Having MRI scan of eyes due to GED

Hello all. Ive just srarted having severe eye pain, blurred vision and temporal pain. Also been rx'd steroids until I was sen at eye clinic 12 dayx ago. Now being weaned off. I have been referred for MRI scan of my eyes. 7 month waiting list so opted to go privately. My nerves cannot deal with 7 month waiting list! Any ideas what they will be looking for. I fear going blind? Am I worrying too much ? Any replies more than welcome. X

35 Replies

  • 7 months wait for an MRI when you have Thyroid Eye Disease is absolutely disgraceful

    I would be complaining very loudly indeed to PALS along with your hospitals Chief Exec

    Also insist on a referral to Moorfields Eye Hospital in London do not let local idiots compromise your sight

    You are legally entitled to 2nd opinions at a hospital of your choice and Moorfields is the Leading Eye Hospital in the UK which has specialist TED consultants

    If you do get that MRI done privately send the bill to the Chief Exec of your local hospital because 7 months wait is totally unacceptable

    Giving you steroids is correct first step and if you smoke its absolutely vital to stop right now

    My husband had TED but thankfully it did not cause the level of problems your experiencing and I used to be a Co ordinator for TED Association when it was run by Sally Mitchell until it was purloined into the BTF where information is twisted out of shape

  • Hi Reallyfedup123

    Do you know what causes TED?

    Does it come on suddenly or gradually?


  • i honestly do not know the full truth but i understand its the imflamatory actions of certain thyroid antibodies generally in graves disease but sometimes in hashimotos that attacks the tissues and muscles around the eye and that it tends to occur more in smokers than non smokers

  • Hi reallyfedup. I he Graves not Hashi's but my eyes are being affected just like in Hashi's. Massive double bags of fluid under and above both eyes.Excrutiating pressure of pain in both temples. Going privately for MRI HOPEFULLY SOONER THAN LATER. xx

  • I am very well aquainted indeed with Thyroid Eye Disease as it affects Graves patients ..............it does also sometimes affect people with Hashimotos

    Its the same cause antibodies attack the tissues around the eyes and cause inflamation and swelling and the problems you are experiencing

  • From the conversation I had last week, it is the swelling that causes the problems. A lot of thyroid patients get swelling around the eyes and when it becomes severe, it can squeeze the optic nerve. The swelling means there is less room inside the bony eye orbit for muscles to move the eye around properly, affecting focusing. In graves the swelling behind the eye can push it forward, causing the distinctive bulging eyes.

  • Yes, I thi k its disgracegful. They are obviously concerned or I sould not be refrred for MRI. Ive gone very doctor phobic since diagnosis with GED and Graves. T I could tell you a few horrid experiences with ignorant drs, but it has all been said by the thyroid community. Put in little boxes. No individual care, just categories of high, low and medium x

  • I am a patient at the Birmingham eye hospital which is the second biggest in the country. They are excellent. I am seen there for other eye issues, but I discussed my thyroid issues with them last week and they were very knowledgeable. So if London is too difficult, you could try there

  • TY. Will take that on board x

  • Hi harryEE.. Do you know if they take private consultations and are there any thyroid specialists there also. If so, who would you reccomend?

  • It is an NHS hospital, but they will probably all work privately too. Google BMEC, there is a list of the consultants and specialties. I see a medical retina doc, so she doesn't specialise in TED but I guess someone will. They are all excellent in my experience, it is quite a prestigious place to work.

  • Thanks harryE. Will deffo look into this hospital. Thanks for that x

  • Hi i all so get treated at bmec for ted ive had decompression on both eyes.

  • An mri is the only way to see if your optic nerve is being compressed and therefore compromised by internal swelling.

    As you've not been pushed to the top of the list as a priority I would imagine that they don't feel that your eyesight is in any immediate danger, which I think you should see as a positive :-)

    TED is indeed caused by antibodies and the disease goes through phases, (active, stable & remission) the active stage can last between 6 to 18 months. Sadly no-one can predict how long yours will last or how severe it will be.

    Hope yours don't get any worse :-)

  • Ty for your reply which was very positive. Going for next eye exam on the 10th mch. Getting MRI PRIVATELY COZ OF 7 MONTH WAITING LIST. Not going to take any risks with my eyes x

  • Sorry, I meany 20th March not 10th.

  • First of all, can we confirm that not all NHS hospitals are the same? Most MRI scanners are in operation 7 days a week but cannot cope with the sheer volume of requests! I am an Orthoptist (and also hypo) at our local hospital we hold a TED clinic, all TED patients are assessed and we look for certain risk factors. In the active phase the eye muscles surrounding the eye responsible for making the eye move in different directions can be infiltrated and swell, as others have said this swelling can compress the optic nerve at the back of the eye. Most of our patients have an MRI at some stage. It helps us plan long term treatment and doesn't mean that we think you are about to go blind.

  • Thanks, very interesting. Always useful to have some insider information :-D

  • Really happy to help, the NHS takes a real battering at times and some of it is rightly deserved. But on the front line are hundreds of staff trying to do their best with limited resources. If anybody is worried they should always talk to the Consultant's secretary first, she can get your notes and talk to your consultant about your concerns, sometimes this is all that is required.

