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in reply to: ORBITAL DECOMPRESSION-questions @ post-op #1066855

Jackie, do you plan on having OD on the other eye? How are you doing now? Is the numbness still going away?

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in reply to: ORBITAL DECOMPRESSION-questions @ post-op #1066854

My OD is next Tuesday, 2/2. I sure hope they are careful with my cranial nerves! The eye doc will do the lateral wall, an ENT (ear nose throat) will do the medial wall endoscopically.
Thank you again and again for your helpful suggestions listed in your response to my last post about the surgery. I got the blocks for my bed, will have then there the night before my surgery.

For anyone who has had OD, what has been your experience post-op, what length of time elapses until the eye can be evaluated with reliable measurements. It seems that none of my docs know if I am past the active/hot phase. It does not make any difference, for I have to have it because there is pressure on my optic nerve (blurred vision, colors less bright.)

Questions-
1. I am photophobic, wear sunglasses when sun shining, (not a big issue in Seattle right now!)
But I find that there is a glare coming in from the side, and I have to move my hand around to shade the sun so I can see clearly. I am wondering if this will resolve after my eye goes back to where it belongs. I don’t know if I will have the other eye done, corrected vision is good in that eye, and optic nerve seems fine. But maybe they will look very different?

2. I really wanted to print your list of helpful things for post op OD care, but cannot figure out how to do it. I tried copy/paste but that did not work either. I was hoping to get a hard copy with larger print, so easier to read) so I did not have to run to the computer to see it.
Not names, just your wonderful list.

I will keep everyone posted on my progress and post-op course after 2/2! I really am very apprehensive about this surgery.

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in reply to: Surgery #1066700

I am very sorry about your grandmother’s experience. The parathyroids are very important, and I am sure she did have troubles the rest of her life.

I had a sub-total thyroidectomy after having thyrotixicosis (hyperthyroidism) which would recur every time the tried to stop the PTU (propothiouricil.) I had no complications at all, was euthyroid after the operation for about 30 years. I felt better immediately after the surgery, as far as feeling hyper. At that time, there was no choice for me between RAI, for RAI was in trials at that time.
I am also a nurse who has worked in general surgery for a long time. I have not heard of any complications with this operation. Now you have a choice of surgery or RAI. There are plenty of recent posts from people who have had RAI, and I am sure you will get some other good responses from people who have had a thyroidectomy.
Depending on where you live in Michigan, I suggest a surgeon from a larger area, or an academic setting. Generally, there are surgeons who do many of them, and that is who you want. YOur endo might be a good place to ask for a few names. Or a doc you know who would ask around for a couple names for you.

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in reply to: Replacement Hormone Time of Day? #1066805

Hi, there is a very helpful discussion with the subject line of "New to Replacement, a couple of questions." It began in January 7. There a a good discussion of your question, and good info in each reply. Bobbie and Sky have responded to your questions specifically, with some reasons for the timing, and for taking it on an empty stomach with a whole glass of water..in the morning. I know my stomach is really empty then!
I do this, then have a cup of coffee, and I don’t wait. i also put a bit of milk in my coffee, and don’t worry about it, cause I do the same thing everyday. I don’t want to eat when I get up, so it is easy for me to wait 1/2+ hour before eating breakfast. Check out those comments. Shirley

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in reply to: ORBITAL DECOMPRESSION-questions @ post-op #1066851

Hi Jackie, thanks for writing. I have double vision when looking straight and up. In my case, I am sure I will have strabismus, or eye muscle surgery. at a later date for the double vision.
I spoke with a man in Chicago who was SO GLAD he had the OD. He had a bit more double vision after the surgery, but it went away in 2-3 weeks, like your doctor said. Books on tape are a great idea. I read all the time. Must feel great to have your eye back in your head! I am looking forward to that. I don’t the other eye needs an OD. I was 24 when I was hyper, but the vision stuff appeared more than four decades later! Glad you can use the computer now, and i look forward to your updates. I think you will really like this site, glad you found it.
ARe you bandages off now?

