime (his capitals not mine) but says he’s not an ophthalmologist. Also the reason for the long wait is that the NHS is broken and if I call the hospital direct and they say my GP can help get an earlier appointment they are lying. A most unhelpful response as obviously I am not an ophthalmologist either! I didn’t have the bandwidth to tackle the Tedct website yesterday after having my two year old grandson all day but I will look into it today. Buddy195 also suggested Tedct. To be honest I’m feeling a bit despondent about it all as I am not hopeful of sorting out what’s going on any time soon. Thank you for your help and advice, it is much appreciated x

[pennyannie in reply to northsix]

Please check that your eye drops are Preservative Free :

[northsix in reply to pennyannie]

Thanks for that pennyannie, I will check when I buy them today x

[pennyannie in reply to northsix]

Preservative Free - must be the first priority as without sufficient natural lubrication and contents of eye drops can go into the eye lash base and build up causing further irritation and making everything 10 times worse.

To clean your eye lash base use a warm moist clean flannel compress on closed eyes and simply lay down, relax and gentle massage around your eye socket and especially down towards the eye lashes.

Hope that helps - I was prescribed eye drops and ointment that exacerbated my eye issues - and this helped dislodge the build up of ' gunk ' in my lash base and I then purchased Preservative Free drops which eventually found their way onto my NHS prescription but in the last few years it seems these were too expensive for the NHS and I'm back to buying my own.

[Bertwills]

Hello, I would suggest that you book an appointment for an eye test with a high street optician. I did this recently, having not had one for 5 years due to lockdowns, House move etc. I was very shocked to be told that I’d developed cateracts on both eyes but, even worse, there are problems with my retinas. Possibly diabetic retinopathy. although I’m not diagnosed as diabetic.

Anyway my main point is that the optician write a letter that I had to take the next day to A & E for an emergency appointment. I had very thorough testing & have drops to use & a return appointment next month.

The optician will check many things during the usual eye test & can spot problems so you go to the head of the queue if urgent.

I used Vision Express & they were brilliant. Paid £6 for an enhanced eye test. Well worth the extra.

[northsix in reply to Bertwills]

Thank you Bertwills. I have annual eye tests and I always have the enhanced full eye scan. I had started seeing floaters and occasional flashing lights and the optician confirmed I have started to get cataracts but I’m not bad enough for surgery yet. I’ll sort out an appointment today and see if they have any idea what’s going on. Your advice is much appreciated thank you x

[Zephyrbear]

Not sure if this will help, but I see an independent optician regularly and rather than rely on a free NHS test (which they’ll only do every two years) I pay £50 for mine. This does also include a full eye scan which goes much deeper than an ordinary eye test and will show up any problems with the interior of the eye, the retina and optic nerve etc. Thankfully, I got a clean bill of health, but my husband who has T2 diabetes (caused by taking statins) had some worrying signs with his optic nerve and was given an urgent referral to the ophthalmologist which came through within a week.

[northsix in reply to Zephyrbear]

Thank you Zephybear. I can see from the advice members are giving me that I should definitely get my eyes tested as soon as possible - something I can do quite easily while I wait for my Opthalmology appointment for next March to come through 🤣. Hopefully someone will have an idea of what’s going on. Many thanks x