[catstuart7]

#1059080

I’ve been feeling weird twinges and sometimes pains kind of behind or on the side/back of my eyes especially in the morning. Should I worry? My ophthalmologist says I have extremely minimal TED so far. At what point should I freak out and make an appointment to go back to see him? Could he do anything anyway?

[Bobbi]

#1172007

While it is important to be under the care of an opthamologist when we have TED, they typically only “watch and wait.” We need to be seen at somewhat regular intervals. If there are new, and disturbing symptoms, making an appointment to have them checked out is appropriate if the symptoms persist or increase in severity. Even then, unless the doctor suspects that your optic nerve is in peril, (i.e. if your sight is threatened), they watch and wait, weighing the known, signficant and common side effects of intervention with the knowledge that TED subsides on its own, over time.

If you are experiencing symptoms like this in the a.m. primarily, and if they go away as the morning progresses, you might try elevating the head of your bed slightly with bricks or boards, so that you sleep on somewhat of a slant. This helps to minimize the possibility of swelling that can occur overnight while we are in a prone position.

Sending hugs, catstuart7. I know how scarey this time is in your life.

[catstuart7]

#1172008

Thanks Bobbi, I think my guy would definitely be watch and wait like you say. I almost got the feeling he didn’t even want me in his office when I first saw him – this guy does TED surgeries – but my endo referred me to him to get a baseline. Thanks for the hugs I’ve been freaking out a lot lately.

[adenure]

#1172009

Hi catstuart!

I’m glad you posted this! In the last week I’ve felt twitches here and there too and wondered the same thing. I guess, like most everything, it’s a wait and see type of thing. Waiting and seeing together- lots of support & positive thoughts for you all.

Alexis:)

[Kells1]

#1172010

Hi Cat,

I have TED and get burning and stinging sensations and dryness and irritation and headaches, blurry vision etc.. but even then they just give you drops for the dryness and say wait. Keep monitoring your eyes for any changes.

[Bobbi]

#1172012

Kells1, be sure you are using the drops frequently enough. Some people have to use them every 15 minutes or so. And, also be careful to use the preservative free drops unless otherwise instructed by your eye doctor.

[catstuart7]

#1172013

Alexis, sorry you are having this trouble too. I feel like a wimp getting freaked out about it given the serious trouble some on this board have, but each time I feel that weird little tweak behind my eye in a place I’ve never had a sensation before I just get filled with panic. I asked the ophth. specialist about how to deal with the fear of disfigurement and future surgeries and he wasn’t sympathetic at all and said I should just go see a therapist if I was freaking out about it so much. I’ve gotten much more help from the message boards seeing that life does go on even if the worst happens.

Bobbi/Kells, I use the drops too probably not often enough. I kind of gotten used to just being uncomfortable all the time probably not good for my eyes. Maybe I’ll go put some drops in now.

[Bobbi]

#1172014

Sitting here thinking how much easier it would have been for that doctor to say something like, “Yes, it IS frighting to have our appearance change due to disease.” Because it is frightening. And it’s not just appearance, either. Oh, well. That doc’s empathy response was down in the negative column. He could still be knowledgeable about the technical details of the disease, even if hand-holding isn’t in the cards.

You probably have heard of the Serenity Prayer. If not, I found it helpful when I was going through TED to remind myself that there are some things over which I have NO control, and to let them go. Not easy. But it put things back into perspective.

[Kells1]

#1172015

@Cat – Your reaction and fears are perfectly normal, despite what the specialists, docs and others may say. Its not easy for others to understand the psychological and physical and emotional stress and worry any eye issues can have on our lives and general health. TED is not just about the physical changes, but also visual and dry eyes can be a nightmare to deal with if not managed correctly. Then theres also the headaches and pain and fatigue and irritation and floaters and bloodshot eyes and lid retraction/bulge/protrusion, which makes it hard to sleep or even look in the mirror or even want to go out and face the world or go to work.

All you needed from that eye specialist was REASSURANCE, and he/she should have given you that and not some sarcastic remark about seeing a therapist. Medical professionals are not just there to dish out meds or do surgeries, they are also there to support a patients well being by providing empathy and support, listen, respect as well as give patients information about what they want or need and to help make sure that they are satisfied and understand what is happening to them and how to get through each stage of their illness and treatment in one piece.

And as Bobbi mentions again and again, please do keep your eyes well lubricated. The key is to keep the eyes wet as much as needed before any feeling of irritation or discomfort develops. Each of us are different and the severity of TED will also vary considerably.

I do agree though that such resources as this site are invaluable to any sufferer. Its a shame doctors dont give out a list of helpful sites or numbers or organisations to patients for support networks so they arent left isolated with their condition.

Symptoms of TED:

Swelling of upper or lower lids or both
Redness
Keratoconjunctivitis
Eye Protrusion – either bilateral or unilateral
Red eye veins
Double vision
Watery eyes
Burning sensation
Stinging sensation
Headaches
Photophobia (light sensitivity)
Orbital Pain/Pressure around the eye socket or behind the eyes
Itchy eyes etc…

*Not all may be present, but always get the right diagnosis from a medical prof.

