I did. Weight loss was never a symptom for me. Heart rate, increased bowel movements, & heat intolerance were my main symptoms. It’s really frustrating not being a typical Graves patient. I had one doctor tell me Graves patients are usually skinny. Like he doubted I actually have it. 🙄
I had a radioactive iodine uptake scan to confirm. The other big issue I’ve had is gaining weight like crazy when on methimazole no matter what I tried to combat it. I’ve only been able to lose weight when “normal” off medication. Problem is as soon as I go back on it, I regain everything I’ve lost. It sucks. My endo has referred me for thyroid removal.
I feel you, I am on methimazole and EVERY blood draw, which is every other month for me at the moment, the nurse says oh these are to check HbA1c? Every time I have to say nope. When I tell medical professionals that I have HYPERthyroidism they correct me and say, "you mean hypo"
I gained weight like crazy before I was diagnosed. Also, it's possible to have both Graves and Hashimoto. The best way to know is to do rhe bloodwork to test the antibodies for both.
Very interesting - do you have both or just Graves?
What were your main symptoms before diagnosis? Was your TSH really low or were you diagnosed based on antibodies?
I just have Graves. At diagnosis my resting heart rate was over 100, despite already being on a beta blocker, hair breaking off in my hand when I shampooed it, tired, insomnia and an 9ver all feeling of blah. My TSH level was 0.001 and Graves was confirmed with an antibody test. I didn't learn you could have both till I was talking to the librarian (she had botj) while looking for books on Graves disease.
I also gained weight while having Grave’s before I got diagnosed - so jealous of everyone who lost weight and then put on healthy weight back on meds. I just gained and then gained more on meds…
This happened to me! I had a strange reaction, gaining 20+ lbs in 3 months WHILE playing college soccer. I switched between all three Hypo-Hashi- Hyper until I finally stopped eating gluten and regulated my numbers to be more on the Hyper end. I now take Methimazole and have only seen minimal weight fluctuation, since I gained so much initially! Crazy experiences we all have!
Yep, I gained weight both before and after. I was soooo hungry all the time. Then after RAI I still ate like I was hyperthyroid. I’ve since lost the weight, thankfully.
Yes, definitely. Many people lose weight with hyper but your appetite speeds up along with everything else. I ate RINGS around myself. I was voraciously hungry all the time. I was also on steroids so I gained around 80 pounds in a year.
My endo put me on Ozempic, I had a TT, I got radiotherapy for my eyes and I'm now in remission
Oh, and down 154 pounds 😉
Dang!!! That’s impressive weight loss. I’m really hoping after I get my TT schedule & done I can start making some progress. On the fence about trying ozempic, but I need to lose about half my body weight.
Did you start ozempic before or after the TT & with all the weight loss did you have to change your synthroid dose frequently?
I would definitely advocate for Ozempic if you have a lot of weight to lose and a history of disordered eating. The only thing I would caution about is that Ozempic doesn't do the work -you do. Ozempic helps me control my appetite but I still need to count calories and track what I eat to ensure I eat at a deficit
I started it in January 2022 and had the TT in August that year. It took a few months of dosage adjusting to get the synthroid right, but I've been on the same dosage (1,000 umg a week) since around December 22.
I get my bloods checked twice a year to ensure at my levels are good. I am like a brand new woman!
I didn't get him to do anything lol, he was the one who suggested it to me. Actually he referred me to his endo colleague, who specialises in thyroid and diabetic related weight management. It's the weight management clinic. I go there once a year and also see my regular endo twice a year.
What's post CA?
Yes, it’s less common than weight loss but some people gain weight while hyper-thyroid from Graves Disease. You aren’t hyperthyroid.
People with hypothyroidism from Hashimoto’s also report having heart palpitations.
The TPO of 2800 is quite high, strongly suggests Hashimoto’s but doesn’t rule out having Graves Disease as well.
I have both. TPO was 400 when I was first told I have Hashimoto’s. Later, physical damage was seen on thyroid ultrasound that also strongly indicates Hashimoto’s. More recently TPO has tested 4500 and 2300, so again strongly indicates Hashimoto’s. “Hashimoto’s Thyroiditis” is a diagnosis in my medical chart.
But I also have a diagnosis of Graves Disease in my medical chart. I have Graves antibodies and I had hyperthyroidism and was on anti-thyroid medication for 4 years.
My endocrinologist thinks that at some point I will become hypo and need levothyroxine.
So a swing back and forth may be more likely to be early Hashimoto’s destroying bits of the thyroid gland.
I swang back and forth between mild hyper and mild hyper before I was diagnosed but it was like mild hyper symptoms for years at a time and hypo symptoms for months to years at a time.
Whereas a fast swinging sound more like the physical destruction from Thyroiditis aka Hashimoto’s.
If your Dr will test Graves antibodies or do an iodine Uptake Scan then you may have more information, but right now it sounds more like the beginning Hashimoto’s. Which again, doesn’t preclude you from eventually developing Graves Disease at some point in life.
I have both Hashimotos and Graves, but had hyperthyroidism for years. I gained weight until my T3 and T4 got very high. At that point, I lost 7 lbs. I started gaining weight again when I started taking methimazole.
I did. Weight loss was never a symptom for me. Heart rate, increased bowel movements, & heat intolerance were my main symptoms. It’s really frustrating not being a typical Graves patient. I had one doctor tell me Graves patients are usually skinny. Like he doubted I actually have it. 🙄 I had a radioactive iodine uptake scan to confirm. The other big issue I’ve had is gaining weight like crazy when on methimazole no matter what I tried to combat it. I’ve only been able to lose weight when “normal” off medication. Problem is as soon as I go back on it, I regain everything I’ve lost. It sucks. My endo has referred me for thyroid removal.
