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in reply to: organic brown rice syrup… arsenic? #1170630
I read that in the NYC tribune, some SEattle papers,and on NBC AND ABC news.
Here are a couple references:http://www.king5.com/news/Arsenic-discovered-in-organic-brown-rice139490848.html
http://www.huffingtonpost.com/2012/02/16/organic-brown-rice-syrup-arsenic_n_1281675.html
I had never heard of organic rice syrup in my entire life. The research seems to show evidence that it is a carcinogen. Apparently it is used(improperly, in my opinion) in some infant formula, and certain granola bars.
But the data from Dartmouth seems reliable.
So I think anyone should be concerned about eating products with this ingredient. And you are correct, it apparently is in a lot of energy bars.
I took a quick look at a few cereals and crackers at the store, though, and did not find it listed. So I will be checking labels for the food i consume. Generally, except for cereal I don’t eat any of the products mention.
Thanks for this information.
ShirleyHi Sarah, I am glad you wrote today, and that you have an appointment tomorrow. I am not familiar with the scale you mentioned at all. I am another patient who has Graves’.
But the fact that your resting heart rate is that fast, is quite concerning. That is quite hard on your poor heart for any length of time. I have worked an an RN in cardiology for many years. This is something we would definitely page the doctor about. The goal would be to slow the heart rate as soon as possible, in the hospital setting. So it seems that you have a very good doc, who wants to see you again soon. She’ll want to see if the beta blocker is helping to decrease your heart rate. You can help her a lot by checking your heart rate several times a day. Before you get up in the morning, then perhaps every two hours, just so you can report this information to her.
The big reason for taking those drugs are to decrease the amount of thyroid hormone, and to slow your heart rate. The propanolol is the drug that will slow your heart rate. You do seem to have untreated hyperthyroidism (Graves’) and that can be dangerous.
Regarding your trip, be sure to tell your doctor of your plan to fly on Wednesday.
Do write again today after your appointment, tell us how you are how you are feeling, and what the doctor said. I am so glad you have health insurance again.
Shirleyin reply to: Botox in lieu of muscle surgery #1170550I agree with Bobbi. Botox is definitely a temporary, and ongoing fix. Strabismus surgery is a lifesaver for people with double vision (diplopia) because of TED. When affected, the muscles of the eye are fibrosed, meaning they get thicker, and less elastic. The double vision results in the area of the muscles affected. Maybe this is not your situation at all so that it bothers you?
The doctor who does strabismus surgery is almost always a pediatric opthalmologist, who includes adults with TED in their practice.At this point, it sounds like you are consulting with a “regular” opthamologist, not an oculofacial surgeon, and not a pediatric opthalmologic surgeon. Is this correct? Does the person you are seeing now perform surgery, and what kind?
I look forward to hearing a bit more information about where you are with TED, and which doctors are providing care.
Shirleyin reply to: eye muscle exercises? / Hot phase? #1170577Hi, i am glad you are seeing a neuro-opthalmologist. It is very good to have them on board at the beginning of TED.
You have good questions, and be sure to ask them when you see the doc.
In the meantime, you can think on my answers which I have learned form my own experience, my docs, and a bunch of reading.
1. Basically, the TSI kinda confirms what is already known. That you have TED. So it is a confirming diagnosis. But it won’t be used to determine the duration of your active phase. Another way of saying this, is that as long as you are having changes in your eyes and your vision, you are in the active phase, regardless of the numbers. They can be going down, and you can still be in the active phase. So, the numbers going down, is good, but it doesn’t mean much in your day to day life.With TEd, a lot of the treatment in the active phase is trying to help with the dry eyes, the sensitivity to light, basically helping the symptoms. And of course the neuro/op doc will watch your vision with visual fields tests and some other color tests.
2. Eye exercises-I don’t think they would help. But check that out with your doc. All my eye muscles were swollen and fibrosed, and it hurt to even LOOK, let alone strain them by exercises. But there may be some merit to them that I don’t know about.
As you can see from the end of my post, I have “been there, done it all!”
Best to you,
Shirleyin reply to: Wife want divorce and family in shambles #1170247Hi, I am wondering if your wife is getting the understanding should be getting from her endo? Kimberly had some great references, but that does not mean that your wife has been willing to read them Has she?
