[Kimberly]

in reply to: Orbital Decompression #1185029

Hello – You got some great insight from Liz1967. The only thing I would add is that one way to tell if you are experiencing optic nerve involvement is to check how you are perceiving colors. If you take something that you KNOW is red, like a can of Coke or a favorite t-shirt, and it starts looking off (for example, more brown), that is definitely a sign that you need to take action soon.

You definitely want to be comfortable with your surgeon – so even if you have to travel, it might be worth your time to travel for a second opinion.

Take care!

[Kimberly]

in reply to: Are You Interested in a Support Group Meeting in Austin, TX? #1184983

@tajkoont – We don’t currently have a support group near Indiana, but if you might be interested in starting one (it’s especially helpful if you have an endocrinologist, ophthalmologist, endocrine surgeon, etc. who would be willing to help), let us know, and we can walk you through the application process!

You can reach us at info@gdatf.org or at 877-643-3123.

[Kimberly]

in reply to: The thyroid, the eyes and the gut #1185024

Wow, definitely an interesting line of inquiry – thanks for posting!

[Kimberly]

in reply to: Symptoms lag behind tsh and Free T4 #1185010

@normandy – it can take a few weeks to know if a particular dose is right for you, but personally, I notice a change within a few days when my replacement hormone is increased.

I’m sorry that your symptoms are keeping you from work and clearly affecting your quality of life. If you don’t feel that your current regimen with the Prozac is effective, don’t be afraid to seek out a second opinion.

One other thought would be to check Free T4 and T3, if your doctor isn’t already doing that. TSH alone is fine for those who are stable and feeling well, but this additional info might help shed some light on what’s going on since you are clearly having symptoms.

Hope you can get some relief soon!

[Kimberly]

in reply to: GD with TED #1184543

Great news, mojon – so glad that the OD went well and that you’ve found someone with a lot of experience in doing the strabismus surgery!

[Kimberly]

in reply to: Kids with Graves Disease #1185022

Hello and welcome – Graves’ is much more rare in children than adults, but that is AWFUL that the school isn’t recognizing this as a serious condition. I’m including a couple of links below, but check out the “Students and Graves'” bulletin first. The school needs to set up an Individualized Education Plan to address your daughter’s needs while she is being treated. To not let her use the restroom as needed is just flat out cruel.

Wishing you and your daughter all the best!

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Students and Graves’:
http://gdatf.org/about/about-graves-disease/patient-education/students-graves/

GDATF YouTube Channel:
(look for videos from Dr. Scott Rivkees and Dr. Michael Gottschalk, as well as the playlist of the Children’s Hospital of Philadelphia seminar):

https://www.youtube.com/user/GravesAndThyroid/videos

https://www.youtube.com/user/GravesAndThyroid/playlists

[Kimberly]

in reply to: American Assoc. of Endocrine Surgeons Members to Answer Questions About Thyroidectomy! #1184973

We’ve started posting responses from the surgeons at the American Association of Endocrine Surgeons meeting that was held earlier this month!

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/playlist?list=PLkmq2Wfl__LMbsg2vL3OEJuEmbu7AMX_W

More will be added in the coming weeks!

[Kimberly]

in reply to: Living with husband with Graves dx… #1185016

Hello and welcome – we are fellow patients here, not doctors, but here are a few thoughts…

Thyroid dysfunction can absolutely cause emotional issues — but if you ever get to a point where you feel like you or a family member is in danger, don’t hesitate to remove yourself from the situation or call authorities if needed.

Usually, patients will see relief once thyroid levels become normal and stable, so hopefully, your husband is receiving excellent care and is being consistent with his medication regimen.

If your husband is willing, a visit with a family counselor might be helpful.

Also, following are a couple of resources that will hopefully be of interest:

GDATF Patient Bulletin – “What’s Wrong With Me – I’m Not Myself Anymore?”
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

GDATF Conference Video – “The Emotional Aspects of Graves’ Disease” from Dr. Ira Lesser
https://www.youtube.com/watch?v=CB8_5rbCso8&t=18s

Wishing you and your husband all the best – please take care and keep us posted.

