[Kimberly]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065253

Shirley – I changed the title of your post, so hopefully, someone who has been through this will catch the change and respond.

Here are a couple of notes from the book that I have on Graves’ Orbitopathy:

1. Success rates increase slightly with multple surgeries. The authors recommend that not more than 2 muscles per eye be operated on at one time.

2. After surgery, the field of single vision will increase over time. However, lingering double vision issues may remain in gazing upward or to the side.

Hope this helps!

[Kimberly]

in reply to: PATIENT CONFERENCE IN OCT #1065250

Oh, and one other important issue. When you receive your registration confirmation via e-mail, the message references the Carlsbad Sheraton, which is where the conference was in 2008. The Bahia Resort Hotel is the correct hotel for this year’s conference. I have a message in to the office, so this will hopefully be addressed soon.

[Kimberly]

in reply to: PATIENT CONFERENCE IN OCT #1065249

Hi Shirley –

For the conference registration, if you go to the home page at http://www.ngdf.org, you will see the huge section with info on the conference. Scroll down below the pictures, and you will see wording that says "For more information, CLICK HERE." When you click on that link, then scroll down to the bottom of the page. You will see options to call the office to register or to print out a registration form that you can complete and mail in with your payment. There is also an option for online registration (To register online, CLICK HERE). I think that the online registration option is new, so it might not have been there when you visited the site earlier.

There is also a # to call the hotel, mention you are registering for the Graves’ Patient Conference.

Looking forward to seeing you in October!

Kimberly

[Kimberly]

in reply to: Patient Conference – registration Open #1065283

Hi John – Welcome to the boards! I have attended the last two conferences and have found them to be VERY helpful. There are featured presenters who speak on topics that will be of interest to everyone (overview of Graves’ Disease, Thyroid Eye Disease, etc.). Plus, there are smaller breakout sessions that address issues like stress management, nutrition, and skin issues. And there are also separate group sessions for patients and family members…you will find that it is truly an empowering experience to connect in person with fellow patients!

Hope to see you there!

[Kimberly]

in reply to: 6 MONTHS RAI AND STILL A ROLLER COASTER RIDE #1065337

Hi sbigler – If *you* are comfortable with the direction you are getting from your doctor, then your family needs to mind their own business. ” title=”Wink” />

Perhaps it would help to have them read some of the posts from other patients on this board who have had RAI? Some people have the perception (and unfortunately, some doctors seem to promote this) that when you choose RAI, you pop a pill and everything is immediately "fixed". In reality, it does take quite a bit of trial-and-error to find the "sweet spot" for your replacement hormone that will get your labs in range — and that will get you to feeling well again.

Best of luck – please keep us posted!

[Kimberly]

in reply to: Post-surgery update #1065289

@ lhc – Sounds like all went very well. Thanks for sharing your good news…and for the scarf idea. Love this!

@ Joanie – Are you doing OK with that 3 a.m. wake-up call to take your PTU? It seems like if you are on 3x per day, you could take it as soon as you wake up, when you go to bed, and once in the middle of the day…and that would space things out pretty evenly. If what you are doing is working, please ignore this suggestion. I am soooooo NOT a morning person, so the 3:00 a.m. alarm just sounded a little extreme to me. ” title=”Very Happy” /> You definitely want to make sure your body is getting adequate rest as you go through the healing process.

[Kimberly]

in reply to: Life after RAI question #1065308

Hi Kim – When our thyroid levels aren’t at an optimal point, our emotions do tend to be all over the map. And one other possibility you might explore with your doctor is whether you could be clinically depressed. Unbalanced hormone levels and clinical depression are *physical* problems that need to be appropriately treated – we can’t make them go away by “thinking happy thoughts”. Please don’t *add* to your stress by beating yourself up over the fact that your emotions are a little unpredictable right now!

With that said, there are some things that you can do to try and get your mind and body into a more relaxed state. Some patients find relief with yoga, tai chi, meditation, massage, or reiki. Also, just committing some time every day for activities that truly bring you joy can help. And sometimes we need to cancel obligations and/or distance ourselves from relationships that drain our energy, instead of giving us energy. (Sorry, can’t help you with the neighbors or the teenaged son! )

Also, I find that I tend to do a better job of managing stress if I can focus on living in the moment, rather than worrying about the future or being resentful about the past. Of course, making specific *plans* for the future is a good thing…but constantly *stressing* about it isn’t good for our mental or physical health. MUCH easier said than done…but it’s definitely worth the effort.

