Who diagnoses TED; GP, endo or ophthalmologist?

[superb_lulu]

Hi. I have Graves and am 3 years post TT. I am generally well, but recently my eyes have been painful and sore, their focus is not consistent (my specs. don't seem to be effective all of the time), and my left eye sometimes seems a bit 'bulgy'. This may be perfectly normal, but if I do decide to seek a professional opinion, does anybody have any advice on which 'expert' I should approach first? All suggestions appreciated. Many thanks, Louisa

[puncturedbicycle]

I was referred to an ophthalmologist for something completely unrelated - the endocrinology registrar I saw had this completely fantastical idea that I might have myasthenia - and he diagnosed ted. I would assume if you're having eye symptoms your gp could refer you, so maybe that would be a good place to start.

[Fruitandnutcase in reply to puncturedbicycle]

Suppose he thought the 'lid lag' was MG but if he was an endocrinology registrar and you were there with Graves then he really ought to have known it was more likely to be TED.

[puncturedbicycle in reply to Fruitandnutcase]

She was crackers really. She insisted my measly 50mcg levo should be reduced to 25 (gp rolled his eyes). I told her I had some muscle weakness, arms mainly, which is a Hashi's symptom (I have Hashi's) but my face, whatever else you could say about it is normal. When I finally saw the consultant he seemed perplexed by the registrar's theory.

My eyes are dry (optician told me that years ago) and sometimes sting but they don't look any different than they ever did.

I also had a shadow on my vision which they insisted on calling double vision, and that seemed to make everyone a bit antsy. I wondered if that was what resulted in the referral. I did get a series of very thorough eye examinations out of it, but also a completely unnecessary chest xray.

[Fruitandnutcase in reply to puncturedbicycle]

Lol - at your GP rolling his eyes, your face being normal and the consultant wondering what on earth the registrar was on about.

Dry eyes are such a pain. The wife of someone we know accidentally put verucca killer into her eye instead of her dry eye drops - makes my eyes water just thinking about it - several hospital visits later she is fine but it wasn't a good thing to do.

Must admit I moved my Otex ear drops well away from my eye drops last week just to be on the safe side.

You do have to wonder why they did the chest x-ray don't you - wonder what they thought they would find down there? Very strange! x

[puncturedbicycle in reply to Fruitandnutcase]

Omg I will never look at eye drops the same way again! I usually use the little individual ones which are harder to mix up with dangerous chemicals, except maybe superglue - ? I'm going straight up to the bathroom and moving everything well away from anything that goes in my eyes.

Wikipedia says: 'A chest X-ray is frequently performed; it may point towards alternative diagnoses (e.g., Lambert-Eaton syndrome due to a lung tumor) and comorbidity. It may also identify widening of the mediastinum suggestive of thymoma, but computed tomography (CT) or magnetic resonance imaging (MRI) are more sensitive ways to identify thymomas and are generally done for this reason.'

[superb_lulu]

Thanks for your helpful replies. I am not even sure I can have TED if I no longer have a thyroid? Maybe I just have sore eyes? Just not sure where to start. Thanks again, Louisa

[galathea in reply to superb_lulu]

Getting rid of your thyroid does not get rid of Graves, or TED, Sorry.

[Fruitandnutcase]

On my first visit the endo asked me to follow his finger and said I had no 'lid lag'. I obviously didn't but my eyes are wonky. Sometimes they feel like the muscles aren't working properly, sometimes I get a kind of double vision or extra half image - especially noticeable when I watch the credits on TV.

I have really, really dry eyes, they sting, they water, they feel grim. If I use eye drops / gel tears every day as well as a face cloth wrung out in hot water held over them, I also steam my face with a facial sauna and that's good too - then they are fine but as soon as I stop the symptoms all come back.

Every endo I have seen and I have seen four so far, has said 'and your eyes are fine' I keep saying NO, they're not and explaining how they feel but because my eyes aren't bulging then how horrible they feel doesn't seem to matter.

I imagine your optician, your GP or your endo would be the people you need to see.

In the meantime if I were you I get myself some good preservative free eye drops and use them as often as you can every day to begin with then you can probably cut back to two or three times a day.

My favourite at the moment is stuff called HycoBak, I get mine from optician's shops they, I've never found them in a pharmacy, are quite expensive, you can get a prescription version but that is expensive and your doctor might not want to give them to you, there are other really good drops that eye specialists prescribe ( can't remember what they are called but someone else will probably come on and tell you)

Gel Tears are good though and you can get them in individual minims that are preservative free, don't bother with hypromelose, the effect wears off too quickly - just make sure you put whatever you get in as often as you can throughout the day, certainly to begin with and keep using them even when your eyes feel better - that's where I go wrong! I get lazy then I get sore eyes again. Definitely a case if 'do as I say, not do as I do'

[superb_lulu]

Thanks to everyone for good information and advice. I will start at the GP and see where it goes. X

[Hidden in reply to superb_lulu]

Hi yes you can have TED without a thyroid.

[marram]

You need to go for an eye test and tell the optician that you have Graves'. If they are worth their salt they will know you need an eye specialist. He/she should refer you to an eye specialist because TED needs special treatment - Selenium is one option which seems to be helping me. My GP had NO idea and was totally out of his depth.

It is not a trivial thing - if is really is Graves' Eye Disease, it is serious, not just 'dry eyes', and it can cause serious damage to your eyesight if not dealt with. You should see an optometrist who will also measure the amount of exopthalmia regularly to monitor for changes - and particularly if you are having trouble focusing, because the muscles can be affected which prevent you from moving your eyes properly.

Don't let anyone fob you of with drops and 'wait and see' - you should be properly monitored by an eye specialist.

I have been diagnosed with Graves' Eye Disease 32 years post-TT. If the Graves' antibodies remain in your system, as they have with me, they can attack your eyes even though the thyroid has been removed, because although it often accompanies thyroid problems it is strictly speaking a different disease and can occur completely independently of the overactive thyroid.

I am taking Selenium and using eye drops - the combination is making a difference. I am being monitored every three months.

[shaws Administrator]

This is from an article by Dr Toft ex President of the BTA:-

4 How does thyroid eye disease manifest itself and how is it treated?

Most patients presenting with the hyperthyroidism of Graves’ disease will have some evidence of thyroid eye disease, ranging from lid retraction with excessive lacrimation in bright light to marked exophthalmos with limited eye movements, diplopia and reduced visual acuity.3

The hyperthyroidism of Graves’ disease and thyroid eye disease are best considered as two separate, organ-specific autoimmune conditions, which frequently coexist. This explains why the eye disease may precede the hyperthyroidism or even occur for the first time years after successful treatment of hyperthyroidism.

The eye disease has its own natural history – a period of deterioration, followed by one of stability and ultimately of some improvement. But the ophthalmopathy will worsen if thyroid function is not controlled – whether through inadequate or excessive treatment.

The eye changes often persist for two to three years after successful treatment of the hyperthyroidism and although there may be significant improvement there is often residual disease, which can be improved by orbital decompression, strabismus surgery and eyelid surgery.

Of all treatments of the hyperthyroidism of Graves’ disease, iodine-131 therapy is associated most often with a worsening of the ophthalmopathy. For that reason it is relatively contraindicated in patients with significant eye disease. For these it may be better to use combination therapy with carbimazole and levothyroxine for the best possible control of thyroid function.

But if radioiodine is the chosen therapy, enteric-coated prednisolone 30-40mg daily should be prescribed for six weeks, as this has been shown to prevent deterioration of ophthalmopathy.

[Jackie]

Hi you should be under an consultant Opthalmologist., irrelevant that they are always surgeons!

Jackie