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in reply to: Looking for Doctor Recommendation in NYC #1064998
I don’t know how long you have been there, or if you have established care with any doc yet. If you have, I would ask them to explore and talk to colleagues about endos for thyroid disease. Also, ask the docs where you used to live, to do the same thing.
That is a start. You can also call depts. of endocdrinology at the main medical centers, ask the voice at the desk to provide endos who work with thyroid disease.
I think you know you need a different doc for your PCOS. Have you established care with a doc for that yet in nyc?
And, as stated by Ski, you may get a Personal message from someone who knows that area. I am in Seattle, so I am no help, but I will ask my endo here, if I get names, I will send a PM with the names of nyc endo docs who "do" thyroid disease. I do agree with Skl 100% that this is a long term relationship. Having said that, sometimes people on this site make snap decisions about a doc after one visit. I don’t agree with that, for it TAKES TIME and communication from both parties to see how things are going. Best of luck to you. Keep us posted.
Shirleyin reply to: only sleeping 2 to 4 hours night sooo tired #1065120As Bobbi said, there is residual thyroid in your body which is still affecting you. Perhaps the feelings you have when you wake up is related to that. Remember, you have apparently been hyperthyroid for a long time, and unfortunately, everything about thyroid disease takes months and months to get to where you want to be. You have been on medication a very short period of time. If you can alter your time with your grandchildren for now, it sounds like a good idea for you. It is very hard to be around healthy and energetic kids when you don’t feel well. Is this possible?
Otherwise, read the posts of the facilitators again, for they offer much insight and good info into this disease which we have. I think your sleep issues may resolve when you are less hyperthyroid. This is the best site, with accurate and monitered information, so i am glad you (and all of us) found it!
Shirleyin reply to: Out with one infection in with another… #1065009Hi mamabear,
I sure am sorry to hear this news. It is the waiting for results that is so hard, especially when you are in pain.
You have sure "had it," in spades, just wanting to write to tell you I am thinking of you, be sure to write when you know the results, and the next plan so you can regain your health. Do you live in an area where lyme disease is prevalent?
I am simply deciding for you, that you will not have a recurrence of Graves. Enough is enough! How old are your kids?
This really stinks (how you feel.)
shirleyin reply to: EYES WATERING, TEARING ALL THE TIME! #1065026Thanks, Kimberly. Yes, I pretty much know this, but it helps to know that it has been a problem for others. I am waiting for appt c strabismus surgeon, long waits cause they are all pediatric eye docs, and from that group, just a few do strabismus surgery. I am sure I will have eyelid surgery after for retracted lids, plus the eye that still won’t shut completely.
I am SO photophobic, and my vision is definitely impacted when my eyes tear and water every 30 seconds! I have supported the eye drop business for the past 18 months! Always have some with me. I have a ton of lubricant which I use at night, plus taping eye most night. I seem to be doing a good job protecting the cornea in my left eye.
Oh, to be NORMAL again, get glasses which are correcgted for my vision, not have to think about further surgeries.
I think, after going through TED, I might be a little too hopeful about being normal. Watery eyes definitely interferes with vision, plus photophobia, plus double vision. None are very compatible with driving, I keep it to a bare minimum, usually only to doc appointments I cannot access by bus. I love to drive.
Another question-does photophobia improve at all after strabismus surgery? WEaring sunglasses, a visor hat really is not enough. There is a glare, which causes a "blind spot" and I have to use my hands to shade my eyes in addition to the above.
Thanks, Shirleyin reply to: So curious about how GD affects eyes. #1065097I got TED almost fifty years later. After I had a baby. I was very hyper, took tapazole, became hyper again, had a thyroid storm, then a subtotal thyroidectomy. After several decades, I became slightly hypo, no symptoms, take Synthroid now.
But the point of this email is to reflect what all the facilitators have said. TED is a separate entity. I spent one whole year being told that I needed new glasses, getting slight changes in my prescription. Finally, I realized that I had double vision, and was compensating for it by tipping my head back to see clearly. Even though I said I had to tip my head back so I did not see double, (quoted by me in the chart in 2003!) It was missed by the first eye doc who thought only of new glasses.If you have eye symptoms, photophobia (can’t stand bright light) double vision, dry eyes, red gritty eyes, bulging eyes, be sure to find an ophthamologist who hears what you are saying. It is wise to go to a neuro-opthamologist as well, to moniter your visual fields. In my case, I had optic nerve atrophy (loss in the visual fields, harder to see colors) and had to have an orbital decompression to save my vision, even though I was in the active phase.
