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in reply to: Insomia relief? #1061226

Hi, I have also stopped Ambien. I could not see that it made that much difference in my sleep, and prefer not to think of a lifetime of taking stuff to sleep. Having said that, when I was sleep deprived, I was only too happy to take whatever worked for sleep. It seems to me that once I did get some sleep, it was easier to continue to get a reasonable sleep. I was also taking trazadone for sleep, REally can’t tell if that makes a difference, either, but I sure can tell you that when it was increased to 100-150 mgm I felt like a total zombie for the first few hours of the following morning. I am older, so I get up at least once, sometimes twice, to use the bathroom, but seem be able to go back to bed and to sleep. It’s COLD outside of those covers! If I had a night with little sleep, I probably would try another Ambien for a night or to to see if it does make any difference at all. I certainly did not become dependent on it,and stopped it with no problems in one night. But I understand this can be a problem.
Shirley

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in reply to: Finally chose a treatment. Surgery it is! #1169825

Well, 20 mgm twlce a day (what the endo might have said) is a lot different than two 10 mgm once a day! Frustrating that the endo is not there until Thursday. You could, in the meantime, call the endo office, as the nurse to read your chart, see what she wrote. And,t here should be a copy of that RX in your chart. And, I alway have a high index of suspicion with the possibility that there has been a mistake or miscommunication made somewhere along the way, and that does not rule out the pharmacy. So you could bird dog that whole process, too. Was the RX called in? Or, did you take the RX in and hand it to the pharmacy? In either case, you can call the pharmacy, ask them to look at the original rX, and/or in the computer, just to double check that part of the process. I imagine when you were handed the RX, you were told to do what the bottle said. But, there is always a possibility that it got processed incorrectly. i am mostly suggesting this, because because it is frustrating to have to wait until THursday! You’ve done all that you can to get the right info, so I guess your only choice is to check it out as much as you can again between today and Thursday. From what I can read, the frequency of the medication varies with the amount of the dose, ie the bigger the dose, it is more likely to be given twice a day, the smaller the dose, once a day. But, as you know,a nd as Bobbi said, you’ll just have to find out this info so you can move on with taking the med! How frustrating.

Also, be sure the communication is up so that you hear about the Medicaid acceptance asap. Does that info go directly to the surgeon’s office, or does it go to the endo’s office. I know how much you are looking forward to getting everything scheduled, and moving on with your life! And we are more highly motivated to get this info than the people who work in the office, who will get around to calling you when it comes to the top of the pile of stuff they have to do! (: I hope you get all this scheduled very soon.
shirley

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in reply to: Husband Trying to Cope… #1169642

I agree with Kimberly. You are doing the right things for yourself. You might surprise yourself by enjoying seeing your friends one evening. Take it as it comes. Keep writing to us, you are not misusing the board AT ALL! i think all of us are people with complex lives.n You are right. Things could be worse,a nd you are doing a good job taking care of your son, and being kind and caring to keep your wife on your insurance, which certainly is the right thing to do.

Try not to spend much of your energy on how your wife and her mom get along. The bottom line here, is that I sure hope she moves forward with treatment for her Graves’. All of this is a slow process back to health, and none of us liked that at all, but it is, what it is. I sure hope she does get consistent health care for this.
Shirley

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in reply to: Getting Through this.. #1170046

You are right. It is ridiculous to have an appt. without the lab results FIRST! I always do that. At each appointment, ask for the lab requisiton (or simply have them fax the request to the lab where you go, whatever works…) Then get your blood work a few days before your appointment.

Where I live, I can access all medical records, lab results, any other test results electronically. But if you can’t do this, be sure to do this. At each appointment, do what i said above. Then, when you have your appointment, you DO something to discuss.

And, while you are at it, request a Medical Release of Information for, and request that all tests, the dictated results of all visits, be sent to you. Then you can review what your doc wrote about your last visit. Sometimes, you will see errors. Other times, it is the way to have your own personal medical file of yourself. YOU have every right to do this.
Shirley

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in reply to: radiation treatment to eyes #1169384

Just a thought for you. Since your TED symptoms began in March, plus the fact that your eyes are still changing, you most probably in the active phase of TED. in my experience, it took almost a year to get to the inactive phase (by my own observation, plus objective measurements) As I have stated in prior posts, I was looking at strabismus surgery as a life-changing, in the most magnificent way, event for me. I pretty much followed the same path you have done. Had lots of prednisone, 60mgm/day plus the taper, plus Solu Medrol IV for three days. This improved the DV slightly for a few days, then back to crippling DV. My docs dod not want me to have radiation to my eyes.
So, strabismus surgery was wonderful for me. Immediately resolved my DV. There is a lot of information in the search engine about my experience, plus a long thread about strabismus.

