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in reply to: Graves ophthalmopathy #1172232
Hi, I had quite a few steroids when I had active TED and optic neuropathy.
60 mgm Qday for a month with a long taper, and Solu Medro IV.
While it is true that you can be a degree of immunosuppressed while on steroids, when they are discontinued, your WBC (white blood count) returns to normal baseline.
So, in my experience, the steroids helped a small amount (slightly less double vision, slightly improved vision with visual fields testing) the improvements are temporary. So when they were discontinued, the improvements disappeared.I realize that there are probably many varied opinions about flu shots, among the public, and to a lesser extent, among doctors.
However, I chose to receive the flu shot when I was on the steroid taper. My WBC was not alarmingly low, and was almost back to baseline at that time.I know you and I both work in health care, gatorgirly. I see no reason for you not to have the flu shot in the future. Do you plan to have it this year?
RBF, I did not have fatigue and heavy legs with TED. I think I did have some increased mucous in the active phase. Aside from the TED, I suggest you get the labs Kimberly suggested. Maybe you are a little hyPO right now?
Shirleyin reply to: Okay. What would you do? #1172211HI, what a roller coaster ride you are one!
This is what I hear, responding to your questions and thoughts.1. I understand your concern about having elevated liver labs with the PTU.
My understanding is that methimazole was the first option ADT now, because it has been found that the incidence of liver involvement and low WBC (white blood counts) and or agranulocytosis, is less with methimazole.
Also, if a woman is pregnant, PTU is prescribed. cause is some soft evidence that methimazole does enter the placental blood stream.I think your own feelings about that are enough reason to stay away from PTU. I would do the same.
2. I did not know about the increased incidence of breast cancer and lactating.
But again, you have never wanted RAI, and now you are put in the position of risking becoming hyper if you don’t take an ATD, of having potential complications of you do take the other ATD, and ending up with RAI which you really have never been inclined to do in the first place. Plus, you do have a choice, and there is not compelling reason for you not choose a TT. That
has never been an issue.3. From all you have said and written, surgery is still your first choice. You have a scheduled date, you are in a good position to have it now. I believe once you make your decision, you have total support from everyone.
4. I would very reluctant to wait and see. I think you feel the same way. So many unknowns, with the real possibility of being hyper (and from the way you feel, it is not known, but you may be moving a little bit that way right now? But not enough to close a window for surgery.)
And, your questions at the end of your post pretty much reflect the consistency of how you have felt all through this very stressful time. You want surgery, you want it done, to move on with your life. I think this is reinforced by the real issues with the potential of having to stop PTU for the same reason you had to stop methimazole.
I think you already read that I chose surgery, had a great experience, and was in a similar situation with a new baby and breast feeding. I think the other thing I feel about RAI, even now, is I would choose TT because I would not want to risk having a repeat RAI. The whole episode of being hyper for me, was awful. I never want to feel that way again.
YOu have a lot of people suggesting different choices. You really do have a challenging set of circumstances!! Gosh.
ShirleyHi, I think the most important thing for you to do is to have eye docs familiar with TED, managing your care. Not the endo. If you are having mild symptoms, scratchy eyes, dry eyes, I suggest that you get an appointment with a neuro opthalmologist for a baseline evaluation of your eyes. TED ranges from a spectrum of the symptoms I mentioned above, to more life altering changes, such as double vision. proptosis (eyes bulging out from the orbit) and in some cases, optic neuropathy, which is serious, but can be treated. I suggest you take it a step at a time, beginning here by learning that there are two phases to TED, the active or hot phase, which can last around 9 months to between 1, 1 1/2 years. During this phase, eyes are changing all the time. During the active phase, no surgery is done, because the measurements and symptoms are not stable. The exception is the optic neuropathy, which I mentioned above. That is when there is pressure (from the increased bulk of the eye muscles, and increased orbital fat) push on the optic nerve. Then an orbital decompression must be done to save vision. Few people have this problem. (but I did.)
