[James]

in reply to: Diet Support #1063703

Having been down he Antithyroid (ATD ) route long term, I spent much of my early years post diagnosis trying to discover a perfect Graves’ diet. So like you, I can very much relate to your frustration of being told by one medical professional one thing concerning diet, and then another thing by another. I spent a lot of time and money on a holistic practitioner who was also an MD; and although there are certain theories concerning diet and the thyroid that were certainly valid, I was never completed satisfied with the input I was receiving, as it was at times conflicting. There are theories such as broccoli being a goitrogen having the ability to suppress thyroid function. You can’t count on treating the thyroid solely on diet and goitrogens, but rather diet in conjunction with medical intervention (in this case ATD therapy). The goal of course to eventually wean from the ATD and sustain normal thyroid levels. I am a strong believer that a good diet of nutritionally dense foods, avoiding processed foods with preservatives etc is a very good thing and something I personally would strongly encourage. But not as a replacement to medical intervention. As far as dairy is concerned and the reduction on dairy in ones diet. If you do this, you need to make sure that you are replacing calcium at a time when you may need it the most, so that is a tradeoff that must be considered. A qualified dietitian who understands the nature of Graves’ disease or autoimmunity may also be a good resource for you. In the end I came to the conclusion that having a healthy diet of whole foods with everything consumed in moderation was probably the best approach. At least that is what I found after going through a period of searching for answers just as you are doing. To this day I try to limit iodine intake. For me it is using non-iodized salt. We need some of Iodine of course, but through our North American diet we typically receive more than we require.

Wishing you the best.

James

[James]

in reply to: Still no meds #1063732

Laurie,

If you are experiencing what you think are hyper symptoms once again, it is important to get your levels tested as soon as possible, especially since it has been over a month since your last labs. Your labs may be fine in which case something else may be at play. At least you can rule the thyroid out. Your Dr. should be able to help you with that.

I know from personal experience I had relapsed quickly and with the vengeance when coming off of a virus that would not seem to subside (that was a number of years ago now). Anyway, it certainly isn’t out of the realm of possibility. Our immune system ramps up when we are ill. Just something to be aware of and talk to your Dr. about.

James

[James]

in reply to: Is this true? #1063759

Hi Krystal,

According to some of the presenters at last years conference. Stress indeed is considered to be something that has a profound effect on our immune system and indeed is considered a suspected trigger. We have had numerous people over the years post about enduring hardships after the loss of a home or loved one with the subsequent diagnosis of Graves’ disease. There are definitely other suspected triggers but none quite as definitive as stress. Of course there has to be an underlying pre-disposition to the disease to begin with. In my particular Graves’ disease story, I suspect a supplement that I was taking was the trigger. After some research on the product, my suspicions were further raised, but could never be confirmed.

Impossible to get rid of stress in our lives, but a number of our posters have shared some great stress reducing techniques. This was also a topic covered at last years conference.

Hope you feel better soon.

James

[James]

in reply to: MRI Triggers Graves Symptoms #1063765

Hi Ann Marie,

You are correct, we cannot diagnose, but you clearly are taken the correct steps by advocating so well for yourself already. For a lot of patients, they are afraid to ask questions, and often don’t properly communicate the symptoms they are experiencing, so good for you on that.

You, in conjunction with the Doctors that you are working with, have to rule everything out. You stated that you had TSH, T3 & T4 taken in August and all appeared normal. Your symptoms came on suddenly and then subsided according to you. When we are truly hyperthyroid, the symptoms can wax and wane slightly, but as a rule not suddenly go away altogether. Getting thyroid levels under control when hyperthyroid takes weeks and sometimes months to get under control. If you can’t get in to see your endocrinologist soon; why not suggest that your Dr. test your thyroid again, just to be sure everything is in check (TSH, T3 & T4 is a good start). In all my years of reading discussion boards on Graves’ disease, I have never heard of an MRI, triggering a Graves’ relapse. Continue working with your physicians to get the answers that you deserve. The body is definitely a complex machine. Self advocating for yourself and working with your physicians like you have been is your best line of defense. We don’t see that all the time with all Graves’ patients.

