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in reply to: New TED diagnosis #1185890
Just 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.
in reply to: TED not getting better #1185877Hello and welcome – so sorry to hear that you are dealing with this. Do you have confidence in your current medical team? If not, a second opinion might be helpful. A couple of organizations that have physician finders are:
American Society of Ophthalmic, Plastic, and Reconstructive Surgery?
https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/North American Neuro-Ophthalmology Society:
https://www.nanosweb.org/i4a/memberDirectory/index.cfm?directory_id=3&pageID=3390Join us tomorrow (Wed.) at 1:00 p.m. EST for the premiere of our new webinar, “Neuropsychiatric Complaints in Graves’ Disease”! (If you aren’t able to join us then, no worries – the webinar will convert to a regular YouTube video after the premiere.)
UPDATE: The premiere was earlier today, and you can use the link below to view the program at your convenience!
We had a fabulous program today with Dr. Bloomgarden and Dr. Cooper – if you missed the live version, you can check out the program on our YouTube channel: https://youtu.be/WJjSzjFyNU4
in reply to: Hashimoto and Eye Pain (TED?) #1185870Hello and welcome – we are fellow patients here and can’t make a diagnosis for you, but I *can* tell you that it is possible to have eye involvement with Hashimoto’s thyroiditis. An experienced ophthalmologist can help get you diagnosed correctly. These links will hopefully help you find someone near you:
ASOPRS: https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/
NANOS: https://www.nanosweb.org/i4a/memberDirectory/index.cfm?directory_id=3&pageID=3390
in reply to: Concerned boyfriend #1185865Hello and welcome – Although many doctors will tell patients to avoid massive sources of iodine (such as seaweed snacks or “thyroid support” supplements), there is not a formal requirement for a low-iodine diet. (The LID *is* recommended for patients who are going through a scan for thyroid cancer and is sometimes recommended prior to getting an uptake & scan to diagnose the cause of hyperthyroidism.)
Most patients *are* advised to limit exercise until the hyperthyroidism is under control.
One specific lifestyle change that has an impact with Graves’ is avoiding smoking and secondhand smoke.
Hopefully, your girlfriend is in regular contact with her doctor and is getting lab tests done on a regular basis. Adjustments in dosing might be required based on lab results.
It sound like her move is imminent, so it might be helpful to find out what it takes to get an appointment with an endocrinologist in Canada, as here in the USA, it can take some time to get a new patient appointment. (Not sure if Canada has the same issues). Also, one of the medications for Graves’ (PTU) was in short supply in Canada in 2020, so it would be good to follow up if that’s the med she is on. There are other options for medication if that’s the case.
Wishing you and your girlfriend all the best!
in reply to: Concerned ex girlfriend: graves rage & abuse #1185861Thanks for checking in, Rob! Hope that all is well with you. (I mean, other than the COVID-19 crisis. :o)
in reply to: No symptoms? #1185728Hello and welcome – that’s great news if your doc caught your Graves’ before you became symptomatic! Hopefully, you will have good luck with the medication switch.
in reply to: Concerned ex girlfriend: graves rage & abuse #1185858Hello – The search function will allow you to search for relevant terms here (“spouse”, “boyfriend”, “husband”, etc.. This forum isn’t as active as it used to be. We also have groups available on Facebook (search for GDATF and click “join group” in the top right-hand corner of the screen) and at oneGRAVESvoice.com.
in reply to: Concerned ex girlfriend: graves rage & abuse #1185856Hello and welcome – This video on the emotional aspects of Graves’ disease will hopefully be of interest. Having unstable thyroid levels can certainly lead to mood swings – but there can also be other underlying conditions at work. And an adult who refuses to adhere to a doctor’s treatment recommendations is certainly *not* helping the situation. It sounds like you have already separated yourself from this individual, but for someone who was in the middle of this situation, we would tell them to take whatever action was needed to prioritize their own safety.
in reply to: Continuing Stomach Problems #1185824A quick note that celiac disease, ulcerative colitis, and Crohn’s disease are all autoimmune conditions, like Graves’ disease. If you’ve not been able to get any answers, it would be worth asking your doc about these issues.
in reply to: Graves Disease and Radioactive Iodine Treatment #1185723Thanks for checking in with an update – wishing you a wonderful holiday season as well!
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