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in reply to: 5 years “stable” 2 weeks post- od #1177177
Hi, since you have already had two OD’s. I think you will find the subsequent strabismus surgery a walk in the park! As Kimberly said, double vision can happen after OD. I had double vision before my OD, because of the severity of TED. For me strabismus surgery was sooooo wonderful, and my double vision was gone immediately after the surgery, and has never returned. It is a less complicated procedure, with many fewer risks and complications, that an OD.
I think you’ll said through it. No pain to speak of at all, and you can pretty much resume your life except strenuous things.
ShirleyHi, I saw no need to make changes,and I did not make any changes at all.
I’m sure you will get some varied thoughts. I have coffee every morning, but it has never bothered me.. Kimberly’s comments are relevant regarding seaweed.
And, yes, you will find everything imaginable on the net.
Shirleyin reply to: psych symptoms #1177098Hi. I have not had similar experiences, but sure can understand why the stress builds. And, I guess the other thought is, anything else going on in your world that would contribute to this (not asking you to say, but just give it some thought)
I know you had labs two weeks ago, but the change is profound, so maybe schedule another lab for next week????
Shirleyin reply to: TT surgery scheduled for monday march 11th! #1177161Hi Tim and Meg,
you’ll hear from a lot of us!
My experience:
neck a little sore, the kind of sore when you use muscles you have not used for a while. In this case, it is the position of your head in the OR, more than the incision itself.Eating-I found it a bit hard to chew steak (which is what I wanted at that time)
But I ate everything that evening. My surgery was the first case in the morning. If it is later in the day, you probably won’t be that hungry. And probably may be sleepy, depending on when it begins/ends. IF you have a chance, ask to be the “first case.”Walking around-same day up a bit, next day, could do what I wanted to do at home walking wise. Tired!
Pain-I did not have pain. Just really sore muscles in my neck from the position. Never incisional pain.
I did not use anything on my incision, and it is not visible. Check with the surgeon on this. I’d say leave it alone for at least 10 days, surgeon may say longer (if you want to put stuff on it.)
I think you will be super happy with your experience, that you did this, and you will be able to begin your family a lot sooner with this choice.
However you do need to get your thyroid hormone on board and regulated. This is never as fast as we want. And your OB should definitely know you have Graves’ Some people go to high risk OB’s. others don’t. But they should definitely have a clue, and be in contact with endo!
You will get some more good responses……
Shirleyin reply to: Help the GDATF by Sharing Your Story! #1176909I love this site. It is so far superior to any other. I trolled around just a bit before I found it. I have encouraged every doctor I know to refer this site to their patients. My experience has been so very difficult with TED, and the facilitators and fellow posters have saved my life several times. It is so wonderful to see prior poster return to the site, be there for others, and let us all know that you really DO get better from Graves’ and from TED.
I encourage anyone who can possibly attend, to go to the conferences. I have been to two, and they are marvelous. This organization has the oversight and expertise needed to really help. And yes, there is a lot of scary, and sometimes very frightening and dangerous on some of the sites on the web.
Shirley (name can be used.)in reply to: Is the Uptake Test Necessary? #1177119Well, you sure are getting a lot of opinions!
Just so you know, and can again check with your doctor to review, ATD is always the first step in the treatment of Graves’. Goal is to get you safely in the euthyroid state.I am not sure that it is correct that if a person choses RAI as their final treatment, that the dose they give is based on the initial diagnostic ultrasound,
so this is a good question for your endo.The TSI, TRAB and related diagnostic testing are quite a bit more expensive than lots of labs. I am not sure of the “state of the insurance art” at this time, but if you choose to have them, call the insurance company (not the doc or the office) and ask them if they are covered. Just so you don’t get a big financial shock. As you know. all insurance companies vary widely, and some of them, week by week!
As Alexis said, the dose for an uptake is minuscule, and I am pretty sure that there are no precautions with anything for this test. But again, check, with the endo (who might or might not know) or nuclear medicine, where you will have the test (I think.)
I’d probably want the uptake to be sure that the nodules are benign. Most are. But nice to know.
WElcome to our club. You will find a group of amazing folks here.
Alexis is a nice resource for you, cause you both have little children.Shirley
in reply to: radioactive iodine treatment #1177150In a word, absolutely yes, you are at risk. If you choose to remain completely untreated, you are in real danger.
It seems like you should begin by understanding Graves’, reading the references on this site, and make a big list of questions for your endocrinologist. When we are sick, we need to understand the pros and cons of the treatments. Many on this site have had RAI, many have had surgery, and a few are taking ATD’s. And, after treatment, we move ahead with our lives, taking the amount of thyroid hormone that our very clever bodies used to do without our help! before Graves.
