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in reply to: Questions regarding Graves’ & TED #1061557

Hi, TED came into my life a couple years ago. Welcome to this wonderful forum! It is so supportive, and has accuracy and support that is wonderful. So glad Ski has written to you. I don’t have a ton of time right now, either, but will write more extensively later in the day. She is "right on" about the hormone replacement. So I suggest you do not consider any other form of addtional treatment or substitute. More about that later. Basically, after you RAI, you had little or no thyroid hormone, and the plan has to be to replace it in the right amount for you, your body. That is determined by how you feel, plus thyroid [b]labs[/b]. If there is any dose change prescribed an endo or primary care doc, you must wait at least six weeks, 8-12 weeks even better, to have labs that accurately represent the amount of thyroid you have for your body.

Re TED, short answer for right now. Do you have access to a neuro-ophthamologist, and/or a regular ophthamologist (not optician who can do some preliminary tests to see if you have TED? As Ski said, TED symptoms are all over the map. TED generally runs a predictable course of active (or hot) phase, and inactive (or cold phase.) In TED, antibodies are made to specifically attack the eyes (in very rare instances, the shins of legs) When you see the eye doc, think about any other symptoms you may have–light sensitivity, more tears than usual, dry eyes, double vision, to name a few.
There are lots of treatments for TED, most of them occur when the active phase is done.
When you say you have TED in the left eye, what do you mean? Do you mean it looks bigger, or that is bulging a little bit?
At any rate, you have hope, we will slug through this with you, and I hope we can get you to a place where you will begin to go out more. You can have a social life, good friends. I am the first person to say that TED has been very hard to have.
But it gets better.Shirley

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in reply to: Virus and then Graves Disease #1061581

Hi,
I think the biggest thing for you to know is that you are changing every day, and reporting symptoms and changes to your endo are critical right so endo can regulate dose of both meds. The propanolol slows the heart rate, that is the purpose of this drug, so that your heart is protected from beating too fast. You still have already produced thyroid hormone circulating, so the ADTs help you gradually. When that residual is gone, I am hoping more of your Graves’ symptoms disappear. Keep in close touch with your endo re the heart palps. He will need to know where your are with your heart rate, he might want to reduce the prolanolol a little bit. It is all a balancing act, and a lot of it is you reporting all symptom changes to the endo so he can know how to regulate your dose of both meds.
Shirley

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in reply to: RAI vs Thyroid surgery #1061661

To Candi-All my docs say that antibody level does not affect treatment decisions in any way.
Sometimes these tests are used to confirm what they already know, ie, that you have Graves’, that TED has occurred.
So probably you should ask endo what he/she thinks the antibodies indicate. I imagine the answer will be that you are making more antibodies! If the ATD’s aren’t helping you like they used to, it could be that you are getting hyper again, and your thyroid labs don’t reflect it. So your symptoms and how you are feel are super important to report. Also any eye changes, and if they are happening, you should probably have a baseline appointment with a good neuro-ophthamologist.
In conclusion, discuss this with your doc, he may say something different that my docs.
Shirley

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in reply to: Looking for the light (Introduction) #1061606

Just a quick not tonight, my eyes are too tired to write. Glad you lurked, and delighted you have decided to "join up.’ I really do not know what I would have done without this board. Go to bed knowing that you have a lot of new friends, great facilitators, and that you will "smooth out." You have had SO MUCH EXTRA stuff on your plate, with pregnancy, ectopic, and much more. I can SO RELATE to being sick of being sick. Me too. Graves is ok now, i feel good but labs may always be whacky. TED is my issue, which is why I have to go to bed right now! Several of the facilitators have had RAI, you’ll be hearing from them, plus many others!
The search engine is great, too. I used it a lot in the beginning.
Shirley

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in reply to: question about medicine again #1061622

Hi, I am sorry this happened to you. It seems that you had gone through all the decision making process, maybe even had a surgery date, possibly met with the surgeon, and now this! Knowing all this, I don’t know why your endo suggested taking you off your drugs.
As Kimberly and Bobbi said, and I think you know, that you need to way to be out of your hyperthyroid state, so certainly you are doing the correct thing by going back on your meds. Primarily, because you get hyper fast, and you KNOW that is not healthy. Dealing with the immediate situation, are you back on a beta blocker, too? Or just the ATD?
I am concerned about your heart rate, what is it? If it is over 120, you should go to an ER. Or call your endo and ask for a STAT (immediate) call back within 10 minutes, so he can call in an RX for a beta blocker that you can take in the next hour or so. Fast heart rates can be dangerous if they continue and increase. I presume you are aware of all of this from your first experience with being hyper.

