Scared :-(

Hello all, and anyone willing to read this... and apologies for the essay!

I am 43 nearly 44 and I was diagnosed early last year with Graves Hyperthyroidism...

6-12 months before this I noticed that one of my eyes had become blurry and very slightly dimmed...

Unfortunately (stupidly) I didn't go for an eye test as many of my friends said 'oh yes, typical in your 40's...

Fast forward, the problem progressed slowly, but since my other eye is SO good, I think it may have compensated for the bad.

I meant to go for an eye test last year, but due to undiagnosed Graves disease and poor health with it, it got shelved for another day. Also in this time I had a few flashes of light that I stupidly dismissed and annoying black blob that comes and goes (looked like an eclipse).

Fast forward to last few days, I have been ill with a virus so didn't go to work. Noticed my eyes weren't right.

Testing myself, each eye, I suddenly shocked myself and realised just how bad my left eye is... Blurred really bad, peripheral vision seems limited, plus a grey shadow... Panic set in, so I tried (after using Dr Google) an Amsler grid... Left eye, the ENTIRE grid disappeared :-(

Long story short, TODAY, I went in for an emergency appt at eye unit... Good news, NO retina detachment or tear, some amount of degeneration. Bad news, being referred for further tests. Consultant was not helpful AT ALL. Would not answer any questions. He said it could be lots of things.

So I have come back to research... Which has led me to questions. I am hoping that someone may be able to 'help' or give any similar story or anything really.

Today at home I checked my eye on an Amsler grid again... It disappeared leaving a 'grey patch'. This was after relaxing and waiting quite a few seconds on a small grid.

I tried again with a larger grid, which I looked at for just a few seconds which was a bit wobbly in places but ok ish. It seems this 'grey patch' creeps in when I hold my look on one spot :-( I'm very scared. The blurry vision I can cope with, but a missing patch of vision? Why grey?

1. I am worried about tumours now... Would consultant have seen 'signs' of this? Or am I still at high risk?

2. I have read about tumours on Pituitary Gland causing vision problems and Hyperthyroidism... Could I be misdiagnosed with Graves hyperthyroidism and actually have a tumour on my Pituitary gland...?

3. I have read a little about Macular degeneration... could this be an option for what I am experiencing? Would/could it also cause flashes, diminished colour, odd blob? And surely wouldn't it be in both eyes? Grey patch/shadow??

4. What could be a differential diagnosis? Could this be caused by anything else? Blood flow, damage to nerve? I don't know :-(

I'm so confused at the moment, and pretty frightened...

I'm sorry for the essay, I'm feeling pretty down, searching for possibilities...

Many thanks for any help

47 Replies

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  • Hello wildpoppy. So sorry to hear of your worries. First of all: try to calm yourelf down. I know it is easier said than done. It is all too easy to fill our heads with imaginings - I think most of us on this forum have been there. Pity that the consultant was not more helpful at least to put your mind at rest, but unless he is absolutely sure he is not likely to committ himself to a diagnosis.

    Sorry I cannot answer any of your questions. It would not be helpful at all to suggest what it might be or not be. Hopefully you will have the other tests very soon. Have lots of questions written down, ready to ask after the tests. It might be a good idea to take a friend or family member with you to help you out. Once you have a dignosis you will be able to put things more into prospective. I am not trying to make light of your worries; you clearly have a visual problem that needs sorting. but stress often makes matters worse. Take a deep breath and try to step back from your confusing thoughts.

    Sending you a big hug. x

  • Thank you for taking the time to reply... I understand what you mean... Unfortunately the consultant said that I was not an urgent referral, and that it may take some while to get seen...Yes, stress definitely makes it worse!

    The only thing the consultant said was that would likely doing a field test... So I looked this up, and it seems that a field test is used to help identify tumours! I guess this is what made me stress...

    Even with Macular Degeneration, I am stressing!

