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in reply to: I don’t think the Prednisone is working #1173197
Oh, no…sorry for this latest frustration! Given the side effects that can come with prednisone, I would not make any adjustments on your dosage without a doctor’s recommendation. Hopefully, you can get some additional guidance on this at your appointment on Friday.
As for knowing when you are in the “cold” phase and ready for surgery, that is more art than science. Doctors will look at a number of measures to see if the disease has been stable over a period of months. Some docs will also do antibody testing as one measure (but not the only one) of when the patient might be stable.
Also, was there a reason that your endo took you off the Tapazole? The normal course with anti-thyroid drugs is to take them for at least 12-18 months. The latest medical guidance recommends doing antibody testing (TSI, TRAb) before withdrawing these drugs, as patients with antibodies still raging are likely to have another hypER episode.
If you are interested in a second opinion from another endo, there are some good resources in the “Looking For a Doctor?” post in the announcements section of the forum.
Take care — and please keep us posted!
in reply to: Side effects from RAI #1173188Hello – Hopefully, you will hear from others who have had RAI (I am currently taking anti-thyroid drugs), but here are a few thoughts…
1. Keep in mind that RAI isn’t a “quick fix”. (None of the three treatment options are). It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once you do go hypo after RAI, your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.
2. I don’t know if you have any eye involvement, but with RAI, there is potentially an increased risk of a worsening of eye symptoms. For patients with mild eye involvement, some docs will recommend a course of steroid therapy in conjunction with the RAI to reduce the risk of subsequent eye complications. For patients with moderate-to-severe or sight-threatening involvement, the American Thyroid Association and American Association of Clinical Endocrinologists recommend anti-thyroid drugs or surgery as the treatment of choice.
3. I don’t know if you have small children, but with RAI, it’s important to fully understand the radiation safety guidelines and make preparations in advance for using disposable dishes, keeping distance from small children, etc.. Also, if you are planning a pregnancy in the future, keep in mind that there is a recommended 6-12 month waiting period after RAI…and antibodies can potentially remain elevated beyond the 12-month mark, which requires extra vigilance.
4. In some patients, hypERthyroidism will temporarily worsen after RAI. As thyroid tissue is destroyed, the thyroid hormone that was previously stored inside the gland gets dumped into the body. There is also a specific condition called “Radiation Thyroiditis” that occurs in about 1% of patients and causes the thyroid gland to become painfully inflamed. This is generally treated with nonsteroidal anti-inflammatory drugs.
Take care – and keep us posted!
in reply to: Have been diagnosed with graves #1173191Hello and welcome to our forum. First of all, Graves’ isn’t reversible in all patients (some do go into a period of remission), but it is absolutely TREATABLE. If you check out the “treatment options” thread in the announcements section of the boards, you can find resources on the three available treatment options (Anti-Thyroid Drugs, Radioactive Iodine, and thyroid surgery). These treatment options can restore you to good health…and give you your life back!
Please don’t let lack of insurance or funds prevent you from seeking treatment. There are a number of clinics in the U.S. that provide care on a free or sliding scale basis. The U.S. government’s Health Resources and Services Administration web site allows you to do a search by zip code. Although they don’t always offer specialist care, they can at least connect you with a physician that can order labs and prescribe medications. You can find them on the web at: http://www.hrsa.gov/index.html
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Also, there is a non-profit organization called the Patient Advocate Foundation that helps individuals who are uninsured and underinsured seek access to medical care. You can find them on the web at: http://www.patientadvocate.org/
Unfortunately, with our healthcare system, we sometimes have to be VERY aggressive in being our own advocates and seeking out appropriate care. But please take the time do this ASAP…both for yourself and for your little girl.
Take care — and please keep us posted on how you are doing.
in reply to: Newbie with Graves – #1170778modo202 wrote:I am having trouble regulating my fat tissues in stomach and noone HEARS me. I am a small petite woman of 5’2″ and am 108 lbs…in reasonably good shape and a breast cancer survivor going to be 60 years young…
No matter what I can’t fit into clothes and there is what I call a THYROID STOMACH BULDGE…I believe it and other women have it also. Any thoughts there?Hello – I have experienced this issue as well and posted some info in this thread:
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http://gdatf.org/forum/topic/42669/
I just wish there were some easy answers as to why this happens to some patients, but not others…and how to keep it from happening!
in reply to: Just dropping in after TED orbital Decompression #1170545Hi Jules – Thanks for the update! Legal action certainly would have required a significant financial/time/emotional investment on your end. In the meantime, hopefully, the docs/techs involved have reviewed your case and understand where mistakes were made.
Wishing you all the best!
in reply to: Orbital decompression is a go #1173111@gatorgirly – So glad to hear that your co-workers were receptive. *Very* odd about all those people in your profession, all diagnosed with Graves’!
I’m not familiar with any specific software that might be of assistance in looking at a screen, although if you do a lot of typing, you might look in those voice recognition software systems, which could potentially help minimize your computer time.
Keep us posted!
in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173052Hi all – Yes, there are two separate events, one in San Francisco and one in San Diego.