I’d like to say a word or two about surgery. I don’t think any of the facilitators have had surgery, so I think I can speak to it very well about my experience if you are interested. There are some great posts about others’ experiences, too. It was an excellent one, and I liked my choice a lot. I wanted the thing OUT! I liked it because it was as fast as answer and resolution to my hyperthyroid state, and I also became hyper with the withdrawal of the ATD’s and beta blockers. As the facilitators have said and reinforced many times, the choice of the three options is yours. With very few exceptions. And there are some great posts about this subject, too. People choose different things for different reason, and sometimes, when ATD’s stop working, and/or when a person becomes hyper with a vengance when they are withdrawn, as happened to you, it is back to the drawing board, and the choices still belong to the patient.
Be aware that taking the potassium iodide drops is a routine prep for this surgery. You can talk to the surgeon about it, but what it does, is reduce the vascularity of the thyroid gland. There are many surgical procedures that have different preps for different reasons. This is a prep for this surgery.

I am responding to your email without knowing some of the evolution of how you got where you are now with the withdrawal of the ADTs before surgery. I am interested if you did see the surgeon. Did you have a surgery date? I am asking because you said you had your helpers lined up for post op period.

I sure hope you bounce back fast from being hyper, so you can proceed with the decision you made for surgery.
Shirley

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in reply to: Does thyroid removal stop the formation of antibodies? #1061644

I welcome further comments on my view on antibodies. Realizing that the very good responses were addressing questions about antibodies, I’m adding more thoughts to the antibody issue. Since there has been so many questions, and so much discussion about antibodies on the board lately, I would like to remind people that thyroid antibody labs are not the labs that guide treatment of Graves’ or TED. Certain thyroid antibody labs can be one help in identifying Hashimoto’s which is another thyroid disorder.
But aside from a few autoimmune disorders, including Graves’ antibodies are our friends, and they are the guys who attack foreign bodies, viruses and bacteria to keep us healthy. So, in general terms, antibodies keep us healthy, they do not make us sick. There are unfortunate exceptions, to name a few, Graves’, diabetes, Crohns and celiac in some instances, the immune system regards a part of our body as an enemy, and attacks it.

The two variables that helps our doctor and us manage our Graves, are:
-our clinical symptoms, how we feel
-Thyroid labs, which include TSH, T3, T4.
with the accompanying treatment of ADT’s and beta blockers when first diagnosed, followed by the long term management of:
ADT’s, RAI or surgery, accompanied by thyroid replacement with the latter two.

I have had quite a bit of experience in reviewing proposals for clinical trials, and a fair amount of experience reading clinical trials. I did this as a layperson and community member. Plus, I have what is (politely called) and "inquiring mind!"
I read the study Kimberly mentioned by Laurberg, and I immediately thought,"well, that would be MUCH more interesting and meaningful in the academic circles if they had another group, a control arm of the study, of people who did not have thyroid disease at ALL! And compare them with the other groups.

Regarding another post, I’d like to weigh in here as a person who was very happy choosing surgery, or a thyroidectomy for my Graves’. As Ski mentioned, most of us reach one of the three choices for our own personal reasons.

But I would suggest IF there only method to treat Graves’ were surgery, people would not be horrified at this choice, but then, as now, would be looking for relief from the horrible hyperthyroid state that had changed our lives so drastically.
They would be very happy that there was a way to get out of this miserable state, as I was.
One great thing about this site is that there are so many posters who reflect being very happy with whatever choice they made regarding management of this darn disease. Some of us would never consider RAI, for reasons rational or irrational or practical. Some of us feel the same way about ATD’s and would not choose that as a long term treatment. And the rest of us would never choose surgery.
Shirley

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in reply to: How many of you are happy with your total thyroidectomy? #1061636

Hi, I certainly did intend to mention Ski when I wrote my last email. And she has a great post about thyroid antibodies just posted recently to Erica, so that may be very helpful to you. It is a nice summary and addresses their relevance and their function.
Shirley

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in reply to: How many of you are happy with your total thyroidectomy? #1061635

Hi Erica, I think Bobbi and Kimberly will give you a more complete answer about antibodies. They know more than I do.
There has been a lot of discussion about antibodies on the bulletin board lately. My quick version of antibodies and how much these labs matter, is pretty simplistic.

SOMETIMES antibodies are drawn to confirm a diagnosis which is already pretty much made by the signs/symptoms of Graves, plus thyroid labs TSH, T3T4, of Graves disease. There a couple selected lab that do help the confirmation of Hashimoto’s.
But in summary, antibody testing does not guide treatment of Graves’, Hash or TED. Even in normal people, they tend to fluctuate. Some of the antibody testing is so new, that reputable labs have a note on the results saying that they are note sure what they indicate, nor are they sure of the ranges they present.
So really, in terms of your life, how you feel, and the relationship of having a thyroidetomy, they simply don’t make any difference in treatment of any of these three conditions. Many docs and more insurance companies balk at paying for these test, cause they pretty much know the same thing. If a person want them drawn, and the doc will order them, and the insurance will pay for them, and it is important, some people will succeed in getting these tests. i think doc and insurance companies will balk at repeated tests, for the reasons I mentioned above.
1. They fluctuate anyway.
2. They do not contribute to the treatment.

