[angelamercy]

#1058887

My mom noticed something wrong with my eyes the wknd after Thanksgiving. To make a long story short, Hyperthyroid and Graves. Middle of January my liver stared to shut down due to the methalmizole (spelling). Thyroid storm – removal of thyroid by surgery Jan 25. This coming Tuesday will be my 5th IV treatment of cortisoids with little sucess. So I feel ugly and helpless. I have big eyes to begin with and now they bulge, they are red and ugly. No longer can I wear contacts. The scar on my neck is brown (yes I know it will fade eventually), so I wear a scarf, my face is so round from the steriods. I do not tolerate prednisione so that is why I am taking the IV treatment. I do not tolerate a drugs very well. Four of the six I was given in January I had severe reactions, jaundice, hives, stomach upset, muscles spasms. I tolerate the IV treatment but see very little sucess.

I am seeing both my endrocronoligist and nero-optomologist on Tuesday. Love my edrocronoligist, am afraid of the nero dr. She has a terrible bedside manner but is one of the best in her field. I will be asking about Rituximab.

Frustrated, angry and feel ugly. I am back to the gym and yoga classes which help. I eat well which I know helps. I am wondering how acupucture would help and also Bugleweed.

Sorry this is so long.

Angela

[Kimberly]

#1170690

Hello and welcome – I’m so sorry to hear that you are dealing with all of this.

To my knowledge, acupuncture and bugleweed have no effect on thyroid eye disease. In addition to asking about Rituximab, you might also ask your doctor about radiotherapy. I’ve heard mixed reviews from patients who have tried it, but I do know of a couple who have had success. Here is some info from the International Thyroid Eye Disease Society:

(Note on links: if you click directly on the following link, 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://thyroideyedisease.org/radiotherapy/

There was some research done out of Shiley Eye Center a couple of years ago that showed that the *appearance* changes are even more distressing to patients than actual changes in vision! Once the disease stabilizes, there are surgical options that can be utilized if needed to help restore the appearance and function of your eyes. In the meantime, it can be helpful to connect with other patients who have “been there, done that.”

If you do a search on this board for TED or “thyroid eye disease”, you can see that there are many posters here who have struggled with TED and the appearance and vision issues that goes along with it. Shirley (snelsen) had been great about documenting her experiences with TED.

Take care — please keep us posted on how you are doing.

[jamcam66]

#1170691

Hi Angela!

I’m very sorry you are have such a rough time of it. I’m new to all of this too & I will pray for your recovery. I have thought of you often since reading your post yesterday & I just wanted to tell you that you are not alone & please let us know how you are doing!

Peace, Love, Health & Happiness to you!

Sincerely,
Jennifer

[snelsen]

#1170692

Hi Angela, what did you learn at your doctors’ appt. with the neuro/eye doc and the endo? how are things going for you?
Shirley

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