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in reply to: Graves and your heart #1062762

Hi Megan, I am sorry you have to give one extra minute to Graves’ when you are sixteen years old! Holy Moly!
Having said that, it sound like you have an excellent doctor, who is being very wise, and has your optimal health as his primary goal for you. I know there are other teenagers on this bulletin board, so try to use the search engine, and see if you can find them. It is SO HELPFUL to talk to someone in your own age range who has had similar experiences.

Do you mean that your BP is high now? Or that it was high when you were hyperthyroid, and subsequently had a thyroid storm before your RAI? If it high now, your doc probably will want to work with you to have a nice normal blood pressure, for it is a stress on our heart and our body to have an uncontrolled high blood pressure.

This is what you can expect in the following weeks. As you say, because of the high blood pressure and thyroid storm, your whole system had a kick in the butt, and he wants to be very sure that your heart is fine. When you are thinking about it, I suggest that you presume everything is ok. First of all, an echocardiogram is easy, the technician puts some jel on a thing they hold, and they slide it round your skin, and the pictures of your heart show up on a TV screen. Nothing hurts. It takes about a half hour or so. Be sure to make an appointment now if you have not already done that, so you can discuss what it all means. It is good to go to the appointment with someone else so they can help you remember things. It is also very wise to get a copy of the dictated report of the echo for your records.

The good news about all of this is that you have almost all of the acute stuff behind you, and you can move along and feel normal like you felt before you had Graves’. I imagine everything was hard for you when you were undiagnosed,
for you had some tough times, did not feel good. Take it a step at a time get the echo done as soon as possible, so you don’t have to worry about it, get the appt. The unknowns are more scary than stuff you know.

From my own experience, I had an echo when I was 17, the doc said my heart had one small weakness, and it was not that uncommon. I am REALLY old now, and it has been a non-issue for my whole life. I swam competively, downhill skied for most of my life, and hiked many mountains.
BE SURE to write again!!!

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in reply to: Tapizole and Flu #1062765

Hi Spencer, welcome to this great site. I am sure your doc has ordered a CBC along with your thyroid labs. You may have been told when you began the drug over a year ago, that it was possible to have a decreased white blood cell count. Having said that, if you have an infection, and are sick, an increased WBC shows that you are fighting the infection. I presume you are still having labs and keep track of the presence or absence of Graves’ symptoms? As your endos office, or your GP to draw a CBC (ell blood count) with your next thyroid lab.
Bobbi gave a good answer @ tapazole and white blood counts. I have no idea if this needs to be watched long term, or if it just a lab that needs to be check when you begin the drug for a few months. There are folks on this site, including facilitators, who have been on ADT’s for years. Maybe some of them will answer with their experiences.

In answer to your specific question, when I was on Tapazole, I did not have any increased sickness when I was on it.

One other thought I have, is that your symptoms reflect the rest of the US in the winter! I know tons of people, living all over the US, who are having the same symptoms! It’s winter! And, did you get a flu shot? I am a firm believer in getting them.
However, there is not a huge issue with an epidemic of flu in this country this year.
Best, hope you feel better!
shirley

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in reply to: EYELID SURGERY POST OP #1062805

Hi Diane, how nice of you to comment! Thank you so much! I really did not think the active phase of TED would EVER end, so aside from the need to have the surgeries, it is a sign that I am moving toward the stable part of TED, and I can finally get a prescription for glasses, which I have dearly missed for the past two years. Hoping the sensitivity to light and the copious tears are also decreased. We’ll see. Day #2 still has a lot of swelling, and cold packs sure feel good.
Shirley

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in reply to: Do you understand me? #1062786

Hi Bill, I read your old posts before writing to you now. It sounds like you have done a great job with establishing some goals, for that is much easier to do when you are feeling better. My view of Graves’ is pretty simplistic, more of a sequence of anything else that happens to my health. It developed, it was recognized, it was treated, it requires some monitering and maintenance, I take my Synthroid becauae it is needed. Being hypER is terrible. Being hyPO is terrible. How fortunate we are to have a simple and safe thyroid hormone to take so we can return to the normal population. I think about it when I need to, and this board is a great place to talk through our experiences.

Although it is the thought of others that Graves’ is triggered by an event, I don’t share that thought, nor do I think it makes a whit of difference whether it does or it doesn’t. If it occurs, it needs to be treated, in the sequence that you already know.

Regarding a troubled background, childhood, and other physical/mental issues that some people experience in greater magnitude than others, I hope that the help is available, and it contributes to feeling more "grounded."

In answer to your question, it is hard for me to give an answer. I think there are periods in a life that are more stressful than others. I do not have the experiences that you have mentioned. Having said that, it sounds that you have made gigantic and wonder inroads into feeling better than you were feeling over a year ago. That is great!

In the general population, of course, there are other illnesses that might not be recognized, therefor not treated, that could contribute to a better quality of life. Lots of folks have a history of depression, schizophrenia, obsessive compulsive disorder, chaotic childhood. Of course, when these illnesses are treated, life is better and manageable. When they are not recognized, life is tough.