I don’t want to frustrate you by suggestions that are impossible for you to carry out, cause they require your wife’s cooperation. But I would like to suggest that you make an effort to find a good family therapist, even if it is only your wife and daughters who will go. It must be terribly tough on your daughters (you know what it is like) to have that distance, and be regarded as invisible. To me it shows me how impacted your wife is by this illness, to throw the responsibility for communication back to the kids.I think i understand that she is on the ATD right now. Did the endo mention RaI or one of the other choices for the future? I think RAi is what you mentioned. Sure wish the doc would spend some time with her with some leading questions which might help your family.
Shirleyin reply to: Just dropping in after TED orbital Decompression #1170524awesome! I understand! (Look at my history at bottom of this post.) I am on my way to bed. In my experience, be darn sure to keep your head of bed elevated, and the ice packs are your best friend along with the elevated head. Well worth the poor sleeps if that is what you have to endure for a week.
Shirleyin reply to: Just diagnosed w/ Graves – need some reassurance #1170511Great! Seems like you found this forum at the right time for you. You are a different person now, that you have taken action, been heard, and understand the rationale. Go, girl, I am with you all the way!
I’ll be thinking of you tomorrow. I totally hear you, you have had enough surgical interventions for 3 or 4 people! i sure hope you get those stents out soon. I really look forward to hearing from you again.
shirleyin reply to: Just diagnosed w/ Graves – need some reassurance #1170509Hi and welcome! You have had QUITE a year or two. I am sorry. I know that those stents are very uncomfortable, and not fun AT ALL!
Your questions and concerns are valid, and i found myself scratching my head, wondering, as you did, why RAI is planned so quickly. My own response for myself would be to decide to cancel the plan for tomorrow. THis seems too fast and emergent for a situation which probably is not emergency. Then regroup, perhaps taking your chart notes and labs to another end. and/or calling the office of the endo you have, simply saying that this is too quick, you do not regard it as an emergency, and you want to learn more about your options for treatment. it is so important for you to feel at peace about the treatment path you select, and the doctor you have. Frequently, these two are very related!Kimberly wisely mentioned that there are considerations to ponder with each treatment, but one very significant one is the status of your eyes, when it comes to choosing RAI> The body of evidence has grown to be significant enough to include in your weighing of which treatment you decide to have.
Included in these comments, is having an endo who knows Graves’, is very nice and supportive, and respectful of your wanting to understand these options and to understand Graves’.To honor your questions (:!
1. Can’t really be answered, how “bad” our hyperthyroidism is, is dependent on our symptoms (for instance, if our heart rate were 160, that is a serious problem, regardless of labs.) As you already know, (if you know the normal ranges of the TSH, T3 T4, then you know when a lab is high or low.
I think you are doing a very good job of answering your own questions. Since you have few if any symptoms, (I believe this is what you said) except a little weight loss, at this point, if you read about hyperthroidism from a reliable source, you don’t have a “classic case” of hyper symtoms.
2. I’d ask for a 2nd opinion, based on your concerns, your less than clear picture of Graves’at this time. YOu need a really nice endo. Many of them are very familiar with diabetes, but not very familiar with graves’. You might find this situation with your endo.
3. I think Kimberly addressed the relatioship of being treated with ATD’s first before RAI as opposed to moving right toward the RAI with no prior treatment. THis is something I know absolutely nothing about, including what Kimberly mentioned. Another good question for a new doc, or slug through and decide if you want to remain with this one.
DO WRITE AGAIN.
ShirleyI not trying to grind this into the ground with my comment, but I guess any value there is relating to how she felt. But not much value in associating anything about this article with Graves’. Glad she feels better. Wish it were that easy for Graves’ folks!
Shirleyin reply to: RAI-confused about safety measures #1170504Hi, plenty of people on this site have had RAI who have kids and jobs. I don’t have a lot of time right now,but maybe Kimberly will see you post tonight. And, have you asked for, and gotten written instructions for after your RAI? I find it very helpful to ask for post procedure and post op instructions BEFORE the fact. Then you can generate questions based on your specific circumstance.
So, I am sure you figured out for yourself that looking at thyroid cancer sites are not appropriate. Different subjects, different disease, different treatment.
So, these are not really answers, but pretty much what I remember from prior posts.
