Hey guys! I’m new to the forum! I was diagnosed with Graves’ disease about 3 years ago at the age of 18. I caught it relatively quickly so most of the symptoms didn’t last long. However, the 2 symptoms I can’t seem to escape are constantly being hot and being tired ALL the time no matter how much sleep I get.
I notice myself sweating more quickly than anyone around me and find feel like my body struggles to regulate my temperature at night so I wake up about 3 times a night.
I also get about 7-10 hours of sleep a night depending on the day and then will sleep for another 4-6 later in the day. I still find myself tired throughout the day even if I sleep 12 hours a night. I try not to nap because I know that disrupts sleeping schedules and creates bad sleeping habits.
I was wondering if you guys had any tips for staying awake during the day or staying cooler at night or during the day? Any advice is appreciated! 🙂

Hello

I had GD for 17 years treated with Carbimazole then PTU. I had some remissions in this time that lasted no more than a year or so at a time.

The PTU stopped working properly at the start of 2023 and I had a thyroid storm. I then received 600 Mbq of radioiodine treatment in July 2024.

At 3 months post RAI thyroid function was normal and goitre nicely shrunk. I had no anti-thyroid meds or replacement meds at all immediately following RAI. Endo stopped all meds completely.

By May ‘24, GD symptoms raging again, Dr was adamant that this was impossible and suggested that I must be drinking too much coffee or was suffering from anxiety not related to anything thyroid. Eventually persuaded her to do a thyroid function test! Obviously i was correct after living with GD for 17 years!

Consultant said that the RAI had failed as the GD relapse occurred more than 6 months post RAI and wanted me to receive another dose.

Was put on 30mg Carbimazole, reduced to 20mg. Goitre growing again.

Have just had consultation today and I am now hypothyroid a year later.

Consultant said that he doesn’t know if the Carbimazole dose was too much and this is the cause of going under.

Has anyone had an unusual thyroid pattern post RAI and what was the cause/outcome?

He has told me to stop the Carbimazole immediately, have bloods in a month and see where it’s at.

Thanks
Kerrie

Did you know that the GDATF hosts monthly Zoom support group meetings? We have a meeting tomorrow (Saturday, Aug. 10th) and there is currently space available. You can register using the link below. If you can’t make it but are interested in future meetings, reply to this message to be placed on our email list to receive future meeting notifications. (We’ll add the email that you used to register for this forum.)

https://us06web.zoom.us/meeting/register/tZckf-CprjMsHt3j1YU9itYcTi79XeFOwcsJ

Hi all! I’m Travis but you can call me T or Big T. I’ve had this disease for less than 2 years so I consider myself new to these issues. I’d love to hear from anyone and everyone about your symptoms and what you do to combat them. Graves and Hashimotos seems to not get much attention and I’ve had a helluva time finding this forum even. Please don’t be shy cuz I would love to talk to anyone that understands what I’m going thru. I’m really looking for anything at this point so I apologize for sounding desperate. But some days just feel like all will be, or is, lost.

Check out the GDATF’s new videos with updates on our TED survey, and let us know what you think!

How Patients Experience Thyroid Eye Disease: An Overview

Thyroid Eye Disease: New Results from a GDATF-Commissioned Patient Survey

Hello everyone,
I’m an old follower of this site. Its been so long I struggled with Graves. I had total tiroidectomy years ago. But the GED was still there.
You all know its nit easy to handle how you dont look like yourself anymore.
After like 10 years I finally had surgery for my retracted eye lid. Thankfully it went well and now one of my eye looks “normal”. The other one has low eye lid. My doc said till that surgery (we need to wait) I can use Upneeq eye drop. Apparently it retracts the eyelid temporarily (like daily).

Anyone here had any experience with it?
That eye drop is in USA only, so I’ll need to get it from there, and I would love to hear that it works good before getting it.

Thank you in advance 🙂🙏🏻

Learn about #thyroideyedisease from the people who know it best: the members of our patient community who live with this debilitating condition every day. Our survey on TED collected hundreds of comments. We read every single one, and we’ve organized them by category on our website in hopes of providing doctors, researchers, family members, friends, co-workers, and fellow patients a better understanding this complex, frustrating, debilitating, isolating, and painful condition. https://gdatf.org/resources/ted-survey-2022-2023/

BACKGROUND: In November 2023, Frontiers in Endocrinology published “How Patients Experience Thyroid Eye Disease”, which highlighted selected results from a GDATF-commissioned survey of the thyroid eye disease patient community. The published manuscript included a handful of quotes from the narrative survey responses. These comments are now available in full on our website, organized by category. This project was completed with a medical education grant from Amgen, Inc. (formerly Horizon Therapeutics).
Thank you to the clinicians who developed the original idea for a patient survey (Dr. Terry J. Smith, Dr. Laszlo Hegedüs, Dr. Ira Lesser, and Dr. Petros Perros) to Amgen, Inc. for supporting this project, to rareLife solutions for helping us bring this project to fruition, and to everyone who took the time to share their personal experiences with us. https://www.frontiersin.org/journals/endocrinology/articles/10.3389/fendo.2023.1283374/full

Hello – I’m feeling very alone in my thyroid disease journey and am excited to find this group.

I have a 3.5 year old who was born while my Grave’s was in remission. I had a TT in January of 2023 following my levels spiking after pregnancy.

I’m a year out from surgery and my TSH is where they doctor wants it to be but my T4 is high and gets higher with every lab test.

We’ve been trying to conceive for 5 months and I’m feeling very discouraged. I had hoped that having my thyroid removed would make conceiving easier this time around. I have an appt with my endocrinologist in a few weeks. What should I be asking?

Thank you,

This is not new, but my labs have been happening more frequently. I get labs every 2-6 months still after 13 years.

I have been trying to research for my upcoming Endocrinology appointment, but I’m not sure what to think right now. Has this ever happened to anyone else? What are the probable causes?

Any thoughts or recommendations would be incredibly helpful. Thank you for taking time to read and respond.

Hi, I am Dr. Nancy Patterson. I managed this forum for many years (before Social Media, etc.) I would like to see this revitalized. Please post and I will reply, and invite others to do the same.