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in reply to: Getting Through this.. #1170051

Hi Supermom.
Well, one thing to put on your list of things to DO, is make the arrangements we talked about before, to get your labs done before your visit. In a generic way, this involves simple stuff and steps.
(have you arranged to get hard copies of your labs and visits yet?) If not, check with the front desk, sign your permission to receive your records for your own file.)
1. Ask what the procedure is to get your labs done before your visit. Ask how long it needs to happen for them to have the results.
2. i am sure they don’t care. I usually take the labs slip home from the last visit for the next lab.

You has asked before about understanding ranges and why they are important.
The labs require a bit of thinking about, and there are certainly numerous prior explanations by the facilitators on the site of what that mean. There are so many really good descriptions. In your last posts, you haven’t said how you feel, and decisions about whether to increase or decrease meds for you, are based on both things.

you are taking these drugs right now to block the crazy overproduction of thyroid hormone, to decrease your heart rate if it is too fast which is a 2nd drug called a beta blocker, usually propanol) and the methimazole by calming down the stimulation that makes too much, which, in turn, gives us all the symptoms of Graves-ie, we are hyPERthyroid.
The docs have to begin someplace, with a dose, and it is very likely that it will be increased or decreased, depending on labs and how you feel. I would guess, and it is a guess, that your probably feel better since you have begun the meds, perhaps less crazy and less hyper-and maybe now, you could be feeling more tired, but feeling better overal. Once you get to the spot where you are not hyper or hypo, then you will be having discussions (of which there are good articles and excellent discussions on the board) to complement what your doc is telling you…about how to manage your Graves’s long term. There are three choices, and I am not going to go into them now, for they are well covered from here to Sunday, so take a look at some of the other conversations when you are ready.

Since you are going to live with this for a long time, I suggest at the next visit, you get explanations from your doc or someone in the office you know understands Graves’.

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in reply to: orbital decompression #1169713

hi Hope, how are you doing after your orbital decompressions? I was thinking about your comment about eyelids. I am wondering if your eyelids will begin to be less edematous, now that your eyes are not popping out of your head!
It will be easier for them to be more natural, therefore I hope your eyelids are less swollen. And, regarding eyelid surgery, i think that the results are usually excellent for the upper eyelids which are retracted, and I have learned that it is a pretty easy fix if they are lowered too much. For the lower eyelids, well, you have heard my saga. But I know two people who have had marvelous luck with lower lid palatal grafts, and it really helped with their return to looking normal.
Anyway, your thought have meant a lot, thanks for continuing to write as we slug through this disease.
Shirley

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in reply to: Eyes do not close-need all suggestions, especially for sleep #1170220

Kimberly and hope1,
I wish i had a little hope right now. At the beginning of the week, I will explore the barrier options for my eyes. One of them is burning and hot, day and night. I feel that with the recent palatal grafts, both which failed, i have run the gamut of procedures to help me. Plus my graft site which is not healing, and tissue has been removed down to the palatal bone. This is regarded as very serious by the dentists I am seeing at Faculty Dentistry. I am being watched very closely. The surface of the bone is necrotic, thus no granulation can occur. All very discouraging. It seems to me that any repeat procedure creates more scar tissue and more problems. I am VERY uncomfortable. I really don’t want to live like this, but when i say that, I mean I would like to find a compassionate and skilled physician who can help me so i am not living with all these issues. I felt the same about double vision. i had the surgery, and the world changed in the best way possible.
I hope to find another doctor who will be interested in my discomfort with my eyes. And I sure hope my mouth heals, i am entering month #4.

Question
Kimberly, when I go to the site for the articles you references, I can get only
the abstracts. Kimberly, when i click the cursor to begin a new line, (like after the word “experience” the cursor will only go to the beginning of the line, which fragments my typing. The sentence, “” Is that your experience?” originally after the word “abstracts.”

