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in reply to: first signs of TED? #1062680

Hi Julie,
As a card-carrying long time TED person, I can tell you from my experience, that I did not have swollen eyelids. As TED developed, it was vision changes, double vision, and swelling behind my eyes where I could not see it, but was manifested by my eyes protruding more.

Bobbi’s explanation of swelling reflects a better description of what it is. Colds and flu are rampant in this country right now. I did just had a really bad cold for the past 10 days, and I did notice that my whole face, plus eyelid was a bit swollen on the side I slept on when I got up in the morning.

It is easy to understand why this is a worry to you, for you have finally gotten your world back. I think you may find that it resolves during the day, and of course, a cold compress will help. You are doing all the right things, and you have a good eye doc who sounds familiar with TED. Don’t worry if you can’t get seen today, for you probably won’t get an "answer" even if you are seen. When we have Graves’, TED can occur anytime afterwards during our lifetime! Take it from one who REALLY knows! I developed TED almost 50 years after I had Graves’. TED happens to a very small percentage of us.
The best to you, do write back with an update.
Shirley

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in reply to: New here #1062748

Hi, Bobbi just wrote a post a few minutes ago saying that a remission to be called that, is at least a year. And you can ask you doc. I have been hoping you would hear from others on the board to share their experiences with remission.
Shirley

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in reply to: Almost remission #1062693

Are you OFF meds now? And waiting to see if you are in remission? Which I presume you mean that your labs (AND YOU) are in normal range. The other word that is associated with remission is recurrence! And this is entirely possible at your stage. Sounds like you have a plan, so move forward to see if it works. Remission, as you know, means an abatement of symptoms. But you still have Graves’, always will ,and it is entirely possible that you may become hyper again.

Your thoughts about this will evolve with time. You can type REMISSION in the search engine, maybe you will hear from more people about this. But as you know, from reading this site, and reading the experiences of others, the general path of Graves’ after diagnosis is to take the ADT’s and beta blockers as you have done, which will help us feel like a human again, and then we are more prepared to consider the three treatment to continue getting well, which, as you know, are ATD’s, Surgery, a thyroidectomy, or RAI.

Most of us have chosen one of these three ways to go, usually with much indecision along the way, and then make a decision on our own personal choice, which is almost always possible to do.
Shirley

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in reply to: Just diagnosed with Graves. #1062702

I know Ski, Bobbi or Kimberly can say it WAY better than I can (on the subject of exercise and generally pushing your body when you are in the middle of being hyper) and I have seen posts on this subject in the past. They will probably respond with a better explanation than the one I am giving you…..

The important thing for you to know right now, is that you are really, really sick, and your whole body is under great stress from being hyper and having too much thyroid hormone. It is not at all surprising that your legs are getting weaker and weaker.

One of the many results of being hyper, is that we lose MUSCLE. We LOSE it! It’s kinda like being super de-conditioned because of being sedentary for a long time, but your illness has done this to you. So I suggest you be as judicious and conservative as you possibly can be, and restrict exercise to a bare minimum, if at all. It’s an investment in your present and future health. You have less than a month until your RAI, so you KNOW you are on your way to getting better with your treatment plan. You can begin to think of getting back in shape and slowly beginning your regular exercise routine by early summer, when you are regulated. Be prepared it takes longer than we like sometimes, like everything about Graves’.

Perhaps your endo does not realize the amount of exercise you are doing. You can check all this out with him, too.
Shirley

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in reply to: EYELID SURGERY, ANYONE???? #1063200

HI Susan, I am 10 days post op upper eyelid procedures. Much different than your experience, for he did both eyes at once. Of course local anesthesia to the operative area, but I was in a "twilight sleep" with propofol, fentanyl and midazolam (Versed) He woke me up several times during the surgery, asked me to blink, etc. I do not remember any of that. My left eyelid was very swollen for a few days, now better. Purpose was to lower my upper lids. Guess I will see final result after muscles heal, about 6-8 weeks.

Did you have lower lids done? The oculofacial eye doc is proposing a SKIN GRAFT from my hard palate!! Not THAT sounds like it would hurt for at least two weeks. Apparently this is "done," and part of the process is to get a retainer to wear while eating and it is healing.

