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in reply to: Alternative options? #1061943

Hi Suzanne, sportnut 2~I hope you do begin a new thread with your questions about after surgery. And welcome to htis great site! Kimberly gave some great suggestions. If you use the search engine, put in Surgery, you will hear more experiences. Maybe put AFTER SURGERY, ACTIVITY or something like that? I was 21 or 22 (forget!) when I had my thryoidectomy. I really bounced back fast. An understandable slightly sore neck for about 4-5 day. Ate anything I wanted. I was back at work in 2 weeks, not as strenuous as soccer, but a hectic 10 hours in the hospital where all i did was RUN.
Sounds like you and your daughter have gotten some good guidance in this direction, too, for the timing of her surgery, school beginning, and soccer. I suggest the coach and team know she had recent surgery. People do tend to a bit more tired after surgery, but the procedure is really short! And that is good news.
Shirley

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in reply to: What is the possibility? #1061267

Hi, in one word? No. Kimberly summed it up nicely. But as you go through your decision process on what to do next, I hope that you will reach the decision that works for you. I am sure all of us hope that there is a better way to manage this darn disease.
Shirley

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in reply to: Vision emergency symptoms? #1061292

It is disconcerting to hear the varying opinions. In my experience (you can see a list of my experiences at the end of this post)the endocrinologist should not have much opinion, and certainly not much knowledge, about TED. In my world, they are the docs who manage Graves’, the dose of replacement, ATD’s and meds given at the beginning of Graves’, etc. etc, and the docs who are in your life for the rest of your life, managing the thyroid hormone replacement, or whatever you have chosen to do. But NOT TED. Of course, when they finish their internal medicine residency, and take (usually a year, can be more) of endocrinology, they certainly study the thyroid gland, and all that is associated with it. There is nothing in their training in endocrinology, which teaches them to address the treatment of the eye for TED. They might prescribe steroids, but i would expect the eye docs to do that.

It seems to me that you have the right doc for your eyes, by seeing a neuro-ophthamologist for your eyes. The do the color recognition/visual fields testing, with the background of an ophthamology residency, then a neuro residency. So their fund of knowledge in this area is the right mix for TED. Then they would refer to oculofacial surgeons, for OD if they belileve the optic nerve is treated. And if double vision is a problem, you’d be referred to a (usually it is) a pediatric surgeon who operates on adults who have this problem, They move the muscles of the eye, to decrease or eliminate the double vision. It’s called strabismus surgery.

I had the same experience as jansm, regarding the need to do an OD to save my vision. But now you know that is not your immediate problem, so as jansm say, you have time to take your time, get a 2nd opinion if needed.

I suggest you ask whoever ordered the CT scans (I presume they are orbital CT’s) how he plans to use the information. They will probably show that some of the muscles of your eyes are fibrosed, which IS TED. Another big quesiton I would like you to get as good as answer as you can to, is are you in the ACTIVE (or hot) phase of TED, or has anyone concluded you are in the INACTIVE (or cold) phase of TED. If you have not read about the course of TED, it is a good idea for you to empower yourself with this knowledge. I found one of the most frustrating parts of having TED, is when to KNOW when I was through with the active phase. The variables for this are kind of soft, based on if YOU feel your eyes are still changing all the time, plus the objective measurements of the neuro/opth doc, plus the period of time since the beginning of TEF. THat is hard to know, for most of us had TED before it was officially diagnosed.

Sorry for such a long post. If you are not doing this, sign the appropriate medical release of information papers so you can have all repoerts and dicdtated records for YOUR file.
Do you have double vision? Maybe you mentioned it and I missed it.
Shirley

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in reply to: Vision emergency symptoms? #1061290

HI S,
I hate hate prednisone! you have my total sympathy and empathy.
I just arrived in Sun Valley from Seattle visiting kids, and we are going out RIGHT NOW!~!!! SO GOTTA GO. That’s what they say. Following orders. Will write later tonight about eyes, ted, and all your very goof concerns. Yes, what the neuro-opth doc told you is absolutely correct.

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in reply to: New with Graves, considering meds RAI #1061471

I think Erica’s email is very informative, and here points are well taken. Especially in the post she is responding to, for she is giving her own experience.

I certainly cannot argue that with thyroid CANCER, it is possible that radiation is given as a follow up, but that is not really the topic. In addition to that, (still not staying of topic of Graves’, but on thyroid cancer, there are usually two treatment-RAI or surgery. The treatment is based on the stage of the cancer. This one is a very slow growing cancer. Radiation does not always follow. Dependent on stage and node status. Read about it on web MD and/or NIH website if you want to learn more, or ask an oncologist.

