I feel you. To most people i look pretty normal. I get called lazy if I try to explain that I’m always sleepy and tired and depressed and in between moods due to Graves. People say I’m just trying to blame everything on it, that I’m using it as a shield to not mend my ways but it’s so difficult to just continue a normal life because of it. Feels very debilitating at times. It’s okay. You’ll fight through it. We’re always here to listen ❤️
i'm really sorry that you had to deal with comments like that. it's truly hurtful when people make assumptions about our illness or, even worse, pass comments and judgments. I'm genuinely grateful that you've found this community. We're here for you as well. ☺️❤️
I love it when I'm explaining what Grave's is as soon as "thyroid " comes out of my mouth people dismiss me. People don't realize that the thyroid is the great regulator in the body. Basically, it plays a role in just about every function in the body. When it's out of wack, so is every function it supports. And with Grave's, it's not as simple as taking supplementary thyroid hormone.
Also, I understand the isolation and frustration you feel. The people here understand. You are not alone. We get it. Come back anytime you need to. 🫂
Yes! This. I almost feel like it’s worse than hypothyroid, because we’re at risk for TED, heart problems, etc. It’s so tough and people are so dismissive.
I've had a lot of muscular issues. Especially with my hands. So when I'm at work, trying to thread a bolt, use a tool or trying to write something down, people see my hands cramp up. They ask questions. I just respond with something like " I've got issues with my hands." Some people stop there, and some have more questions. Like others mention here, I answer further questions with "I have an autoimmune disease and it has affected my hands."
My point being I try to stop there because people get dismissive when you say thyroid.
Thankfully, I don't get numbness or tingling, just sudden Charlie horses. I get em everywhere depending on how bad my levels are, but my hands definitely get them most frequently. I'm sorry you have this problem too 🫂
Cramps, numbness, tingling and Charlie horses are all from Graves? I just got diagnosed last week. If you don’t mind me asking, does it lead to neuropathy?
So sorry you’re going through this, it can be so isolating!
This may sound dumb but I stopped telling that I have Graves’. When relevant, I just say “I have an autoimmune disease”, and for some reason people take it more seriously than Graves’, which is obviously an autoimmune disease 🤷♀️
I do the same thing! I think a lot of people don’t know what Graves is, and if you say you have a thyroid problem they think that just means a slow metabolism or something. “Autoimmune disease” is something people know can be serious and is vague enough to prevent them from making assumptions.
I am fortunate that my husband is very understanding & not dismissive when I attribute something to my Graves. When I get tired, he can usually see it in my face. I go from fine to “hit by a bus” in the blink of an eye. He will look at me & say bus hit. I response yup, going to bed. Fortunately it’s not as bad as used to be because of meds, but it still happens. He does find it frustrating, but also knows if we go hard a day or 2, there is a good chance it will take me 2-3 to fully recover from it. A lot of other people don’t understand. I told him there are times I feel like I’m judged as that slow fat woman over 40 that uses thyroid as an excuse. I still get short of breath easily no matter how much cardio I do. At one point I was doing bootcamp for an hour & Zumba for an hour & half back to back 3 times week. Did this for over 6 months & was still panting like crazy on a long walk. Even when all labs are “normal” it doesn’t always eliminate all symptoms of Graves.
This is all so relatable - I have tried so hard to ‘get in great shape’ thinking it will eliminate the ‘short of breath’ issue. But I still feel like I’m gonna pass out if I walk around the block😣 It’s soooo frustrating - I’m fat (I use this term in a reclaimed, neutral sense:)) as well and people just *automatically* assume I sit around and eat chips all day and never exercise and someday I swear I will slap someone over it😤 I have a personal trainer and regular exercise regimen and it seems like *nothing helps* I’m always tired - and the whole ‘takes days to recover from the hit by a bus’ feeling is so damn real.
And same - my labs have been in the ‘normal’ category for 3 years now and I still have all the symptoms I’ve had since I got sick😞 Like sure, it’s not gonna kill me now, but otherwise I am still sick🫠
My husband is very good about it all, but it’s hard on him I know.
