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Hello and welcome – we’re fellow patients and can’t give medical advice, but the first priorities will be to (1) see if your Free T4 and T3 are also out of range and (2) to narrow down a specific diagnosis, as that will affect your treatment options. Blood tests for Graves’ antibodies (TSI, TRAb) can diagnose Graves’, and there is another test called the Radioactive Iodine Uptake & Scan that can help distinguish between Graves’, the early stages of Hashimoto’s thyroiditis, and overactive nodule(s) if the antibody tests aren’t conclusive.
You might call & ask if you can get any additional required blood tests done AHEAD of time (if your insurance allows), so you can spend the time in the office discussing the results, instead of getting them over the phone or online.
in reply to: Post Graves Pregnancy #1186299Congratulations – and thanks for sharing your success story! I once heard pregnancy referred to as a “stress test for the thyroid”. So hopefully, your wife will be able to get back to her medication “sweet spot” soon.
in reply to: What do you think of this theory? #1185928From the American Thyroid Association regarding their guidelines:
“The balance between benefits and risks, quality of evidence, applicability, and certainty of the baseline risk are all considered in judgments about the strength of recommendations (7). Grading the quality of the evidence takes into account study design, study quality, consistency of results, and directness of the evidence. The strength of a recommendation is indicated as a strong recommendation (for or against) that applies to most patients in most circumstances with benefits of action clearly outweighing the risks and burdens (or vice versa), or a weak recommendation or a suggestion that may not be appropriate for every patient, depending on context, patient values, and preferences. The quality of the evidence is indicated as low-quality evidence, moderate-quality evidence, or high-quality evidence, based on consistency of results between studies and study design, limitations, and the directness of the evidence. In several instances, the evidence was insufficient to recommend for or against a test or a treatment, and the task force made a statement labeled “no recommendation.” Table 1 describes the criteria to be met for each rating category. Each recommendation is preceded by a description of the evidence and, is followed in some cases by a remarks section including technical suggestions on issues such as dosing and monitoring.”
in reply to: What do you think of this theory? #1185927Hello – A reminder that I’m a fellow patient. This decision should ultimately be made between you and your doctor, taking into account your personal preferences and your medical history.
My personal experience is that I took antithyroid drugs for seven years. I was literally leaving for vacation the day after I got diagnosed, so my doctor sent me on my way with a prescription for methimazole. I responded quickly to the meds, so opted to *not* do RAI. After 7 years, I weaned off & stopped the meds (under a doctor’s supervision) and had two years of stable labs. Then over a period of 2-3 years, I went hypOthyroid and had to start taking replacement hormone. That’s *not* the usual course of the disease – I believe it’s only around 10-15% of patients. Side effects with ATDs typically occur during the first 90 days, with *one* exception – vasculitis – that can occur with longer-term use.
An old fashioned “pro and con” list can be helpful in sorting out your thoughts. When you read peoples’ experiences on the Internet, keep in mind that the vast majority of people posting are those with negative experiences – *and* a lot of the sites out there are not moderated, so people can post less than credible information.
Sometimes, there are factors that will help you predict someone’s reaction to treatment. For example, we know that patients with extremely high antibody levels, extremely high thyroid hormone levels, and current smokers are at higher risk for worsening of eye disease after RAI. But unfortunately, doctors can’t predict every scenario. It’s one of the things that makes Graves’ so challenging.
I will dig up & post the American Thyroid Association guidelines regarding quality of evidence. Where you find areas of conflicting recommendations, please discuss these with your own doctor, and rely on their expertise.
