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in reply to: eye muscle surgery #1067217
Sure glad to help. The surgery is called strabismus. It is usually done by a pediatric eye surgeon. They have more experience.
I have had 5 strabismus surgeries over three hot phases of my eye disease. As you said you are put under a general and the eye muscle is exposed and a slip knot is put in, then the eye muscle is cut.
Then you are let to awaken and taken to the doctor’s office where you are normally seen to adjust the eyes. It is really simple, pain free and kind of amazing. The doctor will adjust the knot until the double vision is gone. The knot is tightened and clipped. That is it. Really simple.
I fretted over it like mad until I had the first one. It was cool to watch the double vision go away and then when the doctor tied the knot the double vision was GONE.
Recovery was even easier. I put in eye drops every two hours. Used frozen peas for an icepack and the discomfort from the tiny incision was only about two days. Do a search on strabismus to see more on the surgery.
Always glad to answer eye surgery questions. Dianne, Nancy and I have had just about any eye surgery in the books for Thyroid Eye Disease (TED) so any one of us can help to answer your questions.
The second part of your question on "Does the thyroid die off and is it still part of you," answer is:
The RAI is designed to kill off the thyroid either in total or to leave a part of it functioning. If you receive a small dose some of the thyroid will stay alive and active producing hormone.
If you receive a larger dose, then the thyroid is killed off and will decrease in size due to atrophy. It will never go away, it will simply be non-functional.
Example, I had RAI. Later I had to have two parathyroid removed, (NOT related to Graves’ disease) I asked the surgeon to remove any remaining thyroid in there since I was to be opened up anyway.
After the surgery the surgeon told me the remaining thyroid had atrophied ( shrunk) to the point it was not worth the bother to removed the dead tissue, it was causing no harm so it was left in.
This is the reason we go on replacement hormone to give our bodies the hormone that the thyroid used to provide. I hope this helped to answer your question.
in reply to: Last nights fight… #1067636We all understand only too well. Because we do not look sick our loved ones often do not understand how we feel. I once had a man call me about his wife demanding that I tell her to get off her butt and get the housework done.
Once I talked to him and her he had a better understanding of what his wife was going through. It is hard on our spouses and children. Would your husbadn be willing to come to this site and read about the disease? If not find a good counserler that deals with chronic illness and you both go to talk about what is happening to you.
Often it is the loved one’s way of dealing with the disease, to back away and not try to understand. They are scared they will lose you and withdrawing is the response. Try to tell him as best you can that you simply cannot do those chores at the moment until you feel better. It may help.
It is a learning experience when we cannot do what we once could, but when you get treatment and get to feeling better things will improve in how you feel and what you can do.
But talking is the key. Talk to him, tell him your fears and find out what his are. Open communication will help things. If your husband will not go to counseling with you, go alone. It helps to talk to someone about this.
We are only a click away.
in reply to: H1N1 vaccination #1067924I got my flu shot two weeks ago. I will get the HiN1 shot as soon as I can.
I am a big advocate of vacinations. They saved my life. I had three polio vacinations when I was a kid. I got caught in the polio epidemic of 1959. Because I had the vacinations I got better. I was paralyzed from the waist down for over a year and took a long time to get back to normal.
Had I not had the shots I know I would still be paralyzed to this day. All the other kids on my street caught Polio except for my brothers and sister. They too were vacinated. All the kids who were not never regained movement from polio.
Yes Indeed I will take my shot as soon as it is available.
in reply to: Radiotherapy update-TED and getting zapped! #1068025Hi and welcome to the board,
I had the orbital radiation almost 8 years ago now I think. I did not have to wear a mask, but other than that your treatment sounds a great deal like mine.
My eyes have not bothered me much since the orbital radiation. I am glad you are appearing to have a good outcome. I too, got tired after the treatment buy like you I felt better as each day went on.
Thanks for sharing your story.
It was great Sue. Yes we do make life long friends on this site. Jan and I were even in the wedding of a poster here when they got married in Canada. So you see, we do find those who we can talk to about Graves’ who understand and it is always great to meet them in person. If you can try to make it to the conference this year.
You will be amazed at the family feel and the friends you will make.
Actually you are not along in having problems with the replacment hormone. Most people are not allergic to the drug but have problems with the fillers that make the pill. The medication is identical to what our body produces that may be why your doctor says it can’t be the pill.
But it can be the fillers that make the pill. If you do have that problem there are makers of the drug that make them with different fillers to stop that problem.
As for the full lips? You saved money on shots to make your lips fuller. Bonus, LOL.
Really get with your doctor and see what he has to say. The .50 dose is the one with the fewest fillers and colors added to make the pill. Let us know how you make out witht he doctor and the pills.
We are only a click away.
in reply to: Newbie with a couple of questions #1068260Sorry no one has answered your questions yet.