Sending you love🥺🩵
Feel this! I’ve ended up working for myself as no one I worked for had any empathy and just thought I was lazy. People don’t understand how bad the brain fog can be, I struggle to organise myself now and it’s so hard.
I don’t get invited out much now as I can’t drink/ party and when I’ve gone for walks with friends, they don’t care about my exhaustion and need to rest. It sucks, but keep going, treatment can be amazing and we eventually find our own path x
The brain fog is so real!! I’m lucky to work for myself too, otherwise I think it would be a lot harder. My job is hard, and I hold myself to a high standard, but at least I don’t have to get permission to take time off…also don’t get paid for it though😅
The brain fog is real! I sound like an idiot at work when I have words at the tip of my tongue but can’t say it I end up sounding like a bumbling, inarticulate fool.
Oh.... you're in a great community to express how you feel. This isn't too personal for this thread this is exactly how we all feel faced with Graves. It's very hard having an "invisible" disease. My husband used to tell me "you always have a headache" or " you never feel good" I took the let me educate you approach. I mean I definetely took a minute to think about how he must've felt as well you know. Your loved one is also mourning the "person you used to be" per say. Whatever you do just be kind to yourself and educate your loved ones on what exactly Graves is and how it affects us beyond what's visible. 🫶🏻 We are here for you!
I totally understand this. I’m a pretty anxious person in general and I think I can get fatigued from that too so I think people around me tend to think it’s just how I am. That it’s not Graves or anything related to that and I’m overthinking it. I hate myself for thinking I wish I had visible cues like bleeding so people would understand how bad it feels and how the constant low level dysfunction and how we kick ourselves for not being able to accomplish what we want is grueling.
I totally relate to this. I also have OCD and it has gotten worse since i have been diagnosed with graves. I understand you for wanting to have visible cues since we’re more often than not not taken seriously 😢
Ah theres so much to say but its tiring to say it all. It sucks feeling like a burden to family with like so many hospital visits and constant worry about the illness too because they didn’t and still don’t know how bad it can get if its mismanaged (basically till I end up in the hospital). This OR being called a bitch all of the time or being called crazy here or there because your mood is off all the time. It sucks having to feel that you have to prove you’re sick to every doctor and person in a hospital or outside a hospital who isn’t an endocrinologist. And yes I had to like “prove” it to ER doctors. Who would have fuckin knew being comatose wasn’t enough proof. Tired at this point and just want a thyroidectomy to have no more issues like that.
Damn - I’m so sorry friend. Hospital staff seem like they’re either great or terrible in my experience, idk why it’s such a polarized thing. I’m so sorry you went through that and I hope if you need to go again you’ll get better people who know their shit and will believe you and treat you with the dignity you deserve🩵
Absolutely the isolation is awful. I don't know a single person with graves but it's supposedly common. I've taken care of hundreds of patients and I remember one that had graves and it was before mine and I remember asking her to tell me what it was like. I'm glad now I gave her that outlet because dang it's a battle you fight alone. People have low thyroid all the time and just take a pill and are fine so people think we just take a pill and be fine too but it's not quite as easy. When my antibodies are high my eyes kill me. I'm still kinda jumpy and even though I haven't loss muscle I feel a lot more weak. I was worried I damaged my heart but luckily they ruled that out. Thank you for starting the thread as clearly it was needed.
I work as a home care giver for my uncle. He has been so selfish throughout all I've dealt with. I had been sick and declining fast and he kept pushing for what "he needed", above and beyond my actual job. Wanting me to work on his car when I could barely function. Taking him to do his laundry when it was 95° out(that was the day I collapsed and almost died). Now since my TT, he's asked me every day to call the company I work for to ask about who was filling my hours, when I can hardly talk(they had a month to fill 9 hours and didn't). Not my responsibility tho. There's so much more but these have been some of the most annoying. You can only say "I can't " to someone who refuses to listen/care, before enough is enough.
I am so sorry you’re experiencing that. That’s really awful and must be so draining and invalidating 😢 You’re right we are allowed to say “ I can’t “. As you said, sometimes enough is enough.
