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in reply to: OK now what…RAI Seriously??? #1173295

I agree with:
go with your gut.
Shoulds and oughts are hard to live with. Pleasing other people who decide your health care for you based on anecdotal is not a good choice.
YOu have choices, so given all the options, opportunities, pros and cons,
I think you will feel so very good once you have MADE your decision!

REad the posts Alexis wrote while she was struggling with this. Plus all the rest of us. Limbo is very difficult.

I have a bias about saying “TED and RAI” in the same sentence. I have had a terrible time with TED. I am sure that if I had any changes in my eyes, I would want to stay away from RAI, prednisone (which I hate) or not prednisone. I wouldn’t want to take that very small chance. There are not years of research about this, but there is some evidence that says RAI can exacerbate TED.

I had surgery! Many decades ago. More than four.
Happy that I had surgery.
Shirley

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in reply to: Lab Results help? #1173282

They know you have a right to them, too! Sometimes it is difficult to get the record as you walk out of your appointment, because depending on the system they are using, they might need to dictate the visit. Or, they might have entered in the computer during your visit. It is absolutely right that there will be mistakes. Just think of any conversation you have with anyone. There is plenty of room for making assumptions, misunderstandings, more and more.
But, they definitely need the paperwork that I mentioned in my previous email. That is part of the HIPPA, privacy information act, so you have control over who has your medical information. So you are the boss of that (except insurance companies, and a few other legal exceptions)
All for now. Arrived in Sun Valley, it is beautiful here.
Shirley

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in reply to: Lab Results help? #1173278

Hi, I think you have listed some very good possibilities in your last post.
I know the nicotine patches increased heart rate, and generally rev you up a bit. So that makes perfect sense. Same with caffeinated beverages. And you know both these things, too.
I do think there is a lot of logic to what you have said. It makes a lot of sense that your heart rate accelerated, that you had some palps (also called PFC’s)

It sure would be nice if your doc would have a collaborative discussion with you, show some interest in your thoughts.

Re liver damage, that is more of a lab to watch when an ATD is first initiated. You’ve been on them a couple years, and I’m thinking that it is fine to wait until September for you labs and appointments. If you can make this happen, do the two following things:
-call the office, ask to have the lab requisition ready for you to pick up. Get your labs ahead of the office visit so you have something to discuss.
-also, say something like, “i’m just checking to be sure that the liver function panel is on this set of labs, for it is time to have it drawn and it will save the need for another lab draw.”
Another suggestion is for you to sign whatever medical release form they have in the office (and they required by law to have them) At the part where it says where you want the records sent, you write “myself, for my personal file,” and write your name there. Provide your address, etc.
Where it asks you what you want sent, write or check “all labs, dictated office visits, procedures, and other tests.”

The above may be redundant if you are already doing all of it. In my world, I get copies of everything, and I can access my entire medical record at two of the facilities. When you read them, you find out all kinds of interesting stuff, including, misunderstandings, inaccuracies, and things that need clarification from you.

Congratulations on the smoking cessation. I am so very proud of you had happy for you. I know several people on the forum have quit, including Kimberly, I think. It’s big stuff. It is quite amazing how you can tell a smoker when you are not a smoker.
Do write again! And…how do you feel now?
Shirley

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in reply to: I need help in Canada #1173264

I am pretty sure I remember a couple people from Canada in the fairly recent past. Try putting Victoria,B.C. in the search engine. I think one of them is from there, and mentioned it in a post.
Shirley

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in reply to: Positive attitude #1173246

Hi Jules
I don’t disagree with anything you said. Your posts are marvelous of only in content but also style.
I did want to affirm to all of us that there are times in our graves’ and TED world that feeling discourAged is ok. On plane gotta go

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in reply to: Concentration/problemsolving/tests #1173029

Rapunzel, you are one cool person! Along with so many others in this forum!
The very best to your with finishing up your dissertation. From my own experience, I think I can tell you that the orals are NOTHING, compared to the prior years. No matter who is on your committee, you know more about subject and design of your study than anyone assigned to your committee!

How ’bout registering for the Graves’ conference in San Diego the end of October? I think you’d enjoy it. I think everyone on the forum would really love it if logistics, timing and finances allow attending this great meeting.