I really hate TED, it has changed my social interractions with people (hard to look straight ahead or up.) I am finding that it is hard to tell if I am in the cold, or fibrotic stage. The doc who held up two fingers and five fingers said it all. He said to count on two years, as many as five surgeries, before I see the end of this. He is right. I have a couple strabismus surgeries (muscle surgeries, to move my muscles so I can look straight ahead and up at least 30 degrees) then eyelid surgery to accomodate my eyes. This is a very difficult experience, and I am most appreciative of the facilitators for their knowledge, and other participants who help me feel that I am not experiencing this hell by myself.in reply to: surgery???? #1065076Hi Cynthia,
I had the surgery, feel it was the best choice. I can see you you think it is faster than RAI. I thought it was, but certainly Bobbi has some relevant and useful information for you. In my experience, I became euthryoid (normal levels, felt great, no hyper or hypo symptoms) for over 30 years. Then began Sythroid when a little hypo.
If you go to Search, and put in "surgery-yikes!" you will seem many many posts from someone who struggled with her decision, but decided on surgery. She had it about three weeks ago. I think that thread is a very interesting one for to read, since her experience is so recent.
Shirleyin reply to: Armour Thyroid/Natural #1065063I prefer Synthroid. Probably the single important thing is to stick with one brand. Not sure it makes a hill of beans of difference. let’s see what others say…
shirleyin reply to: only sleeping 2 to 4 hours night sooo tired #1065110Hi Cynthia, first of all, here is a suggestion regarding making appts. with doctors, especially your endo. They are all very busy.
I find this works very well for me. I make appts. way ahead of time. Also, sign a medical release of information form requesting that lab results and notes of your visit to your endo can be mailed to your home.
I am fortunate to be able to exchange emails with my endo, so I also do that.It is very difficult to be hyper. You are on the (long) road back to being normal again. This WILL happen. With the antithyroid meds and propanolol, the sleep issue will probably become less of an issue for you. So you can think about that as you take your meds.
Ski’s post is wonderful for you. You are not alone, you belong to a club none of us wish to belong to. But we do. This site will really be helpful to you for support. I live in a big city, and no support groups that I know of in Seattle, but I think I prefer this site anyway! And, as a fringe benefit, you will begin to love your computer, for it is your lifeline to the site.
Re Medicare disability, it will be up to you to ask if the surgery is covered. I cannot think of any reason why it would not be covered. They are both treatment options for your diagnosis. But that is down the road a bit.
The choices are personal, and up to you, but I felt like you did, and I just wanted the darn thing OUT!Right now, though, you need to take your meds, get your labs, report anything that worries you by calling the endo office and leaving a message about it.
I am sorry you have RA, that is a tough thing to have. There are a lot of good support groups out there for RA, too. ARe you hooked up with a reliable and supportive one? Do you have any help at home with things you just can’t get done right now?
Do you have a good friend who can help you with your housework for a little while? You could make it a pleasant day by having her over for housework and dinner!You WILL feel better. I have been down this road. It WILL happen, now that you are beginning the road to recovery with the necessary steps of the two drugs you are taking. I imagine you will notice you are feeling better pretty soon, now that you are on meds. There is plenty of time to consider the following options.
Hang in there with us! Pretty soon, you will be writing to someone else who is new to this board, and they will be so grateful for YOUR support!
shirleyHi, I know your plate is very full. Mental illness, regardless of the cause, is draining and stressful for all involved,including your daughter, and the whole family.
