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Hi, maybe there was poor communication in something I wrote, or perhaps misunderstood. I’d hate to have you thinking the two items that you referenvf were correct. Cause they aren’t. Of course, your eye surgeon is the best person to give you this info after your eyes have been examined.
To clarify.
1. I certainly did not say that more that muscle surgery (strabismus) gave a better result. Given the scenario that the outcome was not as good as you wanted, perhaps a second surgery would be indicated.
2. Not sure where the impression that not more than two muscles should be done came from, either. The purpose of the strabismus surgery is based on the affected muscles of your eye. It will be on the number of muscles that are affecting your vision, or causing double vision. In my case, the only muscle in both eyes, that was NOT affected was the superior muscle in one eye. So, I had six muscles moved in one eye, five in the other. When I say affected, I mean that the muscles were fibrosed, or not elastic anymore, so I could not look up, to the sides, or up/to the sides or down/to the side. in summary, the strabismus surgery gave me my life back.
***So you know, a general is not used for strabismus surgery. It is an outpatient procedure, and you have what is called conscious sedation, which means that you are asleep with and IV med called propofol. But if they stop it , you wake up immediately, and can answer their questions. I did this several times, and the questions was, “do you still have double vision, or is it single vision now.” I love this surgery.Regarding the conferences, I missed Boston, but went to my first one in San Diego the year before. They are, as you know. wonderful!
Please write if you have questions or need clarification on anything I wrote.
Shirleyin reply to: Diagnosed Dec 30, 2011 #1170692Hi Angela, what did you learn at your doctors’ appt. with the neuro/eye doc and the endo? how are things going for you?
ShirleyWe need to give that girl who “gets it’ a national medal of thyroid honor!”
in reply to: Wife want divorce and family in shambles #1170252did the doctor mention the other ATD to consider her taking? I am curious, was the doctor checking her liver labs when she was on this drug? It is definitely what should be done along withe the thyroid labs when first beginning an ATD. Was it the endocrinologist who saw her when she was sick, or another doc?
Anyway, I am very glad that this was discovered. Her WBC will most likely recover pretty fast now that she is off the drug.There is ANOTHER ATD, called propylthiouracil, or PTU for short. That is the ATD I took when I was first diagnosed. Did he mention putting her on that drug? However, her WBC should recover first before going on that drug. So maybe the best you and she can hope for, is to tough it out (with increasing hyper symptoms.) and have the rest of her recover. I am glad the RAI is very soon. The sooner, the better, that is for sure!
There is a ton of information from patients on this site about their experience with RAI. I cannot remember which facilitator wrote a very nice piece on what to expect. Unfortunately, the RAI does not have immediate effects, but it does work. I think Ski and Bobbi both had RAI. And there have been very recent posts about it.
It is nice to hear some good news from you, albeit, mixed. Because Graves’ has altered your life and the life of your family in a terrible way. I feel very optimistic that this too will pass, but I think we will be hearing from you many more times. Is your wife interested in joining the site?
shirley
Hi Sarah,
I love your sense of humor! It does help to laugh and smile a bit as we slug through all of this. So I’ll now say, “Gosh, I am so GLAD the other side of your neck looks bigger so that your EVEN!!!!” and not
Yes, when you order your allergy bracelet stating your severe allergy to the gook on the EKG leads, maybe you should ask them if you can trial it to see if you are allergic to the bracelet!!!!!!
So glad you are healing at the spots where the leads were. Now you have five new identifiers!
Shirleyin reply to: Recently diagnosed with GD #1170761Interesting! Thanks, Bobbi. I did not know about the ultrasound for eyes. Wonder if it provides the same information of orbital fat and fibrosed muscles? That was never offered to me. I just had another orbital CT (without dye) yesterday.
I will ask one of my many eye docs about that when I see her this week.Bobbi’s post covers the other arm of decisions about treatment that have to be thrown in the mix as you decide what do. Thoughts and knowledge from Kimberly and Bobbi on this important topic of deciding which treatment plan to take, are very helpful for you at this time.
Most definitely, making a list of pros and cons is the way to begin. She also mentioned the very critical topic of knowing that when we are hyper, we are not very grounded in any way. We’re sick. That is an extremely important issue to understand. Quite frequently the pros and cons do reflect what you want to do for your own reasons, added with the list that Bobbi mentioned. Cost, and the realities of where you live and what is available can limit your choices.
in reply to: Recently diagnosed with GD #1170759Hi Chris,
your eye doc is doing the right stuff. Kimberly’s answer about the CT scan helps confirm/not confirm the diagnosis of TED. When the muscles are affected, they get bigger, and you can see that very clearly on an orbital CT.
