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in reply to: Hi- new with a few ?’s #1064101

HI, welcome to the board. It does sound like you have an endo who is doing the right things, gathering appropriate. Following Ski’s recommendations, you will be golden. Definitely it is your decision, you will need to be treated, and Ski summarized that.
There definitely is a longer waiting period with RAI. I was 24, had just had a baby who was about 8 months old when I had my thyroidectomy. I was ready to get pregnant again, with the surgery, I basically recovered from it, was fortunate to end up in a euthyroid state, and got pregnant soon after. In your situation, you should consider the waiting period with RAI, which is considerably longer, and that may tip your decision toward surgery. A pediatric endo and high risk ob are definitely good ideas.
After you read a few posts, you will realize that there are a lot of women in your situation. THe time factor is a real consideration.
It is a really good feeling to weigh the options for treatment and make your personal choice. THere are several people on the site who have had the surgery very recently, so you might like to read their posts, too. You will probably find most of them if you plug in the word surgery. My experience was great, happy with my choice.
Shirley

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in reply to: Any feed back on NMD’s? #1064109

Ski’s reply to you is exactly how this is for all of us. Her points are very important, and it is likely that the naturopath will say the same thing. I can’t think of anything to add, except that I am glad you found this site. It is very valuable to all of us, and reassuring that we are not alone. If you read some of the prior posts, you will see that there is no quick fix, that it is most preferable for you to have an endocrinologist while you are experiencing Graves’.
Shirley

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in reply to: Progress update #1064131

Hi, it is so nice when people like you who are a bit "further down the road," write in with news of how they are doing.
Thank you!
I am lost in terminology with your email. When you say your levels are HIGH, do you mean your TSH is high? Or your TSH is low? Or neither. If you are referring to you labs, to me that means you are low on thyroid, thus taking some.
If you are referring to HIGH, as being hyper, I don’t think you mean that, do you?
It seem like you really would like to do the 12 week program at the Y. I wonder if it worth re-visiting that question with your doc. Maybe he does not understand what you will be doing. If you have a normal heart rate, and run to catch a bus, you will have an increased heart rate, and I think it would be very normal, but not concerning, if you increased your heart rate with exercise=unless you have a fast resting heart rate. I hope you can take the program. Just want to be sure you and your doc are on the same page about it, so you don’t refrain from doing something you want to do without a valid reason.
maybe i am misunderstanding everything….

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in reply to: just want to say thanks #1064138

How are you feeling now? Any better? When is your appt. with the endo? Are you still super tired? When I was hyper, I don’t think I realized how sick I really was. Unfortunately, there was no wonderful support this site offers. When I got even a little bit better, I thought I was DONE with Graves’. Big mistake. But now, things are not as bad as they were. It is good to remind ourselves that there so many people who do not use this site anymore, for they have gotten better, probably don’t even think of Graves’ every day like we do! Someday, you will be back to baseline, moving on with your life, and can write a note back saying that there IS hope of having a life again, and not needing this site. They have moved one, and one day you will too!
Keep us posted. IT is a wonderful, safe and informative place to vent.
Shirley

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in reply to: just want to say thanks #1064137

Your thoughtful post certainly represents how I feel about this site. Believe me, you will have many opportunities to "pass it on," and help others. YOu already have! Thank you for reminding me how much I get from this site, and how much I want to give back to others.
shirley

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in reply to: Post-RAI Gastroparesis, Anyone? #1073554

I was diagnosed with gastro paresis a couple months ago after a gastric emptying study, which is a very long diagnostic test, where you eat nuclear tagged egg whites, then have sequential xrays for the next seven hours to determine when/how much gastric emptying occurs.
My gastro paresis began as my Synthroid was being reduced. I have had a long standing history of low TSH, between .02-,04. Felt fine, but agreed to slowly (over the past year plus, reduce Synthroid (was taking 125mcg) to get TSH in normal range. My TSH did not budge over that time, and T3 T4 were normal range. But, despited being hypER by the labs, I became a zombie with every symptom of hyPO, except weight gain. Sluggish, always pathologically cold, wanted to go to bed six times a day. About three months ago, I began complaining of a mass under my right ribs. The first thought of all docs and myself was that my breast cancer has metastasized to liver or pancreas. All tests negative. I just could not eat very much at all, began to lose weight. Endo referred me to GI, first had endoscopy, then the gastric emptying study. I flunked flat. All food sitting there 7 hours later. Endo, GI doc, oncologist and myself all realize that when hypo, constipation does increase. There is not much about the upper GI tract. But I told the endo I have given it the good college try, and I wanted my Synthroid gradually increased, and the increased risk of atrial fib and osteoporosis be damned, for my life was close to a dead end, not being able to eat. Increased the Synthroid, problem gone. At 100mcg I am back to feeling fine, despite that my TSH and other labs do not wiggle an inch with the changes from 150mcg down to 77mcg.
Noone can explain it. My heart goes out to you, experience gastro paresis. It is terrible. Eating is a very social thing, as well as being necessary. I am familiar with domperidone, it sounds like you have a good doc, and if it helps your gastric emptying, that is good, for there are not many options for this situation. The other one, as I am sure you know, can be taken for a short period of time.

