[Kimberly]

in reply to: (Update) CDC Webinar on COVID-19 and Autoimmunity #1185710

The info above was from a general CDC briefing. The video in the link below is specific to Graves’. We are still learning about COVID-19, but in general, the understanding is that you don’t have an additional risk *just* from having Graves’ disease. However, if you are on immunosuppressive therapy (for example, taking a medication like Prednisone) for thyroid eye disease or for another autoimmune disease, that *does* come with additional risk.

[Kimberly]

in reply to: Two New Events – ATA Virtual Patient Forum (11/14) and ATA/AAES Tweet Chat (11/16) #1185847

If you missed last night’s Tweet Chat, you can still catch up on the conversation by logging in to Twitter and searching for hashtag #thyroidchat! Many thanks to all the endocrinologists and endocrine surgeons who participated and shared their expertise!

[Kimberly]

in reply to: Two New Events – ATA Virtual Patient Forum (11/14) and ATA/AAES Tweet Chat (11/16) #1185846

We got great feedback on Saturday’s virtual patient forum with the ATA Alliance for Patient education! Hopefully, this is a tradition that will continue!

A reminder that the Tweet Chat is tonight (Monday)! Details below:

On Monday, Nov. 16th, the American Thyroid Association, American Association of Endocrine Surgeons, and GDATF will host a Tweet Chat starting at 8 p.m EST / 5 p.m. PST. To participate, log in to Twitter and use the hashtag #thyroidchat.

[Kimberly]

in reply to: Covid 19 and Graves #1185844

Jumping on a call shortly, but will dig into that piece. We’ve not heard any ophthalmologists require isolation for their TED patients, although certainly immunosuppressive therapy is cause for caution.

This piece from the American Thyroid Association & Medscape painted a more optimistic picture of COVID and Graves’. (Login might be required, but registration should be free.) https://www.medscape.com/viewarticle/938753?fbclid=IwAR2jBnHJar6kQE0_TLcTbrt1gAWmVf-xA08oPlHEiKE1O-K2d-E1pdtej4s#vp_2

“There is no evidence to date that patients with existing autoimmune thyroid disease are more susceptible to contracting viral illnesses, including infection with SARS-CoV-2, or that they are at higher risk of developing more severe COVID-19 disease.”

[Kimberly]

in reply to: Webinar on Thyroid Eye Disease (Update: Now Available on YouTube!) #1185838

If you missed our webinar on Thyroid Eye Disease, the program is now available on our YouTube channel! Huge thanks to Dr. Don Kikkawa, Dr. Kyle Godfrey, Dr. Suzanne Freitag, Dr. Bradford Lee, and to our special guest Carl for sharing his personal experience with TED. https://youtu.be/WsjpFAPyjaE

[Kimberly]

in reply to: How to tell if I also have Hashimoto’s? #1185842

Hello – We’re fellow patients and aren’t allowed to interpret labs, but here is some general info that will hopefully be of interest.

TPOab and TGab are “markers” 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.

I would really encourage you to get a hard copy of your labs, so you can see where your levels are compared to the lab’s “normal” reference ranges – and keep track of them over time. Different labs can use different “normal” ranges, so the actual numbers are only useful in the context of your specific lab’s range. Are your levels right in the middle? At the upper end? The lower end?

How are you feeling? Symptoms of hypOthyroidism can include can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

[Kimberly]

in reply to: Elevated TSH Receptor Ab #1185840

Hello – My understanding is that TRAb measures both blocking and stimulating antibodies in Graves’ disease. Your doctor will likely not initiate treatment unless you go hyper (high T3/T4, low TSH) or hypo (low T3/T4, high TSH). (Or possibly if TSH goes out of range *and* you feel symptomatic.) It’s a super frustrating waiting game, but it sounds like your doctor is keeping close tabs on your levels and your antibodies.

[Kimberly]

in reply to: Webinar on Thyroid Eye Disease (Update: Now Available on YouTube!) #1185837

There’s still time to register for our Thyroid Eye Disease webinar tomorrow (Saturday) at 11a EDT / 8a PDT! You can find the speaker list and registration form here: https://zoom.us/webinar/register/WN_H7SJdtCVT2ymb9PU4t3MHg

[Kimberly]

in reply to: Tsh .06 anyone else have this with normal T4 #1185829

Just a note that the doctors who have presented at our past conferences *do* recommend getting the flu shot.

[Kimberly]

in reply to: Tsh .06 anyone else have this with normal T4 #1185828

Just a note that the doctors who have presented at our past conferences *do* recommend getting the flu shot.

[Kimberly]

in reply to: 3RD TIME #1185834

Hello – Hopefully, you’ll get some responses here, but you might also check our our Facebook group @GDATF or onegravesvoice.com.

My understanding is that it’s rare for TED to recur, but it can happen, particularly with exposure to smoking/second-hand smoke and also with stress.

If the doctor who did your original surgery is still practicing, hopefully, you can get back in – as it would be helpful to get an evaluation done.

[Kimberly]

in reply to: Ref: Graves eye disease light sensitivity #1185831

Hello – I wish we had better treatment options for light sensitivity. In the meantime, good sunglasses can provide some relief – preferably a wrap-around style. A ball cap or other hat with a wide brim can be helpful when outside as well.

[Kimberly]

in reply to: Tsh .06 anyone else have this with normal T4 #1185826

Hello and welcome – I’ve not seen any research that the flu vaccine suppresses TSH. Is your doctor planning to do follow up labs? If you have normal T3/T4 with suppressed TSH, that’s referred to as “subclinical hyperthyroidism”. It’s usually a “watch and wait” situation to see if T3/T4 go out of range as well. The exception is that your doc might recommend treatment if you are having hypER symtpoms or if you are at high risk for bone loss or heart problems.

[Kimberly]

in reply to: Dealing With Depression After Thyroidectomy #1185819

Hello and welcome. Sorry to hear that you are going through this, but glad that you found us. Sometimes, thyroid imbalance can mimic symptoms of depression/anxiety, but in other cases, there *can* be another underlying condition that can benefit from separate treatment. This video is one of our most popular – The Emotional Impact of Graves’ Disease – and will hopefully be of interest. Perhaps your doc and psychologist would be interested as well.

https://www.youtube.com/watch?v=CB8_5rbCso8&t=2s

Testing TSH alone is great for patients who are stable and feeling well, but since you are still symptomatic, it might be helpful to get a read on your T3/T4 as well, just to see where those are.

[Kimberly]

in reply to: Treatment with Tepezza #1185780

@NikkiL – The first step would be to contact your ophthalmologist to determine if TEPEZZA (TM) is a good option for you. From there, you can contact your insurance company, and if needed, there are patient assistance programs that your doctor can connect you with.

If your double vision is not too bad – and if it isn’t getting better or worse from day to day, eyeglass prisms might be an option.

[Author]

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