Thyroid eye disease when hypo

I am hypo and last year developed dry eye, blurred and double vision just after major surgery. Although I now know these are hypo symptoms no optician, ophthalmologist or GP have taken any interest other than to keep changing my prescription for glasses. Even with new glasses, the double vision is still there and is very distressing. Does anyone know of a specialist either NHS or private who might be able to help. I live in the south west. Please pm me if you can help. Thanks

35 Replies

  • You must get a referral to a hospital that specialises is thyroid eye disease, there is an eye hospital in Bristol but you would have to find out if they can treat you.

  • Royal Devon and Exeter and BRI in Bristol treat TED.

  • thanks bantam12. I spent hours at the RD&E being assessed. Told them I had hashimoto's disease, but nobody mentioned thyroid eye disease or its implications. They just sent me off with some drops and said 'use them when you need them'. They didn't understand the distress at suddenly having blurred and double vision. Do you know what can be done? How can it be prevented from further deteriorating? many thanks LB

  • RD&E are normally on the ball in our experience although not had dealings with Endos or eyes.

    My sister is hypo and she had severe TED, she had to give up driving for a year or so, I think she had some steroid treatment but other than that she just had to wait for it to die down.

  • Thanks for this. I will keep plugging away at it. I am not at all confident about driving at the moment, but again, no one seems to realise that this is a problem. I hope your sister's condition has died down. Mine, I am told won't get better on its own, but sadly it is deteriorating and I would love to know if it will stabilise.

  • You are supposed to tell the DVLA and not drive if you have double vision, I would guess could be tricky if you had an accident and hadn't declared it.

    My sister although better has been left with eye problems and the TED does flare briefly sometimes.

    Sounds like you definitely need to see an expert asap.

  • I didn't know!. Obviously I will have to research further and go back to my doctor. Thanks

  • Check double vision on the DVLA website, doesn't matter what the cause is.

  • No solutions for you I'm afraid but I had the same thing at rd&e 2 years ago. My optician noticed that one eye seemed bigger and referred me to the eye dept. Both her parents have thyroid probs (hypo & graves) so she was prob a little more clued up. Consultant just said the same, take these drops. No explanation as to why. Experiences there have been similar across the board for myself and young son to be honest. They always seem to know the right noises to make to shut someone down so I guess the best way to get action is to have a comprehensive list of questions and making sure you get those answers.

  • Are the drops solving the problem for you? They certainly lubricate my eyes but I'm still seeing double and it is getting worse. I agree RD&E make the right noises and aren't they busy!

  • Stupidly I lost the prescription so haven't used any eye drops but didn't chase it up as really didn't feel they were necessary at the time. Felt like I was being fobbed off tbh. I could probably use them now as starting to get a few eye problems but that could be down to the pernicious anaemia. Although I do have a suspicion that I have myasthenia gravis. I dread going to the hospital, it's far too busy and nobody really seems to care or know enough to look deeper. Even 13 year son has above range TSH and apparently no evidence of hypothyroidism.

  • If there is a Moorfields Eye Hospital within your local hospital I'd ask for a referral.

    I have one in my local hospital and it has a walk-in centre for eye problems.

    It might be suggested you have a further appointment to look more carefully at your eye problem.

  • Thanks Shaws, we don't have a Moorfields hospital in the south west, but I will keep plugging away at this. It is deteriorating too fast!

  • The Moorfield Eye Clinic is within my local hospital in Surrey. It isn't the main Moorfields which is in London. Check with your local hospital if they have a Moorfields Dept within it.

  • There are several from Surrey to Bedfordshire, but none out of the home counties sadly as far as I can see.

  • That's a pity.

    Ask GP to refer you to an opthalmologist as eyes are very important.

  • If these problems began just after major surgery I suspect that your problem is caused by B12 deficiency.

    There is a gas called nitrous oxide (laughing gas) that is used in many anaesthetics which destroys a lot of the B12 in the body. If people have plenty to start with and absorb it well from their diet then it doesn't have a major, long term impact on people. But anyone with low levels to begin with and/or who can't absorb B12 from the diet is at risk of all sorts of B12 deficiency problems.

    (I searched for "anaesthesia nitrous oxide B12" to get the above links. There are many, many more available!)

    You need to get your B12 and folate levels tested ASAP. Don't start supplementing until you've been tested because doing so will distort the results and prevent you getting a diagnosis and treatment. Make sure you get copies of the results and reference ranges and post them into a new post and ask for feedback.