Wishing you the best,

James

[James]

in reply to: Newly Diagnosed with Graves in need of some HELP! #1063784

Hello Krystal and welcome,

Everything you are describing in your post concerning the symptoms you are experiencing with Graves’ is very typical. The emotional upheaval, how it can effect your relationships and work, are all things that many of us can relate to. Rest assured it does get better. 5 days into treatment with antithyroid medication (ATD’s), isn’t long enough for any newly diagnosed patient to notice any changes. Firstly the antithyroid medication (Methimazole) that you have been prescribed assists in decreasing thyroid hormone synthesis. Larger doses are commonly given at the beginning to quickly address the hyperactivity, but it does take time to bring the overall levels of hormone down to a reasonable level where you are feeling like yourself again. Results vary from patient to patient. I started at 30mg/day and was reduced progressively after about every 6 weeks. By 12 weeks I was feeling SO much better. Eventually I was taking 5mg of Methimazole/day (a maintenance dose). Blood testing under a Dr.’s care especially during the initial phases is important. Eventually you should be able to tap into the correct dosage to keep you from being too hyper or hypo.

As for the 3 treatment options you had mentioned. All of them are considered “medically acceptable”. There are pros and cons to each, but most people will go on to lead productive lives thereafter with any one of them. We have several Facilitators who have had RAI, and two (including myself) who are or have been on antithryoid medication. We have a few posters who commonly contribute that have also gone the surgical route and may want to share their experiences with you. Right now the most important thing is that you ARE being treated. Once your levels have normalized, you will be in a much better frame of mind to make informed decisions concerning your health going forward.

Wishing the absolute best!

James

[James]

in reply to: I Need More Conference Info Please #1063867

I have cut and paste information that I recently received in an e-mail which hopefully will be of assistance to you.

As far as meals are concerned, I believe special diet requests are submitted when booking online.

For some of your specific questions concerning registration, I would encourage you to call the National Office directly (877) 643-3123. I have found them to be very helpful there.

Here’s the topics and speakers for the Oct. 22-24 Graves’ Disease Patient & Family Conference:

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Presenter: Terry Smith, MD

Topic: Overview of Graves’ Disease
Presenter: Nancy Patterson, PhD

Topic: Taking control of my Graves’ disease
Presenter: Anca Avram MD

Topics: Why am I hyperthyroid?
What can I expect from radioactive iodine treatment?
Does RAI treatment worsen Graves’ eye disease?
Presenter: Kim Cockerham, MD

Topics: My general approach to eyecare in Graves’ disease
Strabismus surgery in Graves’ disease
Presenter: Ray Douglas, MD

Topic: Do steroids & radiation therapy work in Graves’ eye disease?
Presenter: Andrew Gianoukakis, MD

Topics: My general approach to eyecare in Graves’ disease
What can I expect from radioactive iodine treatment?

Presenter: Don Kikkawa, MD

Topic: I have opted for decompression surgery – what should I expect?
Presenter: Mark Lucarelli, MD

Topics: What is wrong with my eyes?
How to manage dry eyes in Graves’ eye disease
Presenter: Barbara Miller, MD

Topics: Graves’ disease from the perspective of an endocrine surgeon
Thyroid surgery: what should I expect & what should I ask my surgeon?

Presenter: Lawrence C. Wood, MD

Topics: What happens to Graves’ Disease during pregnancy?
Kids with Graves’ disease

---

But don’t wait, the Bahia Resort Hotel discount Conference rate will be ending too!

Join us the weekend of October 22-24 in beautiful San Diego, California. The hotel is right on the beach. Registration includes meals & receptions.

You will meet 8 world-renowned doctors who will give you the latest update on research for thyroid disease and eye involvement. Plus learn from Endocrinologists who will inform you about diagnosis and treatment options. There will be separate small group sessions for patients and family members and many interesting topics including Graves’ disease and children.

