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I’m with you all the way, gatorgirly, about taking prednisone again! I would eat sand and dirt before taking prednisone! Just joking, of course, sometimes it is a life saving drug in some instances, and a proper one to take in others.
But I was on 60mgm/day for TED, and that dose turned me into a crazy person who probably would have been happy to eat sand and dirt if I could not have my billion calories a day for my voracious appetite, combined with sleepless nights. But it did relieve the inflammation for a week or two.in reply to: I’m back, and need advice… #1170485No, of course you are not going crazy. (and yes, having a hyper brain right now, EVERYTHING is a big deal.)
I am hoping that you can begin to look at your visit to the ARNP, the subsequent phone call to come in for an ultrasound after you uptake-as very reassuring news, rather than scary. It sounds like you have ended up with excellent medical care, nice people, and of course you want to meet the endo anyway. I am so relieved that you have not had to go to doctor after doctor, to fine the right “fit.” Lucky you!Regarding the ultrasound. It really is not that uncommon to do an ultrasound on your thyroid gland after your uptake. Not at all. And tons of folks have one or several thyroid nodules. You are getting great care! And I really do understand that you are worried and anxious. Having said that, what wonderful news that you did not get a phone call and be told to come in two months later for an ultrasound. (When I was hyper, I wanted everything to be done RIGHT NOW, and i wanted ANSWERS! So I find that reassuring.)
Basically, I am giving you “my take” on your experience, and it pretty much is reassuring. I have had a couple benign thyroid nodules for over 50 years/!
A long time ago, I had a SUB total thyroidectomy. THe thought then was to leave a tiny piece of thyroid to crank out just the right amount of thyroid hormone the rest of my life. It worked for about 35 years, then I got a little hypo (which is not that uncommon with people when they age) and now take Synthroid. Subsequently, a couple nodules grew on the thyroid tissue that remained.I am NOT going to tell you it is no big deal, for to you right now it is a very big deal. Do write back anytime, and definitely write back after you next appointment. Having Hashi and Graves’ is a challenge in itself. So I am glad you have returned to medical care and have insurance.
Shirleyin reply to: Diagnosed yesterday as having GD #1170453Excellent post, Bobbi.
Ginger, I am so glad you have found the GDATF website. It has been a lifesaver for me, and a marvelous complement to my visits to my endo and my eye doctors.
Probably you already can see the differences among sites on the web. It is very difficult to troll through the web and recognize what is sensational, telling people what that want to hear, the sites that are really selling products, and much more. When we have a new condition, and we want to learn as much as we can about it, in this electronic age, we go to the web.
I read the site you mentioned yesterday. To use Bobbi’s words, I had difficulties with that site also. And to quote Bobbi’s words, which she expressed very nicely and accurately,“We need to be VERY careful what information sites we use online. Anyone can say anything. Anyone can take a picture that makes them look like a doctor and say anything. A study done a few years ago, found that 80% of “medical” information on the web was wrong, and some of it dangerously so. So, get your major info from “official” sites – the Mayo Clinic for example is a good site for information on TED. That sort of thing.”
This is a good place to develop questions to ask your endo, to hear from others who have the same thing you have, and hear their experiences. Once I found this site, I did not feel so ALONE! I definitely felt that way before I found it. There is so much to learn! And once we begin to understand a little bit about Graves’, we are in the position of trying to explain it to our friends and family. That’s a challenge, too. One thing that has REALLY helped me, is to look back to my life before I had Graves’. Even though I am an RN, and was working in an academic hospital at the time, I had NO IDEA what Graves’ was. All I remembered from my student days studying the endocrine system, was diabetes and some of the more common endocrine diseases.
And that is the position our friends and families are in. They don’t have a clue. So, you are doing a super job of doing research, reaching out, learning every day.At this point, I don’t want to overload you, but here is a suggestion for your visit to ANY doctor. Ask at the desk for their form that gives them permission to send lab results, and copies of your visit, to your home address, so you can have your own personal medical file. This is extremely useful.
Shirleyin reply to: ELECTRONIC READERS-Kindle, Nook etc #1170470wow!! Good JOB!!! yes, it is a puzzle.
in reply to: ELECTRONIC READERS-Kindle, Nook etc #1170468Darn! I know there were at least 6 or 8 posts, and as i recall, perhaps incorrectly, that the Nook was preferred by TED patients. And this whole post was about e tablets and TED patients.
