Anyone else with the same problem?

I was diagnosed with Graves Disease in November 2012. I was referred to a Endo who started me on 40ug of carbimazole and then introduced thyroxine in February 2013 to begin a block and replace regime. I'm not sure when the eye problems started as I probably blamed the symptoms on tierdness, stress, working on a computer etc but I noticed lid retraction of my right eye in April. Since then my eyes have not gotten better but they haven't gotten worse. I only have lid retraction of my right eye and it's totally knocked my self confidence as my eyes look noticeably different :( I was just wondering if there is anyone else out there that is in a similar situation as me? What makes me feel even worse is that I'm getting married in 2 months time! I have no idea how long this will go on for or when my eyes may start to get better (other than me being told that it's a waiting game and it can take up to 2 years if not longer). I've seen an opthalmologist and all they've given me is phenylephrine hydrochloride 2.5% eye drops which lift my left eyelid for a short period of time. I've been taking selenium and avoiding environmental triggers but have not noticed anything helping very much. I've been told that as my TSH has risen to the normal range and my T4 is in the middle of the range that things should start to stabilise with both my thyroid and my eyes. I have not been stable since I was diagnosed and have fluctuated between being slightly overactive or slightly underactive. I'm hoping that finally now I will stabilise but not sure if that means that my eyes will start to improve or not. I've been told that the eye disease either runs concurrently with the thyroid problem or independently. I just don't know what to do anymore, I'm feeling pretty helpless. On the plus side my vision hasn't been affected and I'm hoping that it does not get any worse. I would love to get in contact with others who have had similar experiences or those that may have some advice they could give me.

Thank you very much, I appreciate all the help I can get.

20 Replies

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  • HI I am slightly going from under to over and my eyes water like niagra falls.....got blood results today but dont understand them ...but it has effected my eyes bigtime

  • Hi babymaker I'm sorry to hear you are having problems with your eyes too. What are your blood results? My TSH is 2.48 and my T4 is 14.5 and both endo's I've seen tell me that they are happy with this level and don't think that I should have a lower TSH and a higher T4 for my eyes to feel better. I don't know who or what to believe anymore!

  • Hi,

    I have Graves, dates so similar to yours I found myself thinking I was sure I hadn't posted anything recently :-)

    I had lid eye problems - double vision when I lay on the sofa to watch the TV which was in front and slightly above me, also had blurred vision when I read on the bus that sort of thing. I found that prisms in my glasses didn't make any difference to my vision, the symptoms just seemed to come and go. I had them for quite a while before I was diagnosed though and knowing what I know now it was obviously linked to the Graves.

    My endo did some 'follow my finger stuff' and said I was OK but my eyes still feel weird sometimes.

    I found eye drops that I liked, Hyco-San are my favourite at the moment (got them from an optician' shop rather than a pharmacist) although Gel Tears are good too, and I used them non-stop throughout the day until my eyes felt better. Must admit I suppose I ought to use them all the time but I am a bit sloppy about keeping using them so my eyes feel better then I stop and they feel bad so I start again and so on.

    Sometimes they just ache like someone has punched me in the eyes, really stiff and horrible particularly my left eye and the area all round it, jpust a constant ache until I use the drops enough.

    I find I need to use dark glasses more than I ever did in the past. My eyes watered a lot before I was treated but tend not to now. Did you know that dry eyes actually water? Weird but it is a different sort of tears.

    Do you take Vitamin C? My friendly local pharmacist said I should take it way back when I started on the Carbimazole - I had started taking it anyway when I was advised to take it following some dental surgery, I use 1000mcg per 2 x slow release capsules that also have zinc. Not cheap but worth it. I also take an A- Z multivitamin and some one a day Co-Q10 as well as sublingual Vitamin B12 and a spray Vitamin D - sounds like I rattle doesn't it! I also have a handful of Brazil nuts every day for magnesium.

    ****

    Have just looked up phenylephrine hydrochloride - says not to use if you have an overactive thyroid xpil.medicines.org.uk/ViewP... - read point 2 -have you checked with your doctor / endo / optician?

    Liz

  • Should have said I became under-active before I got started on levo, my most recent bloods (4th June ) - I had an extra test fitted in between endo visits because I was always really cold and felt like I was becoming under-active again- were TSH - 1.4 (0.35 - 5.5) FT4 - 15.4. (10 - 19.8). At the moment Im taking 40mcg Carbimazole and alternate between 75 and 100mcg of levo.

