Eye disease and upcoming radioactive iodine. Struggling

[GraceLucy]

I’m struggling so much with my thyroid problems.

I’ve been terrible at treating my hyperthyroid. I think I got addicted to the fast pace and energy of being hyper and when I take my carbimazole properly I feel terrible and not my self (tired big lack of energy and motivation and self conscious )

I’ve decided to go for the permanent treatment of radioactive iodine so I don’t have to mentally battle with taking carbimazole. But my eyes have been hurting recently and I’m so scared I have eye disease which can worsen with the treatment .

I’ve moved from my home town to London and had 12 different doctors and consultants and find no one really understands in my support network.

Not sure what I’m hoping from this post. Maybe someone who has gone through the same thing and can say it is ok? I don’t know anyone who can share my stories.

I’m 27 and struggled for 4 years. My worst thing is that nothing feels in my control and it’s partly my own fault it’s got so bad.

[bantam12]

It's not advisable to have RAI if you have thyroid eye disease so you must find out what's causing your symptoms before going down that route.

I had RAI many years ago, it didn't cause me any problems and I went hypo very quickly.

If you have issues with taking your Carb are you going to feel the same way with taking Levo, after RAI it will take a good while to find the right dose but this will take longer if you still have to "mentally battle" with the Levo.

Good luck whatever you do.

[GraceLucy in reply to bantam12]

Thanks so much for your reply. Probably will have a problem with taking the replacement drug tbh :(. But think it’s safer then carbimazole. Got to improve my perspective.

Going to think twice about the rai if it does turn out to be eye disease.

[Kari55]

Hi GraceLucy, my husband has got thyroid eye disease and his ophthalmologist advised him against RAI. They are some good eye doctors at Moorfields Hospital.

[GraceLucy in reply to Kari55]

Thanks so much for your reply.

I’m struggling to find info on thyroid eye disease. Do you know if it goes away eventually or if you always have it? Does carbimazole help get rid of it?

Will think twice about the rai!

Thanks again

[bantam12 in reply to GraceLucy]

There's lots of info on TED online.

[Kari55 in reply to GraceLucy]

From what we understand TED doesn’t go away but it can be controlled with thyroid medication. Unfortunately, each time Graves flares up, the eyes deteriorate further due to the antibodies attack. My husband’s TED is at early stage but even in his case the doctor advised against RAI.

[jimh111 in reply to GraceLucy]

If you suspect thyroid eye disease it has to be assessed by an endocrinologist or specialist in TED. It goes away eventually but has to be carefully monitored and treated whilst ongoing. The eyes have receptors for TSH, nobody knows why they are there perhaps they are used during development of the eyes in the foetus. If you have TED TSH must not be allowed to go high as it can stimulate the receptors in the eyes and may aggravate the TED. Smoking is very bad for TED.

I've no solid evidence but I don't hear good things about RAI. Personally I would only have RAI if there was no alternative.

[LAHs in reply to jimh111]

Wow, that's fascinating. I didn't know the eyes had TSH receptors and I could not imaging how hypothyroidism could affect the eyes. Well now I know. My TSH is always suppressed so I guess TED is one problem I need not worry about, thanks.

[jimh111 in reply to LAHs]

HYPERthyroidism (Graves') affects the eyes, not hypothyroidism.

[RedApple Administrator in reply to jimh111]

jimh111, I think you need to qualify that statement somehow.

Hypothyroidism (i.e. insufficient thyroid hormone) most definitely does affect the eyes. I speak from personal experience.

There's an interesting article about the role of thyroid hormones and vision here thyroiduk.org/tuk/research/...

[bantam12 in reply to jimh111]

My sister is hypo and she had severe TED.

[helvella Administrator Thyroid UK in reply to LAHs]

The issue is not TSH and TSH receptors in the eyes - rather, in TED, it is TSH receptor antibodies and TSH receptors in the eyes.

(Graves is usually regarded as the result of TSH receptor antibodies, specifically the stimulating type, cause excess production of thyroid hormone.)

