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in reply to: Rapper Missy Elliott opens up about GD #1176661

gatorgirly wrote:

Thanks for sharing this. For those who only want to watch the discussion about her Graves’, skip ahead to 03:30.

On a somewhat unrelated note, I used to be a big fan of hers back in the day. The change in her eyes is drastic, much like mine has been.

Awesome gatorgirly! Thanks…I should’ve thought of that:)

True about the eyes too! I’m right there.

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in reply to: TED questions #1176654

Hi when you say you have extreme paranoia regarding TED. Do you mean about getting it? Or do you have symptoms now?

I’ll share a bit of my experience.
For me it started about 18 months ago(July 2011), I noticed that the creases of my eyes started to swell. By December it was getting out of control and by March(2012) I was wearing prescription glasses and by May, I was wearing sunglasses at work every day (we were actually on strike for 10weeks so I’m sure that the stress and loss of income made my eyes worse) and I started seeing an ophthalmologist by I think August because my eyes have become so sensitive to bright lights, vision seems to be deteriorating and not only were my eyes swollen (specialist “claims” it won’t go away without surgery) but here came the bulging. I’m 2 weeks post TT and the surgeon tried to assure me that my eyes will improve-RAI wasn’t an option for me because I’ve heard and read that it can irritate the eyes anymore and believe I can take anymore irritation. I see the ophthalmologist in 2 wks and we are supposed to discuss surgery options at that time however, I’m a stickler for 2nd opinion- so I’ll be requesting another referral.

I wish I could tell you what to do to avoid this from happening but I can say that not everyone suffers from TED the same way. You may never get as bad as I am but I’m confident that I won;t look like this forever:)

Be encouraged!

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in reply to: Help, desperately please if anyone can.. #1176461

“Rapper, Missy Elliott, has Graves’ Disease and she hasn’t worked in 3 years now. I imagine her career is ruined at this point. I understand this completely. I was an insurance broker and lost my license because I couldn’t work with it.”

I hope you don’t mind me responding in to your comment regarding Missy “Misdemeanour” Elliott. I’m happy to say that her career is far from “ruined” and being positive, I pray it never will be at any point. It’s true that she has had GD for 3 yrs and the we haven’t seen a video from her in that time but that woman is a beast when it comes to fighting for her life and not giving up on her dreams. She is so talented and like myself she REFUSES to give into this terrible disease for which they say there is no cure.
Just last year, she performed along side singer/dancer, Ciara on
BET’s Black Girls Rock!. I’m not sure if you know who Ciara is but when she’s on stage it’s evident that you better be able to keep up. She also has an artist that she has been working with by the name of Sharaya J and if you’re into twitter, hash tag: #banji just to get a glimpse of what Missy has been up to. She is without a doubt a musical genius and a true inspiration.

Not sure if the site will allow but I’ve posted the link of her most recent performance and her opening up about graves disease

http://www.bet.com/video/blackgirlsrock/2012/performances/ciara-missy-elliott.html

http://urltv.tv/10/08/missy-elliott-opens-up-about-graves-disease-on-swayinthemorning/

This disease isn’t easy and I’m not making light of it-hell I’m 2 weeks TT but I can’t give up or give in because if I do, if we do- we’re done.

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in reply to: New problems with eyes #1175181

I am so sorry that we are going through this. I too have been telling my optometrist and ophthalmologist that I feel like I am losing my vision but they don’t listen. I can’t see far distances with my prescription glasses on and if I try to read a book or the words on the computer it has to be really big. Driving for me can be a guessing game. In the day time everything is so bright it seems like theres a cloud of fog almost and in the night time..most everything is blurry. I know my area so I wing it but I don’t want to be a danger to anyone else so I need to somehow get these professionals to see that I’m serious.

I have noticed that I can now move my eyes up, down, left and right where before I couldn’t because it used to hurt so bad. I still have double vision and because of it I hardly look people in their face when I’m speaking to them. It still get irritated and red. I’m hoping that now that I’ve had the TT that my eyes will settle down (swelling etc). I will be seeing both doctors in two weeks at which point I will discussing surgery to remove the fat and set the eyes back into the sockets. The small improvements lead me to believe that the cold phase is around the corner.

