[Kimberly]

in reply to: Question When to consider eye surgery for graves #1066530

markwagner wrote: Can you tell me what is the most accurate way to determine if and when I am out of the "hot phase" and in the "cold phase" of this process???

Hi Mark – This is something that will need to be determined by an ophthalmologist. There are several criteria that are indicative of Thyroid Eye Disease, including eye pain, vision changes, swelling, and proptosis (bulging of the eyes). The doctor will monitor these (and other) criteria at periodic intervals, such as every three months. When you get to a point where your symptoms are no longer getting worse, this is an indication that you are entering the "cold" phase. The evaluation is based on a combination of specific measurements (such as proptosis) as well as your own reporting of symptoms (such as eye pain and degree of double-vision). That’s why it’s important to get a qualified ophthalmologist on your team early in the process.

Also, you asked about preventative measures that you can take. I’m not aware of any that apply specifically to muscle issues and double vision. Most of the suggestions I’ve read have to do with minimizing dryness and reducing swelling: using eye drops frequently, wearing wraparound sunglasses to avoid excessive exposure to sun and wind, elevating the head of your bed, and wearing an eye mask at night. Also, if you smoke, quit! Smokers (and even those who are exposed to second-hand smoke) are at a much higher risk for severe complications with Thyroid Eye Disease.

Hope this helps!

[Kimberly]

in reply to: Question When to consider eye surgery for graves #1066524

Hello – I’m sorry you are dealing with all of this…how frustrating! Thyroid Eye Disease typically goes through a "hot phase" where symptoms worsen (swelling, dryness, double vision, etc.), followed by a period of slight improvement, followed by a "cold phase" where symptoms are stable. This entire cycle can take months — or even a couple of years.

For now, it is a good idea to establish a relationship with an ophthalmologist who is familiar with Graves. While we can’t reccomend specific docs here, if you google "ASOPRS" this is an association of professionals who specialize in plastic and reconstructive surgery of the eye.

Surgery is *not* recommended until the patient enters the "cold" phase where symptoms have stabilized. (The one exception is that if the optic nerve is being compressed to the point that one’s vision is threatened, surgery will be done immediately to prevent future loss of vision). The reason for waiting is that you wouldn’t want to go through surgery now — and then have to do it all over again if your vision changes a few months later. But if you establish a relationship with an ophthatlmologist now, and check in every three months or so, he/she can tell you when you have entered the "cold" phase and would be a good candidate for the eye muscle surgery.

In the meantime, an eye patch might be an alternative if the prisms just aren’t working for you. Hope this helps!

[Kimberly]

in reply to: Scared, frustrated could use help #1066538

onlyhope77 wrote:So my question is this – is this normal behavior for a Graves Patient???

Hello – When our thyroid hormone levels are out of whack, this definitely affects our personalities. However, once we have been through treatment and our hormone levels are stabilized, we should start to see an improvement (although the healing process can still take some time).

Are your daughter’s thyroid hormone levels are stable now? I wasn’t sure if this was the case from your post. If not, choosing a treatment option (Anti-Thyroid Drugs, Radioactive Iodine, and Thyroidectomy/Surgical Removal) and getting her levels stabilized will help your daughter feel SO much better. I would recommend that your daughter get copies of her lab tests at every visit, so she can see the test results for herself. It is helpful to look not just at the TSH test, but also Free T3 and Free T4, as these measure the available levels of actual thyroid hormone in the body.

If her levels *are* stable, there could be other issues going on besides the Graves’. Do you have a primary care physician that your daughter can discuss her situation with?

Also, you might check out the posts from February 1st — another member recently had similar issues with a son who was diagnosed with Graves’. Perhaps some of the advice that she received will be helpful to you as well. Best of luck to you and your family!

[Kimberly]

in reply to: RAI treatment #1066533

Hello – I would definitely mention the swelling issue to your doctor, as this can come from several causes — and might not necessarily be related to the Graves’. Have you noticed lesions in the shin area? A small number of Graves’ patients experience a condition called Pretibial Myxedema, which shows up as a thickening of the skin on the shins and can be accompanied by swelling. If this is the case, your endo should be able to refer you to a dermatologist for further treatment.

As for RAI side effects, you will get a more complete answer from those who have selected this treatment option. But one issue to discuss with your endo is whether you have any eye involvement from your Graves’. A study that was presented at last year’s GDF conference stated that about 15% of patients who went through RAI had a worsening of eye symptoms. This risk can be significantly reduced with a course of steroids prior to RAI…although steroid use has its pros and cons as well.

Also, patients who have RAI will have fluctuating thyroid hormones until they find the "sweet spot" of thyroid replacement hormone that makes them feel best. If you do a search on this board for "RAI", you can read some of the stories from other patients who have been through this — and get an idea of what the process is like.