    Thank you for your help, appreciated that you answered... <3 x

  • I am so sorry wildpoppy for what you are going through. It is frightening when you dont know or understand what is happening to you. I know it was for me. I have a friend with similar symptoms who was diagnosed at first with CNV (chorodial neovascularization) but later was found to have uveitis. It is good news that you did not have a retinal tear or detachment. Retinal hemmorages can also be diagnosed as macular degeneration. There are so many things that are scary but also so many great treatments present and on the horizon for us that suffer visual issues. The sooner you know what is wrong, the quicker you can get the proper treatment and hopefully have your vision restored. Hang in there and get as much info as you can. Wishing you the best!

  • Thank you BasiRose <3

    May I ask what a retinal hemmorage is?

    I was wondering whether the Graves disease could have done this? Although I didn't suffer with any outward eye symptoms?

    Its frustrating that I will now have to wait goodness knows how long to get into the system, just to find out whats wrong...

    Thankyou so much for being there x

  • Hi Wildpoppy, I felt bad when I read what you wrote because I was there. I had out of nowhere a large spot appear in my left eye. I am very nearsighted and have very bad vision to start. After 4 days of it not going away, I went to the retinal specialist and he told me I had bleeding in the retina as a result of CNV and was going to need an injection. I was horrified because I was just at the retinal specialist for routine check a month prior and told I was fine and to come back in a year! Well long story short, after that I was at the doctor every 30 days for the next 23 months and had 23 injection which did nothing. i was so depressed because everyone seemed to get some benefit but somehow not so for me. The spot did resolve within a month after I got it however and the doctor told me it would not go away and would have a permanent spot in my visual field.

    Well sorry, but my long story short is not looking good!

    I finally saw a different doctor and he said he believes I have retinoschesis mild case, for which there is no treatment and just needs to be monitored. I have not had any injections for over a year now and my vision is stable! Lots of prayers and gratitude here for that new doctor who took the time to go beyond the routine of the injections and reassess my case.

    That's my story and I just wanted you to know that it is all overwhelming at first but there is hope. Got to have lots and lots of hope. Best again and will keep you in my prayers.

  • Hi wildpoppy, sending you a hug x I agree with what's been said so far. When first I had my eye problem I too researched and came up with a list of half a dozen things it might be. The important thing is to get those tests you have been referred for, and within 2 weeks.

    Do not sit back, chase the depts and ask them when you will be seen . The Macular Society has guidelines and will help you state your case. Check out their website, tel &email helplines etc.

    Until you get a diagnosis there's not much anyone can tell you but regarding your point 3, it's actually more likely to be only the one eye not both and there are a few conditions that can cause a grey blob in your vision ( good news that many have an effective treatment).

    Use an amsler that's at least 5"sq - keep the same one and mark in pencil or coloured pen the extent of grey or waviness . That way you will see any change and can show to your Dr.

    Suggest you also go see whoever diagnosed you with graves and ask if what you have now could be part of that problem. At least while you wait for the tests you will feel you are doing something positive. Feeling out of control is one of the hardest things .

    Sorry we can't help more, come back and tell us how you get on x

  • Thank you eyesright...

    Its a good idea to get back to my Endocrinologist perhaps to see what they say... Thanks for that...

    The Amsler square I used at first was small, the second was about 6-7"... :-(

    Yes, I do feel out of control, as reading up on it, its very doom and gloom! And thats with the best of it... Forget about the possibility of a Pituitary tumour?! I am ruling out other tumours for now, as I hoping that the consultant might have seen something, or that I might have experienced some other symptom (headache, nausea) with it... I'm just trying to calm myself down as the stress is not good for my Graves, and I don't want to kick an episode of Hyper off!

    Appreciate sincerely the time you have taken to answer me, big hugsx

  • No worries, we are all here for each other, but please do chase up your referral tests (you only have to say you're worried in case it goes missing in the post!).

    Best of luck x

  • Thank you, yes... I will chase them in a day or two... The consultant said it was a routine referral :-( Apparently I am not an emergency!