1. Sure, you can sit anywhere and you don’t need to use a plastic sheet/towel, etc.
2. Just wash your hands or take a shower. Things you usually do, but with more awareness. Basically, most is excreted in the urine, I think, and the close contact is primarily a longer exposure when you have a kid at your neck for a period of time.I think you will hear from others who have had your experience.
***Don’t be reluctant to call the department, or find out how to do that if you don’t know, to ask for the instructions of precautions post RAI.
I think that is your best bet.
Shirleyin reply to: Progression of GD info wanted #1170495Hi. I think it is MOST appropriate for you to speak up. Mind you, I am “just” another patient with Graves’, but I have also worked in the health care provider arena for over 50 years. Fortunately, times are better now than they ever have been for a person, in this case a patient, but it could certainly be an advocate or family member, to speak up about their concerns.
The mottos that pretty much guide me are two:
1. Silence is acceptance
2. (well, I guess this is not a motto…!) Be your own advocate, when you learn new information, use it for your own welfare, and pass it forward for the welfare of others.Some of what you do next, depends on how your were feeling in April. Was it a off the wall random thyroid function test, the TSH? Or did you report how your were feeling, which might have prompted the first doc doing the test.
It does seem to me that you were not served well, for there certainly should have been some patient education given to you. For him/her to dismiss it (and YOU!) when you asked specifically about it, I think is a travesty. I tend to agree with you that it was an obvious issue, and he dismissed it (and you.)
And that is not ok. So glad you received appropriate treatment. Maybe you need a new endo to follow you post RAI, there are labs to draw and things to watch for.
Shirleyin reply to: Diagnosed yesterday as having GD #1170460Hi Ginger, I’m sleepy tonight, but wanted to answer your post, at least take a first stab at it!
I like your 2nd and 3rd paragraphs! Good decisions.
1. Preservative free eye drops are always in single dose containers. Drops with preservative in them are usually in little bottles with the equivalent of lots of eye drops in them. So, like everything else, Genteal has 4 different kinds of eye drops. Unless you have single dose little plastic things (usually called single use), and the box should say ‘Genteal PF (for preservative free.) you don’t have preservative free eye drops. Probably you don’ thave preservative free. The “preservative free environment” seems to me like deceptive advertising.
2. I remember in prior posts when you said you got only a beta blocker. Somewhere in responses, I think I suggested you ask if there were another medicine she had intended to give you and you should check. Apparently you did, and she prescribed the Tapezole.
OK-That is an anti-thyroid drug (ATD)the generic name is methimazole, and that is the same thing that people on this site are referring to, and most of them are on it when they are first diagnosed. It is ALSO one of the three treatment options that you are not ready to think about yet.
So, rather than writing all again, I have copied and pasted what I wrote in the first post after you joined. I suggest you take a look at that post, then read the reference I mentioned. I think you will begin to see that Tapezole, methimazole, the same ATD, is the essential drug that you should be taking to get your Graves’ under control. As always, check with the next endo you seek, or call the office of the doc who prescribed it, OR (a very good suggestion) go the pharmacy, pick up the medication, and ask the pharmacisit to explain to you what it does.Following is what is from the first post:
“http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#a [womenshealth.gov]
After you read that, it will make sense that the first step is to tell the thyroid to stop overproducing the thyroid hormone that causes our symptoms.
This is usually done by ATD’s (anti thyroid drugs_ and a beta blocker (cardiac drug) if needed to slow our heart rate if we have a fast heart rate. Untreated Graves’ has the potential to be dangerous, but fortunately it is easily managed and you will feel good again.”My comment to your decision on whether to take the tapezole? I suggest you take it, after you learn why it is so important, and why it has been prescribed.
3. Brief thought about Vitamin D-I live in a place where the sun does not shine much for a lot of the year. For that reason, I do take Vitamin D. This is an easy answer to find, for there is a lab test that tells you if you have enought Vitamin D. Ask to have it done. Lots of other people take lots of vitamins and supplements, Graves’ or no Graves’, but I am of the school that I eat well and get them that way.
4. Last question. Will Graves’ continue to damage you body after it is under control and you have your treatment. No, it won’t, provided you follow whatever plan you have chosen.