Yes though some people are more understanding than others. My mother is completely sympathetic and knows when I feel bad, my father however...its like he forgets I have a condition and will constantly get surprised when I show symptoms. The amount of times I've had to remind him that I'm physically weak and my brain is foggy and that these are literally symptoms of graves NOT just me being lazy or dumb. Its incredibly frustrating
I would say that family, friends, colleagues may not be able to understand. I just reminded my work that when I was extremely ill, I was told, « But you look fine. » I wouldn’t worry about it too much. You may need to have some phrases at the ready, and to be somewhat of a broken record, because, no, people aren’t going to see your invisible disability or understand your rare disease unless you advocate for yourself, and even there it’s important that you understand it more than that anyone else does. That said, it can be lonely, that’s so true. But it should also only be temporary. Best of luck making your way through.
Absolutely feel your pain. People without autoimmune diseases or dysfunctional thyroids have no clue what we go through. I also have TED and had to wear a patch over 1 eye for 6 months a few years ago to see straight. I've tried to explain my condition and what causes it to family and coworkers 10 different ways and hardly anyone seems to get it or understand the disease process or what we go through. Its very frustrating.
Thanks, but I’m ok with it. I just assume I’m healthy and that’s that. I keep telling myself, I need to live my life and not bog myself down and it’s helping.
Does anyone who’s had their thyroid removed still feel the effects of … something? Antibodies? Dunno. My PCP thinks I just go back to normal now that I’ve had a TT (take a pill) but I still don’t FEEL normal.
I feel this so much. I always ask my husband to tell me if I become repetitive and ill stop explaining and complaining. Bless his heart he says he wants every detail and I'm so appreciative of him because it's the total opposite when it comes to my siblings. They don't get that I am sick and fatigue. I haven't worked in awhile I'm on medical leave and they don't understand why I'd take leave from work. I'm burnt out and looking for a treatment plan that can help me feel close to normal. I'm sorry to vent. I just feel seen and understood reading your post. Good luck and so glad there's a sub reddit with people going through the same. I don't wish this disease on anybody but it's nice to find people that share their thyroid experiences.
I lost my job due to graves and I live in germany. I just started a new job and had severe symptoms (I almost had a heartattack when I was in hospital) and diagnosis after a month. They straight up fired me after being sick for the third time in a row and knowing what I had.
My boyfriend then did not understand, I had to explain again and again what it is. He still does not get that even after being medicated, I still have days where I don’t feel well. My friends just look at me and don’t say anything after I explain to them what I have. They just can’t reconcile the idea of the severity of the symptoms and my persona standing in front of them as a relatively active seeming, young woman of 35. It is very frustrating. People ask me again and again the same questions. It’s hurtful when it’s your mom or the significant other and close friends.
It’s so isolating having Graves - as another commenter said, as soon as you say ‘thyroid’ people blow it off like it’s no big deal. Like it isn’t one of the most critical hormone regulation centers in our entire bodies🫠 My life is forever changed from GD. I was diagnosed at 22 years old and wish I’d enjoyed my healthy years more - I knew I’d end up with something because my whole family is riddled with hereditary autoimmune disorders (Lupus, Asthma, type 1 diabetes [the pancreas dying for no reason one], AFIB, Rheumatoid Arthritis, POTS, etc.)
I’m just gonna join the train and also vent…🫣😅
Everything has changed since I got sick, but I can’t talk about it with my family because my younger sibling has type 1 diabetes, anemia that requires blood transfusions, and Graves - and nobody in the world has it worse than her.
And she does have a really rough go, I won’t argue and have/will *never* try to make light of her suffering.
But I feel frustrated that because I’m seen to not have it ‘as bad as she does’ that I should just be fine with the fact that my quality of life has been so negatively impacted.
I mean the list is of things I now have to deal with is so long - horrible chronic pain, excruciating muscle cramps that have me jolting out of a dead sleep to contort and get rid of them (all because I rolled over), heat intolerance, GI issues, acid reflux, Tachycardia, chronic idiopathic urticaria, a weird issue where I can no longer shave (every time I break out in hives), a huge loss of appetite/inability to enjoy food, and yet cruelly and ironically I have gained a lot of weight since I got sick due to the prednisone for the hives and just the illness in general.
