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in reply to: OK now what…RAI Seriously??? #1173306
Just my personal take, as someone who is closing in on 5 years on ATDs and is feeling pretty well.
Since there is no *completely* risk-free treatment, I’m not ready to roll the dice on one of the permanent options. Could I end up feeling *better* after surgery or RAI?
Absolutely. And it sure would be nice to have labs done only once or twice a year, instead of every 2-3 months.
However, I would also need to accept the risks of surgery or the risks of RAI before proceeding with one of those options…and I’m just not there yet.
in reply to: Thyroid Eye Disease #1173381Hi Shirley – The ophthalmologist who commented that having hyper/hypo swings can aggravate TED actually does look at her patients’ thyroid lab work, so her comments were from personal observation, rather than a research study.
One of her other interesting comments was that Graves’ patients who are dealing with multiple doctors are best served if one of the doctors will serve as the point person in coordinating care, and she often ends up taking on that role.
That’s no doubt a rarity, but you can definitely see how it would really improve the patient’s experience!
in reply to: Question about TSI result #1173346Hi Caro – This has been a subject of controversy among researchers. Do the anti-thyroid drugs have a direct immunosuppressive effect…or does achieving a euthyroid state cause antibody levels to decline? To my knowledge, this issue has not been conclusively decided one way or another.
in reply to: graves with weight gain #1173396Hello – Just a quick note that not all docs require a Low Iodine Diet (LID) prior to RAI. Those who do believe that depriving the thyroid gland of iodine for a period prior to treatment will cause the thyroid gland to take up more of the radioactive iodine.
The LID is commonly recommended for patients who are receiving higher doses of RAI for thyroid cancer.
in reply to: Question about TSI result #1173344Bobbi wrote:Also, the study you initially cited stated that TRAb declined in the blood regardless of treatment method.Hi Bobbi – Yes, over time, the antibody levels declined with all three treatment options. However, RAI was the only treatment option with a spike in antibody levels post-treatment. The peak occurred at about 6 months, and TRAb levels returned back to where they started before treatment at about 12 months. Then from that point, they start to decline.
in reply to: Thyroid Eye Disease #1173375Hello – Unfortunately, it’s difficult (even for our docs!) to tell when the “cold” phase of TED will appear, as every case is a little different.
One quick note on the Synthroid issue…while I agree with the others who posted here that a dosage change should not affect your TED, I attended a presentation in San Francisco earlier this week from a doctor who noted that having constant swings between hyper & hypo can actually aggravate eye issues.
So if you are having huge swings in levels (as opposed to fine-tuning your dose), you might talk to your doctor about this. The pre-packaged dosages of replacement hormone don’t get everyone to their “sweet spot” — some patients end up alternating doses every other day in order to get their levels right. Just a thought.
Take care!
in reply to: Question about TSI result #1173342@Mickiko – I have not seen any studies that showed a remission rate as high as 70% for 18 months of ATD treatment, but if your doc has additional info on this, I would love to take a look!
@Bobbi – The latest guidance from the ATA and AACE indicates there is some predictive value of antibody testing when it comes to weaning off of Anti-Thyroid Drugs: “Measurement of TRAb levels prior to stopping antithyroid drug therapy is suggested, as it aids in predicting which patients can be weaned from the medication, with normal levels indicating greater chance for remission.” Also, this guidance notes that high antibody levels are a risk factor for worsening of the eye disease following RAI (along with smoking and high T3 levels). And many docs (although this is a subject of some contoversy) use antibody testing to determine when a patient with TED is entering the “cold” phase.Certainly, the correlation isn’t perfect, as the wording is somewhat guarded: “…chance for remission…”, “…risk factors…”, etc. — but it is believed that there is some correlation between antibody levels, TED, and the possibility of remission.
in reply to: graves with weight gain #1173384Hello and welcome – I totally understand having frustrations over weight…I used to lead meetings for Weight Watchers and had to quit because my own weight became such a struggle. However, your #1 priority right now is to get your thyroid hormone levels stabilized, which will get you back on the path to good health. A professional counselor might be of assistance in helping you sort through the shock of being diagnosed and the complications that you are currently dealing with.