I was just as frustrated as you, and a pretty crazy and impatient person waiting for the inactive phase. What happened, is that it was so awful, the strabismus surgeon gave me a choice of doing the surgery before we were SURE that my eyes weren’t changing anymore–or waiting another 6 months. I elected to go ahead, knowing i Might have to have more strabismus surgery, if DV occurred after the original surgery. Plus all the complexity of doing it again. It went well for me.
Shirley

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in reply to: long read #1169874

Your eyes being dry is common. With tED, the tears change consistency, and are not as effective in lubricating our eyes. so we need eye drops, gel and lubricant. I have to use all three of them eveyr night. In addition when more of the cornea, ie more of your eye is exposed, there is more surface to dry out, and the eyelids sometimes drift open while we sleep. It will be helpful for you to keep these things by your bed. Dry eyes can be serious, for if the cornea gets too dry, a corneal abrasion could result. I do everything possible to keep them moist. My eyes are very dry. Some doc have put in little plugs in the tear ducts to help the dry eye situation, but it did not help me at all.

To have an OD, you need to be seeing an oculo facial surgeon. That’s who is trained to do them. YOu may need a referral from another doc tomake an at with these docs. You may not. Be sure to mention thyroid eye disease when you call. They will need as much info as you can provide about the course of the disease. But what will matter now, is the present. The only caveat for doing and OD is that you should not be in the active phase of the disease, for your eyes are still changing a lot at that time. Try to do some reading about TED and its’ progression, either on the search engine the references on the first page if this site.

If you think you eyes are bulgy, that is what matters. Your doctors won’t be interested in what your family thinks. Also, the eyes can be measured by the docs on how much they protrude. They need these measurements for the OD.
shirley

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in reply to: Orbital Decompression … how did it work for you? #1169850

Hi, this will be a short note today, for i am headed toward the bed! But wanted to respond to a few of your questions.
The sequence, as you may have read, is OD, strabismus, then eyelids. There are several ways to do OD’s. and it depends on where they trained, and the oculofacial surgeons (and sometimes ENT surgeons do one side of the decompression) do what they do best. So the approaches will vary. You want to heal completely from your OD’s. My double vision was terrible.
Generally, ophthalmologists who "do" strabismus surgeries, also do lots of pediatrics. So a different doc for this surgery.
Your eyes need to be where they are finally going to be, after the OD’s so the strabismus surgeon can make accurate measurements to move the muscles to get rid of the double vision. I LOVED LOVED LOVED my strabismus surgery. Also easy to recover from. Then, when all that has settled down, if your eyelids are retracted, the same doc who did the first surgery, and/or many plastic surgeons who "do" facelifts, etc tec, and/or the oculofacial surgeon lowers the upper eyelids, ad if needed, raises the lower eyelids. I just had that done, one eye at a time, in the past six weeks.

To me, it does not make sense to do the blepharoplasty the same time as the OD for the reason I mentioned above.

Just as a note-mostly terminology-the neuro ophthalmologist is not a surgeon, in my experince.

There is a to read if you use the search engine to read about all of these surgeries. I think I wrote a lot about my OD.
Biggest advice I can give you is to use cold packs, and elevate your head at night, will pretty much make things mooth sailing for you if no swelling.
Good night, Shirley

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in reply to: long read #1169872

Hi, I am so glad that you wrote. I applaud you in moving forward to explore all options as you make your decisions. The doc you want to see are oculofacial surgeons. They are eye surgeons,with extra years of training in facial surgery. YOu got some good suggestions from Kimberly about how to find these docs. In addition, I suggest you say where you live in a future post. We do not recommend docs on this website, but you could ask for a PM (private message) from readers who may have good suggestions of docs to see.

Kimberly mentioned a lid surgery-called blepharoplasty. I am not sure if you have eyelids that are retracted
(lower ones abnormally low, upper ones abnormally high) but if you do, that procedure should be done before and OD (orbital decompression.) I think I understand that your eyes bulge out, or are more prominent, that you like? That is very typical of TED (thyroid eye disease.) Do you eyes feel dry? I suggest that there is some possibility for you to explore having the procedures you want to get the result you want, coded by the docs as a medical condition. That would be nice if you could do that. Cosmetic surgery is expensive when paying out of pocket. But many people certainly do have elective procedures.

