# Newbie introduction



## fellicity (Nov 14, 2009)

Hi all,

Thanks to Nova for helping me discover this site! It's always nice to talk to others who are living with Graves' and sharing our stories.

A little about me - I was diagnosed with Graves' in 2001, and treated with RAI that same year. I've been hypo and on Synthroid for at least the last 6 years. I'd always had Graves' eye disease symptoms (dry eye, 'staring'), but that's progressed to actual protrusion and I'll be going through Orbital Decompression in the next 6 months.

I look forward to "meeting" all of you on this site! 

Amanda


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## Nova (Nov 12, 2009)

Welcome and best wishes in your treatment! I hope you have the opportunity to connect and share here as I have and benefit from others!!


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## Andros (Aug 26, 2009)

fellicity said:


> Hi all,
> 
> Thanks to Nova for helping me discover this site! It's always nice to talk to others who are living with Graves' and sharing our stories.
> 
> ...


Hi, Fellicity and welcome to the board!!! I am worried about your eyes. Have you had radiation to the eyes/orbits to stop the infiltration of the antibodies?? One would not want to have the orbital decompression too soon.

In my particular case, I had Radiation (2000 RADS) 3 times a week for 6 weeks concurrent w/ Prednisone. Then I had to wait 18 months for the eyes to calm down (to be sure antibodies were no longer attacking the orbits) and for them to heal as much as they were going to before my surgeon could correctly assess what needed to be done.

I know many who have had to have this done over a second time and I know you would not want that.

No matter what you decide, I want you do know that we are here for you and will be supportive of your decision. No two persons have the same situation, that is for sure!

Hugs and once again, welcome!


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## fellicity (Nov 14, 2009)

Thanks Andros!

It's funny, I've asked about radiation w/steroids several times as an alternative to ODS, to my Optho, eye surgeon and a second opinion at Jules Stein Eye Center in LA, and each time was told I really shouldn't go that route due to (their words, not mine) the low chance of seeing possible results and the potential side effects of Prednisone.

Now I sort of feel like I'm back at square one when I was first diagnosed with Graves' - RAI or ATM? Doctors pushing or pulling toward one treatment or the other... I just want my eyes to look normal and feel better. ODS is incredibly invasive, so I will talk to the doc about radiation again when I see him at Jules Stein in Dec, but mostly want to know the risks/side effects of the surgery and what the dangers are of any sort of physical deformity. I know some people have to have multiple rounds of eye surgeries to "get it right", and that scares me too...


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## Andros (Aug 26, 2009)

fellicity said:


> Thanks Andros!
> 
> It's funny, I've asked about radiation w/steroids several times as an alternative to ODS, to my Optho, eye surgeon and a second opinion at Jules Stein Eye Center in LA, and each time was told I really shouldn't go that route due to (their words, not mine) the low chance of seeing possible results and the potential side effects of Prednisone.
> 
> Now I sort of feel like I'm back at square one when I was first diagnosed with Graves' - RAI or ATM? Doctors pushing or pulling toward one treatment or the other... I just want my eyes to look normal and feel better. ODS is incredibly invasive, so I will talk to the doc about radiation again when I see him at Jules Stein in Dec, but mostly want to know the risks/side effects of the surgery and what the dangers are of any sort of physical deformity. I know some people have to have multiple rounds of eye surgeries to "get it right", and that scares me too...


As you no doubt know, this is a very very serious surgery and it would behove you to not only get a second opinion but a third.

If you have not had RAI or ablation (surgical removal) of your thyroid, I would not even consider surgery at this time. No way!

It is true that treating the thyroid does not in fact treat the eyes but getting rid of that thyroid has a lot to do w/ the recovery of the eyes w/ the proper medical intervention for both the thyroid and the eyes simultaneously.

Do more research and ask a lot more questions; don't do anything hasty. I only say that because I do in fact care about what happens to you.