It seems you have a good team of docs, and that you have a complex set of issues at this time. Lots of stuff has been ruled out, and that is good. I sure hope you arrive at a resolution which explains your symptoms.

Have a question. I don’t see anything about taking selenium to enhance thyroid, except anecdotal thoughts by health food companies. Maybe Kimberly and Bobbi can comment on that. I just want to be sure it is not a confounding variable in your history, or something that might be contraindicated to take.

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in reply to: Questions #1064147

Hi, I agree with Kimberly and Bobbi. Without exploring the surgical option, WITH A SURGEON, you do not have a balanced view of the two options. I am not very comfortable with your doc saying that your levels are too high for surgery. It follows that they are also "too high" for RAI, and that seems to be fine. Your endo is not really qualified to make that statement. He is not a surgeon. I am not inferring that they are too high for anything. I am thinking of you, and your preference, and having enough information to be calm and happy with your future treatment because it is your choice. I choose surgery. I wanted surgery. I got surgery. But neither option was pushed one way or the other. Radiology and nuclear medicine are very lucrative fields. That’s fine. But I feel uncomfortable that he made the statement pushing RAI. Maybe the rad/onc docs are his friends, and like his referral base.
Just a thought.

Re Xanax. I know that some folks on this site have taken this drug. From my own experience talking with others, and from my knowledge of the drug, this is an anti-anxiety drug that is really very hard to stop taking for many people. They become very fond of how it makes them feel. It has its’ place, but I suggest you talk with a pharmacist you know will take the time with you to discuss that drug, compared to other anti-anxiety drugs. When I was toxic, I was a nightmare, anxious, irritable, etc etc. but it is one of the ramifications of being hyper. My thinking is that managing the thyroid issues which cause the anxiety is preferable to beginning to take an anti-anxiety drug. Having said this, in some situations, it could be ok for a short period of time.

Re memory. Try to have yourself and your family keep track of these episodes. NOt that you need another issue to deal with, but a consult with a neurologist would be an excellent idea if they persist. That is a lot period of time to lose all memory of events. Best wishes in all things, Shirley You will see a happy end to this whacky disease.

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in reply to: First lab results back – can’t interpret them #1064231

Agree. Antibody test has nothing to do with treatment, and they can be normal and you can still have graves’.
Is this the first time you are on the board? Welcome. Were you hyper, taking anti thyroid drugs and aiming to get less hyper? Not sure where you are with your "journey!!"
Shirley

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in reply to: puffy eyes six months after RAI #1064235

Hi Susan, if you are reading about this, the name used is TED, thyroid eye disease, not GED. If you use the search engine, and enter TED, you will see lots of posts about it, including many of mine. Briefly, there are two stages of TED. The inflammatory stage, which is the first one, and it can last 1-2 years. It is sometimes called the "hot phase." Next is the fibrotic stage, sometimes called the "cold phase." I totally understand your discouragement. I have had the first stage for about 1.5 years now,and it occurred many, many decades after my hyperthyroid state. I did not have RAI, I wanted surgery. Like you, I was fine for over thirty years. My eye situation did get worse, with double vision, extreme light sensitivity, dry eyes, eye drops, lubricant, all the rest. I was so so discouraged. The first doc who diagnosed it, held up two fingers on one hand, and five on the others.
He said that this was a long haul illness, and that the whole course of the disease would take as much as two years, and there was a POSSIBILITY of five surgeries. Of course, this is related to if you do/don’t have double vision, if there are complications by having swelling on your optic nerve, and if eyes bulge so much that they require or patients prefer to have the surgery which makes them not have bulging eyes, look like they are staring.
From my own experience, I saw a neuro-ophthamologist, who tested visual fields and color vision, and since my double vision was so bad at the very beginning, was also going to a pediatric ophthamologist, for more measurements. After a year and one half, on 9/22,I will have eye muscle, or strabismus surgery, to move the muscles in an effort to help the double vision. My eye shape has changed so much, that after that I need to have eyelid surgery.
I KNOW that this is discouraging right now. Do you have further appointments with the two docs?
The facilitators will be writing to you, and they are better than I am at providing information that will be helpful to you.
I am in the middle of TED, and everything I have said here, represents my experience with TED. I hate it. But it WILL end.
The reason I go to the neuro-eye doc is that he moniters my optic nerve, and vision in general. There are very very rare instances when people with TED begin to lose vision, one of the first signs is not seeing the color red as well as you used to.
This can be serious, requiring a surgery to relieve the pressure on the optic nerve. That is caused by the swollen muscles in the eye (if you have it) and increased orbital fat (if it is there.) I am one of the extremely small percentages of people who did have to have an emergency orbital decompression to make more room in my eye for all the nerves, especially the optic nerve. It worked fine, but I sure was glad I had someone monitering me carefully.
Shirley

