[jaqeinquotation]

in reply to: Radiation Treatment #1181750

Thank you Shirley. I’m not sold on RT either but I figure what do I have to lose. The swelling, bags and double vision are my biggest issues and I can’t wait for relief!

I do have one more question though…Once the double vision was corrected were you able to move your eyes freely again?
Without pain or pressure?

Hanging in there,

jaQe

[jaqeinquotation]

in reply to: Radiation Therapy #1181326

Hi and thanks so much for sharing your experience with me. I met with the radiotherapist yesterday. These appoinments are always tough for me because deep down I am hoping someone will tell me that I don’t have to look like this anymore or at least that I can look better.

I haven’t made a decision yet about the radiotherapy but I figure what do I have to lose? Apparently, it “might” help with the double vision and “might” help with the inability to move my eyes (up, down, left and right). It seems the opthalmalogist and radiotherapist thinks it “may” help and unfortunately if there is any difference I won’t see it for months.

Oh this does wonders for our mental health doesn’t it lol.

[jaqeinquotation]

in reply to: Radiation Therapy #1181324

Thanks very much. I will check out those links

[jaqeinquotation]

in reply to: Prednisone again? #1180604

Thanks for sharing your story. Im so happy and feeling hopeful to hear that you had your surgeries and started to get your look and face back. I pray for this day every chance I get.

There’s a saying, “He who feels it, Knows it”. I’m really hoping that I won’t have to take preds after I’m done tapering of this dose because as you know, it isn’t pretty. And the ways it swells it’s victims etc; the thought of taking them long term messes with me mentally because I know it’s not good for us!

Personally, I would like to hear that I’ve been put on the wait list for surgery and I’m not sure

I won’t know what this next course will be until I see the surgeon again in September. She wont care how my eyes look or feel. Bless her heart she have no bedside manner and she never looks at me. She will base her decision solely from the results of the visual field test I take right before I meet with her that day.

I wish that my Endo and surgeon would share information and ideas but that would be asking for too much.:rolleyes:

[jaqeinquotation]

in reply to: Endo changed dosage, Pharmacy changed brand…… #1180757

Hi Nancy,

I live in Canada.

I re-read my post again too and realized my many typo’s; and to think I read it over several times before clicking submit…..wow.

The pharmacist “was” recommending that I switch to Synthroid.

My levels should have been read like this:

TSH went from 2 to 3.66 (0.35-4.94)
T3 from 3.9 to 3.1 (3.8-6.0)
T4 went from 11 to 10 (8-15)

Take Care,

[jaqeinquotation]

in reply to: Endo changed dosage, Pharmacy changed brand…… #1180755

Just an update:

I went back to the pharmacist this morning and insisted on getting my regular brand of Eltroxin. He said he had never done this before and doesn’t recommend that I switch to the Synthroid brand of Levothyroxin that comes in 125mcg’s.

If that’s the only reason then it’s not worth the risk for me. I’ve read too many real stories from people who switch and end up feeling terrible. I’m not feeling a 100% but I feel better than I did before; my biggest issue right now is this fool named TED.

The pharmacist said that switching wouldn’t affect me in any way. I told him that it was easy for him to say because he isn’t the one taking the meds…….that I am and I prefer to leave well enough alone and try to enjoy the rest of my life so, no changes. He made me sign the actual prescription that not allowing any substitutions was authorized by me.

I left the pharmacy with 100mcg’s of Eltroxin and a pill cutter to make 125mcg’s.

[jaqeinquotation]

in reply to: Switched meds and feel awful :( #1180727

I’m so sorry to hear that you are not feeling well, sorry about the breakup and I hope you feel better soon.

I’m in Canada also and my brand is Eltroxin also. My dose was increased from 100 to 125 mcg’s. i didn’t realize until after that the prescription said “allow substitutions”. Once I did I asked the pharmacy not to make any substitutions however when the pharmacist brought the pills to me they were Synthroid. I told him I wouldn’t take them and showed him a pamphlet I got from http://www.thyroidawareness.com that stressed the importance of the Same medication (brand or generic), Same time in the Same manner everyday.
He still tried to convince me that if I switched I would be better off in case my dosage increases or decreases in the future that Synthroid is more flexible with their doses.

This just happened today so I was really surprised to read your post.
STAND your ground and insist to your doc that you go back to the meds that made you feel better.

[jaqeinquotation]

in reply to: Prednisone again? #1180602

Thanks for the feedback:)

I’m taking them reluctantly. On 15mcg’s this week and then down to 10mcg’s for the next 2 weeks then 5mcg’s.

snelson: you asked which phase I’m in and to be honest with you I’ve never really known how to answer that question because I don’t know what that means.
I haven’t seen anyone else with eyes like mine and they call it severe. I’m not sure if they’ve stopped changing or if I’m just getting used to being ugly lol

For them to be buying time at my expense I’m not sure what good that is doing? Why not just do the surgery?
What I do know is that I’m at work and I can barely see what I’m typing-everything is BLURRY and I’m hoping it will clear up throughout the day but my fear is becoming a reality I may have to leave my job because I can’t see well enough to do it anymore.