Having said all this, when the clinical picture is really confusing (being hyper and hypo) there are a couple of the tests that can help diagnose (not treat) Hashi.

Regarding antibodies and surgery, yes, when the thyroid is gone, and we are making antibodies that attack the thyroid, there is no thyroid left to attack. But I am pretty sure that if they are high or low, other than knowing this, the information is not helpful.
Of interest, I had surgery, and I was very happy with my choice. It was a personal one, for I did not want the possibility of ADT’s not working at some point in time, then being faced again with a decision of "what to do" and I did not RAI cause I didn’t want it, plus I did not want (what seemed to me) a very long wait to get regulated after RAI. There are others on the board who are totally happy with ADT’s and RAI. There is not right answer except what you want, with the exceptions you mentioned in your post, of course.

Reading your post, I see that you feel antibodies are making you sick. Not sure what you mean by saying you are sick. Do you mean the same long lasting dumb respiratory crud that has been around this country for the last six months? Do you mean Graves’ Or something else. I am not sure if you can come to this conclusion that antibodies are making you sick.
Basically, antibodies are our FRIENDS! They neutralize toxins, our bodies manufacture them to attack bacteria and viruses, and they do an essential job to keep us healthy along with T cells and B cells.
In Graves’, for reasons nobody knows, instead of attacking a nasty bacteria or virus, the immune system decides our thyroid gland is our enemy. That is kind of a silly way to explain it, but that is what is going on.
So if you do decide to have antibodies tested after your thyroidectomy, there is not much to do with the information. Treatment will not change.
Shirley

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in reply to: New here. My journey with Graves #1062212

Are you feeling better?
Shirley

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in reply to: eyelid surgery #1061655

Hi, I am currently considering a second surgery one my left upper eyelid. I am having a very challenging time finding information on how the outcomes are for people. If you have any suggestions on exploring the complications, pros and cons of a second eyelid surgery, let me know. I am also trying to explore the REAL outcomes of palatal grafts to lower eyelids. The surgeons simply say "you need both of these procedures." and that is pretty much what I am told.

From my own experience, which might be a bit biased today, because of what I said above, plus being an RN for many years, I have questions about scar formation, etc. But I REALLY do not know a thing. I suggest you ask your doctor what could go wrong, as well as lowering your eye 1mm. Then tell me! (:
Shirley

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in reply to: Need some suggestions I have TED …. Help?? #1061664

Hi Des, I (and my eyes) are too tired to write much tonight. I am going to talk mostly about eyes. I have had similar experiences. Clearly you have already had contact with oculofacial surgeons when you had your (it sounds like bilateral) OD’s (orbital decompressions) to relieve the pressure on your optic nerve (s.) I had the same experience. I had killer double vision before and after the surgery, but it was the active phase of Graves’. The prisms did not help me one bit. I tried several different strengths, and gave up. Lucky you if they help a little bit with the double vision. I suggest if they don’t help, don’t bother with them. During all of TED, I have been seeing a neuro-opthamologist, an oculofacial surgeon and an ophthmalogist who does strabismus surgery. Double vision is a complication of OD, but is also part of TED, with severe cases.
But the main message I have for you, is that double vision can be "fixed" pretty well.
I tried to use the website Ski mentioned, but I am unable to have any success with it. I never have. But I think you are best off to ask the doc if he is the one who would do the strabismus surgery, or if he plans to refer you.
But I can tell you that it is not an oculofacial surgeon is NOT the one who does strabismus surgery. Usually it is a pediatric ophthamologist who "does" adults, and it is usually adults with TED. They do this surgery frequently. But the same docs do NOT do OD’s. That is a different specialty. Before you have strabismus (eye muscle) surgery, sequential measurements are CRITICALLY important,and it is these measurements which give the strabismus surgeon the best information on how much to move the muscles of your eyes to achieve single vision. Don’t worry about that, it means you are in good care. In my case, I went to this surgeon all the way through TED, active and inactive (hot and cold) phases. I had to be patient, which I wasn’t, until I reached the inactive phase, meaning my eye measurements were not changing every week or so. The doc can’t do the strabismus surgery then, for he/she can’t rely on the measurements being stable. So if he corrects for strabismus (and no doc would) in the active phase, and you get single vision, your eyes could change again in a couple months. What this surgery does is to move the two places where the muscle attaches, with the goal of single vision. My double vision was forward and up. I could see down just fine for my superior eye muscles (which control looking down) were not very fibrosed (enlarged, less elastic) as my lateral and inferior muscles. THIS IS MY FAVORITE SURGERY. It is easy, and the double vision is hell. I still don’t know what a normal head position is,a nd still have cramps in my scalp, neck and back from tipping my head to try to see a single image.
My main problems are, a complication from my OD which resulted in my being unable to close my left upper eyelid. IT drifts open during sleep. AND, extreme photophobia, and eyes that tear constantly, blurring my vision.

