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in reply to: radioactive iodine treatment #1177157

I think your best answer is right above your last post. The one from Alexis, or adenure. ANd the take your question to your doctor, along with her post for your own background.

Rarely, if ever, we are cured from Graves. I think it is WONDERFUL that you have been off meds for three months now, and feeling great. It is possible you may be in remission. It is equally possible that Graves’ and hyperthyroidism may come to visit you again. It is certainly worth a try with no meds, if you are feeling like your ole’ self Maybe you are one of the very lucky ones!
But be aware of your Graves’ history if you begin to recognize the hyper symptoms,and get some labs.

You have been taking the carbimazole only 2-3, weeks, is that right? ANd now you are off it completely? That is not very typical. Has your doctor done another set of labs since you began the drug? Was the decision to discontinue the drug after a bit over 3 weks, your doctor’s decision, or did you feel better and decide to stop taking it?

Shirley

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in reply to: New labs #1178735

And I have always taken my Synthroid every day, labs or no labs. I really don’t see the advantage of not taking it. But there is no harm in waiting until you have your blood draw to take it. As Kimberly says, check with your doc.

I think the most important thing is to be consistent with whatever you do.
Shirley

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in reply to: Protective eyewear #1178715

Hi,
I have looked at the site Kimberly mentioned, but I had just “stocked up” on
glasses that are called either slip overs or slide overs, at the drug store. They stock them only in the summer, beginning about now. They fit nicely over my huge regular glasses (come in small medium large) and they have the things on the side that are like sunglasses, hard to explain. My problem is that i leave the damn things EVERYWHERE!!! They are around $19. I also have them everywhere! By the front door, by the back door, 3 or 4 in my car. I have tried grey, brown and a reddish tint, but for me, darker is better.

A brand I like a lot is Solar Shield.
You can also go to the website Dry Eye Zone, it is quite good and i think they recommend some, also.
I am resigned to wearing them all the time, and I am helpless without them, =very photophobic. I also saw shop glasses in the hardware store True Value that looked like they might protect you from the wind.
The ones I mentioned do a pretty good job
Shirley

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in reply to: Old to graves, but scared from recent flare #1178694

Hi Candi,
You’ve gotten some good thoughts on the recent posts. I know you realize we are all fellow patients here, and although most of us have Graves’ or TED, each of us have different experiences with them.
One thing that seems a common thread, is how difficult it is to be hyper. We feel like we’re crazy, sometimes other people think the same thing. We just feel terrible, and not like ourselves at all. I remember how impatient I was when hyper, all I wanted was to GET BETTER, get this behind me, and live my life like the normal person I used to be. Believe me, if one thing is the same for every single one of us, it is wishing there were a magic pill to make all this go away and get better quickly!!!!!

I am sorry that you have a new flare of Graves’, for you have had eleven years of being back to your old self with taking ATD’s.

Here are some of my thoughts, plus a couple questions for you to think about.

1. Rash-Despite the long time that you have been on methimazole, it does sound like that you have developed a true allergy to that drug. And, of course, the way you will know that, is to stop it completely. I’d expect your doc, whoever is making the decisions, will be ordering frequent labs at the beginning of taking PTU, that is what usually happens.

2. Drug doses-they are different drugs entirely, and the composition of mgm. is also different.

3. I hope your indigestion goes away, and that it is an infrequent occurrence.
I have found that I am uncomfortable if I eat right before I go to bed, but that rarely happens.

4. All of us have different thoughts and feelings and conclusions about the treatment we choose. And you usually do have a choice. Not always, for certain people, a thyroidectomy is the way to go for other reasons. You will find that there are people on the forum who have chosen each one, for their own reasons and thoughts. Certainly if you have a fear of anesthesia, then perhaps RAI is better for you. I’d like to comment that anesthesia is a darn good state of the art, compared to what it used to be.

5. Re the TED that you had previously. The usual path of TED is two stages, the active, or hot phase, and the inactive, or cold state. TED can be very mild, moderate or very severe. Generally there is no treatment that would make TED go away. But there are several things to do to help the symptoms, like eye drops for dry eyes, sun glasses for sensitive eyes, and prisms for double vision. With that in mind, see the suggestion in #1 below.

Questions-

1. I do suggest you talk with the endocrinologist about RAI and eye symptoms.
With that in mind, I suggest you go to a good ophthalmologist who is familiar with TED, and get a good baseline eye exam. There is some pretty good evidence now, that RAI can exacerbate TED, if you are experiencing a recurrence of TED as well.