    Liz

  • Hi Liz, that's amazing that we have such similar timings and experiences! Tell me about, who knew dry eyes watered so much?!? I haven't had any double vision, I literally just have right eyelid retraction and like today ive woken up with under eye puffiness. I do take vitamin c with zinc along with selenium (as I've been told it's good for the eyes, although endos won't agree they just say selenium is good for the thyroid), and vitamin d. I'm going to start taking vitamin b12 and look at taking an A-Z multiple vitamin. I will def look at those other eye drops, at the moment I'm just using hypromellose drops but I do the same as you, I tend to only use them when my eyes feel really bad and not on a regular basis. I'm going to start using them more often and see if that makes a difference! My current levels are tsh 2.48 and t4 14.5 and I'm currently on 40mcg of carbimazole and 100mcg thyroxine. I'm feeling a bit hypo but the second opinion endo I saw said tom stay on the same dose as my thyroid should start to stabilise?! She also said it's good that my TSH has finally risen within the reference range but I'm scared it's going to keep rising and I go hypo.

    I saw the same thing about the drops and when I asked my ophthalmologist they just said it's because the drops have an adrenal affect and may cause the heart to race but said it's such a small dosage that it's fine. I also don't use them on a regular basis, I'm basically just going to use them for my wedding (although I wish I isn't have to use anything:( )

    Liz, when you say you were hypo before you went on levo, is that because you were just on carbimazole? Did your endo tell you to alternate between 75 and 100? How are your eyes now?

  • Hi

    Goodness me, we are similar arent we. We are taking practically the same vitamins too. .I started off as TSH - < 0.03. (0.35 - 5.5 )Free T4 - 38.5. (10.0 - 19.8) and antibodies so my doctor knew what the problem was right away, she started me on 20 mcg Carbimazole there and then. I had a repeat blood test three weeks later then got a letter from my consultant telling me to double the Carbimazole then at my first endo appointment at the end of February I was given 50mcg thyroxine. I was fine for a few weeks then started getting palpitations again, someone on here suggested I was probably not getting enough thyroxine. I went to my GP who gave me amitryptiline because I cant take beta blockers, that stopped the palpitations then I stopped the amitriptyline when the palps stopped because I didnt really want to be taking antidepressants even if they are mainly used as painkillers these days, by then it was time to go back and see my endo.

    I was also very cold by then and she said I had become a bit underactive and needed a bit more levo which tied in with what I had been told on here and so didn't come as a shock.

    She raised me to 75 mcg which was fine for five weeks or so then I started to feel very cold ( I was wearing a vest and several layers of clothing plus scarf, gloves and quilted winter coat while everyone else was wearing t shirts and bare arms) and I felt sluggish again and my hair was falling out, fortunately it had been really thick so it isn't obvious to look at, anyway I had an extra blood test done because there was no way I could have lasted until my next endo visit feeling like that and although I was 'within the range' ( who isn't? ) my GP agreed to raise my levo, she was a bit concerned that it might make me hyper but agreed to me alternating 75 and 100 which is a big improvement, I'm no longer cold. I go to my endo again at the end of this month so I will see what happens then. I was hoping for an earlier endo appointment because I didn't think my GP would be able to alter my dose so either she got in touch with the hospital or GPs have a cerain amount of leeway.

    Think the drops I use are similar to the hypromellose ones you are using but mine are preservative free.

    The other thing I find helps is to hold a warm / hot, damp face cloth over my eyes, you can buy an 'eye bag' that you can microwave but it has the same effect. I also have a cheap facial sauna that I bought when I was getting constant sinusitis before my thyroid was fixed - and when my eyes really hurt I used to steam my face too. On the whole although I have periods when they ache they are fine most of the time, they are even better if I keep using the eye drops.

    I have found it is worth trying to get to bed early so that I don't get tired out because then I get really grumpy and just feel awful. Probably not all that easy for you to do if you are planning a wedding.

    Liz x

  • Hi Liz,

    Definitely not ideal when I'm planning a wedding - trying to remain as stress free as I can but it's easier said than done! It's funny because I started on 20mcg of carbimazole too and then when I saw the endo they increased the amount to 40mcg. They did the opposite of what happened with you and started me off with 100mcg of levo so I went back up to hyper after they had managed to stabilise me on the carbimazole alone. So I dropped down to 75mcg and stayed there for a while until I started going hypo so I went back up to 100mcg. I can't get the endo to agree to me increasing my levo by 25mcg even though I've told them i'm feeling hypo and have quite a few hypo symptoms. How do you alternate between 75 & 100mcg? Do you take 75 one day and then 100 the next? Just so I can ask if my GP would be happy with me doing something like that. But they funny thing is, while I've still got hypo symptoms I also have some hyper symptoms (racing heart occassionally and some night sweats - I just don't know if this is due to stress and worry). I've been told that it's my body adjusting to the new levels. Who knows anymore?!?

