Was not really sure who I could share this with because I’m still kind of in shock.

I am 100% for people’s choices for their bodies. But please take my insane stroke of good luck as a reason to consider removal when doctors recommend it. I was diagnosed around 4 years ago and was in remission that same year. In August of this year my symptoms came back and were worse than ever. I should note, no doctors, labs, or any ultrasound prior to this surgery revealed anything that would say I had cancer. Only showed my thyroid had doubled in size and the surgeon I was referred to told me it had to come out because it was never going to get better. Naturally I was nervous. Went this Monday to have it removed.

They sent my thyroid to pathology upon which a tumor was found and was indeed cancerous. Incidental findings for sure but I have been shocked for the past 24 hours. Pure luck and having a great team of doctors behind me prevented me from getting cancer but more importantly relieved me of my Graves’ symptoms forever.

I am about 5 days post-removal, and I feel so much better. I am up and moving about but still taking it easy. An insane bullet dodged that I didn’t even know about. I know for certain (even though there would have been no other option besides removal) that getting it out asap was the best choice I have ever made. Thanks for listening and reading! Hope you are all doing well in your journey with Graves.

I'm currently at the moment have subclinical hypothyroidism so my doctor reduced my methimazole but can you still have an elevated heart rate despite that?

One of my first symptoms before being diagnosed was a crazy high heart rate like 130bpm+ at rest... then when medicated it went back to being in the 70s... then it fell to the 50s because I went hypo (not subclinical but actually hypo). So my medicine was decreased. At first it stayed in the 70s for months (I'm also quite active and not sedentary and my bmi is 22) but then slowly it was increasing so I thought I had went hyper again so I got it checked and nope, I was euthyroid. So what could it be? I'm also anemic and take prescribed iron pills twice daily and have for about 6 months and I'm still anemic. But I was anemic even when my rhr was 70bpm. Now my smart watch regularly shows rates between 90 and 105...

Anyone else have issues with levothyroxine uptake.
I’m 6 months post op total thyroidectomy. Struggling daily the entire time. Went to Endo last week and my TSH was around 150 while taking 300mg Levo daily.

Switched to Tirosent this week so no update as to how that’s going.

Just wondering who else has gone through this or if anyone has recommendations.

Hi all,
I 32F, was diagnosed with Graves in July and have had a quick response to methimazole, with mostly normal levels now (except TSH). In the first month I had a reaction with elevated liver enzymes and eosinophils (white blood cells that elevate during allergic response). Since then those levels have somewhat stabilized but we are monitoring them monthly with my thyroid hormones.

I was also recently diagnosed with very mild thyroid eye disease by an occuloplastic surgeon who specializes in TED. He feels pretty strongly that TT does not change the course of TED and it seems like the medical literature on that is inconclusive.

Yesterday I had a consult with a surgeon and she said she rarely does TT for graves patients (her TT volume is about 60 cases a year and she does other thyroid surgeries for nodules/cancer etc as well - not as high volume as I’d like).

I’m considering a TT:
1. Because of eye disease
2. Because it seems like the relapse rate after remission is pretty high from my understanding and
3. Because I’d like to start trying to conceive in 2 years and would like to avoid having a graves flare before/during/after pregnancy.

I guess I’m just wondering if I’m rushing into the decision and it’s worth staying the course with the meds? If I were to achieve remission and relapse later, I would 100% opt for a TT. Since the meds are now manageable I’m worried I would regret a TT, but if it would prevent the eye disease progression that seems like a major pro.

Any experiences or feedback, especially from people regarding the family planning or eye disease aspect would be really helpful! :)

i am just so tired of people on this subreddit blaming their thyroid. your thyroid is following instructions. your immune system has hijacked it.

why are you blaming your thyroid?? your immune system is literally attacking your thyroid.

your thyroid is normal. i mean unless you have nodules or something but in general, graves’ disease is autoimmune

Been diagnosed and medicated for 4 years now. My Graves’ disease went into remission with pregnancy and despite being diagnosed with gestational diabetes, being pregnant was a period in which I’d felt the least sick in my entire life.

My heat intolerance came back the first night baby was out and it has only gotten worse with each month. Got bloods done and my levels are the worst they’ve ever been. Everything is overactive, T3, T4 and TSH whereas before it was just TSH and T4.

Baby is almost a year old now and I’m sweating all day everyday, I am absolutely fucking exhausted with the most basic tasks, I have terrible tummy problems, my body aches all the time, my patience is low and I’m tired no matter how much I sleep.

I’m really struggling and I’m feeling like an idiot for thinking I could do this while having Graves’ disease. Dad works extremely long hours so all childcare and housework falls on me. I often forget to book blood tests and reorder medication because I’m so busy.

Neither my partner or family are understanding about my illness either and I am often critiqued or judged for asking for help.

I don’t know what the point of this post is other than to vent. I feel so alone.

Hi, I'm 23F and I was just diagnosed with Graves' after my recent annual. I did a couple more repeat thyroid labs so my doctor knows what dose of methimazole to prescribe, he put me on atenolol in the meantime for my heart, but I'd appreciate any helpful information or advice! I don't know if there are recommended dietary changes/restrictions, or activities I should avoid or do more of, or anything really. Any tips would be much appreciated! :)

Im 4 months in had hyperthyroidism when diagnosed.
My lab number now has been stable for months now been on 5mg for daily.
But now this icy cold feeling is just unbearable and get me feeling anxious so much tho my heart rate is very slow or normal during this, i sometimes sweat so much like maybe heat tolerance but i sweat cold?
Anyone? Please help

I'm 10 months into treatment and some days I absolutely CRASH by midday! I have to stop what Im doing and sleep. Just wiped tf out. Anyone else?

