Thinking of going Private for eyes

I have had thyroid eye disease for about 6 months. I have only seen my Doctor and as yet neither Endocrinologist or Ophthalmologist. My latest bloods showed cutting Carbimazole from 40mg down to 20mg did not work, on 40mg for 4 weeks I came down to 6.7 T4 then they reduced me to 20mg and went from 6.7 to 28! However in meantime I have started Levothyroxine 100mg daily!, so you can imagine after 4 doses of that what my levels will be. yesterday had a bone scan and a few weeks ago had a thyroid scan. next week see my Endo for 1st time. I feel the whole way it has gone is a complete bodge of an amateurish way.

I asked to be referred for a eye specialist who is not available for 6 weeks! So I asked what would happen if went private for 1st appointment then switched back to Nhs for prescription, my Doctor said an appointment can happen quite quickly and once they recommend drugs they will prescribe them!

This is like a living hell and need some quality care asap. 3 months of meds and I feel like I am back to step 1. Ok I know Doctors don't see many Overactive thyroids but basic things like heart rate should be monitored not be left to me to say is it normal to live in mid 90's to 120's everyday, for them to realise they have never checked it and give me propranolol straight away.

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17 Replies

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  • It is disgraceful to say the least. You are left to get with your problems and especialy TED which you would think would be an urgent case . You need to see someone who knows what they're doing.

    I think all doctors seem to be very unknowledgeable about anything connected to a dysfunction of the thyroid gland but overactive must be horrendouse and they should have prescribed propropanol. I also thought a referral should have been done quickly as you cannot rely on GPs for treatment. You've now been diagnosed six months ago. I should complain to your MP about your care.

  • Thanks Shaws, every time saw my Doctor I kept saying my eyes my eyes, was told yes they are the last to go with no interest in me seeing a specialist. My experience has definitely woke me up to the lack of knowledge many GP's and Endo's seem to have. Why would an Endo suggest a course of action based on last bloods before new bloods show whats going on! unbelievable to me but then you have heard this thousands of times by now.

  • Have you thought of going to optician about your eyes as I got referred to hospital via my optician as I have double vision and blurry vision as well as them feeling gritty, she sent e-mail to hosp while I was sitting there but still had to wait a while for appointment.

  • Sorry but this made me laugh! and tears rolling down face. I saw an optician as my 1st point of call, as had runny eyes and were slightly swollen. I came away with a new pair of glasses £135 and told to just take the drops he sold me. A month later went back and told him they were worse than ever, he checked them and said he saw improvement! Have some more drops. A month later as ringing for another appointment I decided best to go to Doctors, walked in and she said Overactive thyroid I have only seen 2 in ten years. Put me on 20mg carbimazole which was doubled next day by Endo has bloods showed low white blood cells! The rest is in my post above, but thanks Raventhorpe for responding, as you can see 6 months of hell with both optician and doctors failing me as a patient

  • Omg! You need to sack gp and optician as they both sound incompetent, the first thing my gp prescribed was propanol and spoke to endo on phone to decide what dose of carbimazole to give although had to wait 4 months for appointment with endo but was looked after very well by gp in meantime. But this was 20 yrs ago so things have changed for the worst.though had graves for 20 yrs my eyes have only started to play me up in the last 6 months. If you can afford it go private at least you will get seen quickly, suggest you take selenium in the meantime,as it's supposed to be good for people suffering with Ted.

  • Yes take 200 per day as recommended, thanks

  • How awful of the doctor to tell you 'eyes are last to go' which would frighten the life out of many patients who are left to get on with it.

    We have 50,000+ members so maybe a small number diagnosed and given levothyroxine compared to the millions on levo. If they don't improve or still complain of symptoms it is the symptom for which we're given 'another' medication instead of an increase in hormones or the addition of a little T3.

    This is an excerpt from the following link:-

    Can TED affect my quality of life?

    Yes, doctors are increasingly aware that TED can affect your psychological and social well-being. If you have fluctuating thyroid levels you may feel anxious and/or irritable and suffer from mood swings until your hormone levels are stabilised. You may also feel anger, loss of self-esteem or confidence, or socially isolated, because of the change in the appearance of your eyes. Treatment - including surgery - can often improve this; and counselling, or contact with fellow TED sufferers, can help you find coping strategies. Contact the British Thyroid Foundation, The Thyroid Eye Disease Charitable Trust, or your local eye centre for help in locating a support group.

    btf-thyroid.org/information...

  • I feel your pain, it's awful to have to suffer and overactive thyroid and have the eye disease. Really difficult to live with.