    I have the same as you, I'm lucky that I've got loads of hair so it's not noticeable but my hair falls out all the time! If I don't vaccumn everyday it's everywhere. I've definitely noticed that my ponytail has got thinner though over time. I haven't tried a warm compress yet, I will try that tonight as I've been doing cold compresses for a few hours a night and that helps soothe them a bit.

    I am seeing my GP on Friday to request a blood test as my private health insurance won't pay for me to see my Endo anymore as they consider my treatment as "monitoring" and I don't know when I'll get to see my Endo on NHS. I'm also going to request that I have my Vitamin B12 levels tested, I went to Boots today to get some B12 and they were reluctant to sell them to me without getting my GP's approval.

    xx

  • Hi Liz I'm also graves/TED

    How are your eye pressures? Have they mentioned steroids? My disease was very aggressive & extreme and I was "active" for just over 2yrs however, most of the people I've met with this are only active for approx 6 months before the begin to settle and stabilize. They've caught it early which is really important for a good outcome. I do understand completely how you feel I still hate looking at myself :-(

  • Hi TTLady

    Think you are probably replying to gravesgirl who put up the first question and who is worried about the appearance of her eyes.Like you, I'm surprised she wasn't offered steroids because I thought that was what they did for TED and you're right, the earlier they get it the better or so I have read.

    I think my TED must be quite mild, nothing much to see but I can certainly feel it, dry gritty eyes, they water and they ache. Last time I had my pressures done they were lower than they have been in ages which was a real surprise considering how they feel.

    Liz

  • Hi!

    I'm glad to hear they've caught it early, although it's such a horrible thing to go through isn't it? Did you also experience the lid retraction?

    I'm told I have no ocular pressure at all, I literally just have right eyelid retraction (they tell me not a huge amount but it's definitely enough to notice a difference as I usually have sleepy eyes) and occasional pain behind my eye, and both eyes are gritty and red. They have talked about steroids but never in me using them as my vision hasn't been affected (and I'm hoping it won't be).

  • Hi!

    I'm glad to hear they've caught it early, although it's such a horrible thing to go through isn't it? Did you also experience the lid retraction?

    I'm told I have no ocular pressure at all, I literally just have right eyelid retraction (they tell me not a huge amount but it's definitely enough to notice a difference as I usually have sleepy eyes) and occasional pain behind my eye, and both eyes are gritty and red. They have talked about steroids but never in me using them as my vision hasn't been affected (and I'm hoping it won't be).

  • Hi TTlady

    I've had graves now for 3 years, my eyes ached for months before

    the graves was diagnosed. I still suffer from watery eyes and I hate

    bright lights and the sunshine so wear my shades all the time.

    I had the IV steroid treatment over 6 weeks in 2011 and it seems to have

    Improved my sight as I thought I was never going to be able to wear my contacts

    ever again. I had prisms in my glasses and hated looking at my myself. I used to trip

    Over the dog quite regular and have a scar to prove it. Things do get better, I wouldn't say my eyes are how they used to look but I am happy to be able to see. I have lost my vision slightly on the left side but turn my head more now instead of moving my eyes. I still use the eye drops as my eyes still get very dry. My levels are

    In the normal range now and I'm on 20mg carbimazole and 50 thyroxine.

    I only see the eye specialist every 6 months now and think I will be discharged in October. I am conscious that my eyes still stare a bit but I avoid looking to long at people on a night out incase I get a punch on the nose haha, but I am so pleased that my GP and local hospital gave me so much time and care, reading some of the stories on here I think I'm a very lucky lady. Life is good .