Also, maybe a TED checklist may help others:

Preservative free drops
Daytime eye protection wear with UV filters
Night time protection goggles/mask for eye dryness
Head elevation at night – for eye swelling
Night time eye gel
Humidifier
Painkillers – only if needed and DO NOT EXCEED THE STATED DOSES
Cold eye packs to reduce swelling etc…

*Not all may be required

[beach45]

#1172016

Catstuart,

I am sorry you are going through this and hoping moving forward you get the best care by doctors to watch this situation.

I had TED symptoms for about 3 years off and on prior to Graves coming out yet I did not know it was TED. I finally went to a thyroid eye doctor who specializes in TED and he said I have moderate TED; his Physician Assistant (PA) did extensive testing and He examined me carefully. He sees this often every single day. The PA told me since I seemed concerned, to stay on a low dose of Methimazole if I can. Yet the thyroid eye doctor said even with my moderate TED to go ahead with the RAI and that I did not need a steriod prior to RAI to protect my eyes. He was not sympathetic, just acted like this is routine and that if necessary surgery can be done later on. I found out later he is one of the best in the country. I use drops and was told use them regularly because that is so important. To keep my head elevated at nighttime. I do some natural stuff too as far as supplements yet I will not discuss this here and my doctor is okay with it.

I am finding post RAI that my symptoms are not better as far as my eyes. I still have dryness, burning, red eye, had protrusion for years anyway, itchy and very sensitive to lights especially at night. I wear sunglasses all the time even inside at the mall! I follow up with my thryoid eye doctor in about 3 weeks from now.

I am sorry that doctor is not sympathetic and I found overall with this Graves business I am not getting much sympathy the last 2 years and only one endocrinologist who after 6 months left my State. As we know the eyes are very important and if things change physically it can also have psychological impacts on the person.

I have concerns too following my doctors’ advice regarding my eyes as I’m still too new post RAI to know if there will be more problems down the road. I do know that my thyroid eye doctor said that there is an active and inactive phase for TED and that I was not in the active phase. Yet we also have to be our own health care advocates and make sure that we are doing what is right for ourselves to protect our own health. Doctors are providing a service to us not the other way around.

I hope things get better for you with these doctors.

I like what Bobbi said about the Serenity Prayer as since getting this Graves/TED I say it very often and it does help.

Kells1 has some great lists there regarding TED symptoms and the TED checklist.

Best of luck moving forward!…beach45

[Kells1]

#1172017

Has anyone tried the selenium supplements as I hear they help with the TED and dryness as well as omega fish oils and flax oil?

[beach45]

#1172018

I have taken fish oil for years for other issues; I take flax on top of my cereal; for me I would only take the selenium as a supplement if I told my doctor and he approved; there is some already in my multivitamin. I have a sister who is a higher up at the FDA and says be careful with supplements as they are not regulated by the FDA. My doctor wants to know any time I take any new supplement and yes I heard about the selenium supplementation many times for eyes….guidelines here posted by Kimberly caution about “alternative therapies.”…beach45

[Kimberly]

#1172011

Hello – There was a small study in Italy last year that showed that selenium supplements (100 micrograms twice a day) might have a positive impact on mild TED. However, the study was done in an area known to be selenium-deficient, so more research will be needed to determine whether this might be helpful to other patients.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/professionals/publications/clinthy/volume23/issue7/clinthy_v237_5_6.pdf

Before adding selenium to your regimen, it’s a good idea to talk to your doctor about appropriate dosing, as excessive doses can cause negative side effects.

[catstuart7]

#1172020

Exactly Bobbi, I mean would it have killed the man to show one iota of empathy! I hate to think how he talks to his patients with severe TED. He doesn’t strike me as having hidden emotional depths. I’ve been told he is The Doctor to see in my region if I will ever need OD surgery so I guess I’ll have to get along with him.

Kells1, thanks for that list – I do have some of those symptoms for sure. I’m curious to try the cold pack because my eyes always feel hot and scratchy to some degree. And yes reassurance…that’s all I wanted. I wanted his perspective on things where I’m at, what to expect, something to help me calm down.

Beach, thanks much for your support. I’m glad your thyroid eye doctor has such a good reputation though he doesn’t sound too compassionate either. My doc basically said the same thing – that if it gets bad he’ll just do surgery no big deal. Uh, to YOU maybe. Good luck with your eye guy and the endo too, I know you were thinking about another endo? I too wish they all could be more compassionate but I guess they see people all day long with issues and it becomes routine to them.

[Bobbi]

#1172021

To Kells1: I would suggest you edit your great list about how to cope with TED. You put on it that folks need a couple of pillows to elevate the head. While we do often need our head elevated to reduce overnight swelling, using pillows can throw off some folks’ spines. Our heads can often be more safely elevated by putting wood blocks or something similar under the head of the bed. If your bed sits on one of those metal frames for instance, it is not too hard to put a touch of height at the head end of things. That way your spine is fully supported and not “bent” (folded, mutilated or spindled….)

[Author]

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