My prayers are with you

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in reply to: 12 days Post TT…now what? #1176602

Thanks for the responses. I really appreciated your story Alexis. Bobbi and Kimberly-thank you as well. I have a better understanding of what to look forward to and at least I know now that my goal will be to become euthyroid.

Quick question if anyone knows: My next appt with my endo is in 2 weeks (no openings until then). I was thinking that I may need to go back on prednisone for a bit as my eyes are still swollen and wondered if my physician can prescribe that for me or do I have to wait to see my specialist?

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in reply to: Apology #1176555

I have been there and I understand. I hope that you feel better soon. My prayers are with you:)

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in reply to: Possible remission? #1176273

Fabulous news!! Giving me hope

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in reply to: Graves and Dating…possible? #1176040

I take it the responders are in relationships, so it might be easier for you both-all the same…Thanks for the information The link was helpful.

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in reply to: Synthroid Recall #1175828

This new information is reason for concern. Some said they wish they never did the RAI due to post struggles-I am in line for a TT. I have a couple months to think because the surgeon is very good and therefore very busy. My surgery is scheduled for March.
Lately I have been so scared to do any kind of procedure and to be really honest, the main reason I am doing it is because of the effect graves has had on my eyes. I have been assured that I will get relief and this will help with the eye surgeries coming up after.:rolleyes:
It sounds like the Synthroid dosage is just as much a guessing game as is Tapazole.
Sometimes I wonder where we get the strength from to deal with all of this-Thank God it’s not terminal but I wouldn’t wish this on my worst enemy! I have lost my way completely since this disease and from what I hear I will probably never live a normal life again. Noone really knows right?
I pray they find a cure

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in reply to: Anxiety Medications, which are best? #1175920

A Suggestion and NOT a referral

Talk your doctor about Cipralex and whether or not it may be the right fit for you. I noticed the side effects were not like effexor-felt like shocks through my body. Cipralex helped me with anxiety but I stopped taking it when I started Tapazole. I still suffer from anxiety and I will be talking to my doctor about restarting the Cipralex

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in reply to: New results…doc couldn’t say it was high or low #1175301

Thans everyone.

I should have mentioned that the family doc who gave me the results said the dosage should be increased. The lb results before this one was normal and that time my dosage was 30gs. Endo decreased it to 10gs and said that the levels almost never stabilized and needs to be tweeked often.
I did call the endo and spoke to the receptionist-told her I was raising the dose and no earlier appt was offered. I will try to call again since I will run out of my prescription before my next scheduled appt.
I meet with another surgeon for a 2nd opinion so with any luck this hell will be over soon.

AsI’ve said several times before and I can’t stress enough that I DO NOT visit this site for medical advice. I visit simply for support, to my share my experience and the occasional venting session:|.

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in reply to: New results…doc couldn’t say it was high or low #1175295

I think I am hyperthyroid also. I met with my family doctor (who doesn’t know jack) and next appt with my endo is 19/12/2012.

They did do a free T-4 and that was 13….

Kimberly, I didnt understand a word of your response because I’m still learning about the T’s. I do have photocopies
In comparison to these results, my lab result in July were:TSH 0.02 Free T3: 22.2 Free T4: 51
In August: No TSH results but Free T3: 5.0 and Free T4: 14

I have been trying to search the internet for what the normal levels should be but I’m still so confused
So I have decided to up my Tapazole from 10g’s to 20g’s per day (the family doctor didn’t suggest anything) and I’ll do more blood work about a week before I see the endo mid December to see if upping the meds made any difference

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in reply to: 18 year old college student #1175122

I am praying for you:) and I pray that you dont get TED…

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in reply to: Flu shot and Graves/TED #1175098

I appreciate EVERYONE’s comment whether you are for the flu shot or not. I know it’s different strokes for different folks but one thing we ALL have in common is this dreadful, very dreadful graves and some of us like me have ted also.
Since I got the flu shot yesterday..I had a headache last night but so far today I’m ok. I do wonder if getting the flu shot will affect my blood work (I also did that yesterday too)

Anyways, until next time

Stay strong everyone-this isn’t an easy battle

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in reply to: Flu shot and Graves/TED #1175092

I got the flu shot this afternoon:o and I will updating how I feel over the next week..
Thanks again for all the responses:)

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