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in reply to: ORBITAL DECOMPRESSION-questions @ post-op #1066849

Thanks you, Nancy!!! That is EXACTLY the kind of information I was looking for.
I appreciate it SO MUCH! It makes such a difference to me, and I feel I am operating from a position of strength (knowledge) rather than weakness (the total unknown.) After I have this procedure, I will be available for everyone to profit from my experience. It his the practical stuff that you are never going to hear in a pre-op phone call. I am very grateful for your response.

I feel more confident in telling my friend (who is flying from Texas) that she can plan to stay here a little less than a week. I do have two kids in the area, but during that time period, one will be in China, the other in Bolivia. The other one lives in So. Calif., and happens to be taking her Calif. state boards (MSW) during that week.

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in reply to: 2 gripes for the day #1066884

If you are are bleeding a lot, beginning to feel weak or faint, if your pulse is really fast, go to an emergency room in the near future tonight. If you have equipment at home to take your blood pressure, do that, and if your pressure is going down, and your pulse is going up, go to an ER now.

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in reply to: 2 gripes for the day #1066883

Well, I think the endocrinologist said the appropriate thing. They are not very prepared to follow a heavy period and all that it could entail.

I am sorry your insurance carrier is not up to date. As I understand your email, you are calling the gyn docs on their preferred provider list.
I am not sure how long you have been without a gynecologist since yours retired, but I would start with your primary care doc. Everything I have to say, depends very much on the amount of bleeding you are having.

It is Friday night. and we are moving into a weekend, which is a lousy time to have any luck with your quest of locating a gynecologist, even he/she were a preferred provider. I am thinking you should call your primary care doc, who, of course will not be there, but someone is on call for the weekend.
If you are bleeding a lot, (usually measured by the # of pads you use and soak up in an hour,) you could go to the on-call doc for your primary physician. Give them a good history (how many pads an hour, is this normal for you, has it happened before, and anything else you can say that is relevant to your gyn history.) They could do a lab, get a hematocrit and a hemoglobin, take your blood pressure and pulse, and see where you stand. If you are beginning to have a problem, they might call in a gynecologist who is on call.

Write back to say what you think of this plan, and any other questions you have. I am not a doc, but I am thinking
that it has been a frustrating day for you, that you might now feel well, so I am suggesting a plan that may make sense to you and keep you safe.

Lots of women do not have a gynecologist, and have all their gynecological care done by their primary care doc.
Then if things get more complicated, they refer to a gyneologist.

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in reply to: Eye Disease after years of Euthyroid #1075535

I know this was written more than a year ago, but I have joined the site just recently. I am a classic case of "years after."
I had thyrotoxicosis in 1959, euthyroid for almost 40 years. Then a little hypo, began Synthroid. All fine. In April of 2009, I had sudden onset of double vision, however, my eyes were scratchy and itched since 2003. So I am one of the small percentages, sure wish I weren’t. I am scheduled for an orbital decompression 2/2/10 due to optic neuropathy.
I’d love to hear from others who have had the decompression and are glad they did! Shirley

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in reply to: Graves Disease and Exposure to Someone with Tuberculosis #1066898

I made a typo. Word is Isoniazid. This is a drug that has been around for over 50 years. It might not even be used anymore. Not very important. I don’t think you have much of a worry at all, but take it one step at a time. When an individual has an exposure to TB, some do convert to a positive skin test, and other than the bother of getting a chest Xray, they will be positive the rest of their lives, and it won’t mean a thing, and they will never get TB.
What grade do you teach? I have twin grandsons in third grade on Bainridge Island.

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in reply to: Graves Disease and Exposure to Someone with Tuberculosis #1066897

I am not a doc. However, I am sure that there is no relationship to the autoimmune status with thyroid antibodies.