Reluctance to do RAI comes primarily from concern over worsening of eye disease – as well as some patients wanting to try for remission before choosing a permanent option. But other patients do go straight to RAI or surgery, and are happy with that choice. Again, ultimately, this is up to you and your doctor. If a second opinion might give you some piece of mind, perhaps your primary can try and get you a referral to another endocrinologist (although sometimes wait times can be long for new patient appointments.)
in reply to: Post-Tepezza Symptoms #1185930Hello – Muscle cramps are listed as a potential side effect for TEPEZZA (TM). Hopefully, you’ve reported this issue to your doctor to get further direction. This forum doesn’t get a ton of activity, so you might also consider asking this question over on oneGRAVESvoice.com (a collaboration between GDATF, Horizon Therapeutics, and rareLife Solutions) or in our closed Facebook group. (From Facebook, search for @GDATF and select “Join Group” in the top right-hand corner of the screen).
in reply to: What do you think of this theory? #1185924Hello – We already had a user named “Meredith”, so I switched it to “Meredith2021”. Not sure why the registration date is being glitchy – I don’t think I can change that on my end.
With Graves’, some issues have wide agreement among doctors, such as no RAI if you are pregnant. However, there are a lot of other issues that aren’t fully settled, such as pretreatment with ATDs prior to RAI. The American Thyroid Association guidelines that I mentioned earlier do recommend pretreatment for patients who are at risk of a worsening of hyperthyroidism – specifically the elderly and those with conditions like heart issues. However, they rank their recommendations according to the amount of evidence available, and this one was noted as “weak”. Ultimately, this is a decision that you and your doctor will need to make.
This is a presentation from a GDATF conference from around 10 years ago, but the basics should still be the same. (Other than we have more specific guidelines on when RAI should be used in patients with existing eye involvement.)
https://www.youtube.com/watch?v=XNejWQCwB10
Dr. Cooper notes in his presentation on long-term use of ATDs that the shift in the USA is largely patient-driven, from those who wish to make an effort to keep their thyroid. I also suspect that it has to do with heightened awareness of potential eye issues.
Again, ultimately, this is a choice that you and your doctor need to make. As the American Thyroid Association notes, “Once it has been established that the patient is hyperthyroid and the cause is GD, the patient and physician must choose between three effective and relatively safe initial treatment options: RAI therapy, ATDs, or thyroidectomy…the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected speed of recovery, drawbacks, potential side effects, and costs. This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences of the patient.”
in reply to: What do you think of this theory? #1185921(Edited) Hello – Thanks for being flexible on the username to help us avoid confusion with our other admin! I changed it to EB2021 – but can change it to something else if you have a preference.
You hear different definitions of remission. The one from the American Thyroid Association is one year of normal levels with *no* medications – so that one wouldn’t apply with RAI. Another definition is undetectable antibody levels, which you could eventually get to with RAI, although antibody levels tend to spike in the months following treatment.
I don’t know when the presenter was treated with RAI, but it was at least prior to 2009, when I first heard him give a lecture at a GDATF event. Back then, RAI was the front-line treatment for Graves’ in the USA. These days, ATDs are more commonly used in newly diagnosed patients. I’ve since heard him lecture several times, and he’s not suggesting ATDs are “better” – just providing info on options.
All three treatment options have risks and benefits. The American Thyroid Association has a nice set of guidelines that include info on when patients might favor one treatment option over the others:
https://www.liebertpub.com/doi/full/10.1089/thy.2016.0229Those who choose ATDs either want an opportunity to try for remission – or they choose to continue on a low dose of meds. (The risk of side effects is lower with a low dose, and with one exception – vasculitis – the first 90 days are the highest risk time for side effects.)
Unless you have an obvious issue that prevents you from choosing one of the three treatment options (for example, docs will NOT recommend RAI if you are pregnant or of you have active, severe eye involvement) whatever choice you make in conjunction with your doctor is a valid one.
in reply to: What do you think of this theory? #1185918Hello and welcome!
First, do you mind if we work with you to update your screen name to avoid confusion with our admin, Ellen_B?
Hopefully, you will get some personal experiences here. You might also join our closed Facebook group, as that is a lot more active these days.
I suspect that what you’ve read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves’. The goal these days with RAI is to completely knock out all thyroid hormone production, so you *aren’t* likely to have a recurrence of hyperthyroidism. All three treatment options have risks and benefits.