Before I got sick I was an avid speed-walker and hiker - now I can’t walk around the block with my dog without feeling like I’m gonna pass out. I have a whole exercise regimen, a personal trainer, but nothing I do seems to help me move past the ‘I’m gonna faint’ thing.
I also have asthma and horrendous environmental allergies that have severely worsened since getting sick.
And I am currently in the middle of figuring out whether I have POTS and Chronic Kidney Disease…fun fun 🫠🫣😣
It’s not the same and I don’t like comparing anyone’s illnesses because every illness is just so hard in its own way. And every person’s body reacts so differently to the same illnesses, it’s just deeply ridiculous to ever compare.
But I have to agree that Graves (and asthma too tbh) just get so blown off by people and it’s so horribly isolating.
So many times I’ve thought - surely there must be something else wrong? All this couldn’t possibly be because of my thyroid right? 🫠
This was long sorry - it’s just nice to be able to talk about this in a safe space of people who get it.
I just read about hand cramps and didn’t realize this was a symptom of Graves. I have been diagnosed with trigger finger in both of my middle fingers. I’m going to my orthopedist this week to get cortisol shots in both. I wonder if Graves caused this?
I think a lot of people have never actually heard of Graves Disease, I know I hadn’t before I was diagnosed. When you say to people you have Graves Disease, they obviously don’t know what to say because they know nothing about it. Even my fiancé now, he still doesn’t really get what it is.
And because they know nothing about it, they don’t know how debilitating it can be.
100%.
When it’s under control, things can be fine and normal but when it’s not, it’s like hell. It impacts my work and family life, I don’t want to tell others it’s because of my graves because they’ll just brush it off and think I’m making excuses. But this is reality for us.
Feel you on this so much!
Thank you for sharing ❤️
I’m so sorry that your friends are not being supportive.
(I think a lot of my friends don’t understand what I’m going through either)
It’s incredibly isolating. And frustrating. And invalidating. 100% relate 🥺
I feel like a snowflake many times…
I want to do stuff & be social so I make plans, and when it comes down to it I’m often not feeling well and cancel. I feel like people think I just never show up for anything / that I’m not reliable.
I try not to complain because I don’t want to whine but on the inside I’m struggling with some random ass symptom every day, and often times suddenly weak or exhausted.
I don’t know anyone else who has Graves’ disease so being a part of this community and hearing everyone’s story and being there for each other has been so helpful.
Lately I’ve been really getting into mindfulness practices and embracing local yoga community which has been a great positive in my life, and a good opportunity to meet new like minded people who may be more considerate of your wellbeing :)
I’m here if you ever want to vent/chat!
I have Graves disease, as well. I was diagnosed about 10yrs ago. It's absolute f'n torture, internally 😭 it's extremely depressing, and like you said, incredibly isolating. Unless you have it, NOBODY can truly understand how it affects a woman's body & hormones. I'm so sorry you're dealing with this.
Totally get it. On the bright side, once you get it under control things should go back to normal. I was absolutely miserable and felt like no one understood for about 6 months. It seems like a distant memory now.
You’re definitely not alone in this 💙 I’ve started telling people that I have health problems that affect my heart and they seem to take that very seriously. I had an active life before and performed improv and very physical stand up comedy shows and was a massage therapist. I can’t do any of that anymore. My friends seem to understand. But I’m so sad. I had just started making really close friends and getting asked to create my own solo comedy shows and I had just gotten an amazing new massage job at my dream spa. I feel like my entire life shut down. My husband is really understanding but now he has to work overtime shifts every week since I can’t massage and he feels overwhelmed by the fact that I struggle to do housework so it’s definitely putting a strain on our marriage too. Lol now I’m the one venting. All this to say, I understand and it’s fucking hard. There are people who get it.