Keep in mind that you do have three treatment choices: Anti-Thyroid Drugs, RAI, or Thyroidectomy (surgical removal of the thyroid). All three treatment options have pros and cons — so it is important to select an option that both you and your doctor are comfortable with. Best of luck!

[Kimberly]

in reply to: Not going to do radiation or surgery…am I a minority? #1066550

Hi Audrey – I have been on ATDs for 2+ years, and my levels are fairly well controlled with a low dose of meds. At our GDF conference last fall, one of the endocrinologists stated that he would support a patient in using ATDs for the long haul — as long as they were able to keep their levels stable on a fairly low dose…and as long as they did not have any side effects, such as liver or white blood cell complications.

One thing to keep in mind if you are stopping and starting the meds periodically: this doctor also mentioned that the risk of side effects is highest when you first start taking the meds. This applies whether a patient is brand-new to the meds…or is starting up again after a period of remission. While the side effects *are* rare, it’s good to monitor liver and WBC function with periodic blood tests (complete metabolic panel and complete blood count).

A quick question: was it your T4 instead of your TSH that was high? The reason I ask is that Graves’ patients generally present with *high* T4 and *low* TSH. The symtoms you describe are definitely in line with hypERthyroidism, but a TSH that is out of range on the high side usually indicates that the patient is hypOthyroid.

Best of luck!

[Kimberly]

in reply to: Bulletin Board increases security & new users to be approved #1066582

Thanks, Peter. This is great news!

There is one thing that members should be on the lookout for. I noticed some spammers on the board a while back who would create their first post by copying other people’s posts. For example, their first post would say, "I agree that…" and then copy another post word for word. Then once they got "in", they would start to Spam.

If you see one of your posts being used in this manner, definitely report this.

[Kimberly]

in reply to: Thanks to Graves’ #1066578

I’m sorry for everything that you’ve gone through…but WOW…how fortunate that those cancerous cells were removed at such an early stage! Feel free to post here as you go through the process of finding the "sweet spot" with your replacement hormone. There are several members here who have had a Total Thyroidectomy, and I’m sure they would be happy to share their experiences.

Best of luck!

[Kimberly]

in reply to: Scared and Frustrated #1066618

Kristi – Here are a few other issues to consider, as you discuss options with your doctor…

1. You mentioned that you have some eye involvement. At last year’s conference, one of the presenters shared a study that approximately 15% of patients who had RAI had a worsening of eye symptoms. This risk can be significantly reduced by taking a course of steroids prior to the RAI — although steroid use does come with its own pros and cons.

2. Again, at last year’s conference, one doctor mentioned that the risk of complications (liver or WBC issues) with Anti-Thyroid Drugs decreases over time as you continue to take the meds. However, if you re-start the meds, your risk is the same as a brand new patient. This is still a *small* risk, but one that should be considered.

3. I have heard mixed reviews from the presenters at our conferences about the value of antibody testing prior to withdrawing Anti-Thyroid meds, but you might discuss this with your doctor. One theory is that withdrawing the meds while the antibodies are still active is more likely to result in a relapse. Also, I’m sure that doctors have different definitions of "remission" — but one of the docs at our conference said that his definition of remission was a period of one year with no meds and normal thyroid levels.

Sorry if I’ve made things *more* confusing instead of *less* confusing — but these are issues that you will want to cover with your doctor when making a decision on a treatment choice.

Best of luck!

[Kimberly]

in reply to: HELP MY 18 YR OLD SON’S BEHAVIOR IS OUT OF CONTROL #1066611

Hello – I am so sorry that you are going through this.

Probably every single Graves’ patient on this board would tell you that we were NOT ourselves while our thyroid levels were unbalanced. But your son *does* need to take responsibility for his own life and his own behavior. The good news is that he will feel SO much better once his levels are back under control! However, he needs to take an active role in managing this disease. If he goes through RAI, he will still need to remember to take his thyroid hormone replacement each day. As you said, you shouldn’t need to be a babysitter!

Hopefully, someone who has been through this can jump in with a good suggestion as to how to approach this sensitive issue with your son. In the meantime, can you talk to your landlord and explain that your son is dealing with a medical issue that you are working to resolve? You certainly don’t need to add finding a new place to live on top of everything else on your plate.

By the way, is your son on meds for his ADHD? If so, I would definitely mention that to his doctor or pharmacist, just so they are aware of any possible drug interaction.

Best of luck – we are always here if you need to vent.

[Kimberly]

in reply to: Please help… #1066751

Tamara2010 wrote: I have been on Tapazole for a few weeks now and they don’t seem to work yet at all…I don’t know if they take awhile or what?

Hi Tamara – The meds do start working right away to block production of *new* thyroid hormone. However, we can still feel hypER for several weeks while the body uses up its existing stores of extra thyroid hormone. Hopefully, you will be getting another set of labs done soon just to make sure that your levels are moving in the right direction.

Best of luck!