In addition, Dr. Terry Smith, GDF Chief Medical & Scientific Officer is pleased to announce these NEW Speakers will be at the meeting: Endocrinologist Andrew Gianoukakis, MD and Thyroidologist Lawrence C Wood MD.

[James]

in reply to: Symptoms back after 2 years in remission :( #1063934

I’m a Canadian resident as well (from Calgary). My diagnosis is coming on 17 years ago now. At that time RAI was requisitioned for me very soon after diagnosis. I truly wanted to try other options first, but was hardly afforded the time by my then specialist to even discuss any of the other medically acceptable options (ATD’s being one of them). I’m not sure if it is so much a U.S. vs. Canada thing, but more of a Dr. by Dr. thing. I have met numerous Canadians over the years who have had varied experiences with Doctors, some leaning more toward one treatment option over another. In the end it is you the patient who should make the decision, and hopefully a very well informed decision weighing the pros and cons and looking at your individual medical circumstances that can weigh into your ultimate choice.

Anyway, to make a very long story brief, I was on ATD meds for what would considered to be long term. Two key things that I learned from the experience.

1. Don’t come off of the meds too early, but rather wean very slowly. Coming off of the meds too quickly almost always led to disappointment. Testing for the antibodies can help determine if you are at a stage where you can come off the meds, but there is no guarantee that the troubling antibodies won’t come back with the vengeance at a later date. With specific blood tests, your Dr. should be able to help you determine when to wean off of your meds. Appropriately. I have been in remission for close to 7 years now. I measured my success by having longer sustained remissions followed by a shorter periods of relapses. This was encouraging to me. Individual results will vary of course.

2. Do everything you can to have the healthiest lifestyle possible. Stress reduction definitely important, but also proper diet. It’s not a cure, but rather giving your body the best chance possible to get back in balance and heal. To this day I avoid processed foods as much as possible, and have limited my iodine intake.

There are three valid options and although you may be scared by the alternatives, there are many people who have had positive outcomes from any one of them.

Wishing you the best and hope to see you at the conference.

James

[James]

in reply to: Symptoms back after 2 years in remission :( #1063932

At the conference last year, it was noted that stress IS indeed a trigger to autoimmune related illnesses. There are other suspected triggers, but apparently not all as clearly definitive. Your assumption that an emotional year brought it all back is probably well founded.

From my experience, having had a few bumps along the way over the course of a good number of years, I learned that being in tune with your body is SO important. The moment you feel potential Graves’ symptoms coming on, get tested without delay and ensure that you are treated before becoming so severely hyperthyroid that you feel you are back to where you were when you were first diagnosed or even worse. Avoiding stress (easier said that done), is also important in getting better.

It’s great that you are now back on beta-blockers and seeking treatment again though. When we are in a hyper state, it is not uncommon for any of us (men or women alike), to experience some of the emotional upheaval that you are presently going through. Rest assured, like before, it will all get better in time.

As for the San Diego conference. I would highly recommend that you attend if at all possible. What is nice is that you have the opportunity to listen to a panel of speakers (all specialists in their field), and quite often have the opportunity to mix and mingle with the speakers on a one on one basis afterward. It’s not often that you get so many specialists and other Graves’ patients together to share knowledge and personal experiences with one another. I attended last year and am booked for this year as well. Well worth it and will certainly give you some degree of peace knowing that you are leaving with a lot more knowledge. This is a lifelong disease, but one that is easily managed for the vast majority of people who seek proper treatment.

Wishing you the best,

James

[James]

in reply to: new to aving Graves disease #1063952

Hello Sheila,

Speaking from my experience, it wasn’t until I saw the Specialist that my Graves’ diagnosis was confirmed with 100% certainty although my GP certainly suspected it. The standard tests that your family Dr. might perform would definitely show hyperthyroidism, but not necessarily confirm that it is the autoimmune related Graves’ disease. There are other blood tests to determine if the suspect antibodies are at play causing the thyroid to become over-stimulated, confirming Graves’ disease. I was given a thyroid update scan (RAIU) which was prescribed by the Specialist to determine how much of the radioactive substance was taken up by the thyroid. This test helps determine the size, structure and the overall activity of the gland. Specialized equipment is used to monitor the amount of iodine that your thyroid has absorbed in a prescribed amount of time. This test sometimes assists the Specialist in determining how much Radioactive Iodine Treatment you would require to ablate your thyroid should you choose that as your treatment option (RAI).