[Kimberly]

in reply to: Login Issues? Try Clearing Your Browser History and Restart #1184868

bumping…had some issues tonight, but clearing browsing history fixed it…

[Kimberly]

in reply to: Are You Interested in a Support Group Meeting in Austin, TX? #1184981

So far, I have an email list with several people who are interested in a support group meeting in Austin, TX on May 4th or 5th.

Please email info@gdatf.org if you would like to be added to the list for updates.

Also, if you are familiar with the Austin area, do you have any suggestions for a meeting spot (like a coffee shop or library) that is near the convention center and has seating for 8-10 and good parking? I am hoping to get the location nailed down soon.

Thanks so much!

[Kimberly]

in reply to: dealing with Graves disease symptoms #1184967

Hello and welcome – wow, you’ve had a number of issues to deal with all at the same time! We are fellow patients here, not doctors, but did you go on replacement hormone following the RAI? If so, the combination of your symptoms and your TSH (my own doc likes to see mine stay between 1 & 2) might indicate the need for a dose adjustment. And if not, the labs might mean that you are finally starting to head hypO.

Remember that TSH moves in the opposite direction of T3/T4 – so *above* normal TSH is associated with hypO and below normal TSH with hypER.

You might consider calling your endo’s office to see if they can put you on a cancellation list – or if they would be willing to do a telephone consult, since you have your lab results already available.

Take care – and keep us posted!

[Kimberly]

in reply to: dealing with Graves disease symptoms #1184965

Hello and welcome – Hopefully, your doctor has ordered testing that will help diagnose Graves’ vs. thyroiditis (for example, antibody tests or an uptake scan), as that will determine what your treatment options are. Definitely ask for a hard copy of your lab results – it’s good to get that *before* you speak to the doctor, so that you can formulate some questions in advance. Even better if you can see the doctor in person, rather than trying to process everything over the phone.

Take care – and please keep us posted!

[Kimberly]

in reply to: Experience taking Synthroid and Methimazole #1185014

Hello and welcome – We are fellow patients here, not docs, but I’ve not heard of patients in the U.S. being started on both Synthroid and Methimazole right after diagnosis (or relapse). For patients who are having difficulty getting stabilized on antithyroid meds (ATDs) like methimazole (particularly children), docs can give the patient a consistent dose of ATDs, and then supplement with a small amount of thyroid hormone replacement as needed to make sure the patient doesn’t go hypO. This is a modified version of a therapy called “block & replace” that has been successful in Japan, that involves large doses of ATDs supplemented by thyroid hormone replacement, but the results have not been as good elsewhere. I would definitely ask your doc about the rationale behind the Synthroid.

I know from personal experience that the weight issues can be very frustrating. We’ve heard from patients who have used various dietary approaches (vegan, gluten-free, paleo, anti-inflammatory, low iodine, eliminating food sensitivities), but there just isn’t a lot of good research to determine if one of these approaches is better than the others for Graves’.

I tried a fairly restrictive diet when I was first diagnosed (no gluten, dairy, eggs, soy, sugar), and honestly, it stressed me out more than it helped. For example, eating out at a restaurant or dining at someone’s home becomes a huge struggle to find something you can eat. But if you find a dietary program that makes you feel great (and that gives you all the nutrients you need), go for it.

Hopefully, someone will chime in on raw vegan – I believe that AZGravesGuy tried vegan at one point.

Another issue to keep in mind is that the latest medical guidance recommends testing antibodies (TSI, TRAb) prior to withdrawing antithyroid meds. The rationale behind that is that if your antibodies are still raging, even if you are euthyroid at that moment, your hyperthyroidism is likely to recur.

Take care – and keep us posted on how you are doing!

[Kimberly]

in reply to: Are You Interested in a Support Group Meeting in Austin, TX? #1184979

@Klassey – Sorry we were not able to connect; I am back home now. I love FL, so would love to set something up if I make it back there again!

[Kimberly]

in reply to: Symptoms lag behind tsh and Free T4 #1185005

@Flora – love your wrestling analogy!

@Susan – Agree with your doc that it can take some time for symptoms to correct themselves once you have finally stabilized your dose. If some time has gone by, it might be helpful to document the exact symptoms and run them past your primary care provider to see if he/she can shed some additional light.

That’s good that you know your body and know that you need to take dose changes gradually. I always responded VERY quickly to small dose changes of methimazole, and now still respond fairly quickly to adjustments of thyroid hormone replacement.

[Author]

Posts