Glad you like your Kindle. My curiosity is still there, though. I ALMOST remember who began the thread but I can’t.
Thanks for trying to find it.
ShirleyI think it is VERY relevant that the study was done in selenium deficient area.
As Kimberly wisely stated, there is a lot of room for more research on this subject. And, I might add, on TED!There is a lot of junk on the internet about this, and a few, very small studies.
I read them the academic ones, and there are several variables that a lot of variables that were not controlled, for them to come to their conclusions that selenium might be helpful in TED, and there was some improvement in comfort. One study indicated that the improvement lasted for six months. The studies are so small, that I am not listing them here. But it is a big job to find them. I think we probably get enough in our diet, but I am never one to state that there are not more yet-unknown treatments for TED. One variable that was not addressed in any of the studies i found, is the stage TED that the participants were in, and sometimes this is hard to determine.I think it has been mentioned several times on this site, that if someone decides to take it, they should check with their endo, and be sure they do not think it is 100 Milligrams (Mg) because it is not It is 100 MICROGRAMS (mcg.)
in reply to: juicing recipes #1170474I am sure you will get some good responses regarding juicer recipes. I took a look on the web, and there a lot of them there. But it will be nice to hear from people and what they like. I eat a healthy diet, and do not restrict or avoid any food, eat everything in moderation. I imagine there will be varying opinions on this. Good luck with your juicer, best wishes with your Graves’.
ShirleyWith Synthroid, or any thyroid hormone replacement hormone, vitamins and supplements (calcium, etc.,) interfere with the absorption and metabolism of the drug. Also, the recommended way to take it is in the morning on an empty stomach with a glass of water, then you can eat in 1/2 hour. ANd, of course, you probably have directions from the pharmacist about this. If not, check my info out with them and/or your endo. And, of course you can check with the endo next week.
My personal experience and opinion is that vitamins do not help either Graves’ or TED. Some people say that flax seed and/or fish oil helps our tears cling to our eyes better, so I tried that, found no help in that area. Many people take vitamins, but I feel that I eat well, don’t need’em. Except for Vitamin D. I love in Seattle where the sun is in very short supply, so i do take it.
shirleyin reply to: Diagnosed yesterday as having GD #1170449Hi Ginger, welcome to this site. The forum is great, and I think you are in the right place to begin learning about Graves’ and TED (thyroid eye disease.)
There are many posts by the facilitators describing the pathway of treatment when we have Graves’, but for now, I will say a few things which might be helpful to you. Of course you are overwhelmed by all this information, especially when it comes from so many different places. I think you will become much more comfortable with all of this stuff, especially when you begin to feel more like yourself. I think better when I am writing when i number thoughts, so here goes!
1. It is definitely the way to go to have an endocrinologist treating you as you learn about Graves’ and the options you have for treatment. In the best situation, you will have an endo who is very familiar with Graves, and with whom you can have a good relationship. You may learn a lot more when you see you endo. Sometimes, endos focus on diabetes, and that is the condition they primarily deal with. When you see you endo, you might consider asking him/her if they have many Graves’ patients in their practice. Or, probably better to have your first appointment, begin to develop a relationship, and weigh your own impressions of the endo, for this is a continuing relationship, and you want to feel comfortable asking questions, and feel good about their knowledge of Graves’. You will be able to figure this out pretty fast, I think.
The common denominator of people on this board is that we want our docs to care, and have knowledge of Graves’.
So, wait until you see your endo.2. A typical path to getting better, is to decrease the large amount of thyroid hormone circulation in our body, causing all the problems of fast heart rate,
feeling anxious, tremors, thinking you are crazy, and much more.
Here’s a reliable site for you to read, then write again and ask more questions!http://www.womenshealth.gov/publications/our-publications/fact-sheet/graves-disease.cfm#a
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.As you have read, yes, there are treatment options, three of them. Continuing on ATD’s, surgery and RAI (radioactive iodine) All of us choose one of these treatments based on our personal preference, the availability of the treatments. Of course we do listen to the recommendations of the endo.
We are not doctors here, just patients, but I suggest you ask the endo your question about radiation causing other autoimmune conditions. (No, it doesn’t.)
Answers and thoughts to your questions
1-method chosen depends on what you want, where you live, what is available and the advice of your endo
2. Most successful? Not sure there is one answer to that. Depends on #1. After treatment we all get along very well, but we do have Graves’ all of our life.