2. Do you have a related cardiac condition, that requires the Holter?
When you see the cardiologist, he/she is the one to ask if there is a drug to take to decrease your heart rate without lowering your BP. And check with the endo and cardiologist to see what they have to say about your heart rate going down with ATD treatment.

Welcome back to the forum, you have a lot of friends here. I did not get a great sleep when I had a Holter, so it will be nice to get it off tomorrow!
Do write again with your thoughts and updates.
Shirley

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in reply to: 3 year old with graves #1177596

WEndy, I check the British THyroid site. The first thing I saw, was a video on children with thyroid issues, made for the children. I think your daughter might like it. and adults will learn, too.
Shirley

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in reply to: newly diagnosed #1177918

To gerical-The goal of TT is to remove your thyroid gland completely. That is why it is called a total thyroidectomy. So, after the surgery, there is still a bit of thyroid hormone flowing around our body, that was there before the surgery. Then that is all used up, and the only way to have enough thyroid hormone for or body, and it is essential to life, is to take thyroid replacement, in the form of a pill. There is a generic and a brand name. Brand name is Synthyroid, the generic name is levothyroxine.
The goal of an RAI is the very same, with the same goal, and the same everything. Only difference afterward, is that it takes a shorter period of time to use up the hormone we naturally produce, with a TT. IT takes a longer time after an RAI, to get regulated with thyroid hormone replacement. Cause it takes a longer time for the RAI to destroy the thyroid gland, which is the purpose of RAI (and Surgery.)

Brief answer to your question? Yes, we are hypo after that. But we really cannot say we don’t have Graves’ disease. We do. We will then take medication for the rest of our lives to replace what our body can no longer provide.

Hope this helps.
Shirley

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in reply to: Night sweats after TT #1178683

Gosh, Nick, I cannot relate it to any of my experiences after TT.

THe only suggestion I have is to buy some Pedialyte, if you feel you are dehydrated enough to not feel well, GatorAid is not the right choice. It does not have enough of the electrolyte you need, if replacement is needed.

I’m not clear about when the surgeon removed one parathyroid. Was that a 2nd procedure, just last Tues 4/23 If so, did you have another general for this? Recovering from general anesthesia takes a few weeks.

Or are your night sweats from a couple months ago, after your TT?

It sounds like you are having frequent labs, thyroid panel and calcium,and the things you need to know. I copied this from the Cleveland Clinic discussion on low calcium:
Diagnostic Evaluation

Hypocalcemia needs confirmation, if there is any doubt, by measurement of the serum ionized calcium level. When the diagnosis is confirmed by the finding of a serum calcium level lower than 8.2 mg/dL (2.05 mmol/L) or an ionized calcium level lower than 4.4 mg/dL (1.1 mmol/L), attention should turn toward seeking the cause.

But excessive nights sweats is not listed as one of the symptoms.
Have you been having the night sweats a few days, or a few months/ I think I am not reading your post accurately.

So, since you have already consulted a couple docs, I am hoping that these resolve. The night sweats are definitely not pleasant, and interrupt your sleep, and that is not good, either.

Do write again, welcome back!
Shirley

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in reply to: Thyroid disease and diabetes links. #1178676

Here is a reference from Medline/NIH
If you choose to read it, read the entire thing. It begins by listing all the things selenium is THOUGHT to be used for.
If you read further, you will read that an excess of selenium MAY contribute to diabetes.
And especially-read the safety concerns.

http://www.nlm.nih.gov/medlineplus/druginfo/natural/1003.html

Stymie has a good point in her post.

THe small study that was done with selenium and thyroid was done in a part of the world on a small part of the population where selenium was known to be deficient in soil and diet. Kimberly has referenced it previously, but I don’t have time to find it again.

I took a quick look at the link Momof5 mentioned in her post. I thought it was a pretty vague abstract of some kind of work by a couple docs in Limoges, France. I could not access the whole thing.
I am learning more and more that PubMed publishes darn near anything, and it is a link from NIH. I am learning to search for evidence based, long term longitudinal studies, with a large population and a large sample size.
Always something to learn! And learn again!
Shirley

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in reply to: Never Rains, but it pours! #1178523

OHFORPETESAKES!!! That is bull baloney. YOU are right, vanillasky, the results can be read immediately. It is true that the technician is not supposed to tell you anything, for the radiologist has to read it. Then the report goes to the doctor who ordered it. It is simple phone call for the doc to do tomorrow or Monday, for her to get the results, or have them faxed. I’d begin to call the office tomorrow morning, bright and early, say that you must have these results today, for you are leaving for Cleveland (say Monday, not Tuesday) on Monday, and you need a copy of the result. IF you are able to pick it up, do that, if not, tell’em to fax it to Kinko’s, or your home computer, and you will have it that way.