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## fuzzy (Nov 19, 2009)

Hi,

I was diagnosed approx 6 months ago with graves and an extreem over active thryoid. After a month of 40mg carbinazole my Th4 was 75, im told that was still very high, they said it was ff the scale at first. I had all the side effects but not eye disease. My eyes have started hurting lately though, hope it dont get any worse.
fuzzy


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## Andros (Aug 26, 2009)

fuzzy said:


> Hi,
> 
> I was diagnosed approx 6 months ago with graves and an extreem over active thryoid. After a month of 40mg carbinazole my Th4 was 75, im told that was still very high, they said it was ff the scale at first. I had all the side effects but not eye disease. My eyes have started hurting lately though, hope it dont get any worse.
> fuzzy


Hi fuzzy and a giant welcome to you! Oh, dear...........well; it would be a good idea for you to see a board certified ophthalmologist as soon as you can manage it. There is much to be done here for the eyes and early medical intervention is essential in order to stop the GED (Graves' Eye Disease) from progressing.

If your eyes are hurting, something is going on.

How are you doing on the Carbamizole? How often does the doctor have you come in for labs?


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## MrGraves (Nov 6, 2009)

oh man, would you please ask your docs if you can try Bugleweed ( same thing as gypsy wort) 
I know, I know, I poo poo'd it also, my wife begged me to take it, she is a master gardner and knows her stuff, I thought, what the heck, they have taken me off all the thyroid meds to prepare for surgery , my doc said it was ok to take so I started taking it and in less than 30 days, my eyes settled back in my head some, I got a lot of color vision back and even Dr Mike said "wow, your eyes look so much better, what are you doing" the eye gitters went away, i got color vision back, I dont look like rocky racoon anymore unless I forget to take it..

its called Bugleweed one word, its about 20 bucks for 90 capsules and if it could do for you what it did for me that would really help you out. its not a pharma , its a herbal . I swear by it helping my eyes, and Dr Mike even noticed a difference after 28 days, compared to what your getting ready to go through, maybe think about it and look into it. I can post a pic of what it looks like. We couldnt find it anywhere in the chicagoland area, we had to order it on line. I really hope you feel better.


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## fuzzy (Nov 19, 2009)

Andros said:


> Hi fuzzy and a giant welcome to you! Oh, dear...........well; it would be a good idea for you to see a board certified ophthalmologist as soon as you can manage it. There is much to be done here for the eyes and early medical intervention is essential in order to stop the GED (Graves' Eye Disease) from progressing.
> 
> If your eyes are hurting, something is going on.
> 
> How are you doing on the Carbamizole? How often does the doctor have you come in for labs?


im doing fine on the carbinazole, my worry is coming off it, i take my last dose tomorrow, ill know then if the rai has worked or not
thanks for the welcome


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## Andros (Aug 26, 2009)

fuzzy said:


> im doing fine on the carbinazole, my worry is coming off it, i take my last dose tomorrow, ill know then if the rai has worked or not
> thanks for the welcome


Yes; you will know and I hope it is very very good news. When will you go for labs?

I and others here will be anxious to hear from you re how you are feeling, what your labs look like, if you are placed on thyroxine replacement and so on.


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## fuzzy (Nov 19, 2009)

Andros said:


> Yes; you will know and I hope it is very very good news. When will you go for labs?
> 
> I and others here will be anxious to hear from you re how you are feeling, what your labs look like, if you are placed on thyroxine replacement and so on.


im a little confused, ive come off carbinazole and feel very very tired, ive no energy at all. i thought it would be the other way round


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## Andros (Aug 26, 2009)

fuzzy said:


> im a little confused, ive come off carbinazole and feel very very tired, ive no energy at all. i thought it would be the other way round


Are you saying that you are not on thyroxine replacement? What's up w/ that?

Let me know as soon as you can. This is cause for concern here.


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## fuzzy (Nov 19, 2009)

not on any replacement, after rai i was still high, i go for check up on jan 5th so will have blood tests then, if i need replacement that is when they will give it to me. i feel very sore since i come off carbinazole, my muscles ache


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## Andros (Aug 26, 2009)

fuzzy said:


> not on any replacement, after rai i was still high, i go for check up on jan 5th so will have blood tests then, if i need replacement that is when they will give it to me. i feel very sore since i come off carbinazole, my muscles ache


Wow! That seems a long time to wait w/ your TSH climbing up so high and that might be why you hurt so bad.

Well, let us know. I do hate this for you but I expect sooner or later it will all get sorted out for you and you will be on the road to recovery. I sure hope so.

We are here for you!


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## fuzzy (Nov 19, 2009)

cheers, will let you know, still aching!!!!!!!!!!!!


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