Really sad

[jaqeinquotation]

in reply to: Prednisone again? #1180598

“I am wondering if it has been prescribed because there is concern about pressure on your optic nerve. An orbital CT would document that, plus not seeing the color red as clearly, and some other tests that indicate decreasing vision”

I believe this may the cause for the prescription. There is a different when I see red (left vs. right eye). Most recent CT scan showed crowding and pressure on the optic nerve. Visual field test was done also;at first wasn’t good but getting better. As a matter of fact, a visual field test is done every visit.

I’m a bit confused though and I plan to ask this question when I see the surgeon next…if there is pressure and obvious decrease in vision, why not do surgery?
It’s the eager, tired of waiting, tired of looking tired part of me speaking but really it just seems that the longer they wait to do surgery the more damage waiting is going to cause.

Could it be that the prednisone is supposed to make the vision better-attempt salvage what has been affected thus far if you will?
Should it ease the pressure and clear up the blurriness?

Maybe if my next visual test is good she’ll add me to wait list for surgery:/

[jaqeinquotation]

in reply to: Prednisone again? #1180595

Thanks for your response.

The surgeon seemed be to be running behind, which is no excuse. I spent literally 95% of my visit with the resident doctor who was Phenomenal. He too suggested prednisone right before the surgeon came in and reviewed my file for about 7 minutes. She’ll be away until September so I unfortunately I will have to keep my questions until then:|

[jaqeinquotation]

in reply to: New Endo…Maybe not #1178294

Thanks everyone. I appreciate the feedback:)

Kimberly, I have been documenting how I have been feeling and I have a physical booked for the 19th so I will share this with my family physician.

[jaqeinquotation]

in reply to: Free T3 necessary?? #1178242

My endo called me back to tell me that after TT, testing of Free T3 is not necessary but “we could do it if you want”. I told him that it may be better for me to see an Endo that specializes in Graves as opposed to Diabetes and he agreed and wished me well.

I contacted my physicians office and they said that they received the requisition and that it included Free T3.

I just wonder if I require Cytomel how would he know if he doesn’t test for it? And even further, if I require Cytomel would he even prescribe it? Ugghhh

Thanks for the feedback everyone:)

[jaqeinquotation]

in reply to: New Endo…Maybe not #1178292

Does your area have a shortage of Endos?

*susan*[/quote]
No I don’t think so. There are quite a few endo in my area however, the majority specialize in diabetes.

I contacted my physician today and they told me that my endo sent a copy of the requisition and that it did include Free T3. It is possible that me insisting on it finally got through to the Endo.

But it does make me wonder how would he know if I need Cytomel (did I spell it right?) to balance things out if he doesn’t test for it? Something tells me he wouldn’t prescribe it either way and that’s a whole other ball game in itself cause I have not the slightest idea who would prescribe it if my endo refuses.
Anyone know? not asking for medical advice.

I feel ok but there are days when I could just lay around and do absolutely nothing and then my joints get stiff and start to make cracking sounds (anyone else experience the cracking?) and I feel crappy. I feel like if I don’t have anything to do my body just slows down…yikes:o

[jaqeinquotation]

in reply to: how to not obsess about GD and TED – any advice? #1178252

Im thinking of trying meditation and getting back into yoga also. At times, I’m finding it very difficult to control my thoughts. How long will this last? Will I ever look even close to what I used to? The list goes on and on.

I hope neither of you ever experiences TED. Nothing about this auto-immune “distraction” is easy for any of us. We all deal with it in different ways. I think when it starts to change your features…I don’t know but it does something to you. I remember when my eyes first started to change, I cried in the mirror for hours locking myself in my room etc etc… Of course that made them even more red and the pressure behind them….ooh Lord.

18 months later (never thought i’d make it this far) it’s been nothing short of “my mid-life crisis”. And the change has been dramatic!! Especially when I look at my before pictures.

I’m just starting to see the a teeny weeny bit of the ol gal behind the eyes. The thing I obsess about the most is…”could I ever get use to this look?” I don’t think so.

Self-care is key..hard but extremely important-I struggle with it daily but I work in the field that promotes and encourages “caring for oneself” so fortunately I have access to a lot of helpful resources and info (nothing about Graves).

Still I’m gonna have a celebration the night before my first eye surgery.

[jaqeinquotation]

in reply to: Tell the Truth…. #1177884

Your responses helped alot. Thanks to everyone who took the time to reply:)

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