    Again, thank you :-) xx

  • Hi wildpoppy, I don't want to alarm you further but any deterioration in vision needs prompt attention. The a&e Dr might call something routine because it can wait a few days for the clinic as opposed to someone needing immediate lifesaving surgery - but if his referral goes missing or there are unforeseen delays then your condition what ever it is may worsen.

    I had an em appt then had to wait 4days for a certain test as that was only time they did it. If you've already waited 2 weeks any extra delay is significant. Later I had appts go missing or missed entirely by booking admin and it was only by my calling clinic that i got my treatment .

    I must say, he should have given you more info!

    Field test is also used for glaucoma and retinal artery/vein occlusion , probably other things too so try not to focus on cancer but please do call the eye clinic first thing tomorrow x

  • You cannot diagnose eye conditions yourself it is a HIGHLY complex and specialised calling. Await the appointment with the specialist but do make sure that you press for an early diagnosis. Trawling the internet will do nothing but add to your worries.

  • Thanks yes, I understand... it HAS added to my worries!

  • If after 2 weeks you have heard nothing then ring and query, ask that if there is a cancellation you will take it. Often it works.

  • Yes, I will do... The thing is I have no idea to where he referred me?! I suppose it must be the eye unit? I will ring to ask anyway... Thank you again

  • Contact the last consultant's secretary she/he will know where the referral has gone and if it hasn't then you will be gee-ing them up. In fact I would ask specifically "has my referral gone out?"

  • Hi Wildpoppy,

    you have had some fantastic replies already. Personally I would be taking comfort from the fact that you are not considered an emergency even if it is frustrating. Also, I suspect I'm a fair bit older than you and in my day we always had a big book, like Wikipedia in book form which was full of medical advice. My wise old Grandmother always told me never to read the "Doctors Book" because I would convince myself I was terminally ill every time I had a cold! A bit of knowledge is a dangerous thing and doctors train for many, many years to develop the skills they need to diagnose us properly and we can't learn all that after a few days surfing the web, so trust them but don't be fobbed off with long waits for appointments; be prepared to nag a bit.

    Rather than researching, maybe going for a walk, visiting relatives or going out with friends and generally enjoying life a little would distract you and help you to feel more relaxed. If the medics you have seen had any suspicions that you had a tumour of any kind I don't think they would be this half soaked about getting it investigated - they're pretty careful these days about avoiding legal action! Take care x

  • Thank you so much for your kind reply... I have had many disappointments with the medical system over the years, being misdiagnosed or left too long etc... So my faith in them has wavered somewhat... But I will try... I am hoping you're remark about "If the medics you have seen had any suspicions that you had a tumour of any kind I don't think they would be this half soaked about getting it investigated" is true!!! Lol... I am not sure they can see tumours in the brain via a dilated eye?! I guess sometimes they are diagnosed this way though I believe? Thanks again for all of your help, its a comfort to know I am not alone (although I do not wish this on anyone)...xx

  • I think you are right; it is hard to trust once you have had a bad experience or two, but there are some great professionals out there too. I hope you will keep in touch when you know something more definite. Someone on this forum once told me that she always prepares for the worst and hopes for the best; it's the best bit of advice I have ever been given. x

  • Yes that's a great saying! I guess I'm a way that's what I'm doing... Just had so many health problems in last few years I'm tired, I need a rest! I try so hard to be healthy so it's disappointing ☹️ Thank you x

  • Push push push for second opinion go

    To a and e hospital tomorro , I have my own cancer to deal with and it's spread to my eye, I wouldn't have known anything if I hadn't pushed for tests. I left my macular degeneration for a while, but when my vision changed i went to a and e. I even paid to get second opinion you know yourself if it's not really right.?Sending massive hugs from squinty xxxxx

  • Oh squinty, I am sorry to here this..

    I understand what you mean, as I have had nothing but rotten luck with NHS over last few years...You have to be an advocate for your own health these days. How did your vision change may I ask? And are you being treated for the cancer? I hope you are on the other side of it all now, feeling better?