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in reply to: Eyes do not close-need all suggestions, especially for sleep #1170216

Hi hope1,
what a joy to check the forum and find your reply! i will, post haste, send for the Nproduct you mentioned. I am assuming that they are one time use? Or can you squeak two nights out of them? They sound wonderful-to me. Thank you so much! I wanted to briefly acknowledge your post, and thank you so so so much!
Not that I would wish this situation on anyone, but it is also comforting to know that I am not entirely alone with this issue. Now, to the website. I’ll write again.
Shirley

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in reply to: RAI vs. thyroidectomy #1064431

Hi ganstabear, Ski’s suggestions are good, so making a list might be something you want to do.
If you have not read my posts on my happy experience with surgery, I suggest they might be helpful. As someone with TED, if I were making the decision, I would not do RAI, period, whether my symptoms were mild, moderate or server. Yes, you could be given prednisone, and it would improve TED symptoms while you are on it. But TED will run the course of TED, and when the prednisone is finished, the symptoms return. It’s kind of a temporary measure to protect your vision, and give some relief.
Finally, it sounds to me like you have made your decision, that you want a thyroidectomy. So, next step is to talk to enough people to find a surgeon who does them regularly, a good number is 50/year or more. Best wishes with your decisions.

And, if you have not read my posts and and lhc11’s post about having the surgery, I recommend reading them. You’ll get a lot of first hand patient information.
shirley

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in reply to: Graves’ disease #1170187

Tried it. I saw no way to sign up or register. Perhaps that is the problem.
Came up with zip again. I’ll send a pm to you, Ski.
s

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in reply to: Graves’ disease #1170186

WOW! i surely must have done something wrong. I found it hard to believe, and sure enough it wasn’t to be believed. I will try it again and let you know that I succeeded!

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in reply to: INS. PAYMENT FOR EYE OINTMENT AND DROPS? #1170180

That is a good idea. I am not sure if a retired person can set up that plan. I’ll look into it tomorrow and share what I have learned. Thank you to both of you for replying. For what it is worth, I have found that Soothe eye drops and ointment are the best for me.
Shirley

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in reply to: TED and my wedding #1170169

Hey, that is great news. You did a nice job of describing what is like FOR ALL OF US when we are having our own stressful situation which definitely is all encompassing to us. Sometimes the tincture of time does help, and some reflection about the whole thing. Of course I was more than happy to respond to your email, it was important, and certainly not a lesser important topic!
Do continue to write about TED and other news. I am glad my thoughts were helpful.
Shirley

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in reply to: Too many meds, no relief. #1170081

As you know, we are fellow patients here. The title of your post reflects some of my thoughts. REmembering that I am not a doc. My questions.
Have you considered discontinuing the anxiety meds and the GI med? I think you can achieve the same thing for GI by trying Mirilax (over the counter.) And for your GI situation, the best doc to see is a gastroenterologist who is familiar with IBS. There is so much misinformation out there re IBS. I have it, and all is controlled nicely with Miralax, plus remembering to drink water. I have a friend who just spent $10K going to some special IBS clinic, accomplished nothing, felt worse. Then went to an academic center with a GI doc familiar witH IBS, and he prescribed the same thing I do.

If you feel you are hypothyroid, a good set of labs, would be another clue alongh with how you feel. TSH, T3 and T4. Do you consistently take your thyroid hormone on an empty stomach at pretty much the same time every day, with no supplements for 4 hours/ that is important.

Re sex drive, I can assure that there are tons of women who feel the same way. Maybe an appt. with a gyn person might be helpful. There are estrogen patches and creams, you could talk about that. I know my neighbors say the same thing, without thyroid issues.
But the first thing is for you to do is get labs if you haven’t (sounds like you have, though, and it is frustrating to you that you feel like you do with normal labs. The second thing to do is to discuss the other meds you are taking, ask yourself if they are helping, it doesn’t sound like they are, and i have no idea, maybe you do, of how they interact with each other,
and consider (working with your doctor) discontinuing all of them. Just a
i am sorry, you will have to slug through this, for the darn cursor will NOT move to the end of the line, sorry again shirley thought. might

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in reply to: Just diagnosed with Graves #1170147

Couple comments, cause I am running out the door.
It is super super frustrating to feel like you feel, have the docs dismiss it. You have a lot of symptoms. ARe you taking meds? What are they? Since he seems good, I am wondering if communication is set up so that you are to report your symptoms (and the medications you are taking, if you are taking them) Generally (I am operating pretty blind here without know if/if not here are meds invloved, presuming there are.) But if you are on ATDs, he should be hearing from you about every two weeks, and you might need higher dose of ATD, are you on a beta blocker? That helps with tremors, and if you ahve a fast heart rate, it should get slower.

