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in reply to: Want to have baby #1063006
Glad you have made your decision. if it continues to feel good, then it is the right one for you.
One comment. It is my thought that an optometrist may not have the training or the equipment to assess your eyes, try to determine if you do/don’t have TED. It’s just not in their job description and field of study. I suggest you ask him/her
to refer you to an ophthamologist who is familiar with Graves’. Or a neuro-opthamologist. Just another thing for you to explore. To prepare yourself for an eye exam, have a pretty clear list of how your eyes have changed, or are changing. Someitmes an orbital CT is ordered to confirm the diagnosis. Maybe you just have subtle eye swelling and puffiness, and thar’s it? But if you eyes continue to get worse, you do need to be seen and followed by a neuro-ophthamologist.
Look forward to hearing from you again.
Shirleyin reply to: Want to have baby #1063002Hi Pinky, the issue here when a Graves’ patient is hyperythyroid, by symptoms and by labs. If you were NEVER on ATD’s (anti-thyroid drugs) then the issue is not an issue.
I am glad Kimberly wrote. I did not have the accurate information from the conference.
I sure would want to be on ATD’s when diagnosed with Graves’. Being in a hyperthyroid state, with all the associated symptoms of tremors, intolerance to heat, irritability, inability to sleeo. anxiety, etc. etc. From my view, what I have learned from my own experience, and from what I have read from (I think all posters) and the facilitators, the first steps to protect your body and your heart is to begin ATD’s, and beta blockers for fast and racing heart rate. All of this is to feel better, and decrease the risk of thyroid storm, which is an acute medical emergency.Re Kimberly’s reference to Batelena’s study (which was referenced in a lecture at the conference.) As she said, it is a controversial issue, that is for sure. My personal experience with steroids for TED is that I had them several times to reduce the swelling, which, in turn, reduced the pressure on my optic nerve, which, in turn saved my vision until I could have an orbital decompression. Steroids are an anti-inflammatory, and they have big time serious side effects. They are absolutely wonderful in certain situations, such as mine with my optic nerve atrophy, and with severe asthsma attacks, and more medical conditions. BUT they work when you are receiving them, and the symptoms come back after they are tapered and the steroid is discontinued.
I think it is good to gather information from our endos, read opinions on this site, which empowers us with more good questions to ask them.
Here is one review of Bartalena’s study by a guy named Ahlquist in the British Medical Journal. If you read it to the end, you will see that (as Kimberly said) there is controversy among the medical community. And is not even close to being recommended as a standard of care to recommend prednisone for eye symptoms and RAI.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116915/If I had eye symptoms, I would not have RAI, and I would not have steroids so that I could have RAI. There is certainly room for other thoughts and opinions on this issue.
Shirleyin reply to: Want to have baby #1062998I don’t know! It has always been my understanding that treatment with either RAI or surgery needs to happen after hyperthyroidism and the associated clinical symptoms of being hyper, are managed by ATT’s and beta blockers. It is been my understanding from docs that it is dangerous to move forward with either treatment before while having too much thyroid hormone circulating, ie, a hyperthyroid state. I guess on Monday, you should call your endocrinologist, ask his thoughts on the subject.
As I said, I am operating on what I have been told. Perhaps there is new literature and evidenced based studies on this subject. But hyperthyroidism is a relatively dangerous place to be, so it seems safe and logical to me to be close to, or in a euthyroid place, accomplished by ATDs and beta blockers, before the next treatment of RAI or surgery is done.
Shirleyin reply to: Want to have baby #1062996You are doing beautifully in your process! You can tell from lhc11, Bobbi’s, Ski’s and my comments that our own views, needs and opinions- AND fears, valid or not..come into play. A fear is valid if someone has it, but sometimes goes away with more information. I do think we should pretty much respectively and respectfully address our own experiences, though. My experience is that after surgery, I went back to work full time as an RN on a very busy floor. I was never nauseated. In retrospect, I wish I had gone back part time, to simply enjoy the extra time off when I felt good, to organize stuff in my house and go out to lunch with friends. I cannot see my incision, neither can anyone else. There was not any fiddling around with my Synthroid dose when I started it. It was several years after my surgery, and two more babies, before I needed to begin Synthroid, because I had a little thyroid tissue left (on purpose) which supplied just the right amount of hormone to be in a euthyroid state.
