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in reply to: I found a great endo! #1181242
Congrats Kalty! So far I’ve yet to see an endo that doesn’t look at me sidewise when I bring in my Big Thyroid Folder with all my test results.
in reply to: How many have had proptosis reverse naturally? #1181203Thanks Ski, I’m glad you experienced improvement, but whew 5-6 years is a long time. But you are right surgery itself could add more problems than it fixes at this point for me. So I will stay in wait and see mode.
Thanks for your reply too Geezer. How long did you have eye issues and how long did it take to improve?
in reply to: Well, here goes! #1173643Hi AZGravesGuy! So sorry to hear about the loss of insurance – I wonder if the Obamacare laws coming into effect in 2014 will be able to help you? I know that a lot is supposed to change just not sure what. I’m glad you are feeling great symptom-wise, but if you are puffing up like a marshmallow odds are you are trending hypo better to nip that in the bud. Maybe if those endo offices knew you were about to lose your insurance they would get you in faster?
in reply to: How many have had proptosis reverse naturally? #1181199Christina, I sure hope things can reverse for you too. Swelling seems like something that could/should resolve. One hopes! My thyroid levels of have been pretty stable for a year now though my methimazole dose keeps changing.
Kimberly, I was hoping you’d weigh in, and that you’d tell me of the legions of people where it all went back to normal. Even some improvement would be nice. I think what stands out the most for me is not the proptosis itself but how it makes the eyelids sit and where the crease is different on the bigger eye. The first time they measured it the doc said oh it could have always been like that and I’m like “um, no” while restraining myself from hitting him because he minimized and discounted everything.
Shirley, thanks for not calling me a wimp! I know you are a true warrior with the TED. Did any of your many eye docs advise you to wait at any point in the hopes of positive change?
in reply to: Flu Shots? #1181175Me – I won’t get one, it’s an unacceptable risk to me because I know I have Graves and TED which are mild but still active in me with significant antibody counts – the last thing I need is for my immune system to be stimulated further. Most vaccines have adjuvants in them – which are agents that enhance the immune response to the vaccine creating more antibodies. I can’t imagine wanting that because that immune enhancement would extend to everything not just the vaccine.
And like Sue, my first real noticeable dive into autoimmune problems (hypothyroidism) and Raynaud’s was shortly after getting a DPT vaccine – the first vaccine of any kind that I had had in many many years.
in reply to: How many have had proptosis reverse naturally? #118119535 views and no replies….does this mean it hasn’t reversed for anyone here or people are saying 2mm, get outta here ya wimp!
My first real suspicion was about three months before the critical time. I was gaining weight, eating constantly and was also constantly active. I felt strange off-kilter and didn’t understand why I wasn’t losing weight since I was being insanely active. My mother has Graves also and gained weight with it. Lucky us.
At the onset my heart was racing beating hard for no reason that I could tell. I felt jumpy with my mind just racing about. I went to the doctor and asked about panic attacks but also my thyroid as I always am suspicious of it. Turns out that was it after all. I had had many other weird little symptoms that I blamed on other things as well, but it was feeling crazy – oh and the hand tremors and heart stuff that really did it.
Good luck to you, sounds like you’ve been through enough thyroid hell for one lifetime already!
in reply to: Feeling OK but Looking Horrible #1180846SueAndHerZoo wrote:On my way to go order some – thank you!
SueI hope it works out for you – let us know!
in reply to: Feeling OK but Looking Horrible #1180844Yes Sue, let’s put our Congressmen to work!!! This disease is entirely unreasonable and clearly must have regulations and oversight to keep it from claiming symptoms from other diseases in an out of control manner.
Just writing an update, so I’ve been using the Azulene cream for a few days now and it is helpful with the under eye shadowing. Now this is shadowing I’ve always had any way and isn’t related to Graves’, but I have to say it does a good job. The skin tone in that area is almost now the same as on the rest of my face which is actually pretty new for me. It doesn’t touch the mysterious melasma like issue on the upper eyelids, but I like what it does for the dark circles anyway. It’s made by Earth Science for those interested and is blue!
in reply to: Puffy eyelids since july #1181048Hi Shakira, I can relate to the eye stuff too – for me the first swelling appeared when my thyroid levels neared the bottom of the range. Whenever they move up a little, the swelling gets better though it’s never been fully gone. It is indeed frustrating to have the illness be so visible to others. At this point my eyes are mismatched, slight proptosis on one eye and mismatched swelling too. Guess I’ll have to give up on the modeling contract, lol. It helps me a lot to read the stories of others on this board battling serious TED to keep perspective and I’m always inspired at how courageous they are.
Maybe some day I’d like to be a warrior, but it seems like each time I think I’m finally done and remission is in sight things go wonky again. I have a feeling I’ll be fighting this battle for quite a while. Great idea though and good for those who’ve signed up!
in reply to: Is it or isn’t it? #1180895Great news about the sleep and no hallucinations!!!
in reply to: Biopsy this Monday. Completely overwhelmed…. #1180751Hi Shaunak, you likely experienced what’s called an ocular migraine. I got some of those too when my thyroid levels were initially falling on ATD’s. It’s harmless, but just don’t try to drive while it’s going on because it can expand to fill up a lot of the visual field. I’m glad your results were benign!
in reply to: Is it or isn’t it? #1180892Wow that is very hypo! I start feeling bad at FT4 of 1.0 like I can barely function and have joint pain, with 0.4 I’m amazed you feel okay. At least your high TSH matches so there will be no doubt over what to do. I hope your doctors can make adjustments right away for you so you can feel better.
in reply to: Feeling OK but Looking Horrible #1180842LOL Sue! Yes, we’ve got to get some usefulness out of all this! I’m glad you feel you are looking better today. So today I took extra care to use more foundation over the areas and people did react to me more normally. So now I’m left to wonder….did it make that big a difference or was I acting different??? Hmmmm. I got the azulene creme, so I’ll update you guys on my results.
Thanks Laurel, you might be right! I looked up pics of it and the shade of color change is about right though I don’t have definite edges between the discolored and normal areas. I have put less of my lotion with sunscreen and foundation around my eyes since GD started because of fear of irritating them as I have mild TED, so out of my whole face the skin around my eyes probably DOES get the most sun exposure. Not smart I know…time to look into eye friendly sunscreens.
I found “The incidence of melasma also increases in patients with thyroid disease. It is thought that the overproduction of melanocyte-stimulating hormone (MSH) brought on by stress can cause outbreaks of this condition. ” on Wikipedia. Graves the gift that keeps on giving…
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