Just had radioactive iodine

[michelle029]

Hi all,,,,
i was diagnosed with graves and just had radioactive iodine. i am having terrible mood swings and anxiety attacks. is this normal? also, i am curious if anyone has the bulging eyes? i would like to know more about the eye bulging. i don't have it yet but very scared about the unknown. is there anyone who can ease my mind?

[NastyHashi]

The anxiety attacks can be caused from RAI....When you get RAI, sometimes the thyroid dies off quickly, which essentially sends a larger than normal dose of hormone into your system, making you nervous or hyper....all those thyorid cells that are dying off are filled with hormone and when they die, that hormone is released into your system. The nervous feeling will subside....if it gets bad, ask your doc for some Xanax or Propranolol to slow your heart rate and chill you out. Porpranolol works great for slowing down a fast heart rate and calming you down.

The good thing is that the RAI is working....once those cells die off they will not be back to make you hyper....From what I've been told that jittery feeling does not last too long so if you want to "white knuckle" it you can or just ask the doc for some meds for the short term.

Watch for signs of Hypo in a few weeks....if you start gaining weight, feel drunk, slow, slurred speech, really sleepy etc, its time to go on replacement hormone probably....don't just wait until your next appointment....listen to your bod and get tested if you think you need to. There's no point in going totally hypo before starting meds.

Keep in check with your doctors over these next few weeks and insist on being tested if you think something is not right. It could take days, weeks or months for that thyroid to die off depending on the dose of RAI and how much you absorbed.

[michelle029]

Thanks for the info. I currently am on propanolol. That does help a bit. I am so happy you told me to listen to my body because I am the one who knows it best.
My mood swings have gotten better. Now my throat is just sore a bit. I hope that it will pass soon. I still worry about my eyes starting to bulge. I am not sure will get over that fear.
Thank you so much for your reply.

[NastyHashi]

From what I've read, RAI could make TED worse in some people but it appears to only be those people who had Thyroid Eye disease before RAI.

If your eyes were ok before you got nuked, odds are good they will be fine. Ask your doc about it next time.

My personal opinion is that some people are more prone to eye trouble than others with Graves'. The people that are tend to get eye symptoms early in the game and those who are not are usually fine regardless of how bad the Graves may be.

I really think you are in the clear if you have not had much trouble before. Now, your thyroid id dying off pretty quickly so the odds of getting an eye disease now, after the RAI I think will be slim. Overall I believe the number of people with Grave to those with TED is pretty slim to begin with. Having Graves' does not automatically make your eyes pop out and even then, its usually a long term process before people get treated. Its not like you wake up one morning looking like a frog and since you already had RAI, you've gotten rid of the problem that can cause it....I really think you will be ok...its a rare disease compared to the vast number of graves patients.

[michelle029]

Thank you so much for your positive outlook. I sure hope you are right. You sound very educated with Grave's disease. I am so happy I found this site, you have helped out so much. If I have any more questions or concerns I will definitely make another post. Thank you again.

[tiggerg65]

hello new here glad to have found this board. i also had the radioactive iodine 4 yrs ago. i now take armour thyroid 240 mg. i have the bulging eyes also have high blood pressure anixety the list goes on and on. any ideas would be a great help linda

[Arual]

Hi,

i am also worried my eyes will start to bulge. my doctor has diagnosed active thyroid eye disease because my eyes are dry, sore and intolerant of my contazct lenses plus a little double vision. My doc tells me they will not give RAI until they think my eyes have settled down so if you have had the treatment they must not think you had active TED. If you didnt have it yet, dont smoke and have no symptoms at all yet im pretty sure you will be ok, ive been told by my consultant that RAI can affect the eyes but only if they are already showing symptoms. So i agree with NastHashi, especially the bit about some people being more prone to it that makes sense. The unfortunate news is that even if you have had your thyroid irradiated it doesnt mean that the cause of Graves eye disease is removed. This is because the eye disease is only associated with the thyroid problems, not caused by it. Basically your own body's antibodies malfunction and attack your thyroid and make it overproduce thyroid hormone, other antibodies also attack part of the eye and make it inflamed so it bulges from the socket. That sounds really scary and horrible doesnt it? But as NastyHashi says it is more rare to have the eye disease and lots of people have mild symptoms and nothing more, so the scare stories are more people who have been very unlucky and also smokers are supposed to do worse. Also i have been told that if it happens they can give steroids to suppress the immune system which will stop those rogue antibodies, also they can do a little operation to 'pop' them back in my doc tells me, which is reassuring to know it wont be permanent if the change in your eyes bothers you. Another reason to think you are in the clear is that the eye problem is apparently one of the first symptoms so you havnt had it yet at all which is good. Hope all that helps. with my active eye problems i will be keeping my fingers crossed. this is all from what my consultant told me so i would like to hear personal experience of the eye problems as i am most concerned about that especially with wedding coming up,making me extra vain!