When you get to the inactive phase, or cold phase. everything is stable, and if surgical interventions need to be done, it is at this time they are done. There is an order, or progression of surgeries than can be performed at this time if needed.As you said, in the whole scheme of things, having good care for your eyes is the thing that matters. Whether your antibodies are up or down, makes no difference in the treatment and management of TED. So you are doing it
the best way you can.
ShirleyMy experience.
Also, put lch11 in search engine, she wrote about her experiences with TT.1. I was an RN on a busy floor.
I took 2 weeks off completely. (also had a baby I was breast feeding. I worked 4 hours a day, only 2 days a week the next week. The following week I worked 4 hours each day. Then I went back full time. I was a little tired, but the surgery is not a long one. Hard to differentiate being tired from the surgery, working a lot and having a baby, getting up in the middle of the night. If I had it to do over again, I would take advantage of everything, take that third week off to have fun and do things I never had time to do.2. Scar. People say, “What scar, I don’t see a scar.”
That is hard for me to remember. Maybe visible a month, less so in 2 months. It was not visible at all, I have to tell people I really DID have the surgery! Beautiful neck.3. I gained no weight at all. I was 22 at that time. Have not gained weight over time, except weight gain after the other babies which went away.
4. I prefer Synthroid, that is what I take. It has been around forever.
When the generic came out, I switched to it without knowing it, cause the doc did not specify Synthroid. I did not feel my usual well self on it. Maybe part of it was psychological, after I realized it was not Synthroid. But after I switched back to Synthroid, I felt better. Whatever you take, I suggest that you stick to that med without switching for a long time, probably a year, simply because the consistency of the same med is better when you are trying to find the right amount for you.Without looking it up, I do not remember the difference between the two. But I think there is a significant one, having to do with T3 and T4.
Shirleyin reply to: Overwhelmed, frustrated & worried #1172157Alexis, I meant to tell you that the standard of care when I had my thyroid surgery was to leave a little bit of thyroid tissue,hoping the glad would make the right amount of hormone. So my path of taking Synthroid is a bit different. I began taking it, then was a little hyper, stopped for a whole, was hypo, began again, have been on or ever since
Now, the do a TT, cause it is much easier to know where you are with the dose of the med. this does not apply to you at all, but wanted to mention it.in reply to: Overwhelmed, frustrated & worried #1172156Hi, I think catstuart made a valid observation about your endo. He probably trained at a place where there was more RAl. From my view of reading your posts, you have thought this through very carefully, and you have very good reasons for choosing a thyroidectomy. I almost think that the endo may have told the surgeon to discourage you.
Taking the KI drops is part of the prep pre op. it shrinks the tissues of the thyroid gland, makes it less vascular. Aside from the fact that it tastes terrible it is no big deal.
To answer your specific question, I began taking Synthroid a couple weeks, maybe three, after surgery. I felt great.You can get well a lot fast faster with a TT. Plus it seems that it is quite a big concern that it would be to be untreated all that time waiting to be done lactating. It would be downright dangerous for you to be untreated for hyperthyroidism for three months with the RAI plan.
I know you are so tired of all of this, but can you ask for the name of a general surgeon at Kaiser who does TT ‘s? Or, perhaps at your hospital TT is the territoryod the ENT doc. I am more familiar with general surgeons doing them. You doc sounds like he is good,has done a lot of them.
Gosh, I sure can understand your worries about this. But it does appear to me that you have chosen a TT, you have thought that for a long time, that you have a surgery date of June 12, and probably plans for help for that time. I think your heart rate will decrease when the stress decreases, and the beta blocker is there for you if you have a rapid rate that is hyper related. I sure hope this gets resolved for you soon.
Shirleyin reply to: Shirley- Surgery, lugol’s & breastfeeding #1172058Wow. I sure am sorry. That is hard mewd for you to hear The information I had did not contraindicate KI and breast feeding. DO you think she feels this is best because she is umcfortable telling you to go ahead? Probably worth checking with her again Gosh. Sure looking forward to hearing from you tomorrow after you see your endo. What a dilemma this is for you.
in reply to: Seeking Support & Advice #1172075Hi, I am definitely a patient, not a doctor.