    I have severe thyroid eye disease and was diagnosed by my eyes. That was eight years ago. I've learnt a lot in that period. It makes me mad that doctors and endocrinologist have such a lackadaisical approach. You'll be glad to hear opthalmologists don't.

    GP's and endocrinologists know little, sometimes nothing about the eye disease. Opthalamologists admit they are still learning but certainly know enough and know more about your thyroid meds than, in some cases endocrinologists. I've seen some of the best eye doctors in the country. A opthalamologist will always see a patient with thyroid eye disease more or less immediately, they are very interested in the field and keen to help. To that end I would go to the eye clinic or ring them and ask if you can be seen immediately or at least sooner than your appointment. I am always surrounded by a the full team of eye specialists no matter what hospital I attend.

    I'm not sure if your eye disease is severe, moderate or light? Perhaps you're not sure either. The opthalmologist will be able to tell when they have a look and measure to see the level of prototis and will also test peripheral vision. If they feel that your optic nerve is not compromised by fatty deposits, they will prescribe either drops to prevent dry eyes, steroid drops to help reduce swelling or drops to reduce pressure. In some cases they order a CT scan at the first appointment so they have a start point to see were your eyes are now and then if the disease gets worse they can measure again. I had two or three MRI's and that shows up the muscle/fatty deposits behind the eyes.

    There is little rhyme or reason with the eye disease but here's some of the important points. You must keep your TSH low or surpressed, this helps keep the antibodies low and this reduces the attack on the eyes. Cigarette smoke will cause further problems and as I've found any chemicals that are strong, for example bleach or cleaning products to really cause irritation. Start sleeping with an eye mask at night, it really helps in the early stages.

    The eyes take priority over everything and your opthalmolgist should and will tell this. What they say regarding thyroid meds is king and let no other type of doctor argue, although they rarely do.

    I stupidly waited over a year to see an opthalmologist because I didn't understand what was happening to me, hence the severe eye disease!

  • thanks for such an informative reply, I am not sure where would be classed as but 6 months of swelling, redness. itching, tears etc is probably heading towards severe. Lately the eyes began to feel more solid when blinked and to be honest not much room for them! I dont smoke and only take Carbimazole, levothyroxine and now just started Propranolol. I will keep you informed on what happens as good to know others who have been through it.

  • sorry but with TED you should already have been urgently referred to the likes of Moorfields to a TED specialist

    go back and bang on desks and if nessecary insist on an emergency referral to moorfields

  • My Doctor is feeling guilty as have been referred to eye casualty at taunton! did not know they had such a thing, so just waiting for an appointment now. Thanks for reply

  • you do not need an appt for eye casualty just turn up

    TED is serious and must never never be ignored

  • thanks for Info reallyfedup123 good to know,

  • Go to your useless doctor and demand an urgent referral to a consultant ophthalmologist and also a consultant endocrinologist. It is disgraceful you haven't been referred yet. If they don't do that complain to practice manager then health authority if you don't get what you want. I was a practice manager and this treatment is disgraceful. Hyperthyroidism and graves are no joke and need to be taken seriously. I also have just been diagnosed with Graves' disease and hyperthyroidism. I was referrred but they told me by letter which basically said, your hyperthyroid, go to your dr and start tablets! I rang the hospital and complained that I'd not been given the opportunity to talk about it, or even had a chance to discuss MY treatment. Did I have Graves??? I didn't know as the letter didn't say!! The consultant rang me at home after my complaint and at least answered my questions but I wasn't impressed with my treatment either. I beg you, demand those appointments. You have a right to them.

  • Also, don't know where you live but there's a meeting today at Newcastle for people with Graves eye disease.

    Www.tedct.co.uk

    Aparently there's consultant opthalmologists there that you can talk to.

  • Thanks Gtretna99 I live in a very special place just outside porlock in SW. Problems only happen when illness comes. Hospital 30 miles away so we are quite remote and clearly have Doctors who know very little, probably see lots old aged people as live in large retirement area, but I still help run our own small tourist business and work everyday. I started Friday afternoon trying to sort it, just as NHS systems went down as was on phone!

  • Update on my post about my eyes. I finally got to my Endocrinologist last Tuesday and then.... a Ophthalmologist on the very next afternoon and finally feel listened to. Confirmed Thyroid Eye disease and then prescribed loads meds! Went home took the steroids and 2 hours later felt so much better for 1st time in months! Thanks for supporting by replying, I have creams for night drops for day bone meds thyroid meds gastro meds for steroids so hopefully can have a settled period of time now as levels come down and start block and replace in next couple of weeks.

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