But back to Graves’, Erica’s experience represents one of the possibilities that can happen. And she’s DONE with ATD’s and choosing RAI. So she had surgery. This is a good example of making her own decisions, based on her own experiences, and sharing them with the group.
Shirley

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in reply to: Vision emergency symptoms? #1061287

Ya, I think that makes sense. Sat-Sun ER’s are the last resort.
With TED, I had an occasional stabbing eye pain, too. Fleeting, not frequent. Really relieved to hear of your plans tomorrow. You will get much better care and attention tomorrow, and you are hooked up with the right specialties, and have sort of a PLAN!! All good news. Do write after your appt. tomorrow.
s

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in reply to: Vision emergency symptoms? #1061285

Hi, you may have already read some of my posts re TED. I am not clear if you are seeing an endo tomorrow, or an eye doctor or neuro opthamologist. I can tell you my experience, for I did have to have OD in the hot or active phase of TED because of optic neuropathy. Which means pressure on the optic nerve. I was not at all aware that I had a big blind spot (left visual field cut) but it was clearly demonstrated by visual fields test (the machine kind.) I had a dose of steroids, which resulted in almost a full visual field, for all of 4 or 5 days. So, this is a medical emergency, regarding that the pressure needs to be relieved before there os permanent damage to the optic nerve. But not the kind of emergency (in my case) that it needed be done tomorrow.
I did not want an OD, especially in the active phase, where eyes are changing all the time. But I did go back on steroids, and had an OD within a month, after I found an oculofacial surgeon (this one works with an oto surgeon, too, the each took a side of the orbit.) If your eye went suddenly BLIND as in no vision, I would go to the ER. But as you know, the ER docs won’t be able to do amything, hopefully you are in a big enough area that they would consult fast. BUT your appointment is tomorrow, and if you are stable where you are, I know you plan to go tomorow. Do call the office 1st thing tomorrow and report your new symptoms. Maybe you can get some testing done before the appointment, or the same day, so there is something to discuss.
My vision improved right after the OD to full visual fields.
Write with more ? Go to the ER if you feel that you should…
Shirley

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in reply to: I am back! #1061319

Hi Julie,
I completely understand how you feel. I am an action oriented, get stuff done person, and had always felt good. And that is how I was perceived by others. This darn disease IS an invisible disability. Noone understands, you feel crappy, and it is easy to wish you had some kind of symbol, like a big old cast on an arm or leg, that explained everything. THen others and YOU would know that there was a finite period of time, then you will be fine.
It is time consuming to get the right hormone dose after RAI or surgery. My body needs are changing AGAIN and we are fiddling with the right dose. But you will get there. There are lots of folks who have done RAI on this board, you will probably hear from about how long it took them. It is tricky for a while, for there is still hormone circulating for a few months.

Boston? I went to my first meeting last year in San Diego, when I was in the middle of active TED. It was the best thing I have ever done. I live in Seattle, about as far away from Boston as I can get, but I do plan to go. It is a wonderful meeting, very personalized, and informative. The program was wonderful. One of the biggest positive aspects of the meeting was to meet in person, others who felt as horrible as I did, and were really feeling good, and moving along with their lives.
Shirley

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in reply to: new here. confused on what to do! #1061302

Hi, I was on PTU. My liver studies became a little elevated, but not to a concerning level. I did not enjoy food very much while on the drug much, but my taste was not altered enough to be a problem. This may because I had a plan at the very beginning, and that was to take ATD’s and beta blockers as short a time as possible, and as soon as my thyroid labs were more toward normal, to have a thyroidectomy. So I knew anything I did was short term. After I became a person again ( I was REALLY hyper, with the usual weight loss, crazy, anxiety, tremor, rapid heart rate and all the other stuff we read about.) I prepped for the surgery, took potassium iodide drops approximately 10 days before the surgery. This reduces the vasularity of the thyroid gland in preparation for surgery. After my surgery, I was fine for many years, then got a little hypo, and began on Synthroid. At the time I had the surgery the believe was to leave a small amount of thyroid gland, in the hopes that just the right amount of hormone would be made for an individual, thus eliminted the need to take thyroid hormone. I believe the practice now, in both RAI and surgery, is to destroy the thyroid gland production, then manage thyroid hormone by the dose of medicine we take. Good questions to check in with your endo about. I imagine he/she is going to watch the TREND of your LFT’S (liver function tests) very carefully. Ask when he/she know to be concerned.
Shirley

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in reply to: New with Graves, considering meds RAI #1061465

Hello all,
There are a few people on this thread who are pretty much in the same position, trying to decide which treatment to have to manage Graves’. It has already been said that making an objective list of pros and cons, with info that you learn from your docs, is a good idea. Having said that, there are many objective variables that contribute to options presented by endos. Sometimes, it depends on where they went to school, and/or they simply have an opinion for no real reason. Just like you drive to a destination one way all the time, but there are several options for getting there. Having said that, do ask why they recommend a certain choice, if they do. Occassionally, there may be a medical reason for one choice over the other. You should know this and understand the thinking. Second opinions are good, too. Many endos of them tell their patients, "It’s your choice." Most of the time, it is our choice.
Then, add your own subjective thoughts to that treatment. There is no one right answer.