[jimh111 in reply to GraceLucy]

Sorry my very brief comment wasn't clear. helvella is essentially correct. The eyes have receptors for TSH, noone truely knows why, doesn't matter they are there. In Graves' there are TSH receptor antibodies (TRAB). These antibodies attach to the TSH receptors in the thyroid, stimulate it and cause hyperthyroidism. They can also attach to the TSH receptors in the eyes causing tissues to enlarge leading to protruding eyes.

If after thyroidectomy or RAI a Graves' patient has high TSH levels this can affect the TSH receptors in the eyes causing more eye damage. Thus, it is important that TSH is kept low in these patients. I believe (not sure) low really means not high, it doesn't have to be suppressed like in thyroid cancer patients.

Don't ask me why TSH does not cause eye problems in healthy people - I've no idea!

RedApple, I've only skimmed the link you gave, I'm a bit tired. Certainly thyroid hormone plays a major role in development of the eyes in the foetus and TSH receptors probably have a role in this. Hypothyroidism has effects on the eyes. I found my vision a little 'soft' when hypo, not sharp focussed. Dr Skinner describes patients often having 'floaters' or seeming to see something out the side of their eyes. I was only referring to the effects of TRAB on TSH receptors in the eyes which occurs in Graves' hyperthyroidism. I didn't make that clear, sorry.

[Dizzy9 in reply to GraceLucy]

Hi Gracelucy,have you looked on the British Thyroid Foundation website? There is a lot of information about TED, read the newsletters too. There is also a proven link between taking two hundred micro grams of Seleniuma a day and preventing TED, so I would start taking some straight away. You can get it from Holland and Barrratt.

[Hidden]

You might also want to have your B12, folate and ferritin levels checked. Low B12 levels can negatively affect your eye sight.

[tcanno]

Go to your local Hospital with an eye unit and get checked out

[Triciadavis]

Hi Grace, sorry to hear that. I have overactive thyroid and been that for nearly 2 years it has been hard. I was on carbimazole and now I am on ptu. I would like to ask how's your food intake. Cause that made a big difference to everything. I take vit D, B1,B12 and my magnesium. Cause of change it has gone down.

[GraceLucy in reply to Triciadavis]

Why did you swap from carbimazole?

I will buy those vitamins. Thanks for the tip!

[Hidden]

What eye issues are you experiencing? I had eye popping and now 14 months after my thyroidectomy I still have eye issues and developed psoriatic arthritis which attacks my eyes they call it uveitis.

[GraceLucy in reply to Hidden]

Thanks for your reply. It’s just a lot of pain in and around the eyes as well as soreness and pressure feeling. Does the eye popping go away? Did it happen in one go or was it gradual eye popping? Is there anything to make it less bad?

I’m thinking of taking some steroids so the inflammation goes down but have to wait a while for the eye doctor referral.

[Espisnowwoman]

If u have trouble with ur eyes. U should go see an eye doctor. Do u have graves?i hope u feel better.

[GraceLucy in reply to Espisnowwoman]

Yes I have graves. I went to hospital today and they said I need to wait until I’m in my local hospital where they have all my notes.

Worried the eyes will get even worse as it’s very painful.

[Espisnowwoman]

So sorry to hear that. Eye problems do go with graves. Mine used to get real gritty like i had sand in them. R ur eyes bulging out?

[GraceLucy in reply to Espisnowwoman]

Yes they are starting to and they do feel really gritty now as well. Did yours bulge out? Did they go back to normal afterwards? I may push for steroids..

Hopefully going to see an eye doctor tomorrow, but they will probably make me wait.

Thanks for replying, it's nice to know i am not alone!

[Espisnowwoman]

U r not alone. No my eyes did not bulge. I will keep u in myprsyers. Feel free to contact me anytime.i have had hyper/graves for 22 years so i get it.

[helvella Administrator Thyroid UK in reply to Espisnowwoman]

Please do not use "txt spk". Many here find reading and understanding ordinary words and sentences hard enough due to brain fog. Short abbreviations can make posts and responses impenetrable. It does not make it easy for those who have English as a second (or third) language.

[Espisnowwoman in reply to helvella]

Sorry

[jean66]

If you decide on RAI your Dr. should prescribe predisone to prevent an increase in eye involvement prior to the treatment.