I did talk with one woman here in Seattle who had both lids done, same doc and procedures, and her before/after photos are impressive. My lower lids sag way down, leaving a lot of eye exposed.

I am going to Boston for the Graves’ conference in October of this year. I went to San Diego last year (first time) and just loved it! I think I would like to arrange a 2nd opinion appointment with your doc at Mass. Eye/Ear. My insurance will let me do this, and I would really value a second pair of eyes belonging to a skilled surgeon, looking at my eyes!
Would you provide his contact info?
Thanks, Shirley

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in reply to: Graves and the ovaries #1062737

Hi Stacy, thank you so much for sharing your very interesting history! I am so glad you have a great endo, and are euthyroid.
Also, that you are getting good care and attention by your gyno.

It was so nice of you to write, tell us how you are getting along with Graves’. Probably, sooner or later, your post will be very helpful to someone.

Shirley

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in reply to: Almost remission #1062691

Hey, welcome to a great group of people!
I would love to know a bit more about your experience, when diagnosed, how treated, how do you feel now? not hyper and not hypo, but pretty darn fine? Did you take ATD’s, beta blockers? How did you follow up from there?
I guess you could/should ask your endo about your nodules if you haven’t already. Lots of people have some. Do you know you have them because you had a scan at some point? Kinda sounds like your endo is fine, watching the numbers is fine as long as he knows how you feel and you are keeping posted. It is that combination that matters!
I hope others write to you with their experiences of remission. I don’t think I ever had one.

My story? Got hyper, got treated, got surgery, got euthyroid, became hypo, began Synthroid and I am still on it. Have more frequent lab tests when I recognize hyper or hypo symptoms, otherwise once a year.
I now have had TED for two years, would not wish it on ANYONE!!!

I’m sure others will chime in with their stories, look forward to hearing more about yourself.
Shirley

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in reply to: TED and reading…. #1062706

OH! I’m sorry, and I am guilty! i will be surer to write brief paragraphs. I completely understand. I don’t know how to make the font bigger, or I would.
Shirley

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in reply to: DRIVING AND TED #1063053

Hi, I just read YOUR post. Already sent a PM. I think I may have gotten the doctors out of order in my response. Sorry. I was so anxious to give you some hope, and let you know that I have gone the same hellish path with TEd, and that I understand.

It was the one doc who said that surgeries would/will/can help you, and I was hoping to give YOU hope by sharing my experience. I totally understand agree with you about the confusion. conflicting information, and the increasing amount of doubt and stress when you hear this mess of information and misinformation from different docs. Especially the one who said,
"just shut one eye." That is downright cruel.

Hope our communication lines are up. If they aren’t, let me know…. We’ll fix it.
Shirley

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in reply to: Physical and Pyschological effects of GD/TED #1062711

Please write to me on this post or by PM to ask me my experience with TED. I think it would be really helpful to you. I have had the most severe of everything relating to TED. In the past year, I have had four surgeries (one last week) and probably will have one more.
I am SO GRATEFUL for the surgeries. I can tell you all about it, why I had them, what it was like. If you have TED, I would like you to be seeing a neuro-ophthamologist. This needs to happen so that your visual fields, and your optic nerves are carefully checked. If you have double vision, which has been my personal hell for two years, the eye muscle surgery, strabismus surgery, has CHANGED MY LIFE for the better!
Shirley

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in reply to: Just diagnosed with Graves. #1062700

Hi, I am not sure if have been seen by an endocrinologist. It will help you get an appointment if you are either referred, with your labs and history faxed to them by you or your doc who drew the labs- Also, if you can "ask around" or your doc will "ask around his/her community, and provide a couple of names of endos who see Graves’ patients and are interested in thyroid disorders, it will be helpful. I say this because many endos have a practice full of diabetics, for there are so many of them these days.