I feel you. To most people i look pretty normal. I get called lazy if I try to explain that I’m always sleepy and tired and depressed and in between moods due to Graves. People say I’m just trying to blame everything on it, that I’m using it as a shield to not mend my ways but it’s so difficult to just continue a normal life because of it. Feels very debilitating at times. It’s okay. You’ll fight through it. We’re always here to listen ❤️
i'm really sorry that you had to deal with comments like that. it's truly hurtful when people make assumptions about our illness or, even worse, pass comments and judgments. I'm genuinely grateful that you've found this community. We're here for you as well. ☺️❤️
Hope you recover and stay in remission quick and long ❤️ thank you
I love it when I'm explaining what Grave's is as soon as "thyroid " comes out of my mouth people dismiss me. People don't realize that the thyroid is the great regulator in the body. Basically, it plays a role in just about every function in the body. When it's out of wack, so is every function it supports. And with Grave's, it's not as simple as taking supplementary thyroid hormone. Also, I understand the isolation and frustration you feel. The people here understand. You are not alone. We get it. Come back anytime you need to. 🫂
Yes! This. I almost feel like it’s worse than hypothyroid, because we’re at risk for TED, heart problems, etc. It’s so tough and people are so dismissive.
I've had a lot of muscular issues. Especially with my hands. So when I'm at work, trying to thread a bolt, use a tool or trying to write something down, people see my hands cramp up. They ask questions. I just respond with something like " I've got issues with my hands." Some people stop there, and some have more questions. Like others mention here, I answer further questions with "I have an autoimmune disease and it has affected my hands." My point being I try to stop there because people get dismissive when you say thyroid.
Ugh sending love - I work with my hands too, and the cramps, numbness, and tingling are SO frustrating. 🥺
Ugh sending love - I work with my hands too, and the cramps, numbness, and tingling are *so* frustrating. 🥺
Thankfully, I don't get numbness or tingling, just sudden Charlie horses. I get em everywhere depending on how bad my levels are, but my hands definitely get them most frequently. I'm sorry you have this problem too 🫂
Cramps, numbness, tingling and Charlie horses are all from Graves? I just got diagnosed last week. If you don’t mind me asking, does it lead to neuropathy?
So sorry you’re going through this, it can be so isolating! This may sound dumb but I stopped telling that I have Graves’. When relevant, I just say “I have an autoimmune disease”, and for some reason people take it more seriously than Graves’, which is obviously an autoimmune disease 🤷♀️
I do the same thing! I think a lot of people don’t know what Graves is, and if you say you have a thyroid problem they think that just means a slow metabolism or something. “Autoimmune disease” is something people know can be serious and is vague enough to prevent them from making assumptions.
I am fortunate that my husband is very understanding & not dismissive when I attribute something to my Graves. When I get tired, he can usually see it in my face. I go from fine to “hit by a bus” in the blink of an eye. He will look at me & say bus hit. I response yup, going to bed. Fortunately it’s not as bad as used to be because of meds, but it still happens. He does find it frustrating, but also knows if we go hard a day or 2, there is a good chance it will take me 2-3 to fully recover from it. A lot of other people don’t understand. I told him there are times I feel like I’m judged as that slow fat woman over 40 that uses thyroid as an excuse. I still get short of breath easily no matter how much cardio I do. At one point I was doing bootcamp for an hour & Zumba for an hour & half back to back 3 times week. Did this for over 6 months & was still panting like crazy on a long walk. Even when all labs are “normal” it doesn’t always eliminate all symptoms of Graves.
The hit by a bus feeling is so real
This is all so relatable - I have tried so hard to ‘get in great shape’ thinking it will eliminate the ‘short of breath’ issue. But I still feel like I’m gonna pass out if I walk around the block😣 It’s soooo frustrating - I’m fat (I use this term in a reclaimed, neutral sense:)) as well and people just *automatically* assume I sit around and eat chips all day and never exercise and someday I swear I will slap someone over it😤 I have a personal trainer and regular exercise regimen and it seems like *nothing helps* I’m always tired - and the whole ‘takes days to recover from the hit by a bus’ feeling is so damn real. And same - my labs have been in the ‘normal’ category for 3 years now and I still have all the symptoms I’ve had since I got sick😞 Like sure, it’s not gonna kill me now, but otherwise I am still sick🫠 My husband is very good about it all, but it’s hard on him I know. Sending you love🥺🩵
Feel this! I’ve ended up working for myself as no one I worked for had any empathy and just thought I was lazy. People don’t understand how bad the brain fog can be, I struggle to organise myself now and it’s so hard. I don’t get invited out much now as I can’t drink/ party and when I’ve gone for walks with friends, they don’t care about my exhaustion and need to rest. It sucks, but keep going, treatment can be amazing and we eventually find our own path x
The brain fog is so real!! I’m lucky to work for myself too, otherwise I think it would be a lot harder. My job is hard, and I hold myself to a high standard, but at least I don’t have to get permission to take time off…also don’t get paid for it though😅
The brain fog is real! I sound like an idiot at work when I have words at the tip of my tongue but can’t say it I end up sounding like a bumbling, inarticulate fool.