Take care – and keep us posted!

[Kimberly]

in reply to: Life after RAI question #1065305

Hello – Someone who has been through RAI might have some more specific advice, but in the meantime, here are a couple of thoughts…

It sounds like you are already very in tune with your symptoms, but if you can keep a written symptom diary, this might help facilitate a better discussion with your doctor. Suggestions of items to track include hours you are sleeping at night, heart rate, weight, and whether you get out of breath from activities like waking up the stairs.

It *could* be that after all this time, your body is still healing from the time when you were hypER. Still, you want a doctor who is willing to listen and work with you if you are not feeling well. As you know, our relationship with an endo or other doctor is a long-term one…so you definitely want a doc that you are comfortable with.

Also, keep in mind that the "normal" range is fairly wide…so while your labs might be "normal", it’s possible that they are not OPTIMAL for you. Some people do feel better at the upper end of the range, others in the middle. If you can connect the dots between your symptom diary and your levels over time, this might give you some insight as to what is going on.

Best of luck!

[Kimberly]

in reply to: Surgery Tomorrow, Yikes…. #1065314

Hello – Your dosing will be determined based on blood tests (TSH, Free T4, Free T3) that should occur at periodic intervals. (Around 4-6 weeks). Even better is if your doc can give you a standing lab order so you can get the labs run on your own if you feel a major shift in your symptoms towards the hypO end of the range. Symptoms of hypO vary from person to person, but a few of the common ones include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. Your doctor will probably err on the side of giving you a lower dose to start with (as they don’t want to send you hypER again), and then you will make small dosage tweaks with each test.

Although weight gain *can* be a sign of hypO, this will not impact how your dosing is done. And weight gain is not a slam-dunk sign of hypO, as some patients (like me!) actually gain weight when hypER.

Although we can’t interpret labs here, I can tell you in general that TSI is a definitive test for Graves. A test outside the normal range means that you have the antibodies for Graves *and* that those antibodies are causing enough stimulation to the thyroid to make you hypER. Because the antibodies have a fairly long life, TSI tests are generally *not* done close together, as they aren’t a very good indicator of your progress.

We actually had a very “spirited” discussion at last year’s conference as to whether one is “cured” of Graves’ when the thyroid is removed or destroyed. Once you have your surgery, your *hyperthyroidism* from Graves will no longer be a problem. So in a sense, you are "cured" from your hyperthyroidism. Unfortunately, this does NOT give you a free pass from having eye involvement down the road. So my non-medical opinion is that yes, you still will have Graves’ after your surgery. Although if you asked 10 different people you would probably get 10 different answers to this one!

Best of luck on this stage of your journey!

[Kimberly]

in reply to: Teens with Graves – Film project revitalized #1065319

Hi Jessica – I am starting up a Graves’ Disease support group in Phoenix, AZ that has its first meeting on the 19th…if I run into anyone who meets your guidelines, I will definitely pass on your contact info.

Do you participate in Yahoo discussion groups at all? That might be a good resource for connecting with fellow teens.

Also, I know that this might be too far off for your time frame, but if you are able to attend the GDF’s conference from Oct. 22-24, that might be a good opportunity to meet people as well.

Best of luck with this important project!

[Kimberly]

in reply to: Newly Diagnosed GD — Sad and Scared #1065873

Debaub03 – Sorry to hear about your diagnosis. I also got my diagnosis as a result of routine bloodwork. When a diagnosis comes like this out of the blue, we tend to go through the various “stages of grief” – denial, anger, bargaining, sadness, etc.. But the good news is that an early diagnosis means that our hyperthyroidism was caught before it had an opportunity to do too much damage. There are many patients who literally spend *years* going from doctor to doctor trying to get a correct diagnosis. Some of these folks end up in the ER with thyroid storm…so we definitely have to count our blessings.

All of our treatment options have pros and cons, so this is a decision that you should make in partnership with your doctor. Factors that might affect your decision include whether you are (or want to become) pregnant, whether your thyroid is significantly enlarged, and whether you have eye complications. There are members on this forum who have been through various treatment approaches, so this is a great place to get feedback. You might also try searching this forum for “methimazole” and “RAI”, which will give you some good background information on members’ experiences with the different treatment approaches.

