I feel that I have at least partially exhausted most things thyroid for me. I’m considering starting a new blog for my day-to-day mommy-come-lately stories, but I put the question to you….would you rather I keep thyroidinfo the way it is, with mostly thyroid info and commentary…..or should I branch out from here to post more day to day thoughts?
thyroid disease is a forever kind of thing for most of us. there’s always info to get out there to people, but i say if you feel like you’d rather talk about daily life things, then do it. there are plenty of us who still talk about thyroid too much lol i have separate blogs for everything. at one time i had 7 blogs lol i condensed to 5 one i have a co-blogger. i’m thinking i may have to condense again cos i never seem to have enough time hehe
Hi Beth,
thankyou for the very helpful blog and information!
Beth may I ask you what type of orbital decompression did you have and how much did your eyes retroplace?
I too have TED with mild proptosis and one eye is more effected than the other… my right eye is 2mm more protruding than my left and am hoping that with orbital decompression this difference can me minimized.
I have had these eye changes about 6 years ago however my blood tests always remained in normal range. The CT scan has shown muscle thickening and I have slight puffiness under my eyes and the skin is quite lax and am only 24 years.
Thanks a lot
Lo;
Welcome to the club none of us ever wanted to join! I had what I believe is called single incision 3 wall orbital decompression surgery. I would definitely do it again, and I wish you all the luck in the world….24 is quite young, but not at all unusual.
My eyes protruded 22 millimeters, and I was able to reduce this by 20 mm. Do your research, and find the best surgeon your insurance allows.
It’s a long haul back to normal once you undergo this surgery (I’m still numb, and I’m just starting to have double vision…) But, I would still do it all again…
Good luck, and keep in touch!!
Oh, where do I start? I am planning on having hte surgery sometime this summer and I have very good and very bad things about it. I am scared but really wanting to get it as it is the one thing that still makes me feel like a “sick person”. My eyes are at 24mm and the doc hopes to get mt to 20. Any words of encouragement? Anything…
You are great at expressing yourself. Honestly, I wish that I had this to draw off of when I had mine done but I had my decompression before you did, I think. Mine was in June of 08. I have since had muscle surgery and I am due for more muscle surgery and then eye lid reconstruction. (I STILL have double vision grr) Keeping two blogs can be taxing, but I think this is a great resource for people going through it for the 1st time and you’re right…when I was first diagnosed and started looking up pics on the net, I was FREAKED OUT!!! haha!
Just my 2 cents!
I would say….start a new blog and be sure to link it to this so others can keep reading about you minus the fugly eye problem (wow my husband would have been smacked silly if he said that to me. The closest he has gotten is singing “she;s the one eye love” to me lol) With 4 kids myself, I know how much goes on in mommyland. If it weren’t such a great blog about the TED I would say just change it up, but I think you could really help some people here
I just want to say thank you for this blog – I just recently had my mother tell me I had an eye drooping a few weeks ago and (long story short) that has led to my self-diagnosis of thyroid problems and reading your story is like reading my own. I am going to the doctor next week to request blood tests and let him “have a look” so to speak so hopefully everything will go well. As vain as it sounds, I am most worried about my bulging eye! But I have not seen anyone else talking about Graves like you’re talking about it. I am even toying with the idea of starting a blog about my “journey” since there’s such a deficit of information on it.
And to answer your question, I think perhaps a separate blog for everyday stuff. This has held such a wealth of information on it about thyroid (even without updating often) that I’m sure people will come across it often. Perhaps you could link the two up but keep them separate (where readers could easily navigate between one or the other)?
Hi there i have had ted for over 2 years now i am really thinking surgery is the only way to go. I am so scared i am form Ireland and 27 years old
(((((Claire)))))
I know…the surgery can seem scary. But, as long as you have faith in your doctors, there really is nothing to be scared about. Read through this blog and read other’s experiences and I’m hoping that will give you some peace. If I had to do it all over again, I would. Hang in there!!
Hi again, it has been awhile. I have thanked you many times and continue to thank you for your blog it has been a huge help to me, and obviously many many others. I am now on a waiting list (4months) to have the OD. You mentioned that you had some double vision is that gone now? I have had double vision for over a year and a half, my left I is crossed (scar tissue from TED). That surgery will be done 9 mnths or so after the OD. How long were you not able to see out the eye after the OD?? I am having both eyes done at the same time and I saw that you had your’s done 2 weeks apart.
Sarah
Sarah;
Thanks for your kinds words of encouragement. I am still battling with facial numbness, and I still have some double vision in my right eye. I did NOT have double vision before my surgery, so I think this was a factor of the OD…but I would do it all again, if you were to ask. I’m happy to not look like Kermit the Frog (not that there is anything wrong with looking like him, btw!! )<<just not a good look on me!! LOL!
Please don’t change this blog yet. I just found your blog and I need to hear from real people like your self to help me along with this yucky eye problem. I just had radio active iodine in Jan 09 and it backfired big time. They are thinking to cut my thyroid out since it gave me double vision on my outer glances and my eyes moved 2 extra mil. out in just 2 weeks with lid retraction too. Before that they were at 19 and 20 from 12 years ago. So it would really be great if you kept this blog
.
Shelly;
Hugs to you and your beautiful bug eyes!! I”m so sorry that the RAI therapy seems to have backfired. That is one thing the Docs don’t really want to tell you upfront. Either that, or they minimize the risks.
((((MOLLIE))))
You are definately in a metamorphasis, from what I can tell of your blog….what a beautiful butterfly you will soon be (funny because the thyroid gland is often thought of as a butterfly!)
Because you’ve already had some extensive facial surgery done, you are at an advantage. Read my blogs, and be sure to take Arnica Montana and Bromelain (papaya enzyme) in large doses starting at least a week before surgery. You can get both of these from Boiron at most healthy grocery stores. I also highly reccommend taking MonaVie Active (with acai and high in antioxidents…you can order it here: http://www.mymonavie.com/PDX ) My doctors were amazed with my quick healing and improvement, and I think these three things made all the difference.
I’m not going to lie…the surgery sucks….but only for a couple of days, and then it’s all managable. If I had to do it again, I’d do it in the fall, when the kids are in school and the sunshine isn’t so tempting…..
But come back and tell us all how you are doing. Enquiring minds want to know!! Good luck, and God Bless!! You are going to be so glad you did this!!