Seems like there is a lot of learning and understanding that needs to happen for you so that you have a clear picture of what Graves’ is, and the treatment options available to you. You have named two of them, and the other option is continuing with ATD’s (anti-thryoid drug)
The standard of care over many years has been that the purpose of ATD’s has been to get us in a safe range (not hyperthyroid, which is dangerous) more to a euthyroid (normal) state with the amount of thyroid hormone we are producing. There is no defined time to be on ATD’s, but historically, it has been regarded at the interim measure to have us be safe to move forward with a permanent treatment. After being on ATD’s for a while, the treatments which has been regarded as permanent, have been RAI and thyroidectomy.However, in recent years, a small number of people have remained on ATD’s, having both thyroid labs (and liver function labs.) As you may or have not learned by now, there are pros and cons, and risks with each treatment. With ATD’s, primarily at the beginning, additional labs should be done to check liver function and a CBC. The extremely small risk seems to dissipate
after a few months.It would be helpful to know how much you do know and understand. Sounds like you have been under the care of your doctor. Are you on ATD’s now?
ARE you still hyper? (It is hard to think clearly when we are really hyper.)
ShirleyHi PattiMeg,
It sounds like you have a really wonderful surgeon! From my own experiences, and the fact that an OD is recommended for my right eye now, and I am pretty darn sure I will not do it….I think you are super lucky not to need OD.
And, as you know, and I have said before. I LOVED LOVED LOVED LOVED my strabismus surgery, and the double vision was impacting my life as it is yours.My experience with strabismus…
I’d go with what the surgeon does, mind did not leave the sutures in to adjust. It seems reasonable to do that, but I am not sure what the standard of practice is for that, and/or if there is one, and it is simply a matter of where they trained.The double vision was gone immediately! No second tries.
The doc was a pediatric ophthalmologist. Who “did” adults with TED. Waiting room FULL OF KIDS!Anesthesia, I had a “MAC” which monitered anesthesia care, I think you already know this,. which means you are put to sleep by IV (proposal) but if they stop the drip, you will immediately wake up. This is ideal for this surgery, cause he had me look at eye charts several times in the OR to be sure I was seeing single vision.
So that means no general, no intubation.
Easy recovery. I proceeded with living my life, not special precautions except not straining and lifting heavy stuff while the muscles healed.I happily drove the next day, and went back to work in 3 days (wanted to have fun for those three days.)
Write again if you have more questions. The lower/upper lid procedures sound a heck of a lot better than my terrible experiences and poor outcomes. My right palatal graft site finally granulated over SIXTEEN MONTHS after my surgery. He said it would be pretty much healed in 10 days. Not a bit happy about this experience, that is for sure.
in reply to: 3 year old girl with graves disease #1177081Hi Wendy, you area doing a good job advocating for your daughter. Be sure to put all the questions you have written in this forum in a list so you can ask the doctor, the pediatrician. Yes it is very good that a pediatrician is her doctor, and I am sure he is very well informed on Graves’ in children. Sounds like it.
Glad she goes back tomorrow.
Here are some questions for you to ask, write down the answers. I suggest, too that you get copies of the lab results for your file at home. You may not understand all of now, but you will with time.
1. What are you testing with the labs?
2. Are there any symptoms I should watch for because of the medication (ATD or anti thyroid drug) she is taking?
3. Is it important to take the drug three times a day/ If so, that is fine, but would it work for two times a day?
4. Look at the dry patches. Can you explain this? How can I treat them? Is it part of Graves? Will they go away later?
5. What signs should I call you about, (and not wait for the next appointment.)
6. Do I have to worry about the slight heart murmur? Is it related to Graves’?
(WEndy, many people have a heart murmur that means nothing, so as about this for information and reassurance.)
7. Ask about the narrowing of the arteries in her heart. ( I suspect this is not related to Graves’ at all.” Ask if he is concerned about this at this time,and do ask if it is related to Graves’.
8. Ask the doc if you can talk with other parents of kids with Graves (he may say he needs to contact them first for their permission before he provides their names, which makes perfect sense and is the right thing to do.)
9. and if he has none in his practice, ask him to check with colleagues to see if they do.
10. Also do ask directly if he is aware of any support groups for parents. He may not know, and there may not be any, but worth asking.
11. Ask if you can get the blood work done ahead of the appointment, so there is something to discuss at the appointment, rather than waiting for the results after the appointment.
12. Say that you would like to have copies of the labs and the visits, for it is hard to remember all this information.
Hope this helps.
**Have your daughter drink water or any fluid before she has her labs. It is easier to locate the veins (I have drawn a lOT of labs on kids.)
Shirleyin reply to: 3 year old girl with graves disease #1177079Hello Wendy,
I want to clarify to you my comment, which was to encourage you to ask the doctor if it would be equally helpful if the medication carbimolzole could be given twice a day. I said that ONLY because it is very difficult to give that middle of the day dose. Much easier for you and your daughter to take a pill in the morning and in the evening. This does not mean giving fewer milligrams.This is what I wrote in my last post to you, and thought I’d repeat it again:
“Is your daughter seeing a pediatric endocrinologist? Do you feel you understand a bit about the path of treatment? If she is taking the anti thyroid drug carbimozole, I would expect that they will be doing labs, for that, plus her symptoms, is how they determine the dose of the drug.”