Thank you for your comments about Jules Stein and your OD. Did you have diplopia (double vision) after your OD?
I have a very colorful history of TED. I know the incidence is moderately common, and i am not sure I could handle that again. I have already had strabismus surgery for terrible double vision. The result was wonderful.
My issue is closing my eyes. And it IS an issue at night.
Shirley

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in reply to: Positive attitude #1173242

YEP. I agree all the way with your post. When you mentioned the experience you had with the relative, that is the major point of my post. When a person is plainly stating that they are hurting and discouraged, it really is not helpful if what they said and felt is pretty much not regarded with respect, and the substitute response is to tell them not to feel discouraged. That can be very hurtful. Then we are in the position of feeling sad, guilty and disappointing people. Very big burden to add to whatever the difficult situation that we might be experiencing. It’s really hard to have to leave a group game because my eyes are so painful. I think I have done a pretty darn good job at minimizing the stresses that I have, and trying not to impact others. But when I was at my most hyperthyroid, with a new baby, and every single negative thing that Graves’ can dish out, I did NOT have a positive attitude. My life was in a shambles, I had to struggle to be a rational wife, co worker, parent and more. I was SICK. That was a particularly bad time to be told to have a positive when I was such a sick 24 year. And, be thought of as crazy, which I am sure that is how others regarded me, and I regarded myself the same way. Because I WASN’T MYSELF. I was a completely different, sick, hyper, argumentative, thin, sleep deprived person.

I want to continue to support anyone reading the forum that there are times when even finding the coping mechanisms to FIND or act on things that might help us have a positive attitude, are simply not possible at certain times in our illness. But it sure is helpful to know that others UNDERSTAND what this is all about, and have experienced it, and there IS hope to feeling better and regaining our old selves with treatment and support.

OK Enough. I have a really positive attitude about being positive! When I tape my eyes closed at night, which is a chore, I can feel happy that I cannot see a darn thing, for I might see something unpleasant. But I sure would like to be able to see the way to the bathroom in the middle of the night!
So every night I don’t fall and break a bone, I can be positive that I did not fall! Sick humor. But it works.
Shirley
I think a much more helpful and supportive response, at least for me, is to acknowledge that what I am experiencing IS difficult. I felt very reassured and supported when I get that kind of a response. When people tell me that they can’t IMAGINE having to tape their eyes closed every night, it helps me say that I could not imagine such a situation either-ever-until it happened to me.

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in reply to: Labs After Thyroidectomy #1173252

Hi Alexis, yes, I find it a bit of a puzzle, too. i prowled around, looking for evidenced based discussion on the reason to draw a free T3. The first five screens were all chat sites or supplement sites, selling supplements.
Then I googled, “is Free T3 necessary, or does it give good information, to manage thyroid hormone replacement. Then I added Mayo Clinic, NIH Endocrine site,and the University of Michigan endocrine dept. thyroid disorders.
The Michigan site was good, but did not state much about labs and long term management.
So-short answer is that I don’t know why it is/is not ordered, or even the varying thoughts of endos regarding this this. The one thing that I did read was that it was another helpful indicator when first diagnosing hyperthyroidism.

I may have missed some reference that lays it all out for us.

But regarding you-that is a puzzle when you don’t really feel well, but you really do not feel hyPO,your TSH is leaning in that direction, yet your other labs are within normal range. Generally, weight gain can/does go along with hyPO. I don’t know about headaches one way or the other. I think the other compounding factor is, that unfortunately, the darn time needs to pass, until you have a clear picture of either your symptoms or your labs. It been only
6 weeks since you began your meds, and I suspect when you began them, you probably still have some thyroid hormone circulating around after your surgery.

Not sure what you are referring to by the endo not wanting to prescribe a natural hormone supplement at the beginning of this. But I can say, that consistency over time, with whatever you are on, is the most important thing for you right now, and probably in the future.
If you are referring to Cytomel, that could really muddy up your picture at this time, for it tends to appear in a big burst pretty much all at once, and does not at all mimic what our respective bodies did, before all this madness began for us.

Since I referred to you in my last post, regarding positive thoughts, take a look at it sometime. Was not sure how soon you’d go back there since you just posted.

And-I guess you might be stuck with waiting and waiting to see if anything-you or labs, show enough changes, for better for worse, before any dose changes would be warranted. It is very frustrating.
Shirley

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in reply to: Positive attitude #1173239

Hi, this is Shirley, the devil’s advocate, addressing the subject of having a positive attitude.

I do not disagree with any of the posts in this thread. They are lovely. I do think it is helpful to ourselves and others to try to continue to “soldier on” when faced with physical and mental adversity and challenges. Graves’ and TED, along with so many other health issues, certainly qualify as situations which are very difficult for us, for others who know us and love us, and for our work lives.

However, there is still room, and it is “OK” to feel discouraged, depressed, overwhelmed. Tales of doctors and other health providers who are uncaring, unfeeling and sometimes incompetent are based on validity and truth. There really are people who are doctors who are not competent. This situation exists in every field you can name. And sometimes we are the very unfortunate products of their incompetency. It is really difficult to feel good about this, when your life has been changed negatively forever. Or even for a long period of time. I simply want to say this, to basically “give permission” to people everywhere, and possibly on this forum, that having a positive attitude is sometimes impossible to do in certain situations.

I am not implying in any way, that a positive attitude is not a good idea. It is a good idea. Having negativity rule our lives limits us.

But I am emphasizing that it is really true that bad stuff can happen, and there are times, as Alexis alluded to, there are times in our lives when it is very difficult to feel positive about sleep deprivation, headaches, plus multiple other infirmities. There are physiological and psychological limits that limit having a positive attitude.