If they are bigger, or big enough, then eyes bulge a little bit or a lot. Our eye sockets, or orbits, are very cleverly designed to hold some cranial nerves, our eye, and the eye muscles. If anything provides more bulk, the eyes have only one way to go, and that is OUT.I did not know the information that Kimberly said, about waiting a month for labs after beginning ATD’s/ The endos in my area are very interested in all symptoms and changes, and like to do the labs closer to two weeks apart, especially in the beginning. They say that there is less chance of dipping down into hypo that way, which presents its’ own symptoms, none of them very nice to have.
Shirley
So glad you found this site, I am a fellow patient, and have found it immensely reassuring, informative and responsible, with no drama.Hi, I thing the use of ADT’s as the third treatment option has evolved over the years as more information was gathered. The reason to use it in the first place, as I am sure you know, is to get up out of the potentially dangerous and life threatening, and certainly to decrease the amount of hormone that is courtesy of Graves’, so we can begin to feel sane again, minus tremors, feeling like we are losing our minds, and all the other miserable symptoms that go with untreated Graves’.
Over time, ATD’s began to be regarded as a third treatment option. Kimberly has been on ATD’s for a long time. Not sure about Ski. Bobbi had RAI.
Kimberly is the best person to tell you her own experience, but I can see a couple cons to be:
-if we become hyper again on ATD’s, there might be a need to re-visit the other two options of a thyroidectomy or RAI.
-the very very small incidence of liver involvement on ATD’s. but it is rather small as time passes. When we first begin them, I am sure the endocrinologists order liver function tests (lovingly know as LFT’s, in the “trade.)Like all of the three treatment choices, the reasons for these choices are all over the map, some of them very personal, but that is ok as long as we have options. There are quite a few posts on this, but you’d have to fiddle around with the words on the search engine.
Brief examples are, “I don’t want surgery if I have any other choices,” “I am afraid of RAI (or surgery) or “I don’t want to take the chance of starting this all over again if the ATD’s don’t work over time.” The last one illustrating your comment about a temporary fix.You got some really nice responses about one eye or two eyes for OD. Sometimes the surgeon has a preference, too.
ShirleyGood morning!
1. Bobbi covered #1 about the iodine. What you heard, is misinformation, except for the situation she so nicely described.2. Just some general comments, addressing your questions and comments as they appear in #2.
I think you know about the two phases of TED, the active or hot phase and the inactive, or cold phase. The most important thing about timing your surgical procedures on your eyes, is to have your symptoms (not changing all the time, but in a steady state) and your doctor’s concurrence that you are ready for corrective surgery on your eyes.
As I recall, and based on what you wrote in this post, (when I am replying, I can’t return to your beginning posts to check anything out. I can see only your recent post and Bobbi’s response, ) you want to get OD’s done before you begin school in the fall. There is quite a bit to check out with the docs on this one, but I feel confident in saying that any MMI dose is totally unrelated to your eye disease TED. So your comment that one does not trigger the other, is correct. Both Bobbi and Kimberly have written, and I would imagine your docs would say the same thing, that there is a ton of information we don’t know about the treatment of TED, and everyone hopes that there will be better choices in the future, but yes, there is enough information to know that TED symptoms can be worse after RAI. Your question about having your corrective eye surgery first, and then deciding to have RAI, is a good one, and I imagine you might not get a definitive answer from anyone. My personal thought, because of my severe TED, is that I would not take that chance. There is not good enough information for me to take that risk. I’d be concerned that even with small changes in TED, after my surgical procedures, that there could be changes I did not want. Be aware that I am speaking from no knowledge at all in this area, it is juset what I would feel. But, it has been stated before, that good management with prednisone, can make a positive difference with increased TED symptoms after RAI.3. I have not heard of anyone who has had both eyes done for OD at the same time, but I bet that has been done. Since you have lots of help, I would ask the surgeon. I realize it would save a lot of time for you regarding recovery.
Both eyes would be covered for several days post op, so you would not be able to see at all.4. Your question about orbital fat is a good one to ask the surgeon. If the orbital fat is in the orbit, when it is removed, your eyes will not be as bulgy.
Removing the orbital fat in the orbit is a much less complex procedure than
working on the orbit itself. My gut feeling is that the fat on your eyelids is a separate eyelid procedure. Definitely a surgeon question.
Regarding insurance, if your docs code it correctly in whatever language the coding is for medical procedure relating to TED, my experience is that all my procedures were covered completely.
Shirleyin reply to: Methimazole: How much is a lot? #1170738Hi emmtee,
Just a thought, but Kimberly’s post pretty much covers it very nicely.
There are so many variables regarding dosage of MMI, but it sounds to me like you have a very good endocrinologist, who is changing the dose based on your labs, and how you are feeling. And that is exactly what taking ATD’s is all about. To get your from that horrible to that “sweet spot.” Your heart rate is down, tremors gone or almost gone, you feel less anxious, etc. Wonderful!
When you feel better, the whole world is better, and you can think more rationally about life, and about further treatment options. I look forward to seeing your next post!