Any way you can try any of these things? OR have your primary do the same thing for you????

For general information, usually they ask you to have a full bladder when you arrive, so the uterus pops up and is easy to scan. Then they tell that you can pee, and back on the table for a scan at another angle. Sorry you had another uncomfortable experience.

Two weeks, smoo weeks!
Shirley

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in reply to: Made decision for surgery #1178448

Amy!
Sounds like you are having a wonderful experience with your docs, they sound nice and very competent! i wish you the very best next week, and do write with updates and questions.
Shirley

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in reply to: After RAI, am I supposed to feel like this? #1178658

Hi mwhitney,
Good that you are seeing your endo on Friday morning. Is there ANY POSSIBILITY that you can get your labs BEFORE you see the endo? This makes so much sense, for then endo and you will have the complete picture of your symptoms, how you feel, AND your labs.
Otherswise I bet my bottom dollar, that he/she will say,
“well, let’s get some labs, and see what they say.” And it will be the weekend.

Can you see your visits and labs electronically?

I suggest you call the office again, say exactly this, that would they please send the requisitions to the lab, so you can have the results by the time you see the doc on Friday. Just so you, know, thyroid labs that are drawn in the morning, ARE available in the afternoon. I’ve looked up mine multiple times for results on the same day.
Hope this helps.

When should you see the doctor after RAI? I think anytime you have questions, or feel like a mac truck ran over you, and you can’t stay awake is a VERY GOOD reason to see your endo!
Shirley

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in reply to: Well, here goes! #1173610

Hi, SUPER HAPPY about your job
Super sad about your ongoing problems. So not fair.
Don’t try to respond to all of us. You have enough on your plate!
Thinking of you, and will continue to write to you a bit.
Good thing you love a complicated life!!! Maybe you like complicated THINGS, but we need to work on the life part!!!!!!
Shirley

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in reply to: Feeling depressed #1178622

to Steph.
Do the best you can to weigh the pros and cons of RAI and surgery. It is definitely true that there are now some evidence based studies urging strong consideration to RAI, if there is eye involvement. But they pretty much say that it can be managed and treated. Please ask lots of questions about this. If RAI is the route you choose, ask what docs will to do to reduce or treat your eye involvement. Eye involvement does not rule out RAI. IT is just another piece of information you need to know,and your doc should be aware of.

I suggest trolling the internet is not helpful. Except for this site, which carefully monitors everything,and is reliable.

Guess what?? You will be on the other end of all this, and can resume your life without thinking about Graves’ every minute! Yep. This is true!
Shirley

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in reply to: 3 year old with graves #1177594

Questions and thoughts for you..
did you use the search engine, up in the upper right hand corner, to see posts from parents of Graves’ children?
I briefly did, there is a post from ricata that I think you might appreciate reading.

I know you are in the UK. I think your endo did the right thing by increasing the meds. I, too would be concerned that her heard rate is still high, and probably it will come down with the increased dose, that is the purpose of the increase.

Are you seeing a PEDIATRIC endo? If this is possible, I sure do encourage this.
Any chance of this? Docs who treat adults are not familiar with kids, and generally, they have to look up child doses in a reference. Or does your child have a pediatrician? Who will know kids, but probably not Graves’/

I THINK I am correct in knowing that surgery is the recommended choice for children with Graves’. Of course it should be a surgeon who does thyroidectomies on a regular basis. Do you feel comfortable asking her endo why he/she recommends RAI?

I am hoping you see improvement with the increased dose. Is her endo checking liver function labs along with thyroid labs, do you know if this is happening?

Here is a reliable reference for you to read. I think you really need to have more consults for the best treatment for your child. There are lots of compelling studies that say surgery is the way to go. You need to speak to a pediatric endocrinologist, I think . Although there is also disagreement.
Shirley

http://jcem.endojournals.org/content/92/3/801.full

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in reply to: WHERE IS THE SEARCH BOX? #1178634

the only issue is……ME! Mea culpa

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