[Kimberly]

in reply to: Kimberly is our newest BB Facilitator #1066638

Hi all,

Thanks to Peter for the introduction — and to Ski for the kind words. I am very excited about the opportunity to take a leadership role in assisting fellow Graves’ patients and furthering the GDF’s mission! I am also very much looking forward to participating in next month’s training session – although I am hoping that Nancy can use her magic wand to melt all that ice. ” title=”Razz” />

A bit of background: my abnormal thyroid labs were identified during a routine physical in Spring of 2007, and I got my diagnosis in October 2007…the day before I left for a vacation! I have been taking methimazole since, with several dosage adjustments to try and find my “sweet spot”. I still struggle with minor issues (mild eye involvement, weight gain, slightly low WBC), but I feel SO much better than I did when I started on this rollercoaster ride. I spent this morning at the gym lifting weights…two years ago, it was about all I could handle to lift *myself* out of bed!

I visited the Trevi Fountain in Rome last summer, where legend holds that when tossing coins into the fountain, the third coin will bring a divorce. As I tossed the third coin over my shoulder, I wished for a divorce from my Graves’ Disease. But there are a few things I wish to retain custody of: the friendships I’ve made with fellow members of this odd “club”, a commitment to managing stress effectively, a diet that minimizes processed foods, my nightly 8 hours of sleep a night (as opposed to my old 6 or 7), and a renewed appreciation of the good health that I do have…the many things I can do…the good days that I have had…and those that are to come.

Best wishes, everyone!

[Kimberly]

in reply to: My Grave’s Disease story on the Dr. Oz show tomorrow #1066779

Hi Jenn – Thanks for posting this…I just caught the episode this morning. Your eyes look fabulous…I wish mine looked that good. ” title=”Very Happy” />

I know that the time was limited, but I wish that Dr. Oz would have clarified that Graves’ is just one potential cause of hyperthyroidism…and also that not everyone with Graves will have the eye issues. Still, it was a great way to bring this issue to the public’s attention. I read SO many stories of Graves’ patients who were repeatedly misdiagnosed before FINALLY getting treatment.

Thanks for sharing your story!

[Kimberly]

in reply to: Glen W. Bell passes #1066801

I am so sorry to hear of Mr. Bell’s passing. Thoughts and prayers to Steve and Kathleen, and the entire Bell family.

[Kimberly]

in reply to: Hi, new here #1066866

mifis wrote: I am feeling very heavy, have never weighed this much before and generally down in spirits. Is this kind of normal too?

Hello – If you do a search on this site for “weight”, you will see that your concern is shared by many patients. This is a complex issue. Although re-gaining weight lost while hyperthyroid is a good thing, some of us find ourselves carrying EXTRA weight once our thyroid levels have stabilized.

Many doctors will tell us that we “just can’t eat like we did when we were hyper.” But I heard a couple of comments at this year’s GDF conference that indicate our metabolism might not be the same from what it was BEFORE we were hyper.

During a panel discussion, 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. Also, 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 who had been treated with RAI and stabilized on a dose of thyroid hormone replacement. There is a "standard" calculation based on weight, height, and activity level that many people use to determine RMR. However, the nutritionist found that this woman’s RMR was actually about 150 calories a day *less* than the standard. The nutritionist’s comment for patients trying to lose weight was, “you have to track EVERY calorie” – because our margin for error is so thin. (Personally, I track Weight Watchers POINTS, which is not as precise in terms of calories, but still a good tracking mechanism).

Although this was just one individual, I believe this is not an isolated case. Personally, I find that I gain weight much more quickly now, and it’s harder to get off. NOT impossible – just more challenging. I’m currently down almost 5 pounds from my high weight last October

Hopefully, you can find your "sweet spot" with the meds and get out of this hyper/hypo yo-yo cycle. That will certainly help. But the weight comes off sloooooowly, and we have to be super patient with ourselves. We also need to follow our doctor’s advice in terms of when we can start incorporating exercise back into our daily routine.

Also, as Bobbi said, it’s important to find an endo you are comfortable with…and one who will order blook work and work in an appointment for you if you just don’t FEEL right in between regular appointments. Adjusting the meds is part science, but it’s also part trial-and-error.

Best of luck!

[Kimberly]

in reply to: Graves Disease and Exposure to Someone with Tuberculosis #1066900

Hello – Are you currently taking ATDs? (Methimazole, Tapazole, etc.?) If so, you might want to consult your endo to see if he/she wants to do a White Blood Cell count. And I would *definitely* do this if you do find that you are infected and you are taking ATDs. If your WBCs are looking low, your doc might choose to adjust your meds to ensure your body can fight off the TB.

By the way, it would be a great lesson to teach your students how NOT to pass germs on when they are sick, especially with the continued concerns about H1N1. I see WAY too many grown-ups coughing in to their hands and then touching stuff or shaking other people’s hands. UGH!

[Author]

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