ShirleyHi Sarah,
I certain do realize that when a thyroid is enlarged, for whatever reason, it can be seen visually to be enlarged. But I think that when the thyroid gland is palpated, or felt by the doctor, who then might need to refer to his/her notes about the size, which I hope they have written, this is a more accurate assessment of its’ status.So, probably to reassure your parents and yourself, probably it is best at this time to know that you are in the process of good medical management, and things can vary from day to day. You can call in the next few days, and report that it seemed bigger to your mom, but I would not expect that you will not get much comment from the office or the doc one way or the other. But in the call, you can ask if this is a concern, try to get a good answer for that. I suspect that you will be told that it is very natural and expected to have an enlarged thyroid in Graves’, and it won’t stay that way after you have had your entire treatment plan.
*If your throat feels really “crowded,” or if you are concerned, though, call the office and ask to be seen. Probably your assessment of your thyroid and how you feel,(having any difficulty breathing?) is the best one.
In my own experience, my thyroid was huge. I had the pre-treatment with potassium iodide before my thyroidectomy, and the thyroid got smaller, then had the surgery, and the thyroid was all gone! This was the right thing for me to do.
In conclusion, when we have Graves’, many of us have an enlarged thyroid gland, it is one of the many things that can “go along with the territory” with Graves’.
How are the places where you had the EKG leads? Have they gotten better, stopped itching?? Some advice, which I am sure you have decided to do already. When you have another EKG, INSIST,and make a stink if your are not heard, that you have a SEVERE reaction to the adhesive in the leads, and for them to find hypoallergenic leads. People who do EKG’s are frequently technicians, and may not have the training and medical background
to appreciate that this is a real issue for you. Quite a few people have a little round pink area that goes away in an hour or two. But you are in a different category! You are special!
ShirleyI wanted to be sure that I had the right acronym with the right syndrome, that’s all.
Thanks, Kimberlyin reply to: What to ask surgeon re thyroidectomy? #1169955Hi Rebecca, I just re-read your posts, want to be sure I am up to day.
I do agree with you about the new website, I am not fond of it either. It is better than it was, but I continue to write to them with issues I have had.So, briefly-you had the thyroidectomy. I am not a bit confused why the plan is to have RAI ablation on 3 April. Of what? Are you referring to your eyes? Presume you are referring to your thyroid, but am thinking you just had surgery to remove it in December. Please get me straight on this.
I am SO SORRY you feel like crap. It must end. Your symptoms
Now, your second paragraph that says you saw the nuc med doc who increased your thyroid replacement to 200mcg? Is this correct? But, that is not very consistent with having your TSH completely suppressed, I don’t think. Maybe one of the facilitators and you can straighten me out on this.
I would think that this strict diet would add to the stress you are experiencing. You’ve had the celiac test,and you don’t have celiac disease.
It seems easier than what you are doing, food wise, to eat a reasonable diet, and eliminate wheat for 3 weeks or so. That should answer for you if gluten is a problem for you. Usually, the symptoms people have when they have problems with gluten, are a big belly ache, loose stools, just to simplify the issue. So, I am not sure of your symptoms, or if you have them. You might like to begin eliminating dairy. Don’t eat dairy for 3 weeks or so, see if you feel better than what you felt before. Aside from celiac disease, which definitely requires a major change in diet, with medical management involved, I think it is more of a trial and error thing. If you feel crappy after you eat dairy, don’t eat it, and get some lactose pills to counteract that piece of cheese. Same for gluten and wheat. How do you KNOW you have developed dairy and lactose issues? These are just questions for you think about.
You will be able to save money by living there for a while, and I am sure you will move out when you feel better, are able to work, and you get a place to live that is cuter than the last one.
Do write again.
ShirleyI have heard of the kind of exclusion diet you are on, it seems that it is a fad in the U.S, and everybody and their brother is on it, for no particular reason. Most give it up in a hurry, which to me is easy to understand.
Any particular reason you are off sugar?
A comment-I am pretty sure that 24 hours is not enough time to evaluate anything related to adding or subtracting a food.
I realize that your surgeon is the one who has turned you on to this, but generally speaking, it is not in the ballpark of knowledge and experience. I’d think a good dietitian might better serve you.And the very first thing for you to consider, is if you have symptoms,and what are they.
Re constipation. I am wondering if this has always been a problem for you. It has been for me. I have to really watch it, eating tons of vegetables, bran and stuff, drinking lots of water, and sometimes taking a stool softener regularly, like every other day.Regarding your TED, it really pretty independent of your Graves’ and doses of thyroid hormone will not impact the course of TEd one way or the other.
Everything I have rambled on about here, you can check with you doctors.
I just hate to see you on this brutal exclusion diet with all the stress you ahe been having, with job, moving with parents, and of COURSE that is tressful for everyone.Kimberly-were YOU referring to renal tubular acidosis? (RTA) in your post.
I could not find the initial reference to it in prior posts, and still have no idea if this is the topic. I know about it only because I worked at a nephrology clinic at one time. Just wondering.
Shirley -
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