I think if I were in your position, I would do the following, perhaps you already have:
1. Contact the psychiatrist who was seeing your daughter. Ask him for a referral. Probably another doc has taken his place.Be sure to tell him, when you talk to him, the symptoms your daughter is experiencing right now. When you call the doc (who has moved) leave the message that your call is urgent, that your daughter was an established patient with him before he moved. If you have not already done it, request the complete record of your daughter’s file. Since she is an adult, you will need her cooperation for this. I don’t know where he husband fits in the picture, but the same suggestions I ah making here can be done by her husband. Is he willing to do that?I am in no position to be a diagnostician or a doc, but I feel strongly that she has a separate underlying mental condition that is not related to Graves’, and it is critical to have a psychiatrist following her care, and this is a long haul situation.
I sure hope that you can proceed with this asap, in the best interest in getting help for your daughetr and her little family. Please write again.
Shirleyin reply to: Hi everyone, we are back! #1065213Hi catsmum!
There have been some very recent posts re thyroidectomy, plus the decision making experienced to make that decision, rather than RAI. I think you and Cat will find them very helpful. There are some pros and cons to both, some of them simply personal preference. I had a thyroidectomy, would make the same decision again. RAI did not interest me.I was 24.
I lived in England a couple years (though in Seattle now.) The most important thing @ choosing a thyroidectomy is to choose a surgeon who does them on a regular basis. If you talk with the endocrinologist, plus asking your primary care doc to ‘ask around," for some choices, you (and she) will be fine. My personal reason was that I did not want to deal with the bouncing around of levels after RAI. Read the posts of the recent thyroidectomy experience. i can’t recall her name at this moment, but it has the word "Yikes!" in the title!
shirleyin reply to: Off methimazole again #1065240I can’t recall how I labelled the post, but I recently asked @ antibodies (TSI.) You might be able to find the posts.
Basically, I had the test done twice, at my request, and got it to happen because of my very good insurance. All endo/eye docs said before and after, that they were not really an indicator that meant much of anything when it came to Graves’ and TED and the duration of either. But sometimes is used to differentiate for other thyroid issues.
Here is a really good website to check out.
http://www.labtestsonline.org/understan … /test.htmlin reply to: Post-surgery update #1065296Hi, that is so great!!! Things are going so well for you!!!! I have to convince people that I had a TT, for my incision is so hard to see. Doesn’t matter either way though! YOU ARE DONE! THROUGH WITH SURGERY! Ready to move on! I do hope you have my experience, get to the right levels asap (not that anything related to Graves’ is instant, (: I look forward to you next post, hearing of your thyroid labs and when you are moving toward making a baby!
ShirleyThanks, Kimberly, that makes perfect sense!
I sure hope I am one of the ones who does have some success with looking directly forward. My inferior muscles are very fibrosed, causing me to resign from the job I love last year, ’cause I could not look up at the computers way above my head in the recovery room without hyperextending my head way back.
I hope I can get SOME upward vision, at least enough to look ahead when i am walking….One doc says he will do the procedure under a local, the other says he would not think of doing it with anything but a general. I have cancelled the plan to do the local anesthesia, but I sure am eager to see if the eye muscle surgeries work for me. There is also disagreement on whether I am still in the inflammatory stage, or the fibrotic stage.
As much as I hate my vision issues, i want to err on the side of caution.Another doc says that my biggest issue is the fact that I cannot close my left eye (after the OD.) He regards this as my biggest issue, and suggests that I consult @ eyelid surgery that will not conflict with the eye muscle surgery, and continue to do things out of order (had OD in inflammatory stage)
It is very challenging to protect my cornea, but I am doing a good job. Taping eye at night is VERY hard, and I wish I had some good suggestions for others who may have to do this. But I don’t. It is difficult!
Shirleymaybe more familiar if I say "eye muscle surgery to correct double vision?"
in reply to: Post-surgery update #1065292Hi Teacherhelper, I read your post @ the 3AM med, and Kimberly’s response. I tend to agree with her.
I think it depends on if YOU have decided this is a good idea, or if if an evidence based (a very good way to make decisions, by the way) fact. If you have decided that you want to do this, and tell the doc this, they may take the path of least resistance, and say "uh huh." if they think you are happy with it Or, if you ask, they may truthfully tell you what they think/know. Actually, a pharmacist is a much better resource for you, or certainly an additional one. Pt. teaching @ meds, side effects that matter, and drugs that are contra-indicated to take together, and all other facts @ meds are the responsibility of the pharmacist now.
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