RAI– It is a good choice. It’s right for the people who chose it. You have already read that it is a choice that has been made by many on this board. Some people are silly scared of radiation of any kind. There is no basis for this at all, with RAI, and the lifetime dose is inconsequential. So they you are operating with misinformation. But if you believe this, and can’t get over the hurdle, choose another treatment. Some people just don’t want it. No reason. That’s ok. Two of the facilitators chose it and they are happy with it.
Surgery-It is a good choice. It’s right for the people who chose it. I represent someone who had surgery. It was my choice, and I am happy with it. I had access to good surgeon at a large medical center.
Meds-it is a good choice. It’s right for the people who chose it. Another facilitator chose meds,and she is happy with her choice. If it does not work at some point, you have the other two choices.
Owning your choice, and not being pressured by others is very empowering.

From my perspective, Some thoughts that occur to me to consider about the the three choices are;

1. Surgery- As you would with any procedure, you need to find a surgeon who does thyroidectomies routinely. I might add that the same is true of C-sections, heart surgeries, brain surgeries. Generally, these surgeons are at a larger medical center. So access to a city could rule out this choice. Another very important thought is to get your questions answered by the SURGEON. Not the endocrinologist. They are not surgeons. The incidence of damage to vocal cords is very rare. But it is there. I chose surgery because it seemed the fastest way to get off this crazy Graves’ train. So that made me very happy with my choice. My experience was great.
2.-RAI-Lots of people happy with it. As you have probably read, some people have to have it again, but this is uncommon.
And it takes longer for the hormone to get to a steady state. One thing that is true, that if you have TED, there are some studies that show TED can be worse after RAI. Having said that, other docs believe that this is manageable with steroids.
And there are guidelines about how soon you should try to get pregnant after RAI. It is my opinion that it is important to have Graves’ controlled, and your health back before trying to have a baby, regardless of treatment choice.
3. Meds-If you go the meds route, you need to have labs that include liver function. If there are any issues, they usually pop up when first beginning ATD’s. And most of us on on them anyway, for a short while. Then the incidence is negligible. One thing about meds is, that it is possible that if you become hyper again, you many need to make another treatment choice of RAI or surgery. Or maybe not! Having labs is not a variable to consider when making a choice, for they are a part of our lives for the rest of our life regardless of our choice.

Summary-Graves’ is a lifetime situation. Labs and changes in drug dosage will be part of our lives for the rest of our lives.
Our medications are governed by how we feel and the labs. And we all get better, we all get back to baseline or pretty near it. This is hard to determine sometimes, because the years are rolling by at the same time. ” title=”Very Happy” />
Shirley

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in reply to: TED symptom relief? Hot phase #1061375

No, I have not heard of it either. But I am a person who is unlikely to believe anything that makes much difference, given the course of the disease of both TED and Graves’. Other than the standard treatments, and some interventions to help with symptoms. Having said that, I sure have no argument with living well with Graves’! As long as what I eat does not interfere with the foods I really enjoy! For me, coffee, occasional red wine, chocolate and butter are part of my food world-in moderation, of course! However, I like to read, so I will reserve the book from the library. As I said, who can argue with living well? Especially when we have these two diseases. Graves’ and TED have made breast cancer a picnic in the park for me. And I had chemo for six months!
Shirley

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in reply to: Growing goiter after RAI? #1061325

I have not had your experience with an enlarged thyroid since my surgery years ago, It does seem logical that your thyroid would decrease in size a little bit with the IV steroids, but that does not solve your problem. I totally agree that this situation is NOT something to dismiss! Maybe if you tell him you are having trouble breathing, that might get his attention?
Or how easy is it for you to get a 2nd opinion? Also, tell you eye doc how concerned you are about this, for it is a problem, maybe he can get the endo’s attention.
BUT-I had recent experience with pressure on the optic nerve when I was on the active phase of TED. This is called optic neuropathy. I also had IV infusions of steroids. There was a little improvement for a few days. I hope you are seeing the right eye docs who are watching your vision and your optic nerve very very closely! For this is a serious condition that can result in permanent blindness, and you have probably heard this. The next step for me was an OD, orbital decompression. This was done to relieve pressure on my optic nerve, and it did save my vision, which I was definitely losing.
I am so sorry you are dealing with both of these things. Plus, I hate prednisone and how it makes me feel, which is super crappy.
Shirley

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in reply to: Hair loss explanation? #1061348