In my own experience, I have had a snoot full of an overkill of positive attitudes related to real physical health problems. Both as a health care provider for over 50 years, and as a consumer of health care.
In many situations, especially in some cancer environments, having a positive attitude is elevated to a message that a person “got” cancer related to NOT having a positive attitude. Or, someone with a stage 4 glioblastoma, “should” and “ought” and will, feel better, if they have a positive attitude.

I realize that there is a lot of room for a firestorm of criticism of my post.
To reiterate my initial thoughts, I firmly support that having a positive attitude is a good thing, and very helpful in hourly and daily living.
I simply wanted to be sure that people who feel discouraged, who are downright depressed about their situation, do not receive the message that they are “bad” if they have not achieved having a positive attitude.
Sometimes, when your world and your life is crumbling around you, it is not possible, and that is OK too. You have not failed.
Shirley

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in reply to: to those who had OD-did it help you a lot? Glad you did it? #1173219

Hi John,
I’d guess the exhaustion is not related to TED. Unless the ongoing two year plus stress of vision has pretty much drained your gas tank.

I don’t recall your Graves’ status. Are you on a thyroid supplement now?
I guess the first thing I would do is have my thyroid lab panel checked, then when you have that, plus maybe having hemoglobin and hematocrit, check with a doc, see if any med can be tweaked.

How long has the fatigue been going one? The other reason is that the anesthesia from having the OD, plus the recovery, pretty saps people for a few weeks. You are only two weeks out from that, too.
Shirley

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in reply to: to those who had OD-did it help you a lot? Glad you did it? #1173215

To hoochie,
What material was used for your lower eyelid surgery? Graft from palate? From ear? Or artificial material?

To socalguy,
I had my strabismus surgery AFTER my OD. That is not the sequence that is recommended, but I had to have the OD in active phase to relieve pressure on the optic nerve. I had severe double vision in three fields, both eyes, before and after the OD. No double vision caused by the OD.

Then a few months later, I had bilateral strabismus surgery, which completely got rid of all double vision in all fields. I do wear prisms in my glasses, but I do not have double vision with or without them.
It has been my experience that oculofacial surgeons do not do the strabismus surgery. I went to an eye doc who had a large pediatric practice, did many of these procedures on kids, and of course, the “special population” of adults with TED. It was a wonderful, successful surgery and The easiest. Have you had this discussion with anyone? I don’t see any reason why you should have to continue with any double vision if you have the strabismus surgery.
Shirley

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in reply to: to those who had OD-did it help you a lot? Glad you did it? #1173213

John! Thank you so much for replying. I found the strabismus surgery I had the most wonderful event in my TED life. At this time, after all the procedures I have had listed below, it has been suggested that I would profit from a 2nd OD on my left eye, plus a first one on my right. It is not my appearance that concerns me, it is the inability of my eyelids to close when I sleep at night, and the large amount of exposure (still) of both eyes, despite upper eyelid surgery to lower them (I can’t tell the difference) and completely failed surgeries to raise the lower eyelids. Plus complications with the grafts sites from the palate not granulating in 10 months later!
***What procedure, and what material, was used in your LOWER eyelid surgery to raise your retracted lower eyelid? A repeat procedure of that surgery has been proposed, but with an artificial graft this time
Thank you so much.
Shirley

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in reply to: Orbital decompression is a go #1173119

QUESTION FOR SOCAL GUY. Can you tell that your eye is a lot less prominent after your OD? Can you see a difference?
Thanks, Shirley

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in reply to: I don’t think the Prednisone is working #1173201

I agree with all that gatorgirly said. Big points are:
1. Your endo is NOt the doc to be treating or diagnosing TED.
2. The eye doctor is. PROVIDED he/she is familiar with TED, and has treated it.
3. The two are separate subjects. TED and Graves’.
4. I had prednisone for TED, too. 60mgm for a month with a long taper. It helped a little bit, as soon as it was tapered, the improvement was gone. BUT it relieved pressure on my optic nerve until I could have surgery-which is done in the active phase if we are losing our vision. Otherwise, all surgery should be done in the cold or inactive phase.
5. Repeat. Graves’ and TED are different. Treated by different doctors.
6. Stopping prednisone is DANGEROUS. It has to be tapered, taking smaller and smaller amounts over many weeks. Usually 5 mgm at a time . Please do not stop it abruptly.

Maybe our posts will help you with questions.
Hope so. Do write again.
Shirley

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in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173050

There is one in San Francisco, maybe tomorrow.
But I am referring to the one in San Diego in October. There is information about it on the home page. If it is at all possible for you to attend, I encourage you to come. I went two years ago when my TED was raging, and I was so so discouraged. The attendees you meet (familiar names on the forum, the opportunity to meet the facilitators, and the great opportunity to meet with the doctors, makes it a great event.)
Shirley

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