    I must say it WAS the A&E dept I went to (eye clinic in A&E), they were the ones that dilated my eye to look inside, and it was the consultant there that referred me for more tests. I guess because he explained bugger all, and would not answer ANY questions, it freaked me out. He said that I needed further tests. When I asked what tests, he first replied with "Depends on what consultant you get, as to what tests get done"... which I can see what he meant, but whenI enquired further, he said... "depends on the outcomes of your tests".... I understand him being non committal, but jeez! Just a little reassurance or bedside manner would really have helped.

    Of course, I am not sure what they test for at an A&E eye unit facility? I know he looked for retinal tear/detachment, and he said I had some amount of degeneration, but that I would need further testing... indicating to me that it must have been more than macular degeneration causing my vision problems....

    Ive exhausted Dr Google this weekend, I am one of those that needs info, I need to know EVERYTHING! Thats why I thought perhaps some people knew more on here about why gets tested etc...And whether Macular Degeneration CAN cause some of these symptoms I described?

    I'm liking the idea of getting a second opinion though... I'll be checking that out tomorrow, thank you again... Big hugs to you xxxx

  • Got so many answers and I will get back xxx but one thing very important I think is the straight line wavy line test if lines are wavy definitely something wrong. I'm gonna answer some more questions when I can again massive hugs back xxx❤❤❤❤❤❤❤

  • Dear squinty. So good to hear from you. I have been thinking about you every day, wondering how you are coping with your ordeal ever since you told us your devastating news. With all my love and big big hugs. xxx

  • Oh thank you Squinty but no problem.., completely understand x I've checked the lines btw and there seems to be no problem there except for haziness and shadows... And if I wait long enough a grey fuzzy patch starts appearing. I think my good eye must have been compensating as I had no idea my left eye was so bad? Enough about me squinty, how are you? I hope today may be a good day, sending big hugs to you xxx

  • Ah squinty, so sorry to hear it's spread to the eye x hope there's no pain x sending you love and hugs xxx

  • Hi Squinty, I'm so sorry to hear such awful news and I'm not very good with words and wish I knew the right thing to say or do to make things better for you. All I can do is send my love and for you to know that although we have never met, you feel very much a friend to me. I will be thinking of you and hope you will find time to post now and again x

  • Hi Wildpoppy, great advice and support on here , i would say dont sit back and wait ...ring tomorrow , tell them your very worried, and need to know when app is ((((")))) xx

  • Thank you I will x I am going to try and leave until Tuesday to make sure paperwork has gotten through to department from A& E!!! Xx

  • Agreed , but please try not to worry/panic as this will make the condition worse.

  • Thank you... It's hard not worry, I'm trying... But obviously every 5 seconds I am checking my left eye for grey patches and shadows, blurriness and haziness:-( do you think stress affects eyesight? Xx

  • Yes it does. It raises blood pressure and cortisol levels.

    Have you called your clinic yet today? A&E is usually computerised linked to eye clinic so no need to wait. Taking control is one of the best ways to ease stress because you are doing something positive for yourself x

  • Thank you, yes... I have just called... I was put through a few times but eventually got to the right place. The nice lady told me that referrals were being 'graded' by consultant today as everything from weekend had only been sent today...

    I have the number of the consultants secretary, she advised waiting until tomorrow to ring, just to give them a chance to grade my case...

    Therefore depending on how urgent the consultant thinks it is, depends on when I get my appointment...

    The anticipation is horrible :-( xx I'm trying to stay calm but looking through my left eye is becoming an obsession, and my sight seems to be worse every time. :-( x

  • Good that you have spoken to them, and when you ring back you can tell them you feel it's worse.

    Time now to think about something else, go for a walk,have a nice bath, watch a film etc - I always read to calm myself (that and pigging out on choc which I'm trying to stop lol).

  • Not many people know this but moorfields hospital in London, not sure about the other moorfields around the country have an a & e dept where anyone can walk in and will be seen. Lovely people too, if you are really concerned and they are professionals in their field, but not saying docs in local hospitals aren't.

