[Kimberly]

in reply to: TED not getting better #1185877

Hello 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=3390

[Kimberly]

in reply to: Upcoming Webinar Feb. 24th: Neuropsychiatric Complaints in Graves’ Disease #1185873

Join 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!

[Kimberly]

in reply to: (Update: Now Available on YouTube!) Webinar on Long-Term Use of Antithyroid Drugs – Saturday, Feb. 6th #1185868

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

[Kimberly]

in reply to: Hashimoto and Eye Pain (TED?) #1185870

Hello 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

[Kimberly]

in reply to: Concerned boyfriend #1185865

Hello 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!

[Kimberly]

in reply to: Concerned ex girlfriend: graves rage & abuse #1185861

Thanks for checking in, Rob! Hope that all is well with you. (I mean, other than the COVID-19 crisis. :o)

[Kimberly]

in reply to: No symptoms? #1185728

Hello 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.

[Kimberly]

in reply to: Concerned ex girlfriend: graves rage & abuse #1185858

Hello – 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.

[Kimberly]

in reply to: Concerned ex girlfriend: graves rage & abuse #1185856

Hello 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.

[Kimberly]

in reply to: Continuing Stomach Problems #1185824

A 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.

[Kimberly]

in reply to: Graves Disease and Radioactive Iodine Treatment #1185723

Thanks for checking in with an update – wishing you a wonderful holiday season as well!

[Kimberly]

in reply to: Facebook Livestream Event on Thurs. Dec. 10th at 8:00p EST #1185853

Reminder: Tonight’s the night! Hope you can join us on Facebook at 8:00 p.m. EST / 5:00 p.m. PST.

If you aren’t able to join us live, the event will be archived at https://www.facebook.com/TheAAES.

[Kimberly]

in reply to: All of a sudden I’m hypothyroid #1185706

Hello – I know this is super frustrating. Hopefully, your doc is exploring possible causes. Potential reasons for fluctuation include aging (people often need to lower their dose as they age), remnants of thyroid tissue regenerating, major changes in weight, the onset of other gastrointestinal issues, getting a different prescription at the pharmacy, or even a manufacturer changing the formulation of their medication.

[Kimberly]

in reply to: On ATD two years-plus? #1183805

Hello – The more common situation is for agranulocytosis to occur during the first 90 days of starting (or re-starting) antithyroid meds, but we have seen a handful of individual case studies where this situation developed years later.

As far as I know, the concern with longer-term use of PTU is with a specific complication called ANCA-positive vasculitis. It’s rare – and is more commonly reported in individuals of Asian ethnicity and in children, but it’s certainly something to be aware of.

Hopefully, you will get some responses. We have this thread “stuck”, so I will put in a reminder in the main section.

[Kimberly]

in reply to: High TSH, TSI & TPO– just trying to understand how these work together #1185849

Hello – TSI and TRAb are the two antibody tests that are specific to Graves’ disease. The TSI test is specific to the antibodies that cause *stimulation* of the thyroid in Graves’ disease, leading to hyperthyroidism. The TRAb test picks up both stimulating and blocking antibodies in Graves’ disease. (Blocking antibodies *can* sometimes cause hypOthyroidism in Graves’ patients).

TPOabs are tricker, as that is a “marker” for autoimmune thyroid disease. They are very common in Hashimoto’s Thyroiditis, but a certain percentage of Graves’ patients (even those who do not have HT) test positive for them.

Your doc will likely help you make your treatment decision based on your actual levels. If your TSH is too high, your Free T4 and T3 are too low, and you are having symptoms of hypO – your doc will likely recommend replacement hormone (Synthroid, Tirosint, generic levothyroxine, etc.).

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