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in reply to: orbital decompression #1169719
Dear Hope,
What a story. Reading it brought tears to my eyes (or should I say more tears since thanks to TED my eyes tear constantly). I really loved your comment about adversity and how it sweetens your life. This TED stuff is absolutely awful – physically, emotionally, professionally and socially. It sounds like you have embraced life and decided to take it one chunk at a time. This is the point I am at in my own life with this disease. I am a hospice nurse, and so I have seen how bad it can really get. When my friends tell me that they are praying that my TED will go away, I ask them to pray for acceptance instead. My life has been wonderful and I believe it will continue to be so. I have a new normal now and it is OK. The truth is we are not these physical bodies, these swollen and teary eyes. We are much more then that and these are the eyes through which we get to see this beautiful world. All the more reason to take good care of them.
Hope! what a beautiful name. Today I really needed to hear what you had to say. Thank you.
Pattiin reply to: A Cyclist’s Two Days until TT #1179306Hi there. I cannot address your surgery fears (I had RAI 2 years ago) but will tell you that I, like you, am an avid cyclist. 8 years ago I rode cross country and usually log an average of 3000-3500 miles/ year. By the time I was diagnosed with Graves, I was so sick that I could barely walk up a flight of stairs. I wondered if I would ever be able to ride again. The good news is that last year I rode 3200 miles and am working towards similar miles this year. As other people on this forum will tell you, the thyroid hormone replacement you will take is exactly the same as the hormone your body makes, and once you find the right level for you, you will be able to do everything you used to do.
I hope your surgery goes smoothly and that you are back on the bike real soon!
Oh Shirley, I am so sorry to hear this. As the others have said, you are such a source of strength and knowledge for all of us. And I feel like you and I have so much in common (both nurses, both have the gift (NOT) of TED). I sure hope it is transitory. Keep us posted, we are all pulling for you.
in reply to: New problems with eyes #1175172Hi guys,
One more comment about the eye taping at night – I found these eye “bandages” at CVS that look like regular bandages but they conform to the shape of the eye and its socket and they fit really well; they provide a good seal and they stay on whether I lay on my back or my side. Shirley, don’t know how much the tape you suggested cost, but these bandages are relatively inexpensive and I find I can get 2 nights out of them. So for me, the bandages have been working. I just started covering my eyes 2 weeks ago and boy what a difference in my eye symptoms, both during the night and upon waking. I really resisted it for awhile ,the first few nights I had a good cry before I put them on, and now it is second nature. Isn’t it amazing how we make adjustments where we have to and just keep on going? a testimony to the strength of the human spirit.
Pattiin reply to: New problems with eyes #1175167Sasha,
I am so sorry to hear of your difficulties. I can sense the anxiety you have about your job and the fact that while this awful disease runs its course you have to get up and go to work every day! I developed TED last summer and had bilateral lid surgery in April of this year since my eyes had pretty much swollen shut. The neuro-opthomalogist who did the surgery said I was in the “cold” phase and that surgery was appropriate. Well, 8 months out, my lids are still swollen, I have developed double vision and my eyes can hardly move. Obviously (to me) the surgery was premature. This same surgeon is now quick to do an OD. I got a 2nd opinion and this 2nd doc is awesome. He says the disease is NOT in remission and that, unless my optic nerve is at risk (which it is not), we should do our best to treat the symptoms and save the surgery as a last resort. He put me on a 4 week course of steroids which has improved things significantly.
I wanted to respond specifically to your question about eye exercises. My lids are no longer closing after the lid surgery; I am taping them shut at night and it really helps with the dryness. But what I do every morning before work is, I spend 20-30 minutes doing mindfulness meditation; listening to beautiful music, breathing, and part of the time I do a gentle massage around my eyes, focusing on the lower lids to gently stretch them, and a gentle massage of the tops and corners of my eyes. VERY gentle. I have no idea if it is “helping” or not. What it has helped is my spirit and my heart. It has calmed me and helped me to start the day with a positive open heart. I just started a new job and the stress is SO bad for our eyes! so I do this for myself every morning and it has made a world of difference in my anxiety about the future and how this disease will run its course.