  • Thank you for that, if I was closer I would go for sure... But I'm in Bournemouth so just wouldn't be able to get there and back (work/children).... Thanks though, always worth knowing :-)

  • I do not have your eye condition but have glaucoma and am under the care @moorfields hospital and have been told for any eye condition your blood pressure level is raised when we are nervous/worried/stressed normally and thus can have extreme effect on your eye. I know it is really hard not to worry and am sure you will soon have your consultation .Even now my eye hurts when I get angry or stressed so deep breath and breath!

  • Thank you, I guess that sounds right to be honest... It's amazing the effects of emotion on the body. I have suffered from a stressful marriage these last 3 years, the last of which was a terribly anxious and stressful time... Which led to my Graves disease I believe. So yes, I u der stand exactly what you are saying! It's so frustrating not knowing what's wrong with my eye. Thank you again for your kindness xx

  • You re welcome, let's hope very soon you get the treatment.

  • Dear Wildpoppy,

    Sorry to read of your difficult time with health matters, and can imagine how anxious and frightened you are at present. However, it is good that you have sought help now, especially for your eye condition.

    The Macular Society is a charity aiming to provide people with “Support throughout central vision loss” but is unable to answer personal medical questions. We can provide some information on mostly macular conditions, the commonest being Age-Related Macular Degeneration (AMD), and some retinal ones, we also provide a Helpline to advise and support callers with practical and emotional matters eg treatment regimes, counselling, volunteer help, recommending resource suppliers and technology expertise, and signposting to other helpful organisations, local support groups or medical sources.

    You have raised a number of questions but we would be unable to comment on the overt medical ones. It is important that you speak with doctors about these concerns and get clarification regarding diagnosis. I wonder what doctors you are seeing and where. Are you still under a medical specialist for your Thyroid problems, as this can affect eyes as well? You must be under an Ophthalmologist now, having seen an “eye doctor” at the Eye Unit. It is good that you have had retinal detachment excluded anyway. I wonder what tests he has referred you for? It does take time to get the whole picture, but hopefully not too long.

    Please see our website for information about Macular Conditions

    macularsociety.org/

    In particular I would signpost you to the Resources section with information leaflets

    macularsociety.org/resources

    The ones you may find helpful are: Guide to AMD and Juvenile Macular Dystrophies, which includes information about some of the eye tests that may have been recommended. I note also that you are below the age when AMD usually begins (though there always exceptions!). 1 in 2000 people have AMD aged 60yrs, so yours could be one of the juvenile types.

    With macular degeneration, sight loss is usually central and there are techniques that may be learned (Skills for Seeing) to maximise use of peripheral vision.

    Whilst there is no treatment available for the Dry type, other than nutrition supplements to slow progress AREDS2 formula from research trial 2013, see Essential Care guide:

    macularsociety.org/sites/de...

    There are injections that can be given to stabilise the Wet type, but getting these soonest (within 2 wks of onset/referral to specialist) is important as recommended in this Essential Care guide

    macularsociety.org/sites/de...

    Please ring the Helpline if you wish to discuss anything further, or just to chat some things through. We could refer you for counselling if you are diagnosed with a macular-related problem, or to a befriender who has undergone any injections or treatments that you are recommended.

    Wishing you all the best anyway and hoping that you have some family or friends locally who can support you in your health journey.

    Regards

    Macular Society Helpline

    Helpline 0300 3030 111

    Monday – Friday 09.00-17.00

  • Thank you so much for such an extensive, informative reply, extremely appreciated, I am grateful.

    Yes, I understand that you cannot diagnose, I guess I am trying to form a picture of possibilities...

    I also thought that I am bit too young for Macula degeneration... (which is slightly why I am panicking I guess, as the alternatives (detachment being ruled out) are not pretty :-( With regards to Graves Eye disease, it seems that to have any optic nerve damage, you must first present with bulging eyes... Which I didn't have at anytime... Apparently it is the swollen muscles that that impinge on the nerve causing optic neuritis. I would happily take this as the cause of mine, but it seems unlikely as, also, with reversal of eye swelling, return of normal vision is normally established. I don't fit into either category :-(

    I understand that I need further testing... I guess I am just trying to inform myself as much as possible until then!