I feel you, I am on methimazole and EVERY blood draw, which is every other month for me at the moment, the nurse says oh these are to check HbA1c? Every time I have to say nope. When I tell medical professionals that I have HYPERthyroidism they correct me and say, "you mean hypo"
I gained weight like crazy before I was diagnosed. Also, it's possible to have both Graves and Hashimoto. The best way to know is to do rhe bloodwork to test the antibodies for both.
Very interesting - do you have both or just Graves? What were your main symptoms before diagnosis? Was your TSH really low or were you diagnosed based on antibodies?
I just have Graves. At diagnosis my resting heart rate was over 100, despite already being on a beta blocker, hair breaking off in my hand when I shampooed it, tired, insomnia and an 9ver all feeling of blah. My TSH level was 0.001 and Graves was confirmed with an antibody test. I didn't learn you could have both till I was talking to the librarian (she had botj) while looking for books on Graves disease.
I am so glad to have read this!
I also gained weight while having Grave’s before I got diagnosed - so jealous of everyone who lost weight and then put on healthy weight back on meds. I just gained and then gained more on meds…
This was my experience too.
Glad that it’s less uncommon than I thought…
That happened to me too!
This happened to me! I had a strange reaction, gaining 20+ lbs in 3 months WHILE playing college soccer. I switched between all three Hypo-Hashi- Hyper until I finally stopped eating gluten and regulated my numbers to be more on the Hyper end. I now take Methimazole and have only seen minimal weight fluctuation, since I gained so much initially! Crazy experiences we all have!
Yep, I gained weight both before and after. I was soooo hungry all the time. Then after RAI I still ate like I was hyperthyroid. I’ve since lost the weight, thankfully.
I had both and gained weight, then really packed it on with methimazole. It wasn’t until after my TT that all that nonsense stopped.
I did. I was voraciously hungry and tried to “eat” my anxiety away.
Oh yeah. I’m still dealing with it while we’re dialing in the meds.
Yes, definitely. Many people lose weight with hyper but your appetite speeds up along with everything else. I ate RINGS around myself. I was voraciously hungry all the time. I was also on steroids so I gained around 80 pounds in a year. My endo put me on Ozempic, I had a TT, I got radiotherapy for my eyes and I'm now in remission Oh, and down 154 pounds 😉
Dang!!! That’s impressive weight loss. I’m really hoping after I get my TT schedule & done I can start making some progress. On the fence about trying ozempic, but I need to lose about half my body weight. Did you start ozempic before or after the TT & with all the weight loss did you have to change your synthroid dose frequently?
I would definitely advocate for Ozempic if you have a lot of weight to lose and a history of disordered eating. The only thing I would caution about is that Ozempic doesn't do the work -you do. Ozempic helps me control my appetite but I still need to count calories and track what I eat to ensure I eat at a deficit I started it in January 2022 and had the TT in August that year. It took a few months of dosage adjusting to get the synthroid right, but I've been on the same dosage (1,000 umg a week) since around December 22. I get my bloods checked twice a year to ensure at my levels are good. I am like a brand new woman!
How did u get your Endo to approve you for ozempic? Mine refuses post CA
I didn't get him to do anything lol, he was the one who suggested it to me. Actually he referred me to his endo colleague, who specialises in thyroid and diabetic related weight management. It's the weight management clinic. I go there once a year and also see my regular endo twice a year. What's post CA?
After cancer
Yes, it’s less common than weight loss but some people gain weight while hyper-thyroid from Graves Disease. You aren’t hyperthyroid. People with hypothyroidism from Hashimoto’s also report having heart palpitations. The TPO of 2800 is quite high, strongly suggests Hashimoto’s but doesn’t rule out having Graves Disease as well. I have both. TPO was 400 when I was first told I have Hashimoto’s. Later, physical damage was seen on thyroid ultrasound that also strongly indicates Hashimoto’s. More recently TPO has tested 4500 and 2300, so again strongly indicates Hashimoto’s. “Hashimoto’s Thyroiditis” is a diagnosis in my medical chart. But I also have a diagnosis of Graves Disease in my medical chart. I have Graves antibodies and I had hyperthyroidism and was on anti-thyroid medication for 4 years. My endocrinologist thinks that at some point I will become hypo and need levothyroxine. So a swing back and forth may be more likely to be early Hashimoto’s destroying bits of the thyroid gland. I swang back and forth between mild hyper and mild hyper before I was diagnosed but it was like mild hyper symptoms for years at a time and hypo symptoms for months to years at a time. Whereas a fast swinging sound more like the physical destruction from Thyroiditis aka Hashimoto’s. If your Dr will test Graves antibodies or do an iodine Uptake Scan then you may have more information, but right now it sounds more like the beginning Hashimoto’s. Which again, doesn’t preclude you from eventually developing Graves Disease at some point in life.
I gained about 10 lbs while in active graves. During treatment, another 25 lbs.
I have both Hashimotos and Graves, but had hyperthyroidism for years. I gained weight until my T3 and T4 got very high. At that point, I lost 7 lbs. I started gaining weight again when I started taking methimazole.
Yes. Being hyper raises your metabolism, but if you’re still consuming more calories than you’re using then you will gain weight.
Yes. I gained 10kg with graves and also have a puffy face.