  • thank you humanbean, I learned about vitamin B12 after waking up from a previous anaesthetic with tinnitus which I've had ever since. So this time, I used high dose patches for six weeks once the eye problem became apparent. I didn't have my B12 checked though. I've never had a B12 result less than 500 and am always told it's fine, but I realise it isn't always absorbed. I once had an active B12 test which also showed good results. It may well have been part of the problem, but sadly it's too late now for the eye problem to be reversed other than with surgery I understand.

  • I had no idea that I had dry eye, until seeing how badly my husband was suffering and recognising some of the signs... he went back and forward to doctors with 'his eye complaint'. It finally took a nurse in the specialist eye clinic at one of our Teaching Hospitals to say it was "Dry Eye" since it was missed for so long for him.

    He uses Hylo-Tear (drops prescribed on NHS), I tried it and, albeit mine is nowhere near as bad as his, it does help enormously. Next optical eye test I had, dry eye was diagnosed for me.

    I am hypothyroid, my husband is not and he's younger than me but has had it much longer than I have... seemingly dry eye syndrome happens for some people. Hope this link helps.

  • oops, should have replied to you personally. I just added my reply to the thread, this is what I said: Thank you very much for this. The handout is very helpful. I have been given drops and use them several times a day and sometimes at night. It does help the dry eye, no doubt, but it's the blurred and double vision which is getting worse, that really troubles me and I think it may be related to thyroid disease.

  • Thank you very much for this. The handout is very helpful. I have been given drops and use them several times a day and sometimes at night. It does help the dry eye, no doubt, but it's the blurred and double vision which is getting worse, that really troubles me and I think it may be related to thyroid disease.

  • Blurred vision can come from dry eye (husband keeps telling me if I complain about blurring) but double vision is something to go to the doctors with - whether thyroid related or not - any double vision needs to be checked out. Make an appointment. Best wishes, take care xx

  • I have hashimoto's and have eye issues, after much toing and froing to my local hospital and its outreach services i have been diagnosed with meibomian gland dysfunction MGD causing dry eyes and much discomfort and also map dot fingerprint dystrophy which is basically the cells on the front of my eye coming off causing pain and blurred vision. Not sure if yours is anything to do with this, my eye doctor didn't know if there was any connection he only new about Graves and that eye disease (bulging eye one) . Give them a google se if they fit your symptoms, good luck with it all.

  • Sorry, replied to everyone! I wonder if you have double vision too?

  • Thank you for your reply. It may well be similar. Do you have double vision too? I will keep on at my GP, I do feel that I need to get a second opinion.

  • had testing & new glasses done at bradleys opt in penzance. the woman there was excellent, told me things i didnt know/ needed to know, and sent letters to gp, recommended an eye health supplement etc. i have been to numerous specialists in the last 6 years and not one can touch her... ironic

  • Wish I had a good optician! I just keep getting new and stronger prescriptions every few months. Thanks for your feedback. I am determined to get to the bottom of it.

  • lisabax,

    Did you notice this thread?

  • Thanks helvella, I've looked at it now. Very helpful.

  • Also worth checking the side-effects of any other medications you might be on e.g. for high blood pressure / heart conditions etc since these can often cause dry mouth and eyes / blurring of eyesight etc. I have suffered from dry eyes and dry mouth for many years and latterly my vision has started to become blurred. I was having incidents of blepharitis and keratitis (painful eye ulcers) and received eyedrops to clear the keratitis up and advice on how to keep the blepharitis under control. I also have another very rare autoimmune condition and, on their forum they were discussing some of the other autoimmune conditions they have and mentioned something called Sjögrens Syndrome - the primary symptoms of which are dry eyes and a dry mouth. In addition to the dry eyes / mouth I was experiencing a tightness on the right side of my neck with a numbness extending up to my ear and a blocked right nostril. At one point, I had a bit of a panic as I had difficulty swallowing and breathing and ended up in A&E. Was prescribed artificial tears, artificial saliva and a steroid nasal spray. Superficial treatment.

    What I find really concerning is that people like Dr Isabella Wentz are trying to do a bit of awareness raising to alert people - especially doctors - to the complications of thyroid conditions -especially Hashimoto's - if left untreated but still the machine that is NHS grinds on oblivious.