I hope others chime in to share their experiences. Regarding you and Graves’, I presume you are having labs now and then and that you are taking thyroid hormone? Yes? No? For that is essential for you to move forward with your life and begin to feel grounded and healthy. It sure is good news to hear that you are no longer taking 27 meds!!
Congratulations on your chosen studies! Sounds like you have a great professional future coming up when you are through with school.

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in reply to: EYELID SURGERY POST OP #1062803

Thank you, Bobbi. I would NOT elect to do this procedure. I have become accustomed to having a changed appearance forever, compared to before TED. But the corneal exposure, and the inability to shut my left eye was a big deal in terms of corneal abrasions, and needing a corneal transplant. And it would fail, because of the inability to shut my eye. That really HAD to be fixed. and I fervently hope the outcome is good for me. TED is hard to have. Did you have TED? I don’t recall.
Shirley

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in reply to: Celiac disease common with graves? #1062851

Kimberly,
I thought the speaker was giving some examples of familiar autoimmune disorders. Generally, saying that it is the autoimmune presence in families, not emphasizing Graves’ and those specific disorders. I did not think that he was specifying those particular disorders that Graves’ could be documented as being associated with. But I am not sure. That was what I thought he said. Evidence based with studies to back it up, I don’t know that , either. But as I think about it, that is what you said in your post, the general association of autoimmune disorders in a person and in families.

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in reply to: DRY EYES AND TEARS #1062817

Kimberly, thanks for your comment. However, this is MOIST, ie humid air, so sorta largely different from microwave popcorn, at least that is the way I see it. It really helped me a lot. Alternate thought is a hot shower, which really helps.
Thanks for asking about the surgery. I confess to being worried and stressed out about it today. It is Tuesday 2/1.
Shirley

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in reply to: Celiac disease common with graves? #1062848

Hi.
I tried to do what you have been doing and I took a look at the web. What a mess. I suggest if you continue to search the web a lot, for you to focus on academic websites, the National Institute of Health, plus the excellent references on this site. THere really is a lot of garbage out there.

It sounds like you have a good endo now, so you can check out some of your questions again with him.
Regarding you. In summary, diagnosis in 98, RAI in 99. I don’t think you need to give a moment of thought to your son, his size, or anything else. Totally unrelated to your RAI. The current guidelines on getting pregnant afer RAI are 6 months, and this is based largely on having time to get regulated with your thyroid homone dose so you are in an optimal state of health, as is generally a good idea when conceiving. In other words, conceiving when either hyper or hypo is another stressor on you.
Of course, when a woman has Graves’, she should be followed by endo and OB.

(Of interest, In this country, all babies are checked for hypothyroidism when born. Historically, this was not done, and the result was not good, with mental retardation and a host of other abnormalities. These kids used to be called Cretins.) This still occurs in countries where kids thyroid function is not tested at delivery.

It is true that there is a higher incidence of autoimmune diseases in families when there is a history of an autoimmune disease.
I don’t believe there is any data on which autoimmune diseases are associated with any other one as a second autoimmune disease.

It did not occur to me to have my children "tested" for Graves. I am not sure of the validity of having that done wily nilly and at random. I say that because, like all of use, Graves’ did not appear until it appeared. In other words, for 23 years of my life, I did not have Graves’, and when I was 24, I developed Graves’. Same with the kids. Same with you. You now know the symptoms of hyperthyroidism and hypothyroidism, so if you see symptoms of either one, you can check in with your pediatrician to have him/her run a thyroid panel lab. Having said this, I would depend on a pediatric endocrinologist for further guidance if a child has a thyroid disorder. They know kids and they know the endocrine system.

I tried to look at your posts, maybe I missed it, but I am wondering how you are feeling now. Do you have a lot of symptoms of either hyper or hypo? And-do you have a diagnosis of thyroid eye disease (TED.?) I was not sure about that.
So those are some of my random thoughts to your last post.
Shirley

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in reply to: jazzercise and graves #1062831

Hi, I wanted to be sure to briefly answer your posts tonight. There is a lot of conversation about the amount of exercise you should do when you are hyper. Being hyperthyroid impacts muscles, and your whole body is exceptionally stressed.
Generally, strenuous exercise is discourage at this stage. I KNOW you will hear more from the facilitators on this subject! In the meantime, try putting exercise in the search box, see what pops up. I also understand that exercise is good for physical and mental health, and sleep, so it really is a slippery slope. I was so hyper when I WAS hyper, that I was moving ALL THE TIME!
I am sure you’ll hear from more people tomorrow.
Shirley

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in reply to: THINNING HAIR and HAIR LOSS #1062822

Hmm. No. But I THINK there are convesations about this subject in the archives. Probably someone else will chime in with more precise information.
shirley

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in reply to: nutrition and supplements #1062819

Hi Kat, welcome!
I think you will hear from other people on this subject, and they may have some other thoughts. I am not aware of any scientific, evidence-based studies that address this topic. And feeling better or worse, when we are on the roller coaster of Graves, is so subjective.