If however, someone decides to stop taking their thyroid supplement, or stops taking their ADT, they will be in doo-doo pretty fast and be sick again. We will always have Graves’ but it won’t always rule out lives. But it is part of our lives in that we can’t decide to stop taking medication if it is prescribed.
4.1. The definition of Graves’ as an autoimmune disorder or disease is that it impacts the thyroid gland. But not other glands or organs. Equivalent thoughts are diabetes+pancreas, Crohns=bowel,thyroid eye disease+eyes and eye muscles.Ok, that’s it for tonight! Have a good sleep. When is your next appointment,Did you make it? I hope.
in reply to: My Update – Thyroidectomy #1170433That’s great! Thanks for writing your experience. I am sure others will appreciate it.
I had a thyroidectomy, too. As Kimberly previously said, there are some wonderful posts by others who have had a thyroidectomy. You’ll sail along and do well. Be prepared to be more tired that you expect to be at about week 3-6. I was surprised, when i felt so good, that I tended to hit the wall in the afternoon and want a wee small nap!
Shirley.Hi, I know it is agonizing to have a child with a medical problem. Especially one that is behavioral, plus really not feeling well, plus a twin sibling who is thriving, plus you going to school full time. Everything is complex, and how frustrating to make the efforts to make appointments, and leave with concerns.
Kimberly gave some great references, and i have one thing to add.I suggest you have all her care managed by a pediatric endocrinologist. I looked up resources in the Phoenix area (so nice to know where you are, ) and I found the following medical group, and they DO have thyroid listed as one of the conditions they manage. Here’s the link:
http://www.pedendophx.com/I am not sure you are taking your daughter to a pediatric endocrinologist now, but from what you say, it seems that you need a different doc taking care of your daughter.
Have you explored the pediatric endocrinologist world?
do write again
This is a wonderful site, with caring people, you will get a lot of support and suggestions here. We are all patients in different stages of Graves’s or thyroid eye disease (TED.)
Shirley
I am the grandmother of twin boys, one has more issues than the other one, but they both have issues. It is tough.in reply to: Diagnosed yesterday as having GD #1170457First, I would like thank you for being interested in Graves’. I am writign as a Graves’ patient only, but I have worked in hospitals associated with universities for over 50 years. So the “world” is familiar to me, plus even more familiar since I was married to a physician for over half of that time.
I imagine I will wander a bit in my response, but here goes…..A couple questions for prnmd.
1. Wouldn’t it be better to have a neuroophthalmologist follow TED? My experience with TED, plus nine (I count each eye as a separate procedure!) surgical procedures by an oculoplastic surgeon, is that treatment of TED, managing TED, including the RX or pred, Solu-Medrol, is an arena the oculoplastic surgeon is not interested in taking on. I suspect you are an exception.
My referral to your specialty was for optic nerve atrophy, for which an OD was done. But the neuro/op doc managed the meds. The oculoplastic surgeon was not a bit interested in that. My strabismus surgery was done by a pediatric opthalmologist. The the remaining ones by oculopastic surgeon.I do not have the facts and figures on numbers of surgeons and thyroidectomies. Certainly, before RAI existed, more thyroidectomies were done. But the points you mention, to explore the surgeons’ experience and complication rate, have been mentioned numerous times on this board. I further suggest this is information that a person should try to find out with any surgeon for any procedure, whether it is prostatectomy, mastectomy or colon resection. And it is almost impossible to do, I might add. Especially complication rates. This is not readily available information to extract, anywhere in the health care field.
2. I am wondering if you read all the posts in this thread? I think all the responses were 100% appropriate, regarding RAI and TED. And we always say to talk to the docs. It is absolutely true that QUESTIONS for the docs are generated to ask the docs on this site. And it is a darn good thing. And I think we are totally congruent with emphasizing we are fellow patients, and not doctors.
Having said all that, it really IS the choice of a patient on which treatment they want. The problem is getting physicians to listen to the patient, and be balanced with their responses. There are a ton of reasons for a patient to chose surgery, and not want RAI. Planning a pregnancy and concern about eyes, are two really good ones. Another one is the guesswork (albeit carefully considered,) that can result in not enough RAI given, with a repeat RAI necessary in the future. Some of us shudder at the thought of surgery for Graves’. That is valid, too. Then perhaps RAI or ADT’s is the much better choice for them. And, of course, locale and availibility does make a difference.
Time for a cup of coffee -
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