Keep in mind that none of the treatment options is a "quick fix." Regardless of whether you choose Anti-Thyroid Drugs (methimazole, tapazole) or RAI, there will be a period of trial-and-error where you and your doctor work to find the dose that is right for you. But the good news with Graves’ is that once you select a treatment and get your thyroid levels stabilized, you *will* return to good health!

Finally, you noted that your hair was falling out – many of us notice that we lose hair more rapidly when our thyroid hormone levels are changing, either up or down. So if your next appointment with your doctor is far off, you might call and see if you can get bloodwork done sooner, *just* to make sure that your levels are OK.

Best of luck!

[Kimberly]

in reply to: Newly Diagnosed GD — Sad and Scared #1065868

Djones – I know that the weight gain issue is VERY frustrating, as I have been struggling with extra weight since I was diagnosed in 2007. Prior to that, I had lost 25 pounds through Weight Watchers and had maintained at my goal weight for 3 years. (And I know I wasn’t hypER during that period, as I have copies of old lab results).

During a panel discussion at last year’s conference in Charlotte, I asked a question about weight gain and treatment for hyperthyroidism. One of the doctors on the panel indicated that it’s possible there might be a “resetting” of one’s metabolism following thyroid issues. I know that my own metabolism is different than it was before…although part of it could be due to reduced muscle mass, which you mentioned.

However, remaining in a hyperthyroid state is an *immediate* danger to your health and needs to be corrected. Otherwise, this can cause complications such as bone/muscle wasting and heart problems – and occasionally thyroid storm, which can be fatal. So the priority is to stabilize your thyroid levels.

I still count Weight Watchers POINTS, which I think has helped keep things *somewhat* under control. You don’t have to go that formal route, but I do think it’s helpful to keep a food journal from day to day. Also, here are a few suggestions from a nutritionist who presented at last year’s GDF conference:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to resume activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.

Best of luck – and feel free to vent here if you need to. There are *many* of us here who have struggled with weight issues since our Graves’ diagnosis…so we definitely understand.

[Kimberly]

in reply to: Had total thyrodectomy exactly 4 months ago, but still tired #1065352

Starvee44 wrote: But how can one make the FT3 higher, without adding T3 to your medications?

Hello – Our bodies *should* convert T4 to T3 at an appropriate pace to address our body’s needs. For a while, there were rumors circulating the Internet that there was a specific disease where some people couldn’t convert T4 to T3. This has since been de-bunked…however, a presenter at our last conference did note that some patients may not convert as *efficiently* as they should.

Some patients do feel better when they add T3 to their regimen. However, other patients might *not* get a benefit – and still others can end up feeling worse than they did when they started. Rather than letting the body convert T3 to T4 at a natural pace, taking T3 floods the body with an immediate dose of very powerful hormone.

Because of the potential downside, any decision to add T3 to your regimen should be made in conjunction with a medical professional who is familiar with your *entire* medical history…and if you do decide to go the T3 route, your symptoms and blood levels should be closely monitored.

Finding the “sweet spot” with your meds is going to take some trial-and-error…a lot of input from a trained medical professional…and a LOT of patience on your end. However, if you do not feel that your endo is taking your concerns seriously, you might consider finding another one…or checking with your GP to see if he/she is comfortable guiding you through this process. You definitely want someone who will treat you as a partner as you go through this process.

[Kimberly]

in reply to: How do people cope with the nasty comments and laughter ? #1066157

Suzzie – Thanks so much for sharing your story. For those who are still struggling with the effects of Thyroid Eye Disease, it’s very encouraging to hear success stories like yours! Best of luck in the future.

[Kimberly]

in reply to: Rai restrictions #1065348

Hi LANAK – Just curious…are you outside the U.S.? The reason I ask is that doctors overseas generally use more stringent guidelines regarding radiation exposure than those here in the U.S..

Regardless, it’s important to follow your doctor’s instructions. The goal is to minimize the risk of your children being exposed to the effects of radiation, which could potentially cause them to have thyroid issues down the road.

Best of luck!

[Author]

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