It is my thought that food does not improve or make worse, anything related to Graves’. I eat anything I want. What helps you feel "normal" again, is the wonderful light at the end of the long Graves’ tunnel, when you are not hyper anymore, thanks to tapezole. When you have decided which treatment option is right for YOU. When you have finished it, and have gotten regulated on Synthroid. You will feel good again, like your ole’ normal self!
There is a ton of good reference material on this site on the home page. In the posts, both current and past, almost any question, worry, anxiety and frustration will be addressed. YOu are not alone!
This is a wonderful, reliable site. Glad you found us!!!
Shirley

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in reply to: After thyroidectomy…do I still avoid iodine? #1062836

Hi Thila,
I think you have done such a good job figuring out all this stuff. Before you begin to make all kinds of changes to anything, remember that….1. Your thyroid gland is gone now, so the whole subject of iodine and the thyroid gland recedes to being a non-issue. (as you already noted.) 2. You are right on target with your progression after your surgery, and your endo is doing what is exactly right! He will select a Synthroid dose, you will take it first thing in the morning on an empty stomach with some water. **Wait 4 hours take any supplements. They would interfere with the metabolism of the thyroid hormone Synthroid. To have your labs reflect "where you are" you really need to be sure to be consistent with taking your Synthroid.
I find it helpful to keep the bottle by my bed with a glass of water. The first time I wake up in the early morning, I take it.

Then the waiting, which all of us experinence, BEGINS! We ALL do it! I have " first had Grave’s" " after my surgery, I had frequent labs to establish a good guess on where to begin the Synthroid dose. It was increased a few times, then I felt super good, then had a thyroid lab once a year (I also skipped them now and then, for everything was going fine.) When you get to the "sweet spot"of Synthroid for you, you will be neither hypo or hyper, you will FEEL GOOD AGAIN! Whee. It does take some patience, for you have to wait around two months for the next lab. THe lab results, combined with how you are feeling, ie., noticing if you feel less tired, as you become less hypo because of the synthroid, will govern if the Synthroid dose needs to be increased.

Of course, there are a million other reasons why people (especially women) feel tired, but if we have Graves’ it is reasonable to check labs first.
I am not aware that Vit D will increase your energy, but it sure will help your bones, along with weight bearing excercise.
So check out your questions with your endo as well, but the above has been my experience.
Shirley

We all need iodine, and we get it (as you know) from iodized salt, dairy products, seafood, multi vitamins. The general daily requirement for iodine (called iodide in other forms, same thing) is 150 micrograms. (You should verify this if you are interested, but I remember learning in biochemistry that it amounts to the equivalent of 1 tsp. over a lifetime.)

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in reply to: Celiac disease common with graves? #1062844

I sure wouldn’t try to do gluten free uniess you have darn good reasons and evidence to do it! It is a lot of work, you miss a lot of good food you have eaten all of your life. In my experience with other people, it seems to be a common suggestion in the naturopathic and alternative medicine community. Because they have it suggested to them, they try it~ but in almost all the people, they usually stopped it, for they really did not have aggressive GI symptoms to begin with, and they saw no difference after they were on it. It takes a lot of discipline to do gluten free, and for those who pay a big price in how they feel, it is certainly worth it.

And, as Kimberly said, there is a world of difference between celiac and gluten intolerance.
Shirley

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in reply to: Celiac disease common with graves? #1062842

Hi Kari,
it is good that you are questioning his thought about celiac disease. I am putting a reliable website in this post for you to read, it is from NIH (National INstitute of Health, the Digestive Disease Division.) You correctly said that there are so many symptoms, that all of can probably find one or two of them in ourselves at various times. If, indeed there is concern about this, I strongly encourage you to go to a gastroenterologist in a digestive disease department. But take it a step at a time.
And, for chronic constipation, one visit to a GI doc would probably help you very much. That is what I did. I now take Miralas ((over the counter.) It does the trick for me. It’s not a laxative. Just a thought for you to consider. In my experience, it was very helpful.
Since you said he ordered labs for celiac disease, it might be interesting for you to compare them with what he ordered.
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

Ski’s comments are right on. I think there is not much more exploration to learn, she said it all.
shirley

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in reply to: TED and high eye pressure #1062925

Hi Diane, to echo Susan’s question, has your neuro-op doc discussed with you getting referrals for correction of your double vision, and for having eyelid surgery? These procedures are for when you are out of the active phase of TED. I have seen VAST improvements in eye appearance and comfort after eyelid surgery. Pretty soon you’ll be about to read about mine.

Hi Susan, yes, my upper lid surgery is 2/1. I will post to the board very frequently, so you and others can hear how it goes.
I already know that with any eye surgery, it has made a huge positive difference to have the head of the bed elevated at least 45 degrees of not more. I have followed this each time, and almost no bruising evidence of the procedures. Even the OD!
I elevate the head of bed on blocks, then put pillows between the mattress and box springs. After there is complete healing,(3 months or so) I will have the lower lid surgery. I have "lid lag" on my lower lids, and you can see the inside of my lower lids.
I’ve seen the results on other folks with great improvement.

I already have a post going that is titled EYELID SURGERY ( think that is the title) and from now on I will post under that title for this surgery.
Shirley

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