  • Hi Duster,

    I'm so glad to hear that things get better and that they have gotten better for you. It's amazing how awful mentally and physically the eye problems make a person feel. What's even worse is that you it's a waiting game and that there's no cure for it, you've just got to see what happens and that is a stress within itself. I wake up every morning wondering what my eyes will look like next. So glad to hear that things are better for you, it makes the world of difference getting good support from your GP and hospital! Take care :)

  • Oops sorry Liz xx yes, was meant for gravesgirl

  • Sorry to hear about your eyes Gravegirl. I was diagnosed in December 2012 so almost the same time as you, and also put on 40mg carbimazole. It had almost no effect so I had RAI about 2 months ago as well. Following that (and still being on 40mg carbimazole!), my bloods just about went within normal range. On my last appointment 3 weeks ago my endo stopped the medication altogether as he wants to see what my new baseline levels are, so he can decide whether to do more RAI, so at the moment I am waiting for the hyper to kick in again... so far I've only noticed that I'm hot all the time and feel so exhausted again, so I think it's only a matter of time before the other symptoms come back :( I noticed in about February this year that my eyes were getting very puffy, although I don't have any lid retraction (yet) and currently my vision and eye movement is okay. Because of that the doctor didn't want to put me on steroids. My eyes are very gritty, irritated, and water so badly I look like I'm crying ALL the time! It's very swollen above my eyes but the worst thing for me is under my eyes - I have 3 huge layers of bags under my eyes that end halfway down my cheeks! I look like my face has aged 10 years over the last year, and recently somebody (seriously) asked me if I'd been punched in the eyes.... not too chuffed about that...lol! So, sorry I don't have any useful advice, but just to say you really have my sympathy. Having said all that, lots of things are feeling much better and I can function more or less normally, albeit with sunglasses on most of the time :) I felt great after the RAI while I was still on carbimazole, really like the 'old' me, so we am hoping that with some 'tweaking' I can get back there again. Good luck to you and I hope things improve for you soon xxxx

  • Thanks for your message - sorry to say that you're not feeling great at the moment, I hope things get sorted out soon. I totally understand what you are going through and can sympathise with you completely too. I also get the puffiness below my eyes, I haven't noticed puffiness above my eyes - although maybe that because i'm so worried about the lid retraction haha! I am the same as you in that my vision and eye movement is okay (and hopefully will stay that way) so the docs don't want to put me on steriods. My eyes only tend to water if I've been outside and exposed to wind for a while or if I've been staring at the computer screen all day. I try and take breaks from staring at the computer screen and that helps a bit. I've also tried to cut out gluten as much as possible (although I find that really hard) and trying to eat as "clean" as possible to see if that has any positive effect on my eyes. Some days are better than others as I'm sure you have the same. Last night my right eye was itching like crazy and I haven't had that before! Usually I put the cooling eye mask thing on my eyes for a few hours when I go to bed. That seems to soothe the eyes. I've never tried a warm compress but might try that tonight too. At my last endo appointment (I went for a second opinion) they seemed to think that as my thyroid seems to be stabilising so should my eyes. I'm hoping this is the case! I know what you mean about sunglasses, they have never seen so much use before! I think I'll need to invest in a few more pairs to cheer me up :) I hope things for your improve soon and that you start to feel a bit more like yourself again once they've got your levels right. xx

  • I have Graves and Ted and find that my eyes are worse if I'm hyper rather than hypo. Im on 2.5mg of Carbimazole (down from a dose of 40mg) at present but feel as if Im going hyper again, and two weeks ago my eyes started to get worse, so will probably raise my dose a little.

  • Hi! That's interesting to note, I've read and been told that they eyes get worse when you are either hyper or hypo - I guess the eyes like it when the thyroid is stable - the hard part is keeping the thyroid stable! Since I was diagnosed I have never been stable, always fluctuating between slightly hyper and slighly hypo, I'm hoping that I start to stabilise. Both endo's i've seen say that it's a good thing my TSH has risen in to range (even though it's 2.48 which I think is quite high) but they don't seem to be bothered by it and take it as a sign that my thyroid is stabilising. I hope you and your eyes feel better soon! x

  • Hi, I had Graves in 2005 and because it would not stabilise, I ended up having a thyroidectomy in 2006. I also had TED, which was mostly horrible puffiness under the eyes, (which just came overnight and horrified me) and also they were very dry and sore. I was seeing docs long before I was diagnosed and was just told to take drops. The product I found really helpful was a homeopathic remedy called Euphrasia. I took this quite often through the day and it calmed the soreness and irritable dry feeling.(did not help the puffiness though). Worth a try if you are finding drops not very helpful and is completely safe with no side effects. A homeopath could give you them or try talking to the homeopath at one of the big homeopathic suppliers. I can give you my favourite if you message me. I am so sorry you are going through this. Big hug x

  • I'm hoping my eyes are now stable enough for me to be referred for surgery I just want to look human again.

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