[Lauren96]

#1058697

I will try and make this long story as short as possible. Diagnosed last Sept. Treated with Tapazole, has an allergic reaction. Decided against PTU bc liver results were elevated to begin with. Had RAI in Dec. Things seemed good, even dipped into the hypo range. 2 months ago, hair started falling out, just walking left me winded…..and yes, Graves was back in full force ( I do realize it never goes away, but you know what I mean).

My Graves marker is elevated again, my TSH is low .011. My T3 and T4 are actually normal. I have no idea what that means. And I’ve started having eye symptoms. My Dr wants to right away do another round of RAI, but bc of my eyes and hesitation to have more radiation (I"m already scheduled for another uptake in 2 weeks), I don’t want to. They are basically telling me more RAI or surgery.

The worst part is that I’m having the mental issues…forgetfulness, confusion and short temper/rage. I can barely make it through the day let alone make more life changing situations. And all I can do is cry. <<<and that isn’t me at all. I’m not a crier.

Has this type of recurrence happened to anyone and what did you do? Or any insights as to what is going on?

As far as my RAI, they didn’t try and make me "normal". They did a dose they said would kill the thyroid so this wouldn’t happen, so I know I got a high dose. Guess my thyroid has 9 lives.

[snelsen]

#1169442

Welcome, you can write and write as much as you need. Welcome to this wonderful board with great facilitators and
participants. I am walking out the door, but wanted to briefly acknowledge your post.
My first thought, which I am sure will be echoed with references very soon. RAI and eye symptoms do not go well together.
The new treatment guidelines do address this, basically that if we are having TED, or eye changes, RAI is not a good treatment choice, except with special guidance, and usually steroids given before RAI. Kimberly recently referred to the new guidelines, and I am not sure they are on the main webpage of this site yet.
Are you going to an endocrinologist who is familiar with Graves’? I suggest you begin to see a neuro-ophthalmologist for a good eye evaluation, then be followed by them. Who is taking care of your eyes?
I have to go, but you will get some good responses.
Shirley

[Kimberly]

#1169443

Hello – I’m sorry to hear you are going through all of this. A recent article in the New England Journal of Medicine noted that about 14% of patients who choose RAI end up requiring multiple treatments.

Here is the link to the guidance that Shirley referenced. You can view it as html or download it into a PDF doc. The info on managing Thyroid Eye Disease (called Graves’ Ophthalmopathy in the guidance) is towards the end; it starts on page 30 of the PDF doc, which is page 622 of the original journal.

http://www.liebertonline.com/doi/abs/10 … .2010.0417

(Note: you will need to use your browser’s "back" button to return to the boards after viewing, or cut & paste the link into a new window.)

Many docs will recommend a dose of corticosteroids in conjunction with RAI to reduce the risk of further eye involvement, but of course, steroids come with their own risks and benefits, so that is an issue to discuss with your doctor.

Once you receive further treatment, you should start to see some relief from your symptoms…the mental/emotional issues are absolutely connected with having our thyroid hormone levels out of balance.

Take care!

[Lauren96]

#1169444

Right now, I feel ok with my endo. He’s new to me bc my old endo moved to the west coast. as far as my eyes, I’m only under the care of my optometrist. I know that sounds crazy but I’m trying to see an ophthalmologist, its just slow going w/ my health insurance.

Right now, one of my biggest issues is the vicious cycle of stress. Graves makes me moody and volatile, which causes me to be short with my kids and crazy with my H. Then I feel so much guilt later and feel like I’m driving them away. Which stresses me out. Rinse and repeat.

I am looking into relaxation and yoga.

Still in a holding pattern as to what my next step might be. So does surgery have the same possible eye complications that RAI has?

Thanks for answering.

[Kimberly]

#1169445

Hello – Although *anyone* with autoimmune thyroid disease can develop TED, regardless of treatment option, surgery is not considered a risk factor for eye involvement. The latest guidance from the American Thyroid Association and the American Association of Clinical Endocrinologists notes that “…Methimazole or thyroidectomy are…the preferred choice of therapy in patients with active and moderate-to-severe or sight-threatening GO.”

[Ski]

#1169446

Hi Lauren,

You’ve got great information so far — I just wanted to point out that an optometrist has virtually no education on Thyroid Eye Disease, its treatment, and patient care. In the world of doctors who pay attention to eye issues, it’s almost apples and oranges, when you compare optometrists to ophthalmologists. Optometrists handle vision issues and glasses. Ophthalmologists deal with aberrations in the structure of the eye and diseases that occur in the eyes. You really must see an ophthalmologist, and preferably a neuro-ophthalmologist, in order to get the right care for TED.

[Author]

Posts