[misslex]

#1060010

Hi Everyone!

I’m new here, but it’s been really nice to look through the forum here and see what you’ve all got to say about your experiences with Graves’ – I get the feeling I’m going to learn a lot from you all! I’m wondering how Graves’ has affected your relationships with your friends and family.

Emotionally, I’m in a pretty dark place right now regarding Graves’. I don’t really want to consider RAI or TT as treatment options, but it looks like I reacted to the MMI. I’ve started PTU and I’m waiting to see if I react to that as well, and also what the situation is with my liver enzymes. I’ll be getting blood drawn next week, and will have a follow-up with my endo the week after. I’m scared of what the future could bring – my Graves’ is currently very mild – the only symptoms I experienced were anxiety and heart palpitations – which are what lead to my Graves’ diagnosis. I’m scared of what’s going to happen to my body – I’m scared of potential weight gain, I’m scared of surgery, and I’m scared of potential eye issues as well as emotional issues that come with Graves’. It got the point recently where I felt myself thinking “Well, at least I know that if it gets really bad I can end it.” I’m not at risk of doing anything and I’m feeling much better about it – but you know, it got dark there for a while.

I was frank about this with my fiance, my therapist, and my parents. My fiance, bless his heart, has been very supportive and my therapist has been a big help. My parents however, have disappointed me with their response. Basically they just keep telling me to be strong and to put faith in God, which is not really what I need to hear right now. I feel very weak. I expressed this to them, but I got no response.

I guess what I’m asking is – who do you lean on in regards to your Graves’? What have your experiences been with sharing your feelings, good and bad with family and friends? How much do you share and how much do you keep to yourself?

Thanks!

[karenz516]

#1179656

Hi misslex, my name is Karen, I am 57 years old and was diagnosed with Graves Disease on 12/6/12. Please know this site helps with venting our frustrations and answering questions, it is a big help to know that you are not alone. My belief is knowledge is power, I bought every book I could on Graves Disease/ Hyperthyroidism and read, read, read. I wanted to be informed and understand what was ahead for me. My story is, I had lost 30 lbs over a few months and my husband was getting worried, my family ambushed me and dragged me to the docs who ran a bunch of blood work and immediately got me in to see an endo who immediately hospitalized me that day! Talk about being freaked out! My heart rate was 180 bpm. I was hospitalized for two weeks and received RAI on 12/14/12. It was up an down for awhile but I can honestly say that now I am feeling much better than I did. I went hypo in April and started on Synthroid. My husband has been there for me 100%!! Quite frankly, I don’t set high expectations with friends or co-workers because when people look at me I don’t look sick, but not feeling well, dizziness, headaches, extreme fatigue are not visible signs so people do not really understand all that is going on. Talking that through with your therapist is a great idea! I too was scared of what Graves would bring. I weighted 120 lbs at my sickest and probably put 12 lbs. back on and trust me, I eat a salad and yogurt every day for lunch. I went into my endos office and said “this is not happening, you need to fix it”. hah! Some people do not convert T4 to T3 and might need to add Cytomel which is my next speech when I go to the endo. You have to be your own advocate, read, ask questions, get copies of your labs, speak up. You will be amazed at how strong you will be when YOU are in control. I personally have not had any eye issues as of yet, so if you do not, don’t fret about what might happen. You will learn a lot from this site and there are people who bring great humor (boomer comes to mind), that will make you smile and feel better. We are all in the same place you are, lean on us for support!

[brondack]

#1179655

Hi misslex,

Bill here and I am one of the minority (male) lol.

I would agree with all of the suggestions that Karen made about being you own advocate – but relying on who ever is close to you as well. The comment about friends / family not seeming to care is quite true since often there are no blatantly visible symptoms – so they think it is nothing to worry about. We all know how incorrect that is.

Yes, you will get a lot of support from the other members of this forum. But, I would also caution you about one thing. This disease affects everyone differently – some much worse that others, some with ‘group A (my term)’ symptoms and some with ‘group B(again my term)’ symptoms, and perhaps a very few with both and some with only mild versions of some symptoms . In your reading of all of the posts here, you might get very worried about experiencing all of the symptoms – and in the worst possible extreme. Is that possible?, Yes of course it is – but it is also very unlikely. So, take everyone’s personal statements as a fact that is true for them, but does not mean that it will be true for you.

You and your doctors need to assess your own situation and take the steps to improve it.

Read as much as you can about Graves, ask questions and take others’ advice after you have considered it carefully.

Good luck and we are all here to help you get through this – as we are going through it ourselves.