This is not a very helpful response, since I have not had experience with hair loss. I take Synthroid, never had a problem.
Did not have RAI. I do think there are several posts on this subject, so you might try the search box above, and continue to watch for better responses than mine to your question!
Shirley

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in reply to: Orbital Decompression Surgery Recommended #1061344

Hi, welcome to this great board. I am glad you are getting a second opinion, and your questions are good.
In my long battle with TED, the phrase corneal regression has not been mentioned. But corneal exposure, the risk for corneal abrasion, has been mentioned during the whole course of TED. Because of continuing and increasing exposure of the cornea, combined with the dryness of the eyes, related to the fact that biological component of our tears produced from the lacrimal glands, are not efficient, thus not bathing our eyes and keeping them moist like normal eyes. used in relation to TED. Thus the importance of using artificial tears, gels and lubricants.
I have also heard that corneal regression can be a complication of LASIK and similar surgical procedures.

But the important thing is that there is concern about your cornea, and from what I understand in your email, the OD is recommended to make more room for this eye to recede back in your head, thus having less exposure to the cornea.
This may have developed over time, since you seem to have active TED in 1996.

I had a OD during the active phase, cause there was pressure on my optic nerve. I know that double vision is listed as a possible complication of OD, and I think there are people on the board who did have this experience, and subsequently had strabismus surgery, which is a relatively simple surgery (compared to OD) to move the muscles of the eye to eliminate the double vision. In my experience, I had severe double vision before my OD, and it was no worse afterward.
My eye was protruding, not badly, and it is now less protruding than the right eye. But the OD saved my vision by relieving pressure on the optic nerve.
So, for my non-professional thoughts regarding your questions, based on what I have learned about TED plus my own experiences. Your questions, and my responses definitely are simply additional thoughts to add to your questions for the eye surgeon:
1. I am not sure if the risk of double vision for OD is related to the degree of protrusion. Ask the surgeon this question. What I do know, is that there is that possibility.
2. Whether any double vision would interfere with reading, is always dependent on which muscles are affected (either by the process of TED-or surgery. So ask which sides of the eye socket would be worked on to make room for your eye.

Before the OD, I had severe double vision looking straight forward, up and moderate double vision looking to the sides. But the superior muscles of the eye (which control the vision looking down, as in reading) were not affected at all, so i could always read, or use the computer. But I had to have (and still do the computer lower.)
3. Do ask this question, but he/she might not be able to give you a firm answer. Depends on how much work they to to have your eye recede. So my thought is that there will still probably be a difference. I know my eyes look different, one is out more than the other,and it is not noticed by anyone.
4. Ask if this eye can be maintained by eye drops and lubricants instead of surgery. Ask if your cornea is damaged now, to the point that there is concern that you might need a corneal transplant at some point, and if this is the reason for the OD proposal, and if the expectation is that it will take care of the problem.

If you decide to proceed with OD, there are several posts by me about my experience, and you are welcome to ask as many questions as they come up. Take it one step at a time, and do write again.
Shirley

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in reply to: TED symptom relief? Hot phase #1061372

Hi, sorry you may be dealing with TED. Contrary to others on the board, I find hot compresses to my eyes give much relief to my eyes when they hurt (scratchy, swollen) I realize it is counter-intuitive, but my eye docs told me that other people had found relief. So that is what I do. Of course, when I had my surgeries, I used cold compresses constantly, and elevated my head for as long as I could tolerate it. I was a cold compress junkie post op. When I had my OD, i slept (or tried to!) with the head of bed elevated for about two weeks, and had almost no swelling.

I am glad you have an appointment with an ophthamologist. I don’t know if it would help you financially with insurance, but Graves’ and TED are two separate conditions,and you MIGHT be able to argue that TED is a new diagnosis. Especially if it is a huge financial issue for you. Because TED can cost big bucks with frequent eye doc visits, and possible sequential multiple surgeries. Just a thought.

The Brazil nut suggestion is interesting. I had heard about it on this board, have not tried it. I did mention it to my three eye docs, none seemed aware of any real research on the subject. Their response was exactly what Krisann79 said, it probably cannot hurt you to eat a few Brazil nuts a day. They said that in the hot phase, eyes are changing all the time, so it is hard to attribute any improvement to a small intervention of a few nuts a day. But is not harmful, and if it seems to help, I would do it in a heartbeat. I think I am in the inactive phase now, but that does not mean my eyes are comfortable, far from it! Tearing, swelling, light sensitivity, and a scratchiness feeling under my left upper eyelid.

If you get this before your appointment, clarify with the eye doc about the methimazole. You are taking that for Graves’, but I do not believe it will impact the course of TED at all. Different subjects. Or maybe I misunderstood what you were saying. Good luck today.
Shirley

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