So I offer this suggestion to you, and hope you know you are not alone in this trial . This site is such a gift to those of us who struggle with TED.
Pattiin reply to: Graves Eye Disease TED Decompression question #1175070To gatorgirly, bondgirl and Shirley,
I have been following your OD discussion since I will more then likely be needing one at some point. Diagnosed with Graves in 2/11, had RAI then developed Ted in fall of 2011. Started with lid swelling (upper and lower) along with terrible dryness and redness. Had bilateral blepharoplasty in April of this year and thought my TED party was over. Oh how wrong I was. I now have lower lid retraction as a result of the lid surgery and my eyes don’t close properly. I have alot of swelling in both eyes, double vision, high intraocular pressure on upward gaze and awful pain and stiffness, along with sensitivity to light. Just started an oral steroid regimen to see if the swelling comes down (it has helped a little) and an MRI on Tuesday of the orbits to see what the muscles look like. I have tried to stay positive (just started a new job and am so stressed out) but when the doc said the words orbital decompression my heart just sunk – those were the 2 words I never wanted to hear. I guess I need some moral support from my TED sisters to help me be positive and not too frightened of what may be ahead. Gatorgirly you said the OD was the best thing you did. That was very comforting to hear. I can’t tell you how much it means to know others out there are struggling with this awful disease and understand what it’s like.
Pattiin reply to: Radioactive Scan Results #1061335Hi there! I had RAI on February 25th of this year. I was given 28 mcl (I believe that is the abbreviation for millicuries).
My 24 hr uptake was 48%. From what my endo told me (this is the 2nd one I have seen, the 1st one who sent me for RAI retired right after that), 28 is on the high end of RAI dosage.
I had a sore throat for about 3 weeks after the RAI. Also, as anticipated, my hyper symptoms got worse about 3-4 weeks after the RAI, I felt pretty awful for about a month until the stored thyroid hormone was completely dissipated.
After that, my hyper symptoms gradually disappeared. I have had some eye puffiness for the last few months but my vision is normal. On May 21st, I was officially hypo and started on 75 mcg of Synthroid. All in all, I am feeling pretty good. I NEVER want to feel those hyper symptoms again.
Good luck to you! this forum is a great place to find helpful information from people who have been thru the same things you are experiencing.in reply to: Newly diagnosed – took RAI today #1061411Hi there! Just wanted to drop a quick note with my thoughts on the RAI process. On 2/21 I had RAI. By the middle of May I was officially hypo and started on 75 mcg of Synthroid. The endo’s plan for me is to have blood work every 8 weeks and tweak the Synthroid until I find the sweet spot. My first blood work post Synthroid will be middle of July.
All in all, I am feeling great! Compared to the hyper madness of Graves, I am exponentially better. I am back to work full time, riding my bike to work, going to the gym every day. I am definitely tired at the end of the day, but I will trade a little fatigue any day for the awful anxiety, tremors, muscle weakness, emotional misery of Graves.
I’ve had some eye puffiness but my eye doctor tells me the eyes are fine, the swelling is part of the thryoid stabilization and should settle down.
Back in January I thought my life was over. Well I was wrong!! I am taking it one day at a time, and I learned some great lessons thru all of this – that I have friends and family that love and care for me, that if I say No to things it isn’t the end of the world, and that I needed to slow down the pace a bit. I am convinced that my stressful lifestyle was the trigger for the Grave’s.Comment about your road trip – after the RAI I actually felt worse instead of better for a few weeks. So you may want to be aware of the possibility that your symptoms could worsen while you are visiting Michigan. I would check with your doctor to see what he/she thinks. I know that I was pretty sick and couldn’t have done any long distance driving .
I hope your recovery goes smoothly…this website has been such a blessing! I have learned so much from everyone and it feels comforting to know that I am not alone in this.
in reply to: I chose RAI Treatment #1061693Hi SuperDave,
As many of the facilitators on this board will say, everyone’s journey will be slightly different. I was moved to respond to your post because so many of us have been where you are in the process and really empathize.