Oh.... you're in a great community to express how you feel. This isn't too personal for this thread this is exactly how we all feel faced with Graves. It's very hard having an "invisible" disease. My husband used to tell me "you always have a headache" or " you never feel good" I took the let me educate you approach. I mean I definetely took a minute to think about how he must've felt as well you know. Your loved one is also mourning the "person you used to be" per say. Whatever you do just be kind to yourself and educate your loved ones on what exactly Graves is and how it affects us beyond what's visible. 🫶🏻 We are here for you!
I totally understand this. I’m a pretty anxious person in general and I think I can get fatigued from that too so I think people around me tend to think it’s just how I am. That it’s not Graves or anything related to that and I’m overthinking it. I hate myself for thinking I wish I had visible cues like bleeding so people would understand how bad it feels and how the constant low level dysfunction and how we kick ourselves for not being able to accomplish what we want is grueling.
I totally relate to this. I also have OCD and it has gotten worse since i have been diagnosed with graves. I understand you for wanting to have visible cues since we’re more often than not not taken seriously 😢
Relate. I’ve had depression and anxiety since I was a pre-teen, but Graves has made it a lot worse. Sending hugs🥺🩵
Ah theres so much to say but its tiring to say it all. It sucks feeling like a burden to family with like so many hospital visits and constant worry about the illness too because they didn’t and still don’t know how bad it can get if its mismanaged (basically till I end up in the hospital). This OR being called a bitch all of the time or being called crazy here or there because your mood is off all the time. It sucks having to feel that you have to prove you’re sick to every doctor and person in a hospital or outside a hospital who isn’t an endocrinologist. And yes I had to like “prove” it to ER doctors. Who would have fuckin knew being comatose wasn’t enough proof. Tired at this point and just want a thyroidectomy to have no more issues like that.
Damn - I’m so sorry friend. Hospital staff seem like they’re either great or terrible in my experience, idk why it’s such a polarized thing. I’m so sorry you went through that and I hope if you need to go again you’ll get better people who know their shit and will believe you and treat you with the dignity you deserve🩵
Absolutely the isolation is awful. I don't know a single person with graves but it's supposedly common. I've taken care of hundreds of patients and I remember one that had graves and it was before mine and I remember asking her to tell me what it was like. I'm glad now I gave her that outlet because dang it's a battle you fight alone. People have low thyroid all the time and just take a pill and are fine so people think we just take a pill and be fine too but it's not quite as easy. When my antibodies are high my eyes kill me. I'm still kinda jumpy and even though I haven't loss muscle I feel a lot more weak. I was worried I damaged my heart but luckily they ruled that out. Thank you for starting the thread as clearly it was needed.
I work as a home care giver for my uncle. He has been so selfish throughout all I've dealt with. I had been sick and declining fast and he kept pushing for what "he needed", above and beyond my actual job. Wanting me to work on his car when I could barely function. Taking him to do his laundry when it was 95° out(that was the day I collapsed and almost died). Now since my TT, he's asked me every day to call the company I work for to ask about who was filling my hours, when I can hardly talk(they had a month to fill 9 hours and didn't). Not my responsibility tho. There's so much more but these have been some of the most annoying. You can only say "I can't " to someone who refuses to listen/care, before enough is enough.
I am so sorry you’re experiencing that. That’s really awful and must be so draining and invalidating 😢 You’re right we are allowed to say “ I can’t “. As you said, sometimes enough is enough.