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in reply to: Looking for a Doctor Rec in San Diego #1064238

Hi, welcome to this wonderful board. I sure am sorry you are unable to attend the meeting. I am going there from Seattle, and I am soooooo looking forward to meeting others in my situation, and to listening to the speakers. You will be hearing from the facilitators, but in the meantime, look back at some posts about hyper from Kimberly and Bobbi. Sounds like you are miserably hyper at this time. It is very difficult. AND it is very hard on your body. I am not in a position to talk about doses, but your only goal right now is to take antithyroid drugs (ATD’S) so your body will stop running at warp speed!
You will definitely feel better when you do achieve the state where you do not have too much thyroid. I can’t speak to the doses of meds, but you need to find out why he is uncomfortable increasing your dose. Your biggest goal right now is to get OUT of this damaging hyperthyroid state.
This is one situation where alternative medicine alone is not safe for you. There are many ways you can incorporate a holistic and alternative life style in your world, but you also need a good endocrinologist! There are two good resources to find endos specializing in thyroid disease. If you go to the search engine, you may be able to find them before the facilitators sign on with that information. I am too tired and too busy getting ready for a flight tomorrow to take the time to track them down, sorry.
This is a good, safe and reliable discussion group. A great place to vent, and hear from others in your situation. We are not medical professionals, but all of talk about our medication doses, our frustrations, our decision making and much more.

No doctor should be pushing any one treatment on you. That’s for sure. It is good to have an open mind about the ultimate treatment of your Graves’. Some people on this site have chosen RAI. Others have chosen surgery. A few have stayed on ATD’s for several years. Generally, you have a choice, and it can be your choice, weighing the pros and cons, which exist with all of the treatments. Frequently the con can be totally personal, like, "I know I don’t want RAI. That’s it."
Or, "I absolutely do not want surgery. No discussion." We are all here, and all satisfied with our choices, because we
made them.

The east coasters will probably not write tonight, for it is already midnight there. Until you hear from more people, using the search option above is a really good way for you to go tonight. Just type in the word you want, which is probably hyperthyroid.

This is a disease that does not have a quick fix. Everything takes a long time. Just wanted to mention that if you are taking a lot of supplements, they should be know by your docs, just as regular meds should be known. YOu mist certainly deserve an endo who will not poo poo your life style. They are out there! A smart thing to do because there are some interactions which decrease the efficacy of any given drug, and/or enhance the drug, which can be equally detrimental.
Just curious. Has the atenolol decreased your heart rate at all? What is it now? Has your BP gone down at all? I had every ssymptom you had, and it is really a hellish state to be in. Generally speaking, ATD’s are the first step to have less thyroid racing through your body. i think if you use the search for your ATD drug you will see lots of posts of folks who do talk about their doses. From what I remember, 20mgm/day is not high at all.

If you put in the search box "how to find an endocinologist" you may hit paydirt with those referrals I was mentioning.
I am trying to give you more things to read until you hear from more of us! Off to pack for Iowa now.
Shirley

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in reply to: Optimum level to get pregnant #1064256

Hi, I am wondering WHY you are on a low iodine diet? I’d check with your endo. I can’t see any reason for that, unless it is medically necessary, and you understand the reason for it. Is is something you decided to do? I am not a medical professional, none of us are, but from my experience, this becomes relevant related to RAI, or in some thyroid cancers.

Another question. Your T4 looks fine, it is in normal range. Seems like it just needs to be monitered? That is one value, and you must have a series of your thryoid studies to see the trends? And I think you addressed that by saying that it has always been in the normal range over time. Normal ranges are arrived at by much clinical testing, they are not very arbitrary. Seems that your endo is treating your doses because of your suppressed TSH, that makes sense to me. He/she can’t very well made medication decisions on normal ranges, and that is the only thing out of whack.