A good specialist should take the time to fully explain all three medically acceptable treatment options and answer any questions that you might have about each one.

Good luck to you. Keep us posted on your progress.

James

[James]

in reply to: Possible remission signs on ATD treatment #1064072

I think it is easy to underestimate the power of good living; positive attitude, improved diet, exercise and the elimination (or more appropriately reduction) of stress. None of these things are a guarantee of remission and definitely not a cure, but positive steps we should all be taking rather. I share a similar experience to Scorpio (in my case almost 7 years in remission). The treatment course requires a good degree of resolve and determination. Remission does not occur overnight, but more likely will include a series of bumps along the way. The good news is that we often become so in tune with our body (mostly from experience), that we are able to be more proactive in our treatment, and deal with any setbacks quickly, at least that has been my experience. For me it was well worth the effort. At the present time I get my blood tested every 8-12 months, just to be sure everything is in check . . . more often if required by my physician, or if I should happen to feel symptoms coming on. I have had false alarms from time to time. Many Graves’ patients will often obsess about the disease to the point where anxiety itself may bring on Graves’ symptoms, but may not be Graves’ related at all. It is important to be vigilant, but not obsess (easier said then done for most of us).

Thanks to everyone for sharing their varied experiences on the board.

James

[James]

in reply to: What if RAI??!! #1064224

Hello Marta,

I would have to agree with Kim in that the information you are reading is outdated.

Interesting to note though, back in 1994 (when I was first diagnosed), my endocrinologist was stating that taking a smaller dose of RAI would be an option so that I could potentially be in a euthyroid state for a period of time (note the word “potentially”). It is my understanding that typically that isn’t what would be recommended today though, for the reasons Kim stated. There is at least one or two Facilitators here that could chime in about not having an ablative dose the first time and the situation that arose as a result.

In my particular situation I decided to go with long term ATD therapy which proved successful.

James

[James]

in reply to: Surgical Consultation is Scheduled #1064612

My experience of coming off of ATD’s too quickly was similar to yours gatorgirly. I wasn’t really encouraged by my specialist to even try pursuing the ATD option, because he thought I wasn’t good candidate for remission ever. I too don’t want to discourage you from something you have set your mind to, but rather point out that it that you really aren’t that far along in your treatment process. It’s great that you are so involved in looking at your options so carefully. Not all patients are as diligent as you are, especially when it comes to ensuring that you source a good surgeon. I think ihc11 has done an excellent job in providing you with some great questions to ask.

Best regards,

James

[James]

in reply to: Graves’ Disease – Dr. Oz show today and tomorrow #1064643

Jenn,

You did a stellar job in the Dr. Oz segment! I believe many Graves’ patients can very much relate to your testimony. I find it unbelievable that the symptoms are at times dismissed as a panic attacks or psychological disorders.

I’m not sure if you are aware of this, but your segment was aired internationally as well. Our Canadian network carried it and has the segment posted on their website. I have included the link for those interested. Your segment is within the first 5 minutes of the program (as you have pointed out).

Here is the link:

http://watch.ctv.ca/the-dr-oz-show/seas … clip330123

Thanks again,

James

[James]

in reply to: NY Times piece on thyroid disease #1065498

I think what impressed me most about the NYTimes piece was that they covered a broad range of perspectives and varied experiences from the patients interviewed. I think it shows that Thyroid disease is very treatable, but it isn’t always a one size fits all solution for everyone.

James

[James]

in reply to: Encouragement—for all to read….my current tsh level #1065505

Thanks for posting mamabear. It’s always great when people come back and relay positive outcomes. I think your lifestyle choices are fabulous, not necessarily a cure, but certainly an integral part of your overall good health which can possibly contribute to your remission. Good to hear that you are doing so well! Good luck with the kidney stone as well.

James

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