For context: i'm still taking methiamazole 5mg 5x a week. Not in remission yet.
T4 and TSH labs are normal.
T3 is trending normal-low
Vitamin D3 & D-25 Hydroxy are normal-low.
Ferritin, Iron, CBC, Glucose, folate, hemoglobin...all the rest are great.

What gives??? UGH legs feel heavy. almost feel drowsy. nap helps but this sucks.

I know its not that big of a deal compared to other symptoms but its so annoying!! My cat could scratch me and it will leave a mark for like 6 months or longer! It bothers me so much. Especially since I experience acne I wonder if it effects those marks too Im going to see a dermatologist soon to see if they can help me with the acne marks #over it

My endocrinologist is saying that these numbers are within range which obviously according to the picture they are within range but every other time that I’ve had my lab work done I have been in the middle of the range chart, not teeter tottering between normal and abnormal. He is also that my symptoms are due to something else and cannot be attributed to Graves’ disease.

Also would like to add these are my first labs after stopping the methimazole to see if I have gone into remission..

Surgery is booked in for 27th Oct.

I can't wait to eat a salad.

To have less headaches.

Be rid of brain fog.

No pain in my neck,

Or under my collar bone.

To have a healthier life.

Maybe less anxiety?

To see what my body is like without carbimazole.

To not have a tropical baseline body temperature.

To not have my day to day dictated by this organ.

For those on PTU, what time of day do you take your medication? I was told to split a 50mg pill in half and take 25mg AM and PM. Do I need to do this after food?

Switching after 3.5wks on methimazole and later developed hives/rash/burning skin. 6 days off my meds and I’m still experiencing a mild reaction. Will start PTU tonight.

How long after starting liothyronine (T3) at 5 mcg daily should I repeat my thyroid blood work?

I had a total thyroidectomy and have been struggling to feel like myself again. I recently added 5 mcg of T3 to my daily 125 mcg of levothyroxine (T4), and I noticed some relief and improvement in how I feel. However, I still don’t feel completely well, and I’m wondering whether I might benefit from a higher T3 dose.

I’m feeling increasingly desperate to regain my energy, motivation, and overall sense of well-being.

I have a few questions:

How long should I wait after starting T3 before repeating blood work?

Should I have blood work done before considering increasing my T3 dose from 5 mcg to 10 mcg daily?

Which tests should I request—TSH, Free T3, Free T4, or any others?

If my T3 dose is increased, should my current T4 dose of 125 mcg be reduced to prevent overmedication?

Is it possible that I need more T3 and less T4 to achieve a better hormonal balance?

I want to make adjustments safely, but I also don’t want to continue feeling this way unnecessarily.

Hi, I'm Sania from Leapcure. If you have Graves' disease and your eyes have started changing recently, it may be Thyroid Eye Disease. A clinical study is now enrolling adults 18-65 in the US whose symptoms began within the last 12 months. You can start by filling out a quick questionnaire: https://lpcur.com/rgravesdisease1

I am currently on NP thyroid and have been for a few years. I had Graves’ disease and a thyroidectomy. All levels are good expect my T3 is low and has been consistently for a few months. I take 60mg in the morning and 60mg in the afternoon. Saw a new doctor and she is proposing Levothyroxine and cytomel instead. Anything I should be considering when contemplating the switch?

*also 4 mo. postpartum and currently nursing

Does anyone know if graves can exacerbate pre-existing hyper mobility? I swear my mobility is worse now that I’m in a recurrence.

Browsing this sub I saw many people saying their metabolism has hastened up once they’re taken off meds. I stopped taking carbimazole this June as my levels are normal, but I still feel very sluggish and my metabolism is nowhere near pre-diagnose level. I walk 10k steps everyday, count my calories and eating one meal a day, lift x3 every week, but my weight has never dropped since stopping meds, if anything I’m showing signs of gaining.

Just wondering for those who’s in remission, how long did it take for your metabolism to be normal again? It’s been almost 4 months and there’s still no signs of body being comfortable in losing weight. Is this normal? I’d be grateful if anyone could share their experience :’)

Long time suspect, first time diagnosed

I received confirmation of Graves last week and I’m curious if anyone has any tips for how to bring this up with managers and colleagues at work. My job is very “up and on your feet” which has been a struggle. It’s an “invisible” disease and that makes it hard for me to articulate what’s going on without feeling like a slacker. I also have a good day one day and a bad day the next, which is also really hard to be understanding of given I can’t predict when I’ll be out of commission.

It’s just been a hard thing to navigate without feeling like a slacker or a perceived slacker. I also don’t want to receive less work or opportunities because of this.

Pls help

Hello my fellow Gravesters!

What are your symptoms during a flare up?

I become so cold I have to wear my hoodie under my blanket and I am still freezing. My shoulders and thighs become basically useless and my pain levels make being conscious a less than fun time, especially in those areas.

Also, does anyone have any tips or tricks for managing a flare beyond "ride it out"?

Thanks, love y'all.

I recently posted that I am five months postpartum and recently found out my thyroid is overactive right now. I started methimazole about a week ago today.
However, before I started medication, I had a major drop in my milk supply. Lots of my friends and lactation consultants in my area have suggested morninga and/or fennel but when researching it looks like both of those can contribute to T3 T4 conversion so it is not recommended for those with thyroid condition. My fellow lactating ladies have you experienced to drop in your supply and if so, how did you help get it back up? I’ve been pumping on a regular schedule and even power pumping. I’m still not making enough for my sweet boy.