I don’t know if you FEEL hyper, or if you don’t. Is your heart rate fast, are you heat intolerant, are you losing weight, are youa anxious, irritable, unable to sleep, having your body run like a overheated motor all the time? If all these things are applicable, then a pregnancy is not the right thing to do right now. Not a good idea for you or baby.

Since your other labs are in range, except for the TSH, it seems like your endo is working with you to get that up a bit.
Sounds like you have a good endo. Ask him/her if they will manage your thyroid when you are pregnant.
You are at a nice age to be getting ready to get pregnant (:

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in reply to: Optimum level to get pregnant #1064253

Hi Rainie,
You got some good posts from Kimberly and mamabear. You might consider going to a high risk ob gyn, make that acquaintance, have them in close touch with your endo, when you are ready to try to get pregnant. I don’t know what TTC means, but I thought a bit about it, and guessing it means "trying to conceive?" Not sure how old you are, but I have learned in the past few years, that age (high thirties,early forties, is, by definition, a "high risk" patient. But, for sure, I really don’t know what I am talking about. However, having Grave’s’ and being pregnant seems to me an indication for you to go to a high risk ob/gyn.
It has been mentioned many times on this post-but, if at all possible, get your lab before your endo appt, so you have something to discuss at the appt, saves you a lot of frustration and phone calls.

After hearing the stories of others on this bulletin board, i sure feel lucky to be able to have access to all of my medical info electronically! I had labs yesterday at noon, and was able to see all of them at 10pm last night.
Shirley

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in reply to: scarred #1064278

Hi Dianne, I was orginally hyper, had a thryoidectomy, now on Synthroid. I developed TED about 1.5 years ago. All your eye symptoms, plus extreme light sensitivity, eyes that tear all the time, yet they are dry, and big time double vision.
I am so glad the prisms helped you with your double vision. Mine did not help at all. I do have a couple suggestions. It is my understanding that during TED, it is good to be followed by a neuro-ophthamologist. They are the ones, who, short of a bettetr description, are the "keepers of the optic nerve." They moniter visual fields, not just with wiggly fingers, but with machines, and do a lot of charts of color differentiation testing.

I am one of the VERY VERY FEW who actually did have decreased vision, decreased ability to sharply see colors, (red is the first to change. That meant I had optic neuropathy. That meant that my optic nerve was being compressed by the increased mass of fibrosed muscle and orbital fat. So, I did have a surgery called an orbital decompression (OD) to save my vision in my left eye.
That worked fine.
I am at the place now I am done with the inflammatory stage of TED. I think if the prisms had helped my double vision, I would have had them for a long time, to see if I could see well enough, and was happy with them. Other than not helping me at all, I found them quite blurry. because that option is out, I will have the eye muscle surgery (strabismus surgery) to move the muscles around a bit with the goal of eliminating double vision when I look straight ahead, and help quite a bit with looking up. I am not apprehensive about this surgery at all, looking forward to it.
Some people with TED have OD surgery because their eyes bulge way out of their heads, causing dry eyes, and a look that looks like you are staring all the time. It is a medical choice, not a cosmetic one.

Graves’ is stressful, but most people end up having it controlled. You won’t hear from all the folks who are just fine now, because they are not writing on the bulletin board anymore!
TED has been very difficult for me. I have hated the past two years. Ithink my double vision was not recognized before that, either by myself or the eye docs. They just kept changing my glasses RX! My reading, downward vision is not affected.
But having double vision while looking straight ahead, was finally bad enough for me to notice it.

Ask you eye doc about seeing a neuro/eye doc. see what he/she says. somebody should be monitering your visual fields on a fairly regular schedule, about every 2 months, or if you see any changes in your vision yourself.
Shirley

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in reply to: RAI then child. Did I cause this? #1064266

My guess is that there is no relationship at all. Nada. Seems like the best course for you to take is exactly the one you are taking. Another lab in a month, just to see if a lab error, normal variation, or what. If you have continued concern, I suggest you take him to a pediatric endorcrinologist, for a baseline visit. The endo might be the best person to answer all your questions regarding your son, RAI, etc.
Welcome to this board, it is great. The facilitators are a great source of information, and so are the people who post.
Shirley

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in reply to: Just wondering? #1064314

If you put "RAI and steroids" you will find a lot of recent conversations about this topic.
Shirley

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