I happen to have worked in a recovery room for the past 10 years. My experience at a very large academic medical center, where i have prepared hundreds of people for various surgeries, is that I have not met one person who is worried about anesthesia. In the pre-op area, there is plenty of time to visit with the anesthesiologist, say any concerns you have, and have them addressed. A few worried about being nauseated, primarily hearing about it from people who had surgery a long time ago, or had huge long surgeries. But this is not the subject here. It is almost a total non-issue for today’s world in medicine.
The relationship of nausea is directly related to lengthy procedures of 5 hours or more, and/or big abdominal surgeries.
P<S. the day after surgery, I went for a walk.
Re your labs, no matter what you do, they say you are hyperthyroid, so your ATD has been increased. Whatever your choice, you will not have either procedure until you are more regulated with the ADT’s. Lhc11 explained that very well.
Shirleyin reply to: Want to have baby #1062989Hi smj78,
you re doing a great job. Further, it sounds like you have good access to good docs, whatever your decision. Ask Ski said, bottom line!? Treatment is treatment! I have had a need to have anesthesia several times, always an excellent experience.
YOu will slug through this, and pretty soon, one of these choices will seem "right." The one factor that you will probably want to include is the length of time from RAI to beginning to conceive, is longer than after the surgery. As lhc11 said in her post, that was one of the compelling factors for her.My experience for myself has always been that indecision and limbo is quite stressful. Once I make a decision, I feel at peace with it.
Nice that you were able to see all those docs this week!
ShirleyHi Busymom, if there are significant changes in your liver function, then, as Bobbi and your doc have said, there is reason to stop the ATD your are taking for that reason. I don’t know if you have tried the other the other antithyroid drug, METHIMAZOLE (Tapazole.) I think it is more commonly used now than PTU, you can check that out with your doctor. But it also needs to be watched with labs for any changes in liver function.
So, you have given it the old college try to attain remission, and to use ATD’s if you do become hyper. But this is not working for you because of the potential for liver damage. In your case, your labs reflect changes in your liver function, so another decision needs to be made.
You did not mention if you are in the hyper stage right now. But if you are euthryroid, and your doctor is suggesting tht you go off ATD’s, now is the time for you to consider the choices of RAI or thyroidectomy. It is nice to explore both options. There is no wrong answer, really. You do, however, need to get referrals for names of surgeons who routinely do thyroidectomies. We learned at the conference last fall for the surgeon who gave the lecture, that 50 a year is a good number. If you happen to live in a town without access to a larger medical center, it is less likely that you will find a surgeon who regularly does this surgery. There has been A HUGE AMOUNT OF DISCUSSION on the posts in the very recent past. Please do use the search engine, putting each of those words in, and reading their posts. lch11, has recently had surgery, and she has written a lot about her decision process to come to that conclusion, and she is very happy with her decision. We can’t live without a functioning liver. But we can live very well without a thyroid.
I ad the surgery, I am very happy with my decision. Others are on ADT’s, including several of the facilitators, and they are happy with their decision. If any of them had changes in liver function, they would be in the position you are now, looking at the remaining two alternatives. Bobbi’s point is well taken. And, of course, many have chosen RAI, and you can read a ton of posts about their experience with RAI.
Keep us posted! Glad you wrote.
Shirleyin reply to: Want to have baby #1062981So glad you are hearing from lch11 and Laurel. It helps so much to hear from people who have been exactly where you "are."