My understanding is that you can have high antibodies for years and years. That antibodies are not the labs used to decide treatment, but more to confirm a diagnosis of Graves’ when in doubt.
My own personal experience is that my antibodies are still very high. I had the labs done again. when I developed TED.
One of the facilitators, Kimberly, has been on ATD’s quite a while now. When she sees this, I am sure she will respond with the very current information on the length of time people are on ATD’s. I believe that the prior thinking was that there was a limit to on them, but it is my impression that the current studies and thinking is that people can be on them for a long period of time, having labs along the way,as we do with all of our options.
Perhaps these are good questions to get a second opinion about. The more I think about it, a second opinion seems like a very good idea.
ShirleyHi Abigal,
I think the main thing is-how do you feel? If you are feeling fine, you probably are fine. Antibodies can be elevated for ayears and years. I suggest that you reflect on Bobbi’s post, follow your plan and enjoy Spain and your new life there. To address your concern about communication with the doc in Spain I suggest you write a short summary of your Graves’ history so she can read it at her own rate.
Be aware the there is always a chance of a change in your remission status,so it is wise to be followed by a doc over time.
Shirleyin reply to: Shirley- Surgery, lugol’s & breastfeeding #1172055HI Alexis, yes, I did breast feed while taking KI drops before the TT. I don’t remember anyone telling me not to. The pediatrician said that a small amount would be secreted in breast milk, but not significant to hurt the baby.
We were fine. I suggest you check with the pediatrician. It’s not a common thing, I think you have a better chance of getting information for the baby’s doc rather than the endo or the surgeon. Doug (baby) was not any different in any way, except he was better, cause he had a cold and was a little mucous factor, and the KCI he may have gotten in the breast milk, dried up his secretions so he could feed more comfortable! I’d imagine that all nursing mothers who have TT have gone thorough this like I did. Another mom in my nursing class (not nursing babies, but college of nursing) did the same thing I did, fed her baby, took the KI, had the TT, and all is well.
Shirley
I glanced at websites that aren’t good ones. The better ones say to check with you doctor. And I did find websites devoted only to the topic, except to say check with your doctor. Lots of the literature relates to the recent nuclear blast in Japan.I have been thinking about her, too. No, I have not heard.
Shirley
But I am interested in going to Jules Stein.
Shirleyin reply to: How Long Does it take? #1172029did he indicate that was a deal breaker for the surgery? Is it you who is worried about this? Or him. Ask him. I suspect not. He’ll figure it out, deal with it. Are you talking potassium iodide now?
I had a TT, super glad I did.
shirleyIt is so sore, that sometimes it is “referred pain.” If it gets worse and worse, call before Monday. i suspect it is part of the process. Frequently, at day 3,4,5 post op, things hurt the most. But as you know, care and continuity on the weekend is not at its’ finest. It is tough to manage the polar pack by yourself. rEally is. It needs to be filled with ice, lifted below your arm first to empty the warm water, then above your head to get the nice cold water in there. If there is any way at all you can find someone to be with you for a few more days, that would be nice for you. if not, ask a friend to come over, give her/him some names and phone numbers, to bring you food, change your cryopack (my name for it)
Also***super super important to take stool softeners every day. Opioids (narcotics) kinda tell the lower bowel to go on strike, so you can get pretty miserable in that part of your life. If you don’t have some, that is a good errand for someone.
Wish I were there to help you.
Shirleybri, this forum ROCKS!
YOU HAVE A LOT OF FRIENDS HERE.
Shirleyin reply to: HELP: Could it be a misktake???!!!….. #1171938I am very happy for you. Your common sense and logic told you that this was crazy. I kinda regret not encouraging you to hold off on that larger dose, but, as is often said here, we are not doctors, we are patients.
having said that, doctors are not always right, and there is more room for error when the messenger is not the doc.
Best wishes in your new goals!Shirley
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