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in reply to: Post-Tepezza Symptoms #1185930
Hello – 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.
in reply to: New TED diagnosis #1185890Just a note that this is very individual. The GDATF hosted a recent webinar on long-term use of antithyroid medications. Many patients do well with this approach. Of course, if you *can’t* keep levels stable, that would be a reason to consider definitive therapy.
in reply to: Graves and glucose #1185897Hello and welcome – Graves’ disease (and all that comes with it) is definitely overwhelming. The key for now will be sorting out which issues are Graves’ related. Hopefully, you will see some relief as your levels stabilize again – although some issues might benefit separate treatment. I’ve seen research that hypOthyroidism affects A1C – but not sure about hyperthyroidism. Will keep an eye out for additional info.
in reply to: New TED diagnosis #1185886Hello and welcome – hopefully, you will get some responses here, but you might also check out our Facebook group (search for @GDATF and select visit/join group in the top right-hand corner) or on oneGRAVESvoice.com.
TED is SO frustrating. You might be interested in some of the videos that we have over on our YouTube channel. There are several on TED, and also check out the “Q&A With the Docs” video. If this link doesn’t work, search for GravesAndThyroid.
https://www.youtube.com/user/GravesAndThyroid/videos
Hopefully, your doctor also talked to you about lubricating drops (NOT the “get the red out” kind, which can be irritating). You might see some people offering quick fixes on the Internet, but definitely check with your doctor before adding any supplements (other than what your doc already recommended).
Take care – and keep us posted!
in reply to: Graves’ disease but going hypo after treatment? #1185883Hello and welcome – Some patients do end up going hypothyroid after a course of antithyroid medications like carbimazole. (It happened to me after a similar drug, methimazole.) I don’t think it’s fully understood why – could be due to blocking antibodies. We’re fellow patients, not docs, so if your appointment is a few weeks away, I would really encourage you to contact your doctor’s office ASAP to go over the labs and see if they recommend a prescription for replacement hormone.
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