REgarding eye involvement, lch11’s second post addressed pretty much what I was going to say. There is some evidence of RAI exacerbating already present eye symptoms. That relationships does exist. It does not with surgery. So it is very good idea for you to go to an eye doc who KNOWS GRAVES’ (many really don’t have much interest in it.) Just another factor to throw in your decision making bucket! Generally, TED is diagnosed by an exam, symptoms, and an orbital CT for confirmation, and degree of involvement.Regarding the chance of being hypo after treatment with either RAI or thyroidectomy. It IS possible. At first, you can feel hyper if there is much remaining thyroid circulating around. It will go away. But in the meantime, a doc COULD treat you with ATD’s for a short time until you thyroid hormone is used up. This would be uncommon, but if you were super hyper, it needs to be treated. This balancing act could make you hypo for a short time before replacement was started. OR, after treatment and before starting Synthroid, a replacement hormone (or a generic) BECAUSE you don’t have much or any hormone circulation, and ALSO have not begun replacement, you could feel a little hypo. I am only mentioning this because you asked the question. After my surgery, I felt fine, neither hypo or hyper. I got Graves’ after a baby, had the surgery when he was @4 months old, then got pregnant within 8 months or so with my second. But that was in the days when they left a tiny bit of thyroid gland to produce a little bit of thyroid hormone, so I was euthyroid after the surgery, with neither too much or too little. They generally do not do that now. Today, the intent is to knock out all thyroid production and use the replacement hormone to get us to the euthyroid state. Everyone ends up on thyroid replacement, including myself. It is necessary for good health and life. Fortunately, the replacement is cheap, safe, and the same as our own natural thyroid hormone.
Best wishes with all of this, you WILL get through it.
in reply to: TSH that won’t behave #1063014Hi ewmb,
Is this you? Or your dad? Hope you can make it to the appt. The weather sounds bad down your way!
Shirleyin reply to: Post ablative Hypothyroidism in elderly #1063018hi, ewmb! You’re right! Haven’t heard from you for a while! Welcome back.
Well, my thought is that you are 100% right, and you know it. As you said, he should have been followed all these years.
His health care providers are really done a disservice to him by not correlating his labs with how he is feeling, and prescribing his replacement hormone accordingly, which really is sad.After my surgery, I was "normal" or euthyroid for almost 20 years. But did have labs, and felt fine. Then I tanked, felt all the symptoms of hypo, the labs reflected it. Began Synthroid, have been on it ever since. THAT’S how it should work.
I do think, too, that he needs a different endo. What she says, does not make any sense to me. In my opinion, she either is definitely discriminating against an elderly man, and/or her medical training, or common sense, is sadly lacking in the endocrine system and Graves’. The TSH is climbing, and he has hypo symptoms all over the place. Why not begin Synthroid, see if he feels better?
I guess the next step for you is to advocate for and with him, if he will accept that. Find another endo, or maybe even go to his primary doc with him, do another lab, and see if this doc will begin some replacement to see if it helps your dad. I sure know how I FELT, and my TSH had climbed, but was still in the normal range. I was HYPO AND MISERABLE!
How are YOU doing??
Shirleyin reply to: new Graves’ diagnosis and High grad abnormal pap #1063026Hi, I am glad you found us!
You have had quite a week! Here’s my thinking…With the PAP, it might be worth asking for a repeat. If the results are the same, I suggest you go to a gynecologist for further follow-up. There are some simple procedures to further clarify what you are dealing with, and what, if anything, needs to be done next. I think it is completely unrelated to Graves’, but you will Your primary care doc has found two conditions, and both probably are appropriately referred to an endo and a gyn doc.
With Graves’, you have plenty of time to decide on how you want to manage your Graves’ long term. That said, you are NOT him, ( your doc,) and I would be happier if he had told you about the three options without pushing you in any direction. I am assuming that your family doc has given you this info, and you are seeing the endo next week??
As Kimberly, said, everyone on this site, past, present and future, has decided on one of the three options, for their own reasons. So follow her, use the search engine, and begin to learn about them. YOu will find that the people who had surgery, chose it for their own reasons, which may include that they did not want the other two options for one reason or another. And I could say the same thing about the other two options. I chose surgery. Recently, someone chose I-131.But I think you will find that after you see the endo, and you do indeed have Graves’, if you have the hyper symptoms of Graves’ -racing pulse, tremor when you hold your hands out, anxious, increased appetite, heat intolerance…that the endo will probably begin by prescribing an anti-thyroid drug to get less thyroid hormone racing through your body. And most likely, a beta blocker to control your heart rate. That is how we all begin!!! And that is the first order of things.
So tomorrow, you will have more info, learn some more.
Write again.
Helpful thoughts for your appointment.
1. Sign a medical release of information form at the front desk, as to have copies of labs, tests and visits sent to you for your own file. This is true of any doctor, any time.