  • Oh I know, I work for them too (when I am not off sick struggling to get treated!). :-)

  • T Y Whho. I have been soo confused about how different health boards do sooo many things differently. It has all made my head swim! I cant seem to think logically anymore and I am in a "real and disturbing brain fog . Just had a physical and emotional breakdown since being prescribed Quetiapine last December. I have noe started psychotherapy( obviously private) due to 2 yrs waiting list, so I am being as proactive as I am able at this moment. My life has tumbled around me and I feel too physically week to put all the pieces of the jig saw back to their proper place. Wont re-refer me back to endo until all eye exams are over with. Do you know of an excellent endo that I can be referred to? I am prepared to trvel anywhere in the uk and will pay. Im just overwhemed by it all.No follow up by MH services since lasr September and was told that I had 'slipped through the net. Same with eye clinic......slipped through the net ....no follow up for 2 yrs ....no yearly follow uo. Was told to be more proactive! Not so easy to do.Thank you for listening x

  • If this is how you truly feel you need to phone someone NOW for help, a friend, a family member,the Samaritans ANYBODY.

  • I have a good friend who I have told. Also, started psychotherapy last Friay which helped. My Gp has changed medication but its only 3 weeks since the change over. TY for your concern x

  • Hi Nezzykins

    Every one is right. You need a letter from your GP to go to hospital of your choice.

    Don't forget to make as much noise as pos. Radio station news papersetc.Finaly the chief exec is a must. Good luck

  • Don't forget it is staff on the front line that will get it in the neck if this is the approach taken. Water off a duck's back to those higher up the chain. Better still write to your MP and the Prime Minister, ask why they feel the need to send millions in foreign aid to countries that don't need it, whilst poor Nezzykins sits on a waiting list for an MRI

  • T Y for your reply. I am doing my best but my physical body is Soooo tired. Im worn out x

  • Thank you for all your info and sharing it with me x

  • Yes, I agree. Its the executives that are hiding under their new guidelines like leaches sucking at the blood of us all. Im dont want a plaster over my pain. I want the weeds pulled up out of the ground. I know I am going to get flare ups with these antibodies and that I can accept, but a little support my Gps and consultants would definately go amiss. I am a trained nurse and managed to put myself throuh uni for an M.A dip in therapeutic counselling ( CBT) Now im on the other side of the fence and cannot even remember my phone number! Im so lost I can never imagine I'll be myself again, helping others. Ive always felt 20 yrs younger than my present age of 60, but my mind and body feel 80 yrs old since taking the Quetiapine last October. Has anyone else had similar experiences with Quetiapine who also has GED and GD? Thank you x

  • I wonder if you are one of the many who have Graves' who have been treated for mental illness instead of the Graves'

    My GP tried to do that to me because I started having hallucinations as I got worse. Thank goodness I eventually saw a locum who recognised that the mental problem was being caused by the Graves', so I did not end up on medication to mask the symptoms.

    I was fortunate in that some of the really powerful drugs we have today did not exist then, otherwise I hate to think what might have happened. As it was I had to spend a year as a mental patient, most as an outpatient having 'group therapy'. As soon as the real cause was dealt with, my mental problems disappeared without drug intervention.

    Don't despair, I kow that is easy to say, but I have been through it too and I know how painful it is emotionally. Graves' is a terrible disease but it is just that - a disese. It is NOT you. The real you is still in there and you WILL come back.

    Mare XXX (((HUG)))

  • Hi Marram. Thank you so much for your input. Deep down inside me, I know its the Graves doing this to me, but how do I prove it? Ive lost the fight right now. This only happened to me after taking these quetiapine tablets they gave me, with a diagnosis of Ciclathaemia! NAll Drs aare very tight lipped about the quetiapine causing the mental and physicall crash I had in December. What are they hiding from me! Not seen a CPN or psychiatrist since my first appt. Ive been swept under the carpet and been disposed of, or at least that's how I feel. I had Agranulocytosis from Carbimazole so I know that my body hates certain drugs. Im going through one of the eorst times and feelmlike I am on a ferris wheel, begging to be let off but it keeps going around and around. And now, the eyes have been affected. Do you know anything about quetiapine and Graves. Cant find any research on any drug interractions. TY FOR listening x

  • Trouble is that probably Quetiapine is not the right treatment for someone having mental problems caused by hyperthyroidism due to Graves' disease. It can cause even greater heart rate, and impair temperature regulation - which is a problem anyway with Graves'. It will never solve the root cause which is the brain being completely overwhelmed by thyroid hormones.

    I have always written poetry and I sometimes get out the stuff I wrote when I was really ill with Graves' and read it - it makes my hair stand on end - how did I manage to get through it? The answer is, I didn't, I was completely out of control. I had several complete meltdowns and on several occasions he police were called to my home - apparently I was having hallucinations and screaming at invisible threatening people. One time I even believed that my son had been stabbed in the street in front of me. I am not telling you this to shock you or for pity but to show you that you CAN get through these things, as I have, and life can become something to treasure once more.

    I had to have a Total Thyroidectomy - with its accompanying problems - because I could not take carbimazole OR propylthiouracil - but believe me those problems can never compare to what was happening to me then. Hypothyroidism is also devastating and can also cause mental problems, but with optimal medication the effects can be reduced, if not completely eradicated.

    It is a fact that thyroid problems of any kind can blight a person's life - if he or she lets it - as can any chronic condition. And, as you have found, feeling let down by the medical profession does not help. So many here have felt and still do feel that way. But thank goodness we have Thyroid UK! Keep on talking, keep on communicating, don't ever give up, because there IS a light at the end of the tunnel.

    Marie XXXX

  • Have you been here? xx




  • T Y FOR THIS HElpful info x

  • I have absolutely no idea if this could help (and almost dare not suggest) but Temporal Arteritis is worth eliminating, a friend has it and is extremely painful, but steroids have eased it at present, she has had pernicious anaemia for many years.

    (Please note - I am no medical expert, just a fellow Thyroid sufferer who feels the need to pass on something that could possibly be relevant) J

  • T y spare ribs. I m concerned that I do have temporal arteritis, and im glad that am mri scan is up and coming. X

You may also like...