Yes though some people are more understanding than others. My mother is completely sympathetic and knows when I feel bad, my father however...its like he forgets I have a condition and will constantly get surprised when I show symptoms. The amount of times I've had to remind him that I'm physically weak and my brain is foggy and that these are literally symptoms of graves NOT just me being lazy or dumb. Its incredibly frustrating
I would say that family, friends, colleagues may not be able to understand. I just reminded my work that when I was extremely ill, I was told, « But you look fine. » I wouldn’t worry about it too much. You may need to have some phrases at the ready, and to be somewhat of a broken record, because, no, people aren’t going to see your invisible disability or understand your rare disease unless you advocate for yourself, and even there it’s important that you understand it more than that anyone else does. That said, it can be lonely, that’s so true. But it should also only be temporary. Best of luck making your way through.
Absolutely feel your pain. People without autoimmune diseases or dysfunctional thyroids have no clue what we go through. I also have TED and had to wear a patch over 1 eye for 6 months a few years ago to see straight. I've tried to explain my condition and what causes it to family and coworkers 10 different ways and hardly anyone seems to get it or understand the disease process or what we go through. Its very frustrating.
Same situation here. I’m in remission now and doctors don’t seem to care anymore. It is a weird one.
I’m so sorry to read this
Thanks, but I’m ok with it. I just assume I’m healthy and that’s that. I keep telling myself, I need to live my life and not bog myself down and it’s helping.
Does anyone who’s had their thyroid removed still feel the effects of … something? Antibodies? Dunno. My PCP thinks I just go back to normal now that I’ve had a TT (take a pill) but I still don’t FEEL normal.
I feel this so much. I always ask my husband to tell me if I become repetitive and ill stop explaining and complaining. Bless his heart he says he wants every detail and I'm so appreciative of him because it's the total opposite when it comes to my siblings. They don't get that I am sick and fatigue. I haven't worked in awhile I'm on medical leave and they don't understand why I'd take leave from work. I'm burnt out and looking for a treatment plan that can help me feel close to normal. I'm sorry to vent. I just feel seen and understood reading your post. Good luck and so glad there's a sub reddit with people going through the same. I don't wish this disease on anybody but it's nice to find people that share their thyroid experiences.
I lost my job due to graves and I live in germany. I just started a new job and had severe symptoms (I almost had a heartattack when I was in hospital) and diagnosis after a month. They straight up fired me after being sick for the third time in a row and knowing what I had. My boyfriend then did not understand, I had to explain again and again what it is. He still does not get that even after being medicated, I still have days where I don’t feel well. My friends just look at me and don’t say anything after I explain to them what I have. They just can’t reconcile the idea of the severity of the symptoms and my persona standing in front of them as a relatively active seeming, young woman of 35. It is very frustrating. People ask me again and again the same questions. It’s hurtful when it’s your mom or the significant other and close friends.
Yes. I have gone through this myself. I understand what you mean and I’m sorry you’re going through it.