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The Thursday evening reception that Shirley mentioned is on 10/25, and is for “early arrivals” for the GDATF’s patient & family conference. (The actual presentations start on Friday morning, 10/26). Here is the registration info:
http://www.regonline.com/builder/site/default.aspx?EventID=1114239
The event in San Francisco is this coming Tuesday, 7/31, and is being hosted in conjunction with the conclusion of the Greater Than Graves’ coast-to-coast bike ride. This event is free, although advance RSVPs are required, due to space limitations and security requirements on the UCSF campus. You can get more info here:
https://gdatf.org/site_media/uploads/gdatf-lfit_event_san_francisco_7-31.pdf
If you can attend either one of these events, I would definitely encourage you to go! The information provided is great, and it’s really encouraging to get a chance to meet fellow patients in person!
in reply to: Crazy Journey #1173162Hello and welcome to our forum. How fortunate that your mom stepped in to help you get a correct diagnosis!
This board has a search function (in the top right-hand corner of the screen), so you can run a search for “ATDs”, “Anti-Thyroid Drugs”, “RAI”, “radioiodine”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.
You can find some info on the risks and benefits of the three options in the “Treatment Options” thread in the announcements section of the forum.
I have been taking anti-thyroid drugs (Methimazole) for going on 5 years now, and plan to stay the course with this treatment unless there is a medical reason (complications with white blood cells or liver function) for me to move on to a more permanent treatment option.
However, the fact that you are dealing with a significant mass will certainly affect your treatment options. One presenter at our Boston conference noted that it is advisable to try and get a definitive ruling on any suspicious nodules prior to proceeding with treatment. The *vast* majority of nodules are benign, but if there is any malignancy involved, surgery will become the preferred treatment option.
Take care – and keep us posted on how you are doing!
in reply to: Muscle cramps #1173185Hello – Have you had labs done recently? Muscle cramps can be caused by several different issues, but some patients notice muscle cramping/aches when hypO.
Also, when you do get labs done, make sure that your doc is aware of the latest guidelines from the American Thyroid Association / American Association of Clinical Endocrinologists (available in the “Treatment Options” thread in the announcements section of this forum) regarding the importance of using Free T4 and *not* TSH to determine when to start replacement hormone. TSH can remain suppressed for quite some time, so it is not a good benchmark for dosing early in the process.
Take care!
in reply to: Orbital decompression is a go #1173106gatorgirly – Thanks for the update…that’s good news that you are in the “cold” phase now and ready to move on!
I’m not familiar with the steroid issue, but perhaps one of our other members can chime in on that.
Wishing you all the best!
Kimberly
in reply to: Help With Phobia #1173056Hello and welcome to our board!
If this is truly a deep-seated phobia that you are talking about, I would strongly suggest visiting with a counselor…we are all fellow patients on this board, not doctors.
If you are just concerned about the side effects of the three treatment options, then you are pretty much just like every other patient, including myself, who has faced a Graves’ diagnosis.
All three treatment options have risks and benefits, and it’s important as patients that we educate ourselves and make an informed choice. You can find some good info to get you started in the “Treatment Options” thread in the announcements section of this forum.
Graves’ is a condition that is likely to get worse over time if not treated – and can lead to complications such as bone/muscle wasting, heart issues, and a potentially fatal condition called thyroid storm. You are much more likely to have a positive outcome by picking any one of the three options, rather than taking no action at all.
Please check back and let us know how you are doing!
in reply to: Old Man at a Party… #1173091Hello – The gentleman you spoke with is horribly misinformed, and could end up causing great harm to his nephew. Iodine is *not* the same as T3! In fact, there was a case in Houston recently where criminal charges were filed against a mother who stopped giving her son Synthroid and supposedly gave him seaweed instead (which is loaded with iodine):
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To my knowledge, there aren’t any long-term effects of replacement hormone, as long as you remain on the correct dose for your body. The body’s need for replacement hormone does change as we age, so you will want to get follow up tests done at least annually once you find that “sweet spot” dosage. Staying on *too high* of a dose for your body can put you at increased risk for bone fractures.
As far as adding T3, that’s a decision that you and your doctor will need to make. Keep in mind that if you are making tweaks too quickly, that might make it more difficult in the long run to find the right regimen that will get you to feeling well again.
Take care!
in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173047Hi Shirley – Wow, that is odd…I could have sworn that you were at dinner with several of us (including Ski and James) on Thursday night at the last San Diego conference!
There will be a reception on Thursday evening (probably around 6:00 – 7:30) with hors d’oeuvres, and after that, those who still want a bite to eat will usually gather at the hotel restaurant.
There will also be a registration desk fo attendees to check in on Thursday, which got a little buried at the Bahia in 2010, but should be more visible at the Kona Kai.
Hope this helps!
in reply to: Free T3 Not Necessary/ TBG? #1173045Hi Alexis – Sorry, I’m stumped! I’ve not heard of TBG being a substitute for T3 testing. Here’s some info from the NIH on the TBG test:
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http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
There is some controversy over the reliability of Free T3 versus Total T3, but if this is important to you (and you are willing to get multiple draws done!) there are services like HealthCheckUSA where you can order and pay for labs online, then have them done at a local facility.
in reply to: Depressed / Fatigued – Frustrated #1173043Hello – Just a quick note that while not all patients have a positive experience adding T3 to their regimen, having *low* T3 levels can certainly cause hypO symptoms.
You might ask your GP or another doc to put a second set of eyes on your latest labs.
Also, keep in mind that the “normal” range is fairly wide, and I am starting to hear more docs say they believe that each patient has a particular spot in the range where they tend to feel their best.
Take care — and please be persistent until you can find a doc who will help get you back on the path to good health!
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