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in reply to: Hello and thank you #1172980
Wonderful news – thanks for the update!
in reply to: Thyroid problems causing “insect bites”? #1185682Wow, that is frustrating! Hopefully, others here will chime in. I’ve heard of hives with hyperthyroidism or with antithyroid meds, but your situation is obviously different.
One thought is that I’ve heard a few anecdotal stories of patients reacting to fillers/binders or dyes in their thyroid hormone medication. It would be worth reaching out to your doctor. For people who have this issue, there is usually one dose that has no dyes, and you can adjust the number of pills accordingly. There is also a levothyroxine product called Tirosint that is a gel capsule (and also available as a liquid).
Hello and welcome – if you have a definite diagnosis of Graves’, hopefully, your doctor has tested your antibodies (TSI or TRAb). If antibodies are still raging when antithyroid meds are withdrawn, there is a risk of recurrence. Some patients do go into an extended period of remission, although this is more likely if the antibodies are no longer present.
There are also other potential causes for hyperthyroidism. For example, in Hashimoto’s thyroiditis, patients sometimes go through a period where thyroid hormone levels are too high – and then eventually shift hypOthyroid.
Either way, hopefully, your doctor has a followup scheduled to make sure that your levels are still good. And if you notice a change in your symptoms before your appointment, definitely call your doctor’s office and get in sooner.
in reply to: Methimazole side effect – terrible joint pain #1185670Hello and welcome – hopefully, others will chime in here with their experiences, but joint pain and swelling can be potential side effects of methimazole. That’s good that you have your doctor in the loop and are ruling out potential other causes. Hopefully, you will also have a followup discussion about going back on the methimazole or pursuing other treatment options (RAI, surgery) to make sure that your thyroid levels stay under control.
in reply to: Synthroid to generic -what to expect? #1185665One quick note: the American Thyroid Association recommends followup testing if you switch products in order to confirm that the dose of the new med is correct. After that, as Liz1967 noted, it’s best to stay with a consistent manufacturer. (You should be able to keep tabs on the manufacturer via a 3-letter code on the label. Your pharmacist *should* inform you of any changes, but this doesn’t always happen!)
in reply to: TED surgery – kaiser? #1185661Hello – You can check to see if any of the in-network docs are members of ASOPRS (American Society of Ophthalmic Plastic & Reconstructive Surgery). They seem to be making some changes to their website, but hopefully, this link will work:
https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/
UPDATE: The Dermatologic and Ophthalmic Drugs Advisory Committee of the FDA voted 12-0 Friday in favor of recommending approval of a biologics license application for teprotumumab, a potential new treatment for active thyroid eye disease. This is NOT the final approval, but is one step in the process. Key takeaways:
* Committee members expressed concern about the small study population (90 patients).
* Side effects were discussed (gastrointestinal disorders, infections, muscle spasms, hyperglycemia, and reproductive system and breast disorders), and committee members expressed particular concern about reports of hearing loss and the need for glucose monitoring.
* Comittee Chair James Chodosh, MD, MPH, D.G. Cogan professor of ophthalmology at Harvard Medical School, associate director of cornea service at Massachusetts Eye and Ear noted, “I don’t say this about every disease, but I hate this disease…it is a devastating problem for patients. This is a disease that we need to do something for. This is a bad disease, and it has a tremendous impact on people’s lives. Though the numbers were small, the data presented was quite remarkable for a clinical trial.”
For additional details, please see this link from Regina Schaffer at Endocrine Today: https://www.healio.com/endocrinology/thyroid/news/online/%7Bb02b4c4e-6f26-42bc-8267-74c2021b12dd%7D/fda-committee-unanimously-recommends-approval-of-teprotumumab-for-thyroid-eye-disease
in reply to: Breast Cancer Radiation Therapy and Graves #1185647Liz1967 is correct that fatigue can be a factor with cancer (I’ve included one link below)…but it’s been a while since you had levels checked, that might be helpful as well.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881569/
Wishing you all the best!
KimberlyHello – I removed the link (per the group’s policy), but are there specific questions that we can assist with? We are fellow patients, so can’t give medical advice, but members of this forum are great about sharing their collective experiences.
Hello and welcome – I’m so sorry for your loss. I’m guessing you are outside the USA, since we use a slightly different med here that is similar to carbimazole. I don’t know if your doctor would be open to looking at guidelines from the USA, but the following guidelines from the American Thyroid Association might be of interest:
https://www.liebertpub.com/doi/pdf/10.1089/thy.2016.0457
For women with Graves’ who desire a future pregnancy, there are advantages and disadvantages to ALL three treatment options (antithyroid meds, RAI, and surgery). You deserve a doctor who will discuss with you the risks and benefits of each and help you make the right decision for you.
We’ve had contact with many women who had successful pregnancies while dealing with Graves’. Whether you are taking antithyroid medications – or whether you are taking replacement hormone after RAI or surgery – it is critical to stay in close touch with your endocrinologist and gynocologist to make sure that your levels remain stable both for your safety *and* the baby’s safety.
It *is* true that some women who are taking antithyroid medications during pregnancy find that they are able to keep stable levels on a reduced dose (or even no medications). Perhaps that is what your doctor was referring to?
Wishing you all the best!
We’re on the ground in Denver prepping for Sunday’s free patient education event! Details available here…walk-ins are welcome!
Space is still available for this event – would love to see some fellow forum members in Denver!
in reply to: Just for Fun – The “Off Topic” Thread! #1177873Interestingly, I *just* ran across an article about a kitty up for adoption who is on methimazole for hyperthyroidism. It said she gets the meds through the ear! My understanding is that this is actually a fairly common complaint with cats, while dogs are more likely to be hypOthyroid.
Registration is now OPEN for our patient education event in Denver on Oct. 20th!
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