[GraceLucy]

Hi everyone,

I thought I’d share an update. This is fairly long but was more therapeutic for me!

Lessons learnt if you suspect you have ted and you don’t have bulging eyes:

- try to reach your specialists in the endocrine centre

- Trust your own pain (Hard when you have a doctor brother and tonnes of other types of specialists saying you’ll be fine)

- if you have a radioactive scan and you’re hyper remember this can impact your eyes!!! steroids might be the right course if you have a reaction. (I didn’t know I had a problem with my eyes before the scan)

- resting is important if you have bad ted. You need to take time off work and relax.

————-

Events:

(2 weeks prior I had a radioactive iodine scan)

Friday - I had severe pain in my eyes and felt like I couldn’t move them. My comfortable gaze was down left and it was so frightening to leave the house.

The pain got worse every day. My brother and his wife are doctors and told me the pain will go. To take paras and ibu but I knew it was worse than that.

Sunday night: I went to a and e near where my parents live and they checked my vision which was still fine (I’ve always had great vision). I explained the pain of moving my eyes was unbearable and the hospital said I need to wait until I go back to the hospital where I am treated to get care, you don’t have double vision yet so don’t worry

Monday morning: I went straight to my hospital to the endocrine centre but no consultants were working that day so I was advised to go to eye casualty. I had so many tests on my vision. I kept explaining: the pressure feeling is worse and I can’t move them, I had a radioactive iodine scan recently, I have graves etc etc. They then gave me an optic nerve scan where it looked extremely compressed. Next thing you know I have an eye consultant say ‘we don’t think this is ted because your eyes aren’t bulging we think it could be something very serious’ then he went off to speak to a colleague leaving me petrified! Meanwhile I sent photos to my brother and he was equally as concerned as the consultant.

The consultant then gets advice from another consultant who is not as alarmed. Who says I have a small optic nerve and the scan could have exaggerated the swelling. I get told to come in next day cause they can’t do some scans because my eyes were artificially dilated (after 7 hours in eye care).

Tuesday: eye pain is much much worse. Turn up to hospital and have more scans and tests on muscles. The same doctor then ruled out lots of dangerous stuff and thinks I have mild ted (just cause he didn’t think they were bulging despite me banging on about the pain). He gave me a course of ibuprofen and eye drops and said I had no reason not to go to work. I mentioned that I think I need steroids. I had a scan that contained iodine and it’s been bad since then etc etc. He said it should die down naturally and steroids are bad. I was in so much pain I cried all the way home and couldn’t work because of the blurry vision and pain of moving. I went out that evening even though I felt so wrong. I struggled to look anyone in the eye and had eye ache all night. I cried in the toilets thinking ‘is this my life for 6-24 months?’ (The length of ‘active ted’ stage)

Wednesday - I tried to get up to go to work but just couldn’t focus on the screen. I was going through anxiety and miserable existence thinking how can I work ever. I am only 27. I didn’t care about the appearance I just needed the pain to go! I tried to book a gp appointment for my mental health and have booked one for 3 weeks away cause doctors is fully booked always 🙄🙄🙄

Then I had a call from my endocrine nurse. I told her I wasn’t coping. I had a scan. It’s hurt since then. It’s getting worse etc etc. She was really reassuring and went off to talk to an endo. The endo said I immediately needed steroids, that the symptoms were completely because of the small amount of iodine in the scan 2 weeks ago, that they will only be temporary but we need to prevent lasting damage. FINALLY I had an expert in the field. I got to the hospital as quickly as I could and am on my second day of steroids.

I have been referred to an eye specialist who specialises in ted and am seeing my nurse in a few days. She wants to see me every couple of weeks now.

Lessons learnt:

- Try to reach your specialists in the endocrine centre

- Trust your own pain (Hard when you have a doctor brother and tonnes of other types of specialists saying you’ll be fine)

- if you have a radioactive scan and you’re hyper remember this can impact your eyes!!! steroids might be the right course if you have a reaction. (I didn’t know I had a problem with my eyes)

- resting is important if you have bad ted. You need to take time off work and relax.