Clearly, this is impacting your life in a negative way, and you want to do something about it! And you CAN!! I can’t imagine what your eyes look like, since you say you don’t have proptosis. I thought I understood that was your concern, bulging eyes.
BUT whatever your concern is, you have a right to have it, and a right to do something about it.

I am sorry your family does not quite understand all this, but the bottom line is that they really don’t need to, and maybe they really do think you look just fine.

I wish you the best of luck. These surgeries are not small surgeries, and you need to have realistic expectations of what
the outcomes will be. THere are lots of references of before and after photos. Be careful on the web, there is a lot of junk out there, and it won’t be helpful to you, I don’t think.
Do write again
Shirley

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in reply to: Husband Trying to Cope… #1169638

Gosh. I am sorry about your situation. If she proceeds with RAI, she MUST go to an endocrinologist to get labs, move on with this. And she must learn about it. It is hard to separate Graves’ from your marriage issues, but I am inclined to be very concerned about YOU. What if you tell her that the next period of time cannot be like the past year in your marriage, and you need to work together to get therapy and help to see if this marriage will continue. This situation is not good for any of you.
What would she say? Or, if you don’t want to approach that whole thing, tell her that you both know things are not ok in the marriage,and at this time, you are hanging on to the fact that it is because she is hyperthyroid, has Graves’. But it can’t continue. That if RAI is her plan, she needs to move forward with it. It all takes a while, so it is not a quick fix. Probably surgery is the quickest fix, but as I recall, she does not want to do that. But she better take action and get well. Any family members that can jump on to talk to her/ She needs to own her disease, understand it, and do something about it.
It’s really hard to jump into another marriage, but it sure sounds like life is miserable for you, and to some extent, her. Ask yourself if this is the way you want to live the rest of your life, then see what you can do to get her to listen to you, and you to her. Again, it is tough and i am sorry.

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in reply to: 1st RAI didn’t work -must do it again #1169888

Hi, I am also in my 70’s. Some of your experience with your docs is a bit perplexing to me, so I echo Bobbi and Kimberly’s comments. Ask more questions. I think you have learned from other comments that TSH cascade is not familiar to us, not can I recall anyone having mentioned it on this board before. But, as Kimberly said, " Post-RAI, it’s really important to look at your Free T4 and Free or Total T3 numbers to determine whether the treatment worked or when you need to start on replacement hormone. TSH can remain suppressed for quite some time and is not a good benchmark for treatment decisions early in the process.

I am wondering if your primary care person is more up to date than the endo who is treating your diabetes? I have no idea, but it certainly would be in your best interest to have a doc familiar and current with Graves’.
Another question for you to ask him, is for you to ask him why it was such a big emergency for you to have RAI? Generally speaking, when we are diagnosed, ATD’s are prescribed to reduce the amount of circulation thyroid hormone that is out of whack, and a beta blocker for rapid heart rate, high BP, and symptoms associated with your body racing at warp speed.
Then, you should be presented with three choices for treatment (if you have read this board very much, this is all a repeat for you) The treatments, based on what YOU want, and your own circumstance, are: continue with ATD’s, move forward to either RAI or surgery. After any of these, we need to be followed for the rest of our lives, with the thyroid panel that has been mentioned, TSH, and the T3 and T4 labs.

You are already in the RAI mode, but I would sure ask a lot of questions before I had another RAI in this short of a time period.
Do you live in the US? Or someplace else? Best wishes with your next appointment.

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in reply to: What to ask surgeon re thyroidectomy? #1169933

Gosh, Rebecca, it seems that you are doing a very good job advocating for yourself, learning more about your disease, and you have a defined path to recovery, back to being YOU. Based on what you have said, I think the very last person in the world to advise you about anything having to do with leaving your job, your support system, your planned surgery, moving away from friends, going to your parents, is your endo. If I understand correctly, you are connected with the surgeon, is he willing to write your rx for meds at this point, sounds like it.
Far too many of us have been misdiagnosed, not diagnosed, and suffered greatly as a result. But there is hope for you. You have a plan, you can easily correct any ferretin and or iron issues you are having.
Are you willing to slug in there, continue to work? Can you get time off for your surgery? In this economy, if you want to make a work change and are fortunate enough to have a job now, you are in a much better position if you keep it. If you want to make a job change later on, it is a huge bonus if you are employed when you are looking for a different job.