    Again, thank you so much to and everyone on here for such wonderful and outstanding help... What a wonderful bunch of humans <3

    All the best x

  • Dear Wild Poppy

    First of all try not to stress! but be aware that excessive stress can actually affect your vision...(I speak from experience) I also received a vague diagnoses which I found very frightening, I then had treatment which was probably unnecessary. A year on after CBT (Talking Therapy) my vision has improved dramatically. It took a while to convince the eye specialists that my sight was just part of the story, and had they had the time or inclination to listen I could have avoided a really unpleasant and distressing experience. Try to stay calm, there are many things that could be wrong not all as bad as you think.

  • Thank you, I needed to hear this... I'm imagining the worst, especially now as the nurse explained that my referral will take a while :-( as they found no apparent immediate danger... But that I need checking out. For what I keep wondering? :-(

    Ugh!

    I have never heard of CBT ? Sounds interesting...?? Thank you for your kind words xx

  • good luck and keep us updated....xxxxxxxx

  • Thank you all again...

    Update: I called hospital today to find out about appointment/referral... The secretary of the consultant said that I wasn't on the system yet and would call back. 5 minutes later, the Nurse called me...

    She basically said that as I had been seen on Saturday, and that nothing 'immediately dangerous was found' that I would be sent an appt in due course, possibly taking few weeks.

    I explained about my vision feeling though as it was getting worse as I had checked my left eye last night again by staring at a particular point for a 10-15 seconds, and my sight seemed to be failing even more than previously. I tired to explain it. She then asked me what it was like if I blinked, i explained that there was less grey vision loss, and more dark translucent shadow if I kept blinking... She told me to go and get 'tear drops' as I probably had dry eyes????? At this point I lost faith I'm afraid.

    She said as I had been seen by a Registrar that found 'nothing of consequence'. I asked about my optic nerve perhaps being inflammed, she said my optic nerve was healthy so it wasn't that... But they cannot see all the nerve surely?! And that I had been referred for tests in the visual field as an Outpatient... As a consequence, she said that unless my eyesight deteriorated considerably, just to wait for appointment.

    I'm at a loss as what to do now :-(

    In essence, they've told me to bugger off unless I go blind?

    I've booked myself in with an optician. What else can I do do? Big hugs to all you lovely people!

  • Hi wildpoppy, you can get drops for dry eyes from any chemist. I use them daily. If your eyes tear up /water it means they are dry and you need the drops. Dry eyes can also be painful but if you get eye pain contact the clinic first don't assume just dry (I can tell the dry eye pain now but if it persisted after drops I would call my clinic).

    I confess I'm bemused why they aren't seeing you sooner - try the drops and call them again if no improvement in a day or so. Hopefully it will be something as simple as dry eye but if not press for a second opinion -speak to the clinic manager and your gp if the optician doesn't give you a new referral.

    Good luck x

  • Hi,

    Sorry to pick this thread up so late but I am wondering how much research you have done of thyroid eye disease, which graves can cause. The symptoms of this illness can be:

    Bulging eyes (exophthalmos)

    Gritty sensation in the eyes

    Pressure or pain in the eyes

    Puffy or retracted eyelids

    Reddened or inflamed eyes

    Light sensitivity

    Double vision

    Vision loss

    Your endo will be able to give you more information but I am a great one for telling people to do their own research and then push the doctors with the info you have gained. I am a thyroid sufferer (not graves) but this condition can also weaken the eyesight, although I know graves sufferers can be a lot worse. It is important that when you are doing your research not to frighten yourself - just put in google "graves disease and eyesight" and see what pops up.

    Hope this helps.

    Moggie x

  • hello

    i am 45 and i am using eyla for 3 years mostlye every 6 weeks and my vision is fine but it won't get cured ,,, :(

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