If you are considering antithyroid medications, you might be interested in this recent webinar that the GDATF hosted: https://www.youtube.com/watch?v=WJjSzjFyNU4&t=945s
Take care!
in reply to: What do you think of this theory? #1185914Great to see you!
I’ve not seen research on gluten intolerance and absorption, but there *have* been studies on celiac and poor absorption of levothyroxine:
http://www.thyroid.org/wp-content/uploads/2012/07/clinthy_v243_4_5.pdf
One question you might ask your doctor is if there is any concern that you have celiac. If so, your doc might want you to wait on going gluten free until after you’ve gone through testing (as that can affect the results).
Take care!
in reply to: New TED diagnosis #1185895Hello – I’ve not heard of patients using TEPEZZA (TM) *just* for swelling, but you might also check out our Facebook group, which tends to be more active:
https://www.facebook.com/GDATF/
Also, our YouTube channel has some good content on surgical options that will hopefully be of interest:
Hello and welcome – hopefully, others will chime in here, and you might also check out our Facebook group, which is more active. From our main page, click “join group” in the top right-hand corner of the screen, and answer the 3 new member questions:
https://www.facebook.com/GDATF/
Honestly, at this point, I would give you the old advice about putting on your *own* oxygen mask before assisting others. Graves’ takes a toll both emotionally and physically, and you need some time to heal. If your partner might be interested in taking some time to learn more about Graves’ disease, this video might be of interest:
in reply to: Thyroid and soy #1185910Hello and welcome – I think the concern with soy is more about its impact on absorption when you take your replacement hormone. So it’s generally recommended that you space out soy (along with calcium and iron supplements) 4 hours apart from when you take your meds.
There has actually been a recent recall of NP Thyroid because some of the product analyzed wasn’t at full strength, but if you are feeling well, it’s hopefully not an issue for you. You can read more here:
in reply to: Hyperthyroidism #1185902Hello and welcome – We are fellow patients here, but a couple of thoughts…
1. Definitely see an experienced ophthalmologist to get your eyes checked out. Your doctor might have a suggestion for a referral, but this site also has a good search engine where you can find a doctor near you. (It’s specifically for surgeons, *but* these docs tend to have more expertise with thyroid eye disease.)
https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/
2. You deserve to get your quality of life back! Please document all of the symptoms that you mentioned and take them back to your doctor (endo or primary care physician). An updated set of labs would also be helpful. For people who are feeling well post-RAI, TSH alone is fine, but since you are having symptoms, it would make sense to see where your Free T4 and T3 are. A second opinion can be helpful if your doctor isn’t taking your concerns seriously.
Wishing you all the best!
in reply to: METHIMAZOLE long term?? #1185904Hello and welcome (and thanks for the kind words)! A couple of resources:
* You can check out the very first “sticky” post at the very top of the forum for some personal experiences: https://gdatf.org/forum/topic/44273/
* The GDATF just did a webinar last February on long-term use of antithyroid medications: https://www.youtube.com/watch?v=WJjSzjFyNU4&t=78s
Even if remission isn’t in the cards, some patients do well taking antithyroid drugs over a period of years – *if* their thyroid levels can be well controlled on a lower dose *and* if they are not experiencing side effects. Ultimately, it’s up to you and your doctor to weigh the risks and benefits of all three treatment options (meds, surgery, RAI).
Take care!
Hello and welcome – as you noted, patients do often need tweaks in dosage as they age. Another thought is that hyperthyroidism can recur if the thyroid isn’t fully destroyed by RAI. These days, doctors give a “fully ablative dose” – but in decades past, some doctors thought they could give a “Goldilocks” dose to correct the hyperthyroidism without needing thyroid hormone replacement.
As far as I know, the thyroid, the cells and tissues behind the eyes, and the skin (often on the front of the shin) are the primary targets for Graves’ antibodies. But certainly other organs can be affected when thyroid levels are out of balance – and perhaps future research will shed more light on whether antibodies are directly involved.
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