To answer a few of your questions. Once we have Graves’ disease we have it for life. Now that you have had the RAI and will probably go hypothyroid you will have to take replacement hormones for life. But that is not too bad. A full 90% of folks get treatment and go on to live perfectly normal lives. But you still have the antibodies so you will still have Graves’ disease.
As hard as it is to wait to feel better we must remember we did not get sick overnight so we do not feel better overnight. I have so, been where you are now. Sick and tired of being sick and tired. But that too will get better with time.
The eye puffiness needs to be followed by a good eye doctor. If you have not done so, you need to be followed by an eye doctor for a good long time. Your first visit will establish your eye baseline. From that point on your eye doctor can see any changes you may have.
If you had the RAI without steroids, you run about a 20% chance of temporary worsening of the eye symptoms. Many of us with Graves’ disease get a second autoimmune disease called Thyroid Eye Disease (TED). Following up with an eye doctor is a great thing to do so they can see if you start to get problems with TED. There are thousands of posts in the archives you can search on for more information.
Time is on our side. You will get better with time. I had many eye and thyroid problems when first diagnosed. I have had Graves’ now for almost 15 years and my life is very good. Still have some short term memory issues but we learn to live with that and compensate for it a great deal.
Fifteen years later I am still working full time, became a published author, travel the world and the states and life is indeed good.
We are always only one click away to answer any of your questions.
in reply to: Having a bad day- need cheering up #1068850I remember those days. They will soon be a memory. You need to use an eye patch to stop the double vision. You can switch it from eye to eye to give them a break. I could not drive for almost two years unless I wore a patch to stop the double vision.
So my dear wife Jan fixed me up with a few different ones depending on my moods. One had a tassel, another the painted on an eye, yet another had fancy spirals.
All in good fun. Life is hard right now, but it will get better. And best of all we are all only a click away to talk to someone who understands fully what you are going through.
in reply to: Hi, everyone! I’m the new facilitator. #1069068Help? Did someone say they are here to help? Yippee,
We needed more facilitators and to have you join us is a great help. Thanks for agreeing to be a facilitator.
in reply to: Donating plasma? #1069289Wow,
I was not aware of this possibility. I did some internet research and it appears to be legit for research. I would be interested to hear what they tell you as to your ability to donate.
We encourge research in the Graves’ foundation and have in the past donated blood en mass at our conferences to researchers. If you can get a few bucks and help research all the better.
Keep us informed.
in reply to: New User – just diagnosed with GD on 6/8/09 : ( #1069345Hi MIke,
Jake here. Yes it is less commen in men but yes we do get Graves’. Keep working with your doctor and have them follow your levels. Ask any questions you may have and I will do my best to answer them. We also have another male facilitator named John. So between us we should be able to help you out with "Guy" stuff.
in reply to: Gardasil Vaccine and Graves Disease #1069558I was going to ask the same question as ewmb. I did a search on Gardasil and Graves’ disease. I found one layperson’s site that stated there was a possible connection. No information to back up the claim, nor any link to a credible source to do research on it.
I did find a link on the Centers for Disease control for links to a few of the other “supposed side effects” but they did not list Graves’ disease among them.
Anytime an illness comes on after a vaccination we may want to see a link to it, whether it is there or not. Considering the hundreds of thousands of women who have taken Gardasil there is bound to be one of the “1/4 of one percent of the population” that will develop Graves’ disease. Was it caused by the vaccination? Can’t say no for certainty, but the fact that I could not locate it under many different search engines, linked to a credible site, I would have to say no.
Don’t beat yourself up over this. It happens. She is young and will recover well, most certainly. Get her treatment. Watch the CDC or FDA site for any links that may pop up. If it does pop up in a search, the key to see if it may be credible is to see if they link to any proven and verified studies that have had a peer review. If not then realize that any person with a keyboard and who can type with two fingers is capable of building and maintaining a web site. They can put what they wish on it, often without impunity.
We are here for you and your daughter. Forever only one click away.On the birth control question I have no idea. That is a great question to ask your pharmacist. They will know the answer or know where to find it for you.
As for a good cookbook? The Atkins diet is a good one for us. We try to limit our kelp and soy, otherwise it is a great one to follow for us.
in reply to: Beta Blocker #1069961Hi Lisa,
It is very common to be on beta blockers with anti-thyroid drugs. You did the right thing asking the pharmacist. The Beta blocker will help to protect your heart from working too hard. It is a wise thing your doctor is doing. The heart can be damaged by working too hard when we are hyper. With the cardogram you and your doctor will have a good baseline to compare your later heart readings.
It is very normal what they are suggesting. Talk to the cardiologist when you go in for your test. Tell him or her your concerns.
Let us know how much better you feel after you go on the Beta Blockers.
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