Unfortunately, weight issues and hyperthyroidism are not well understood. Some patients actually do gain while hyper. Others may struggle with weight gain during or after treatment. Still other patients have no issues at all with weight. For now, focusing on whole foods like fruits, veggies, whole grains, and lean proteins is a good idea, as is keeping a food journal to track intake.
Graves’ is a condition that is likely to get worse over time if not treated. Is it possible you might lose weight by going without treatment? Possibly, but any weight loss is likely to be muscle mass, and that can have severe consequences. I’ve heard from patients who went untreated for long periods of time and lost so much muscle mass that they could not longer do simple tasks like walking up a couple of stairs or holding up a hairdryer.
I would encourage you to please research the three available treatment options and get started with one of them. And if you need a place to vent, please stop by…we all understand what you are going through!
in reply to: Long term Methamazole use? #1171486Carito71 wrote:Kimberly wrote:However, ironically, that same guidance document recommends that patients in Europe have a 50-60% chance of remission after 5-6 years on the ATDs.This is very interesting. 50-60%? So 12-18 months could very likely be less. I wonder if longer than 6 years increases the %s. I’m thinking 50-60% is not much. It seems to be 10% per year on Rx … ???
Hello – Yes, the remission stats I’ve seen out of the U.S. after 12-18 months of therapy are around 20-30%. I’ve only seen one published study that showed higher rates than 50-60%, and that was a study out of Japan involving “block and replace” protocol, and to my knowledge, the success of this study has never been replicated.
in reply to: Question about TSI result #1173338Hello – We’re fellow patients here, not docs, but here is some general information. The TSI test picks up the antibodies (thyroid stimulating immunoglobulins) that cause hyperthyroidism in Graves’ disease.
One study showed that antibodies can spike for a period of 6-12 months following RAI treatment for Graves’.
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://www.eje.org/content/158/1/69.full
One theory is that this might be why patients who receive RAI have a higher risk of eye complications…although there is a competing theory that what really increases the risk is if doctors allow patients to go hypO after RAI.
Hope this helps – take care!
in reply to: Appendectomy #1173313Hello and welcome! I’m not familiar with any specific post-surgery complications, but I would definitely ask your surgeon or endo.
The biggest concern is generally *pre*-surgery, as the preference is to make sure that patients have normal thyroid hormone levels prior to any surgical procedure. If that’s not possible, patients are usually treated in advance with potassium iodide and beta blockers to reduce the risk of thyroid storm while the surgery is in process.
in reply to: Had RAI and so far so good #1173366Hi Patti – Thanks for sharing your story…please keep us posted!
in reply to: What my surgeon said #1173158Hello – The TPOabs are markers for inflammation. A goiter can actually occur in several cases, including hyper, hypo, and also insufficient iodine (which is *extremely* rare in developed nations).
in reply to: How Long For Beta-Blockers #1173351Hello – I agree with Jules and Caro that you should look at other options to try and get a quicker appointment/evaluation.
If you have a definitive diagnosis of Graves’, some primary care physicians are comfortable prescribing and adjusting dosing for anti-thyroid drugs.
If your schedule is flexible, you can also ask to be placed on a cancellation list, which might get you in more quickly.
Take care — and keep us posted!
in reply to: Ophthalmologist referral in Los Angeles? #1173326Hello – In addition to gatorgirly’s suggestion, you can also search at http://www.asoprs.org.
(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
The “Find a Surgeon” option is on the blue header towards the top of the screen. This organization is the American Society of Ophthalmic Plastic & Reconstructive Surgery, and these doctors are usually more familiar with Graves’ complications than other eye docs. You can search by city, state, or zip code.
Take care!
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