Wendy, you are at the beginning of a very complicated medical situation for your daughter. YOu must be the one to work very hard to find the right doctor for her. So, it would be helpful for you to answer the questions I wrote above, and then try to find the right doctors. She will definitely need to have lab work done again (as mentioned above,)
Do read and watch the references Kimberly gave you.
Regarding the dry patches, yes, that is probably associated with Grave’s disease. It is on the list of one of the symptoms.
**It is important for you to realize that it is critical for your daughter’s health and future for you to have good medical care for her, preferably a pediatric endocrinologist who is very familiar with Childhood Graves’. Also, it will take a while, but it is equally critical for you to begin to understand Graves’, the tests, and all that will be involved in helping your sweet little girl move toward being healthy again.This is not something that she will get “over,” nor will she get better without medical help and your help. I hope you can take some of the questions that you are asking here, to the right doctor. It might be helpful for you to take a friend with you to take notes, and have your list of questions before you go.
*****Ask the doctors and medical community where you live, for permission from other parents of kids with Graves’. This is what you want. You are not going to know this unless you ask.I wish you the best, sure am sorry that you and she are dealing with this disease.
Shirleyin reply to: 3 year old girl with graves disease #1177074Hi Wendy, I am so sorry you and your three year old have to deal with all of this. It may be necessary at this time, but I encourage you to tell the doc that you would like to get rid of the three times a day medication schedule as soon as possible. That pill in the middle of the day is tough to do.
I assume you are not in the U.S, also. Connecting with other parents is a wonderful and reassuring thing to do.
I know you said that you do not use Facebook. But I encourage you to sign up.
Then you can use the site that Kimberly referenced. I think it would really be helpful. Also, if we knew which country you are in, perhaps you or we can connect you with parents in your country.Is your daughter seeing a pediatric endocrinologist? Do you feel you understand a bit about the path of treatment? If she is taking the anti thyroid drug carbimozole, I would expect that they will be doing labs, for that, plus her symptoms, is how they determine the dose of the drug.
I wish you the best, and of course, it is just not fair for children (and you) to have to experience this. But she will get better, and will learn how to live with Graves’, and have a happy life.
Shirleyin reply to: 6 days post TT- menstruation/pregnancy question #1177064Excellent responses! Especially the anatomy lesson by WWW12!
I hope you feel much reassured. Recover from your surgery, get regulated with your thyroid hormone of your choice, and plan that baby!
Shirleyin reply to: Ophthalmologist appt. #1177055You are doing the right thing. Getting a baseline exam from an ophthalmologist who is familiar with TED (some aren’t) is a great idea.
Do not be concerned about unnecessary tests. The vision and other tests they do are not invasive, and it is very wise to have this appointment to have a baseline exam for your eyes. As you may have read, TED (thyroid eye disease) can happen, and it runs the gamut for the very few symptoms you have, which may/may not be TED, to many more symptoms, including double vision, extreme light sensitivity, loss of vision. All of this can be carefully followed and treated. Many people have the symptoms you have now, and never have any more, and do not progress to more severe TED. Having an extremely severe case of TED is rare (so I guess I am rare!)Do ask the eye doc directly if he is familiar with TED. Some are, some aren’t.
You can say something like, “do you have many TED patients in your practice?”
Do write to tell us what you learn and how it goes.
I suggest not reading volumes and volumes about TED right now. Wait to see how it goes, what the doc thinks.
Shirleyin reply to: 6 days post TT- menstruation/pregnancy question #1177060Hi. HOW UPSETTING to hear that from anyone, anytime! And especially when you are vulnerably post op.
She is 1000% wrong. It is such a dumb, irrelevant statement.
This forum addresses our own experiences, and so here is my wonderful experience.
I had a thyroidectomy. Also had a baby. Then had two more planned children.
I imagine your period will come as it always has. Mine did, although altered onset because of breast feeding.I suggest you call one of your docs who will be super responsive to this question. I would call your endo pronto this morning, and try to convey how important it is for you to have knowledge and reassurance from him on this topic. I hate to have you entertaining this thought at all! Your job is to get well, and NOT have stress!
The surgeon will tell you that it is not related. Having said this, this is not his particular fund of knowledge. So your endo is better.I took a look at the web, and there is much garbage and crap out there, and none of it is valid, and several of them apply the word “hormone” to
progesterone and estrogen, cause they don’t know any better. I mean that they don’t even know that thyroid hormone is totally unrelated. None of the sites are written by physicians. I imagine there are not a lot of studies about this because there is no reason at all to do the studies. It’s more like, “if i break my leg, will it cause menopause.” THis is my opinion.Be sure to call your endo, and/or you docs to get the right answer.
Do write back. I don’t think you will get accurate information on the web.
You can also call a very experienced OB DOC.
SHIRLEYin reply to: Help the GDATF by Sharing Your Story! #1176904What wonderful comments! Mine will soon join them.
A special salute to Debbie’s marvelous poem @ GDATF in the last post!
It is really good!I sure do wish all of us could meet in person some day.
Including our friends so far, far away!Shirley
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