Gotta to go bed, rest my eyes. Will write later tomorrow
shirley

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in reply to: Lost…. #1064991

Hi airborn, I don’t have a lot of time right now, but I did read over the thread of posts, including my own.
In summary, Graves’ and TED are different. Some us are hammered with both situations, myself included.
My TED has been fierce. You will see at the bottom of this post the surgeries I have had. In brief summary, I think you should be seeing a neuro-opthamologist, their great purpose is to do some color testing and visual fields by the machine (not y wiggling fingers) If it does get crowded around the eye with swelling and bigger muscles, there can be pressure onthe optic nerve (as happened to me.) One of the first signs of that is seeing a difference in colors, and the first color to look more dull is red. This does not happen to many people with TED, but if it does, there needs to be more room in the ornit, so the optic nerve is not compressed permanently, which results in loss of vision. For this, I had an orbital decompression to make more room in the orbit and take the pressure off the optic nerve. I also had a left field cut (blind spot) in my left eye, which I did not even realize I had.

Regarding strabismus- I had double vision looking ahead and up. Terrible. Over the time I was seeing the neuro/ey doc, I was also having measurements at the eye doc who does strabismus surgery. Determining when the active phase (when eyes are changing every day) to the inactive (cold) phase is kind of a crap shoot. But basically, when the measurements remain somewhat consistent, then it is time for WONDERFUL, MARVELOUS strabismus surgery!! It is an easy surgery, frequently the docs who do it, have a large pediatric practice, too, for lots of kids have strabismus surgery if they need it.
YOu need to find one who "does" adults. He moved the muscles of my eyes, so that I could look ahead and not see double. I can look up about 40% and see a single image. It is much much better. Some of these offices have a new machine called a Hess screen test to measure the diplopia (double vision) to get as accurate measurements as possible wehn they do the surgery. Here’s a reference. http://aoj.uwpress.org/content/56/1/166.abstract

But my big thought for you is that surgery is a wonderful option for double vision. And prisms helps some people too. I con’t know where you live, but if you tell me, or send a PM, i will ask my docs in Seattle to provide a couple names for your location. they all see each other at meetings.
Sorry about the smoking. There is not much doubt that it exacerbates TED. Maybe when you see some improvement in your eyes, you will stop again. IT is a tough thing to have this monkey on your back, I am sorry. Any help can get with that is probably a very good decision for you to consider.

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in reply to: Ocular Migraines #1061681

My daughter has similar migraines, usually pre-menopausal. She does not have Graves’. Have you taken any med in the past that helped you? Yes, I think you should keep track of the frequency, intensity and duration, and if they continue, see a neurologist. But it sounds like you had a pretty good work-up in the past. I am guessing the nurse checked with the endo before she called you back. But you have had a ton of changes in the past three weeks. Maybe you will hear from others about this. My daughter finally found a good med, and if she takes it when she senses one might be coming on, it helps a lot. They can be very debilitating, and she always carries a pill or two with her. Maybe the neurologist can help you with this if it continues, or your endo or family practice doc.
Welcome to this club that we all do not want to join.
Shirley

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in reply to: Hi Everyone #1074207

I have not idea. Probably a patient who had RAI told a nurse at some time that sour candy helped her ??(throat, appetite, whatever…) If you like it, eat it, if you don’t, don’t. Sounds silly to me. I hope people who have had RAI check in with you, but I would be mighty surprised if any of them have heard this little piece of advice before. Do what you want!
The time will go fast, and you will be snuggling your nephew very soon!
Best, Shirley
PS I hate this disease, too. Probably TED has impacted my life more than Graves’, and it still is ruling my life.

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in reply to: Hi Everyone #1074208

I have not idea. Probably a patient who had RAI told a nurse at some time that sour candy helped her ??(throat, appetite, whatever…) If you like it, eat it, if you don’t, don’t. Sounds silly to me. I hope people who have had RAI check in with you, but I would be mighty surprised if any of them have heard this little piece of advice before. Do what you want!
The time will go fast, and you will be snuggling your nephew very soon!
Best, Shirley
PS I hate this disease, too. Probably TED has impacted my life more than Graves’, and it still is ruling my life.

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