[Kimberly]

in reply to: Confused !! Need answers #1067395

Hi Liza – If our levels are falling fast, most endos *may* reduce the dosage of Anti-Thyroid Drugs once we reach the "normal" range, in hopes of keeping us out of hypO territory.

I keep a big notebook with all my labs that I bring to every endo appointment. So I know exactly if my levels are high or normal and whether they are rising or falling. I have challenged my endo a couple of times on dosing issues, and both times, I have been proven right. Now they do a better job of listening to me.

Also, I don’t know how your appointments are set up, but my endo’s office gives me a lab slip to use *before* my next appointment. Then we can spend the appointment time discussing the results…as opposed to me getting a phone call after the fact saying "do this" or "do that".

Best of luck!

[Kimberly]

in reply to: Total T3, T4 normal, no TSH… #1067413

Hi Elise – Everyone is different, but it *can* take quite some time for the TSH to rebound.

You are correct that increasing your methimazole while your Free T3 and Free T4 are at the bottom of the "normal" range could pull your FT3 and FT4 down even further.

I would definitely have a frank discussion with your doctor if he/she wants to go this route. If your doctor can make a compelling argument for increasing the dose, I would at least insist on getting labs done very frequently to make sure you stay out of "hypO land".

Best of luck!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068786

Down 1.6 this week. Yay! Wish it would come off faster, though.

ewmb – Thanks for the update…I thought from your previous post that maybe you had heard of a specific link between caffeine and weight loss.

Lacie – Hopefully, you are getting closer to finding that "sweet spot"! My first week off of caffeine was brutal…major headaches and fatigue. But I had to do it, because it exacerbated my hand tremors to the point where it was really obvious at work. Now I will occasionally have a diet coke or tea at a restaurant, but I always go for the decaf coffee.

Wolfmother – I suspect that for those of us with thyroid issues, weight loss is *never* easy! It’s a slow, frustrating process. I follow Weight Watchers, although I have added a few extra POINTS to my daily target, as my "hungry-meter" was stuck on STARVING for a while! I’ve been backing my POINTS target down a little each week, and things seem to be getting a bit better.

[Kimberly]

in reply to: Weigh-in (just for fun) #1068781

ewmb – What impact do you think the caffeine has…does it speed up your metabolism or give you more energy to exercise?

Just curious, as I was reading an old issue of SELF magazine where they had a picture of a couple of different kinds of coffee, and the caption said something like, "boost your metabolism with these…"

I actually gave up my morining coffee about the time I was diagnosed, because it really aggravated my hand tremors. I wonder if that might have been a contributor to my weight issues.

[Kimberly]

in reply to: Congratulations Nancy and Ski #1067520

Yes, congrats! Thanks for the all the work that you do…and the lives that you have touched!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068779

FINALLY lost a pound this week after three straight weeks of gains – 142.8. But as hard as I worked all week, I felt like I *deserved* about a 10 pound loss! ” title=”Razz” />

My deal with myself this week is that if I manage to stay on track all week, I’m going to buy myself the DVD of “My Life In Ruins.” (VERY funny movie – it stars the lady who was in “My Big Fat Greek Wedding”). That will hopefully give me something else to look forward to at the end of this week besides the number on the scale. ” title=”Very Happy” />

[Kimberly]

in reply to: New to here, Graves, and life #1067651

robertajean_ wrote: Does anyone have any idea how Graves will effect me getting health insurance when I’ve got to get my own?

Robertajean – Someone that is an expert on health insurance might be able to provide a better answer, but if you are in the U.S., you *should* have some protections under the HIPAA act, if you make sure that you do not have a break in coverage for more than 63 days.

Generally, HIPAA applies to people who lose insurance coverage because of losing a job or changing jobs…I’m not positive if it covers switching from a family member’s plan to your own.

Once you know that your will no longer be able to take advantage of your mom’s coverage, you’ll definitely want to start researching other options well before that happens. If your break in coverage exceeds the HIPAA limit, this gives insurers more flexibility to *exclude* coverage for your Graves’ treatment for a certain period of time.

[Kimberly]

in reply to: Weigh-in (just for fun) #1068776

"runlacie":6y98012t wrote:

But the good news is I’m down to 139- yay, back under 140 and "only" 5 pounds up from my pre-Graves’ weight. I haven’t felt as hungry and have been running and working a lot. I do have just about the "right" amount of energy- and my HR has seemed pretty close to where it was before all of this began. Maybe this is normal? for now anyways ” title=”Wink” />.[/quote:6y98012t]

Yay…congrats on the weight loss! That’s great that your hunger and energy levels seem to be getting back to normal.

The conference in Charlotte was excellent! All the presenters were great, and it’s always nice to get a chance to connect with folks who "get" what we are going through. I would definitely encourage everyone to try and make it next year!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068771

Are we allowed to use swear words on this board?

Up another .6 to 143.8 — I have GOT to stop this gaining cycle! Of course, I didn’t say "no" to the pecan pie or the creme brulee in Charlotte, so those choices probably didn’t help!