You are getting so close now to regaining your life back. You can do this. If I have misunderstood anything about doctors, prescribing, etc etc, you can straighten me out in your next email. My thought is that it sounds like you certainly do not want to continue with this endo, do you have a choice? Or else, use him for what you need, while trying to explore other docs.
Shirley
In way less than a year, after your surgery, maybe even 2- 3 months after, your world will be so much better. You do not have to live like this, you have a plan and a life line to good health.

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in reply to: Boston Conference 2011 – Thank you to NGDF!!! #1169916

Although I was unable to attend this year because of two eye surgeries, I will definitely attend next year. Last year was my first time going to the conference, and I absolutely loved it! So glad you were able to go. I look forward to reading some of the presentations.
Shirley
Were there any discussions of palatal grafts to lower eyelids? I am beginning to think I am the ONLY person who has had this surgery (still recovering.)

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in reply to: Husband Trying to Cope… #1169632

Halbarad, I am concerned that endo has not taken the time to explain this disease to her and to you. Was she also on a beta blocker to control her heart rate when she had a thyroid storm?
I am hoping she could read this post. She will NOT get better unless she is working with an endo to get better. I is hard to tell from your posts, if the endo has suggested RAI or surgery, because he/she felt that she was not responding well to the ATDs (meaning that she should have felt a lot better and more like herself) which it seems she did for a short while, but this is a serious illness she CANNOT mess around with. People die from thyroid storm, they really do. She cannot regulate her own meds. Someone needs to tell her this, probably not you, based on your current situation.
Is there ANYONE she will listen to? Does she have a primary care doc you can talk to about your concerns?
I am not sure is she is taking 5mg because she has decided to, or if it is prescribed. But the labs cannot be relied upon, nor can her symptoms, if she is making decisions about her dose of ATD. AND, ATD’S work very well for a few people, but not all people. RAI and surgery are very good choices to manage Graves’ ATD is too, depending on working closely with the endo regarding symptoms. She certainly does not need antibody testing every six weeks, and I am surprised the doc orders it, or that your insurance will continue to cover it.
I wonder how your wife can learn about graves’ and begin to believe that she will be better again, but it is a path that takes a while, and it is a lifetime situation. I am so sorry it is rough for you right now. I was one of those crazy, argumentative, hostile wives at one time. It was terrible for my husband and child.
Do keep writing, it really is helpful to know you are not alone.

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in reply to: Smoking and Graves Disease #1169364

Hi Mary, I suggest you see a neuro opthalmologist to check your eyes carefully, and your visual fields. The visual changes you described can be very serious.
Thank you for your post. You have done a wonderful thing for yourself, as have all the other folks who have stopped smoking.
I am sorry that your husband smokes cigars in the house. I would like to ask him to please smoke outside. I have not seen a cigar smoker for 30 years, but in my part of the world, anyone who still does smoke, has to smoke outside. It has been banned in restaurants, all bars and taverns and all public buildings and hospitals…all good ideas.
Shirley

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in reply to: What to ask surgeon re thyroidectomy? #1169926

REBECCA!!!! I AM SO SO HAPPY FOR YOU!
This is wonderful news. It is 0200 in your world now, so you will see this post in the morning.
This is such a marvelous affirmation for you. I hate it that you have lived all these years undiagnosed. Unfortunately, it is more common that it should be. ESPECIALLY because we are female!
Finally, there is progress in medical education, primary care, ob/gyn and internal medicine, for docs to THINK OF GRAVES’ AND DO A VERY SIMPLE THYROID PANEL.
So, you will have surgery as soon as he finds a slot? Great. You will be so so so happy.
I think I pretty much described my experience, but be sure to write with all your questions and worries. We will help you through this. along with the surgeon.
Good JOB, telling your primary care doc to write a note in your chart, saying that you had undiagnosed graves’, which explain all those symptoms over all these years.
And…it is a damn shame that you have experienced all of this. I am so sorry. Believe me, if I have another trip to England in me, we will be sure to meet! I travel "cattle car," and it is getting harder and harder as i get older. But I would love to return to England one more time.

I will go to bed, thinking of you and your happiness.
Shirley

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