This is not that uncommon. Do you have TB skin tests every year? (I am asking because it is a condition of employment where I work..hospital.) If you skin test is negative, that is fine. My daughter had an identical experience in third grade. Her skin test was positive. So she had an xray, which was negative. In her case, her skin test will always be positive, so she gets CXR’s now, not sure how often she is doing it. There are some docs who thought she should take Isoziadid for a year, be we elected to not have her do that. Quite a few folks have a positive skin test.
I imagine there will be a fair amount of attention from the school about this situation. After you gather all that info, if you are still concermed. y ou might like to make one appointment with an infections disease physician, just for good information.
I’ll be interested to see what others say about it. And you sound like a WONDERFUL TEACHER! LUCKY KIDS.
Shirley

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in reply to: very confused about a bunch of stuff… #1066984

Forgot to say that you don’t have to have all tests repeated if you go to another doc, but you do need to take your labs, the report of your scan, and whatever other tests you had. Of course, it is possible that the endo might want to draw labs to see where you stand at that visit.

I am sure everyone on this board understands your confusion @ all this new information, and about having a thyroid issue in the first place. There is absolutely no reason for you to have a good grasp on all if this at this time. You WILL be ok, and with the passage of time, you will have learned and understood a bit more about this thyroid stuff. Having said that, the endocrine system is very complex. It might be helpful to you to write down most of the questions you had in your post, and keep adding to them. Another suggestion is to take someone with you to your office visits, have them take notes, and remind you of your questions. In conclusion, I am someone who is going through all of this right now,as many of the folks are, who write to this board. I think one of the moderators said that when people on on the other end of this, and have resumed their "normal" lives, they tend not to write.

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in reply to: very confused about a bunch of stuff… #1066983

Hi Trish, I am wondering if it would be helpful for you to have a second opinion, or try another doctor. I think the experience would give you confidence in some way, either validating the thoughts you have about your present endocrinologist, or realizing, from these posts from all of us, that there is no specific answer. That most people have similar experiences, and, as one person mentioned (I can’t reference the post,) when we are hyper, we are not our baseline selves. I know I was hard to live with, with my voracious appetite, impatience on occasion, and wanting to keep the house at a temperature that was right for me, but froze everyone else.

But, the purpose of this post is to ask you why getting a second opinion, or simply trying another endo, is not an option? Is it because you live in a community where there is ony one endo? Is it because you need a referral? Is it because your insurance won’t allow it? Is it because you called an office, did not get a return call right away?
This is pretty much up to you. Are you unhappy with you endo because you feel you need answers, and you didn’t get them? Well, join the club we all belong to. There are not finite answers. If you live in a larger city, there might be a thryoid clinic? If you don’t have a clue whom to call, I suggest asking your PCP, or any other doc you go to, to ask around for another name. And it takes a fairly long time go get back to the baseline you This is a tough disease, for we are all over the map emotionally some of the time. Rest assured that I am in the middle of all of this, plus severe eye involvement, and I have learned to know that in about a year, or a bit more, I will be fine (that is because of the eyes.)

The frustrating thing @ this is that it takes a long time to "get it right" in terms of meds and
how you feel. You will have lots of support on this site, glad you found it.

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in reply to: Can anyone please shed some light? #1066931

Hi Anji, Laurel’s reply is "right on." Everything she said is perfect for your situation. That is the team you need. Hope you can follow through on those suggestions. Don’t worry about the term "high risk." There are docs who are very skilled in pregnancies that are not "run of the mill," and you may end up with one of those docs. A lot depends on where you live, depending on the number of docs available to you. When you have this team on board, plus a perinatologist for that sweet baby, you will do well. Go, girl!

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in reply to: Can anyone please shed some light? #1066929

Hi Anji, what a nice reply from Jake! I certainly agree with him that it is important to have oversight of your thyroid status and your pregnancy. Do you live in a major metropolitan area, small town, or in between? Will my suggestions in my prior email be difficult for you to follow up, or fairly easy? Does your insurance let you self-refer, or do you need a referral from a doc?

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