    Dr John Bergman widens the scope a little to look at autoimmune conditions in general and has many, many Youtube videos dealing with these - some specifically on thyroid issues. He points out that, where many docs scratch their heads and wonder why the immune system attacks itself and prescribe treatments aimed at suppressing the immune system, the immune system is actually carrying out its job to perfection and that many of the problems that people with autoimmune conditions such as Hashimoto's experience are down to leaky gut syndrome (apparently about 80% of our immune system is controlled by our gut so, when our guts leak (as is apparently often the case with Hashimoto's where people often have coeliac's due to gluten sensitivity etc.) our thyroids get attacked. What makes me even more concerned is that experts such as Wentz and Bergman have indicated that not tackling the underlying problem gives rise to other medical issues such as high blood pressure, atherosclerosis, B12 issues, iron deficiency anaemia, gallstones and loads of other autoimmune conditions.

    I was recently told my thyroid was fine but knew that to be far from the case so got tested privately and, surprise, surprise, was advised I have Hashimoto's another autoimmune condition. Looking back now, I realise that I commenced thyroid treatment approximately 40 years ago and that, had it been handled appropriately, I may not have gone on to develop many of the other health issues I have developed that eventually led to early retirement on the grounds of ill health and developing a rare autoimmune condition that has resulted in mobility issues and in me becoming housebound. I eventually got sick of being told my thyroid test was fine and decided to get it tested privately and discovered I have Hashimoto's with a little bit of Grave's thrown in for good measure. I sent the results to the GP, who checked with the biochemist at our local hospital and was advised that my TSH and T4 are normal so nothing more is required other than that I stay on my current dose of Levothyroxine!!!! This, despite the fact that they hadn't checked the T4 levels etc.

    Ever feel you are banging your head against a brick wall?!!!

    Sorry, just realised I have gone somewhat off topic but wondered if you had checked possible side effects of any other medications you are on / were experiencing dry mouth etc for reasons touched upon above?

  • Hi, I'm so sorry to hear all that you have suffered. I switched to NDT and have had fewer symptoms since then. i'm not perfect but better since I made the switch. I don't think there are any medications that have caused the vision problems. What I now believe is that the 7 hour operation I had was a major threat to the immune system, and I think I should probably have increased my thyroid medication dose for a while. Nobody of course tells you that, but with hindsight it is kind of common sense to support the immune system temporarily. Thank you for your kind advice.

  • You could be right about the op. I noticed somewhere that someone mentioned about nitrous oxide being used for ops and how it affects B12 levels. That is another recognised but seldom mentioned issue. The anaesthetist is supposed to check your medications to ensure there are no nasty surprises but....

    Glad the NDT seems to be working for you. Getting someone to prescribe it seems to be the issue. I am loathe to change my GP as she has been excellent in other respects. Had been exploring LDN as it has a reputation for tackling various immune issues and I was thinking it might alleviate several conditions that I have. It is available on prescription but apparently most GPS know little about it so there is a problem getting it prescribed. It is possible to be screened via Skype and, if deemed a suitable candidate, a prescription can be made out and treatment proceed Would feel happier were it done through a GP closer to home.

    Hey ho. Happy days! (or should that be DAZE lol!)

  • I am getting my NDT prescribed by a doctor in Bristol. (I don't know where you live?) and I'm going to ask her about LDN when I go back in April. After one face to face consultation, I usually speak to her on the phone.

  • Is the doctor in Bristol different from your regular GP? Would be interested in finding out if she will prescribe you LDN.

    My rationale for pursuing the LDN option is that I have several autoimmune and blood issues and they all seem to come under the umbrella of what LDN can be used for so I might be able to address several issues at once. The LDN websites do however highlight that a careful eye has to be kept on people with hypothyroidism as the results can sometimes be extremely fast - with people going from hypothyroid to hyperthyroid in a matter of days. Some are apparently lucky and go into 'remission' when being kept on a maintenance dose. The titring of the dose is very important.

    Another thing that compares favourably is that LDN is very cheap in comparison with some of the costs quoted for NDT - coming in at somewhere between £20 and £30 per month.

    Haven't checked the contents yet but chances are it would be vegetarian friendly, which NDT is not.

    What works for one might not work for others though. It's a case of trial and error. 😊

  • Yes she is a different doctor who practices integrative medicine and I will ask her about LDN, but not sure how clued up she will be. For you it sounds like the right route to go down, I hope you can find a doctor who will prescribe

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