2. If your endo talks about lab tests he/she will want in the future. ask how you can get them ahead of any visit, so you have results to discuss during your appointment.
Shirleyin reply to: Concerned about mood #1063080Christa! I am so HAPPY for you! And I am so relieved that you have taken care of yourself by being proactive about the meds.
Plus, a great and wise creative move, to contact the local doc whom you know well. I agree that he most likely can manage your thyroid issues, PLUS he has a vested interest in you and your family, so the all vital good communication already is established. He can always refer you to the endo if there some reason to do so. Or consult with the endo on the phone.
I am so relieved that you are back on your meds, with an RX that will keep you protected.Do write after you TEE. I’ve had it, it is pretty easy. It will tell a good story about your ASD, the degree, existence or no, etc. etc. Gives better info than a regular echo for an ASD. Glad you are following up on that , too!
Of course, you are welcome. If anything I have said, is helpful, that’s a good thing! We can help each other on this post!
Keep writing!
ShirleyHi again, Heather!
OF COURSE you are a bit scared and apprehensive of the idea of surgery! Everyone is! So, welcome to the world of being a normal human being! I do encourage you to explore the topics I mentioned in my last email. There are so many good and reassuring posts, addressing exactly the thoughts you are having. I think you would love to read them.And the posts sent to you under the "weight gain" subject are great for you to think about. Ski’s latest post, is very wonderful, combined with the post before by Kimberly.
Everyone here is your friend, and her for support. We have all had some REALLY hard times, and things do get better, Really really, they do! So glad you wrote.
Shirley
Be sure to use the search engine to check some more posts!in reply to: DRIVING AND TED #1063049Hello, FindingMe, welcome to the boards. I think you will find them very helpful.
I see your experience with a very different view. Clearly, you are doing a good job in trying to find help for your life changing vision issues, known as TED. Regarding what the doctors said, in all cases, I think they said reasonable and professional comments. Really! With the multiple deficits you have regarding vision, it does make a lot of sense to tell you not to drive, and this is based on your own comments about the problems you have seeing. The second doctor told you basically what you have been doing. Because TED can change from day to day, there may be days when you DO feel more comfortable driving.
A cloudy day, in the daytime, when your double vision demons might be a little less. And, though it may surprise you, the third doctor, who suggested driving with one eye, well, that makes a lot of sense, too, given at this time, you ARE driving some.
I think closing one eye is not the regular routine you should use, BUT it is a fact that when one eye is covered, you do NOT have double vision. There are people who do drive with a patch or a contact that block vision in one eye to avoid the double vision.
So, yes, they are specialists in Graves’, and none of them have done any disservice to you at all. I am not sure what you expect, or wanted them to say??Doctor #4. This physician is most likely correct. I am not sure how much you know about TED, and again, there are wonderful posts on this board about the progression of TED, and probably one of the facilitators will chime in on this topic.
Briefly, the sequence goes like this, in chronological order. Diagnosis, active phase, (or hot phase,) where eyes are changing all the time.
Seeing eye doctor familiar with Graves’, usually a neuro-eye doc, and in your case (and mine) an eye surgeon who will follow you until the the cold phase. The neuro-eye doc checks vision carefully, to be sure your optic nerve is ok. The eye surgeon doc moniters double vision, and for some people, prism glasses are prescribed, which decrease,and in some instances, eliminate the double vision.
THEN it is time for surgery. Unlike you, I counted the days and minutes for the past 1 1/2 years until I could HAVE SURGERY!
It is wonderful! Nothing else will help. check at the end of my post to see what I have already had, and what I am planning to have! My next surgery is Feb 1, on my upper eyelids, and I am SO SO HAPPY that i have gotten to this stage.
The surgery that helped get rid of almost ALL my double vision is strabismus, or eye muscle surgery. It is a piece of cake to have.
Regarding guarantees. I see that differently than you do. The guarantee you have if you do nothing, is the life you are having now. It doesn’t have to be that way! I regarded it as a living hell, and I am so grateful that I was able to have surgeries to help me get back in the almost normal vision world. I also have extreme light sensitivity, and much tearing.
Well, I will be interested in what you think about my post.
Shirley -
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