I had RAI on 2/25 of this year. As Bobbi indicated, my symptoms got worse before they got better. The heart palps were the worst. I did not start to feel "better" until about 7-8 weeks after treatment (better meaning heart palpitations were lessened, tremors gone, brain fog clearer, anxiety lessened, and able to get thru a conversation without balling like a baby).
It took about 2 months for my thryoid levels to get into normal range. And last week I became officially hypo and started on 75 mcg of Synthroid, to be tested again in 6 weeks. My eyes have been quite puffy but I had a full eye exam and the vision and muscles are fine. I use eye drops and warm compresses both of which really help.
You will start to feel better, it’s just that it will take more time then you’d like…and it happens gradually, you don’t just wake up one day and jump for joy. But I am back to going to the gym every day, riding my bike to work, going out to eat with friends, and able to enjoy the beautiful spring. In the throes of this disease, I thought I would never smile again.
Now that I am hypo I am a little bit more tired then usual so I am pacing myself.
So it will get better, but don’t panic about the worsening symptoms because , as Bobbi said, the thyroid is dying off and releasing all the stored hormone.
Take care of yourself, and looking forward to hearing that you too are feeling better!in reply to: TED post RAI #1061893I took your advice, called the neuro-opthamologist and will see her on Wednesday…thanks!
in reply to: New and have many questions #1062157Hi there – I was diagnosed with GD in early Jan 2011 and had RAI on 2/25…the symptoms that got me to the doctor were an awful itch that was a total body itch and was unbearable. Yes, I was having heart palpitations, insomnia, anxiety, muscle weakness but the itching was the worst. Anyway, when the labs came back and my thyroid levels were off, the doc kept saying "your itching as nothing to do with the thyroid". The endo says the same thing…NOT TRUE!! I am 7 weeks out from RAI and my HR is starting to normalize, my anxiety is much better, i am feeling like I have a little more energy, and best of all the itching is almost gone!! So I definitely think there is a correlation with the itching and Graves…just wanted to chime in ….Good luck to you!!
in reply to: Looking for endo in buffalo/test results #1062307Hi Ken,
I am not trained to interpret lab results but I live in Rochester NY and have the names of 2-3 really good endos if you want a referral. I can’t imagine that there aren’t some good endos in Buffalo. Hopefully other folks online will respond. If you want the Rochester names email me at patriciamegerle@frontiernet.netin reply to: 4 weeks post RAI and still hyper #1062371Good morning, thanks for your response. I was not on any thyroid medication prior to my RAI on 2/25. I had started tapazole in January but the doctor took me off because my WBC dropped lower then normal. That is why I did the RAI.
Now since my bloodwork 4 weeks post RAI shows that I am still hyper my endo wants me back on tapazole..this was my question, have other people had this experience?in reply to: Post RAI and having changing symptoms #1062383Thank you Bobbi! I appreciate the feedback and the reinforcement that this disease is a process and that I will always be disappointed if I am looking for an instant fix. Per your suggestion on needing blood work (I am at the 4 week post RAI point), my endo sent me for blood work on Friday 3/25 and has me going for blood work again in 2 weeks, right before my follow up visit. So I think I am getting checked at the appropriate time. And your comment on anxiety is very interesting. Since I have always associated the anxiety with GD, I haven’t considered that it could be a symptom of a change in hormone levels.
I am still coming to grips with this disease, I just don’t have my mojo like I used to…
This site is so helpful…it means alot to hear how other people are dealing with GD and especially to hear that people are leading happy healthy lives! I’ve stopped surfing the web (a real bummer), this site is the only place I read about GD.
Take care everyone!in reply to: 2 weeks post RAI and still itching #1062506Thanks for the tip..I will give the oil a try…my doctor has tried a number of different antihistamines. She also gave me a script for lorazapem for anxiety. Last night I took 25 mg of Benadryl and the .5 mg lorazepam before bed and my itching was minimal. I see the endo this Thursday 3/17 for my 1st appt after the RAI, I am hoping that as my levels come down the itching will get better.
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