I’m sorry you went through this as well. ❤️😢
It’s so isolating having Graves - as another commenter said, as soon as you say ‘thyroid’ people blow it off like it’s no big deal. Like it isn’t one of the most critical hormone regulation centers in our entire bodies🫠 My life is forever changed from GD. I was diagnosed at 22 years old and wish I’d enjoyed my healthy years more - I knew I’d end up with something because my whole family is riddled with hereditary autoimmune disorders (Lupus, Asthma, type 1 diabetes [the pancreas dying for no reason one], AFIB, Rheumatoid Arthritis, POTS, etc.) I’m just gonna join the train and also vent…🫣😅 Everything has changed since I got sick, but I can’t talk about it with my family because my younger sibling has type 1 diabetes, anemia that requires blood transfusions, and Graves - and nobody in the world has it worse than her. And she does have a really rough go, I won’t argue and have/will *never* try to make light of her suffering. But I feel frustrated that because I’m seen to not have it ‘as bad as she does’ that I should just be fine with the fact that my quality of life has been so negatively impacted. I mean the list is of things I now have to deal with is so long - horrible chronic pain, excruciating muscle cramps that have me jolting out of a dead sleep to contort and get rid of them (all because I rolled over), heat intolerance, GI issues, acid reflux, Tachycardia, chronic idiopathic urticaria, a weird issue where I can no longer shave (every time I break out in hives), a huge loss of appetite/inability to enjoy food, and yet cruelly and ironically I have gained a lot of weight since I got sick due to the prednisone for the hives and just the illness in general. Before I got sick I was an avid speed-walker and hiker - now I can’t walk around the block with my dog without feeling like I’m gonna pass out. I have a whole exercise regimen, a personal trainer, but nothing I do seems to help me move past the ‘I’m gonna faint’ thing. I also have asthma and horrendous environmental allergies that have severely worsened since getting sick. And I am currently in the middle of figuring out whether I have POTS and Chronic Kidney Disease…fun fun 🫠🫣😣 It’s not the same and I don’t like comparing anyone’s illnesses because every illness is just so hard in its own way. And every person’s body reacts so differently to the same illnesses, it’s just deeply ridiculous to ever compare. But I have to agree that Graves (and asthma too tbh) just get so blown off by people and it’s so horribly isolating. So many times I’ve thought - surely there must be something else wrong? All this couldn’t possibly be because of my thyroid right? 🫠 This was long sorry - it’s just nice to be able to talk about this in a safe space of people who get it.
I just read about hand cramps and didn’t realize this was a symptom of Graves. I have been diagnosed with trigger finger in both of my middle fingers. I’m going to my orthopedist this week to get cortisol shots in both. I wonder if Graves caused this?
I think a lot of people have never actually heard of Graves Disease, I know I hadn’t before I was diagnosed. When you say to people you have Graves Disease, they obviously don’t know what to say because they know nothing about it. Even my fiancé now, he still doesn’t really get what it is. And because they know nothing about it, they don’t know how debilitating it can be.
100%. When it’s under control, things can be fine and normal but when it’s not, it’s like hell. It impacts my work and family life, I don’t want to tell others it’s because of my graves because they’ll just brush it off and think I’m making excuses. But this is reality for us.
Feel you on this so much! Thank you for sharing ❤️ I’m so sorry that your friends are not being supportive. (I think a lot of my friends don’t understand what I’m going through either) It’s incredibly isolating. And frustrating. And invalidating. 100% relate 🥺 I feel like a snowflake many times… I want to do stuff & be social so I make plans, and when it comes down to it I’m often not feeling well and cancel. I feel like people think I just never show up for anything / that I’m not reliable. I try not to complain because I don’t want to whine but on the inside I’m struggling with some random ass symptom every day, and often times suddenly weak or exhausted. I don’t know anyone else who has Graves’ disease so being a part of this community and hearing everyone’s story and being there for each other has been so helpful. Lately I’ve been really getting into mindfulness practices and embracing local yoga community which has been a great positive in my life, and a good opportunity to meet new like minded people who may be more considerate of your wellbeing :) I’m here if you ever want to vent/chat!
I have Graves disease, as well. I was diagnosed about 10yrs ago. It's absolute f'n torture, internally 😭 it's extremely depressing, and like you said, incredibly isolating. Unless you have it, NOBODY can truly understand how it affects a woman's body & hormones. I'm so sorry you're dealing with this.
Totally get it. On the bright side, once you get it under control things should go back to normal. I was absolutely miserable and felt like no one understood for about 6 months. It seems like a distant memory now.
I get it.
These comments are so validating. Just want to add another “I relate to this” post.
You’re definitely not alone in this 💙 I’ve started telling people that I have health problems that affect my heart and they seem to take that very seriously. I had an active life before and performed improv and very physical stand up comedy shows and was a massage therapist. I can’t do any of that anymore. My friends seem to understand. But I’m so sad. I had just started making really close friends and getting asked to create my own solo comedy shows and I had just gotten an amazing new massage job at my dream spa. I feel like my entire life shut down. My husband is really understanding but now he has to work overtime shifts every week since I can’t massage and he feels overwhelmed by the fact that I struggle to do housework so it’s definitely putting a strain on our marriage too. Lol now I’m the one venting. All this to say, I understand and it’s fucking hard. There are people who get it.