Just a note-Graves’ and TEd are both autoimmune diseases. The treatment and management for each is very different, for they involve different antibodies which are messing up our eyes and your thyroid.

You have significant eye symptoms, and I suggest you ask around and find an eye doc who is familiar with, and treats TED (this does not include your endo) and optimally, you should go to neuro opthalmologist. I suggest, too that you read about TEd on this site, and the experiences of all of relating to these two miserable diseases. The good news is, that there is a light at the end of the tunnel, and hope for a normal life again with both of them.

I imagine the labs for Graves’ are TSH T3 and T4? that is what should be ordered. I am glad you found an endo that is an improvement over the ones who have bbeen fired, but sorry it is so far away. It is important to develop good communication with the doc, assuming he his a good endo, and be sure to sign the release of information forms, so that you receive copies of all your labs, test and reports of the endo. Having your own personal medical fine is always best. Do write with more info, this board is wonderful.
Shirley sorry, the cursor won’t go where i want it to go. always best.

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in reply to: time frames for surgeries #1169656

Hi, do read some of my posts, either by my name, or by OD. I LOVED LOVED LOVED LOVED my strabismus surgery! Did I mention that I loved it???!!!!
I had severe double vision looking forward, up and sideways. The only normal vision I had that was not double, was looking down at the floor. My scalp, head and neck were in spasm all the time from cranking my head around so I could see something with on image. I had my head thrown way back all the time so my downward vision could see some sitting in front of me. It was pure hell.
Now, the answer you want to hear~ I immediately had mono vision after the strabismus surgery. It was absolutely wonderful. Easy, easy recovery, no pain. I used cool packs and had the head of my bed up for three nights, to reduce any potential swelling. Other people noticed it right away.

I had OD in one eye, I do wish I had done both of them. My major problems are burning, scratchy eye, eyes that tear all the time, eyes that are very sensitive to light. But I do not have one bit of double vision.

Sounds like you have a good surgeon. Generally a different eye surgeon does the strabismus surgery, than the doc who does the OD’s. Do write again.
Bottom line??? I don’t think I could have lived with the double vision that I had. Glad I did not have to.
Shirley

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in reply to: Graves’ disease #1170183

It would be helpful to know where you live, if you say it in a post, there might be someone in your area who could recommend someone.
Just as an experiment, I tried the two sites Kimberly mentioned in her post. O live in a major metropolitan city, and there are at least 8 oculoplastic facial surgeons in town that I know of, but the site said there were none. Not sure what this means, for I think some are members of the appropriate organization, aspoprs. So I suggested the other idea for this reason.

I have had TED a long time. I encourage all folks who have it, to see a neuro opthalmologist at least once, for a baseline exam, and preferably, continue to have appointments with them. There are some symptoms that could be serious, and need If you read some of my old posts, either under my name, or strabismus surgery, you will see that this surgery was the most wonderful procedure of all my surgeries. Generally, it is pediatric opthalmologist who do
this surgery.
How long have you had your diagnosis of tED? Generally, it takes a year or more for the eyes to change, to have it be effective to have strabismus surgery. When the eyes are always changing the measurements cannot be accurate. Are you going to an eye doc who is familiar with TED?

I understand how you feel, what you are going through. Been through it all, still am going through it. Do write again on the forum, send a PM if you like.
Shirley

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in reply to: Second Orbital Decompression Surgery…Anyone? #1170066

What procedure are you having on your lower eyelids which are retracted?
Is the goal to raise them? I just had palatal grafts to each eye. One moderately successful, the other one seems to be no different.
Shirley

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in reply to: orbital decompression #1169709

Hi Saltzman18,
I am interested in knowing if you lived in Michigan when you had your procedures? How do you get care if you have come from far away? Do you stay a fairly long time for post op appointments? That is what has kept me from going someplace else. My question applies to anyone else who may have gone someplace far from home.
Shirley

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