Really sorry to hear you are not feeling good tigger, can your doc give you something for the anxiety like propanalol? Also there should be some treatment for your high blood pressure maybe you should have blood tests to check if the overactivity came back and you need another dose of RAI? hope you feel better soon Arual xxx

[GD Women]

One can have TED and not have Graves’ and one can have Graves’ and not have TED.

The condition is seen in people with no other evidence of thyroid dysfunction, and occasionally in patients who have Hashimoto's Disease and in other autoimmune conditions.

Most thyroid patients will not develop thyroid eye disease and if so, only mildly so. Thyroid Eye Disease is an autoimmune eye condition that is separate from thyroid disease, but is often seen in conjunction with Graves' Disease. Graves' eye disease/TED is currently believed to be due to autoimmune reaction. TED (Thyroid Eye Disease) is caused by separate but very similar antibodies to Graves'. In the case of Graves' eye disease different antibodies attack the muscles associated with eye and eyelid movement. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain independent of one another. The antibodies that attack the eye can cause inflammation and swelling of the muscles around the eye, which is what can eventually cause protrusion of the eyes, double vision and retraction of the eyelids.

We are at risk for developing TED anytime. The bulk of cases arise within one year of Graves' thyroid symptoms, one year before or after, but there are plenty of cases that fall outside that window, so there really is no way to say we are ever past the point of contracting TED. I got my TED two years after diag and treatnment, but it hasn't gotton anyworse and I have no vision problem. TED can come only once or visit us many times over our life. We can have multiple flair ups through our lives. Each time we have a hot phase we need to deal with what damage it is doing during that phase. I have read where people have had four hot phases, so far, and needed corrective surgery after each bout of inflammation.

In autopsies done on Graves' patients doctors have found SOME changes to the eye muscles in nearly every patient whether or not they had already been identified as a TED patient. So the fact is that we all probably have some level of TED but if it's not enough that our eyes are markedly different or uncomfortable, we don't identify it as such.

RAI does not cause eye disease, however, RAI tends to worsen Graves' eye disease but usually that's in smokers. 16% of patients have a temporary worsening of eye symptoms that was thought to be a result of an antibody reaction to RAI. Any effect the RAI would have on the eyes is seen in the first few months following treatment, and any eye disease issues that occur after that would not be related to having had RAI treatment.

By taking the prednisone antibody reaction can or might be, averted and according to New England Journal of Medicine "worsening of ophthalmopathy after radioiodine therapy is often transient and can be prevented by the administration of prednisone".

None of the treatment options will avoid the eye disease if you develop it.

Some people develop TED when they take animal-based extracts such as Armour, because the immune system react to foreign proteins found in glandular extracts. Synthetic meds. doesn't cause this probelm

Use Lubricating eye drops with natural ingredients /no perservatives (expecially if you have TED)and sterile. Not something that gets the red out those can be more drying to the eyes .

The only way to minimize any risk is to keep our stress. By keeping stress down levels down and the symptoms will be less severe. However keeping stress levels down does not guarantee that we will not end up with severe TED. And stop to smoking.


See an opthalmologist soon as possible. You will probably be a "wait and see" patient which is very common. Usually there is nothing nothing done about TED even if there are early signs of TED because doctors do not do anything at first. They prefer to wait and watch. Well-trained doctors waite and watch through a year and a half or so of "hot phase". But it's good for an opthalmologist to have baseline readings for your eye measurements so they have some way to quantify the changes. Then you'll have an established relationship and the doctor will know where your eyes started.
One way to tell for sure is to get a photograph from a couple years ago, and compare with now.
However if you are currently hyperthyroid, the slightly larger-looking eyes might be due to excessive levels of thyroid hormone

[Arual]

Thank you so much for the information GDW. You explained a lot of the jumbled ideas i have heard. It really helps you to cope with these things when you understand them even if you cant do anything about it. Thank you!

[cheriblondie]

Yesterday after talking to my doctor, I am one of the unfortunate patients he confirmed I have TED. My symtoms are coming at me strong. My eyes don't move when I wont them too.They are painful, swollen, dry and my eye now moves on it's own acord, freaking my family out. I have now resorted to an eye patch for when my eyes get to painful. If you don't have symptoms present then you should be ok. For myself I have graves disease and TED, I have not gone through my procedure yet on my thyroid. and as time goes on my eyes get worse. Good luck and God speed for a healthy recovery.

[Arual]

Hi Cheriblondie this may help you. i had an eye test with my optician, not opthalmologist, but she is still still very knowledgeble. One of my eyes is also starting to 'wander' a little bit, and she gave me three very simple things to do which could help. 1) draw a vertical line on a piece of a4 paper, at roughly 1 inch intervals draw a little dot, so you have a line with dots all along. Hold this close to your face and look along it at the dots, one at a time. Because you hold it so close to your face a 'phantom' second line appears (a bit like going cross eyed) as you look at the furthest dot the two lines (real and phantom) will intersect, look at each dot coming up the paper towards your face. if your eyes are not in sync as you get to the dots closer to your face it will be more difficult to have the two lines intersecting. Keep doing this and you can 'train' your eyes to come back in line.

2) she suggests hot flannels over the eyes twice a day

3) systane eye drops