As Ski said, unfortunately your path to getting a diagnosis is all too familiar. The good news is that you do have the diagnosis, and that is step #1 to getting healthy again. And that means beginning treatment asap. When I was hyper, I was SO WIRED, yet tired. I slept poorly. I was anxious. I was a pain in the butt to everyone. I was impatient. I was defensive.
My heart was RACING! Not a good thing for a heart to do! When I held my harms out, I had a tremor (another typical sign of hyper) I was HOT all the time. I was compulsively hungry. I was misdiagnosed for a long time, like you. It was pure hell.
Nobody understood. It DID help me (when i felt better, after beginning anti-thyroid drugs (ATD’S) to realize that before it happened to ME, I was most probably one of those other people who did not/could not UNDERSTAND someone who had Graves’. It would probably help for your family and friends to read what we say in our posts to you.

Not sure how much reading you may have done yet. There are good and reliable references on this site. There is a lot of crap on the internet.

As Ski said, everything takes way too much time. So true. But the sooner you being this path, the sooner you will go through all these steps back to being LIKE YOU KNOW YOU REALLY ARE! So-see the endo, you will probably be prescribed an ATD and a beta blocker (to control a fast heart rate if you have one.) In a couple weeks, or a fairly short period of time, you WILL begin to feel better. The dose may or may not need to be tweaked a bit, depending on how you feel.

When you get out of the hyper state, you will have three choices of treatment options, (and there is plenty of time for you to learn about this,) it will be helpful for you to use our search option to read about the choices, which are:
RAI (radioactive iodine) ATD’s, or surgery, a thyroidectomy. All are good, and all of us make our personal choice, depending on what we want. In certain circumstances, there are reasons and variables which make one treatment more appropriate than the others, but this is in your future, and you want to deal with the NOW!!

If you go skiing, take it easy, your body is under a huge amount of stress right now, physiologically, it really is! It just doesn’t respectably show like a big cast on your leg!
Do write again
Shirley

You will love this bulletin board, for all of us UNDERSTAND, we have been there, had the same experience you are having right now, and have slugged (or are beginning to slug) our way back to our "old selves."

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in reply to: oh anxiety…you just love popping up all the time! #1062730

Hi lammie,
Kimberly’s thoughts pretty much echo mine. I am sure hoping that with each passing day, this dump of thyroid hormone goes away, and that hyPER symptoms you are having now disappear with it, and the whole darn thing becomes a non-issue!

If the bowel thing doesn’t go away when you are not hyper anymore, then your idea of trying to figure out which foods, if any, fight with your GI tract, and either eat less of them of be very judicious about eating them, is a good plan.

I think you will be very happy, and revert to your "old self" as you get yourself regulated on thyroid hormone. Remember, everything about this darn Graves’ takes much longer that we want it to take to get where we want to be!!!
Best, Shirley

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in reply to: Graves and Hashimoto’s #1062716

Hi, I am writing primarily to tell you I am so sorry that you are feeling so crappy. OF COURSE you want your life back! This is really hard for you. I am so glad you went to a neurologist.
Do write back when you get your MRI report back. Even if it is ok, the fact is that you have a ton of symptoms you don’t want.
It’s challenging enough to have Graves’ and Hashi. I hope the neurologist takes the time to get a good history, and you get to some good answers. I know this is probably not uppermost in your mind, but if you have an extreme Vitamin D deficiency, this does need to be addressed, as you GP advised. It can also be associated with other diseases, but you can check with your doc on that, probably not an issue.

But your symptoms are impacting your life style and your health, so I hope you can doggedly continue to get a compassionate physician to figure out what is going on with you. In your case, with your labs in acceptable ranges, and not all your symptoms associated with either hyper or hypo anyway, I am hoping along with you that an diagnosis and appropriate treatment, will get you back on track.

I totally understand that you want your life back. And I believe you will get it!
I have been in the same position as you are not, but for different reasons and different symptoms! Shirley

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in reply to: Do you understand me? #1062790

Agree with Ski. how ya doing?

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in reply to: EYELID SURGERY POST OP #1062810

I have to be patient. It hs been a wek tomorrow, and there still is a lot of swelling. I have no idea of the result for that reason. Like everything related to Graves’, I need to call on the "tincture of time" phrase to feel better. Thanks so much for asking. I (and everyone) have missed you!

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