3. Long term negative effects of RAI exception rather than the rule? Speaking as a patient who reads this forum, I would say they definitely are the exception. Again, it is SUCH a personal decision. I chose surgery, many choose RAI and others chose ATD’s.4. Eye question. I’d wait until you see your endocrinologist. The one caveat about RAI is eye involvement, and there are some cautions about RAI with active eye involvement. AGain, consultation with the endo AND eye docs is the way to go. Eye involvement does not go away with treatment for Graves’ as your doctor said. It is an entirely different autoimmune process, some people have it, some don’t, some have mild symptoms, like yours, some have more severe symptoms. I do suggest, after you see your endo, that you consider asking for the name of an eye doctor who is familiar with Graves’ thyroid eye disease, have an appt with that doc.
5. eye issues can occur any time, never, and/or many years after you have Graves (my situation.)
6. No, you are not making a big deal of having Graves’, and as you already know, your relatives are not going to be your resource for information for your treatment. However, a family history is relevant, but does not impact treatment. I speculate that some of your family members may have had Graves’, especially if they have had treatment with RAI.Hey, you will be fine, and we do profit from understanding this thing that we have.
Write again, and I KNOW you will be hearing from our wonderful facilitators and others on the board.
****make the appointment with the endocrinologist, if you have to wait a long time, I suggest you call your primary doctor, ask if you should begin treatment. When diagnosed, it is best to begin treatment.
ShirleyTSH, T3, T4 are all thyroid function tests.
I guess, since it is an autoimmune disease, you could also say that it tests abnormalities in the immune system regulating the thyroid gland.
But not the WHOLE immune system (I don’t think you meant that, did you?)Here’s a nice reference for you from webmd
http://www.webmd.com/a-to-z-guides/thyroid-hormone-testsI am a fellow patient, not a doctor. But it is not necessary to be a doctor to tell you that WBC lab count is not a thyroid test.
Here’s a nice reference to understand your prior question about white blood cell lab test. The name of the test is CBC (stands for cell blood count)
It primarily is looking at white blood cells and red blood cells.
In very basic terms, if a WBC is very elevated, it can confirm that there is an infection someplace, and/or we are sick! The layperson way to think about it is our white blood cells increase in number when they sense we are threatened by an infection. BUT, as a fellow patient, I refer you to the following nice reference that explains CBC, of which WBC is a component of the CBC. Happy reading, hope this is helpful to you.WBChttp://www.medicinenet.com/complete_blood_count/page2.htm
ShirleyBarb, I use Mepitac tape. It does not hurt at all, even when over eyelashes. But it is expensive. You will find it when you google it. It is a hard decision for me whether to gob ointment on at night, for if I do that, the tape does not adhere because of the ointment. I am looking for a cheaper tape, and will report right away if I find one.
Shirleyin reply to: Blepharoplasty for swollen upper eyelids #1170392Hi, my thought is to encourage you to consider an orbital decompression, and that would involve going to an oculofacial surgeon to discuss the amount of protrusion of your eye.If you have a protruding eye, I am wondering if the blepharoplasty would achieve the result you want? I’m thinking that the surgeon you saw may have been thinking this, but certainly did not present it well to you at all. Insurances vary, but generally TED patients who have insurance, have their procedures covered. You DO need a diagnosis of thyroid eye disease, that is for sure. But from then on, these procedures need to be coded as medical, not cosmetic. I have not had any trouble with that at all, and you will see at the end of my post that I have had a ton of surgeries on my eyes.
So, as Kimberly said, maybe your first step is to find another surgeon, and get a good evaluation for your bulging eye. I can see where the eyelid surgery might not be successful for you, depending on the amount of protrusion of your eye itself. If someone would order an orbital CT, you would know how much orbital fat was in there pushing your eye out. And I think it would give you the same information about your eyelids, but not sure about that.Just a note. Graves’ and TED are two different autoimmune disease, with antibodies attacking thyroid gland with the first, and different antibodies wrecking havoc with the eyes for TED.
*Do you have any double vision? Guess not, since you did not mention it.
Hope you can find some posts from people who did have the eyelid blepharoplasties.
Shirleyin reply to: Please help choosing a right eye doctor. #1170396I’ll write more later, I have a dental appt right now
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