I am starting to do my Weight Watchers tracking online…hopefully, that will give me a kick in the tail to get back on track. The WW web site also has a section where you can create your own blog, so I have started writing about my weight loss and thyroid issues. If anyone here frequents the WW site, my blog is called "Paddington Station".

Here’s hoping for a better report next week…

[Kimberly]

in reply to: New to here, Graves, and life #1067647

Lucy wrote:For those of us unable to attend the conference, is there a way to find out what was said? I’d like to know if any new research has been done. Are they close to a cure?!! ” title=”Razz” />

Ditto what Marpo said about the conference. ” title=”Smile” />

The presenters were actually fairly optimistic that someday we will have an ability to interrupt the autoimmune response that causes Graves’. Unfortunately, that is probably still several years away.

I believe that the issues in posting conference info are that (1) the material is proprietary to the presenters and (2) some of the presentations on Thyroid Eye Disease included pics of actual patients, so distribution could create patient confidentiality issues. Maybe there is a way that some of the key info could be included in a future newsletter.

[Kimberly]

in reply to: frustrated #1067616

Hello – I know the weight issue is frustrating! I am cutting and pasting a post from another thread below, as this info might be helpful.

Best of luck!

As for the weight issues, we had an interesting presentation from a nutritionist during one of the breakout sessions. She utilizes Metabolic Testing to check the Resting Metabolic Rate (RMR) of her clients. This is the amount of calories that our bodies consume at rest to keep our heart, lungs, etc. working.

She provided one example of an actual client wo had RAI and is on replacement therapy. There is a "standard" calculation based on weight, height, and activity level that many people use to determine RMR. However, she found that this woman’s RMR was actualy about 150 calories a day *less* than the standard. I wanted to say, "THANK YOU!!!!!" *Finally*, someone acknowledges that even though our levels might be "normal", our metabolism might be different than it was before. It’s still all about calories in vs. calories out, but the degree of difficulty goes up a notch for those of us who have had thyroid trouble.

If you are interested in getting your RMR measured, the presenter said that the Charlotte YMCA offers testing…so other local YMCA’s might also offer this service. I think my doctor’s office does this as well, so I am going to check it out.

[Kimberly]

in reply to: definative tests for Graves’ ? #1067612

melyssa wrote:Thanks Jenlynn. I don’t know what TSI is but I will look it up and ask my doctor about it next time I see her.

Hi Melyssa – TSI stands for Thyroid Stimulating Immunoglobulin, which is the antibody that causes our hyperthyroidism in Graves’.

The test comes back as a percentage. What’s odd is that most labs will consider anything under 125% or 130% "normal" — however, a "normal" person will have negligible results with a TSI test. Measurable percentages under the 125/130% level mean that the thyroid *is* getting stimulation from these antibodies, but it may not be enough to cause overt signs of hyperthyroidism.

The TSI test helps distinguish Graves’ from other possible causes of hyperthyroidism.

Clear as mud? ” title=”Smile” /> If you google "Graves" and "TSI" you should be able to get some additional info.

Best of luck!

[Kimberly]

in reply to: Hi!! New Here #1067833

jenlynn724 wrote: My name is Jennifer, and I was diagnosed with Graves July 08. My doc at the time didn’t want to treat me, and left me unchecked for a year.

Dang, we needed you to settle a disagreement during the final breakfast roundtable at our conference last weekend! ” title=”Razz” />

Someone asked about the long-term effects of untreated hyperthyroidism, and the endos in attendance said that would *never* happen to a patient, as their doctors would always provide immediate and appropriate treatment.

The endos that attend the GDF conference are obviously the ones who keep up with the latest research and ensure that patients are getting the best care possible. However, I don’t think they realize the extent of how many patients are NOT getting proper treatment.

I hope that you have since found a doc that you are comfortable with and that you are well on your way to recovery. You have already taken a first step by joining this board and working to educate yourself about Graves’.

Best of luck!

[Kimberly]

in reply to: Effects of RAI #1067703

Bobbi wrote: Many people have done well on antithyroid meds, others have had problems. And, as we age, we experience more side effects to drugs — even drugs that we could tolerate as a younger person. I think this may be one reason why our doctors try to move us on from the drugs to either RAI or surgery, all things being equal.

At the conference last weekend, one of the physicians did a presentation on the pros and cons of all three treatment options. He stated that the side effects with ATDs generally occur during the first 90 days of treatment (although the clock "resets" if you stop and then re-start the meds). Therefore, he said that he *would* be supportive of a patient who was doing well on ATDs and wanted to stay on meds for the long haul.

[Kimberly]

in reply to: New to here, Graves, and life #1067644

robertajean_ wrote:I saw a bunch of you mentioning the conference, how did it go?

It was well worth the trip. We got lots of excellent information on different topics…and it’s always great to connect in person with others who "get" what it’s like to deal with Graves’ Disease.

I would definitely consider attending next year’s event, if you are able. There are separate sessions for family members as well, so I think your mom would get a lot out of it as well.

[Author]

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