[Kimberly]

#1179657

Hello – I think that sometimes the issue with getting support for Graves’ is that people either (1) don’t understand it or (2) when they find out it’s a thyroid issue, think that “you just take a pill for that”. If your family would be willing to learn, we have a number of free patient bulletins on our web site at http://gdatf.org/about/about-graves-disease/patient-education/ One that might be of particular interest is #28 – An “Open Letter to Husbands of Graves’ Patients”. We also have a lot of content on our YouTube page featuring presentations on Graves’ from nationally recognized physicians: http://www.youtube.com/user/GravesAndThyroid

(Note on links: if you click directly on the above 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).

Talking to your family about what you need in terms of support can be helpful as well, as those around us can’t be mind readers. Some people really appreciate friends and family being very involved in attending doctor’s appointments and providing general support and encouragement. However, other patients prefer to just be left alone to manage the condition on their own. Still others fall somewhere in the middle!

I like Bill’s comment about trying not to imagine the “worst possible extreme” with Graves’. The majority of patients will NOT have the most serious complications with Graves’ – and the extra worry doesn’t help the healing process!

Take care!

[Boomer]

#1179658

Hey there Misslex!

Lots of great suggestions here for sure. My experience with others has been similar to yours:

My friends are interested and informed as is my sister. My folks, bless their hearts, don’t really grasp what I’m up against. While they have been supportive in some ways I feel a bit hung-out-to-dry in others. They’re both elderly and, being children of the Great Depression, they’re pretty stoic and tight-lipped. It’s okay.

I gave them a few links to some of the articles here and some handouts from my Endo and I think that will help- after all there is a LOT to absorb when learning about Grave’s. Maybe you could do the same- allow them to read at their leisure rather than overwhelm them with loads of verbal info.

No matter the case out there in the wild you can always come here for support, info, and shared experience. Good stuff!

Hang tough, be patient, and we’ll get through this. After all it’s “just” a little Thyroid issue.

NOT!

Love and health to you and yours,

Boomer

[misslex]

#1179659

karenz516 wrote:

Hi misslex, my name is Karen, I am 57 years old and was diagnosed with Graves Disease on 12/6/12. Please know this site helps with venting our frustrations and answering questions, it is a big help to know that you are not alone. My belief is knowledge is power, I bought every book I could on Graves Disease/ Hyperthyroidism and read, read, read. I wanted to be informed and understand what was ahead for me. My story is, I had lost 30 lbs over a few months and my husband was getting worried, my family ambushed me and dragged me to the docs who ran a bunch of blood work and immediately got me in to see an endo who immediately hospitalized me that day! Talk about being freaked out! My heart rate was 180 bpm. I was hospitalized for two weeks and received RAI on 12/14/12. It was up an down for awhile but I can honestly say that now I am feeling much better than I did. I went hypo in April and started on Synthroid. My husband has been there for me 100%!! Quite frankly, I don’t set high expectations with friends or co-workers because when people look at me I don’t look sick, but not feeling well, dizziness, headaches, extreme fatigue are not visible signs so people do not really understand all that is going on. Talking that through with your therapist is a great idea! I too was scared of what Graves would bring. I weighted 120 lbs at my sickest and probably put 12 lbs. back on and trust me, I eat a salad and yogurt every day for lunch. I went into my endos office and said “this is not happening, you need to fix it”. hah! Some people do not convert T4 to T3 and might need to add Cytomel which is my next speech when I go to the endo. You have to be your own advocate, read, ask questions, get copies of your labs, speak up. You will be amazed at how strong you will be when YOU are in control. I personally have not had any eye issues as of yet, so if you do not, don’t fret about what might happen. You will learn a lot from this site and there are people who bring great humor (boomer comes to mind), that will make you smile and feel better. We are all in the same place you are, lean on us for support!

Thanks, Karen! That’s all really great to know! I look forward to learning more from all of you!

[misslex]

#1179660

brondack wrote:

Hi misslex,

Bill here and I am one of the minority (male) lol.

I would agree with all of the suggestions that Karen made about being you own advocate – but relying on who ever is close to you as well. The comment about friends / family not seeming to care is quite true since often there are no blatantly visible symptoms – so they think it is nothing to worry about. We all know how incorrect that is.

Yes, you will get a lot of support from the other members of this forum. But, I would also caution you about one thing. This disease affects everyone differently – some much worse that others, some with ‘group A (my term)’ symptoms and some with ‘group B(again my term)’ symptoms, and perhaps a very few with both and some with only mild versions of some symptoms . In your reading of all of the posts here, you might get very worried about experiencing all of the symptoms – and in the worst possible extreme. Is that possible?, Yes of course it is – but it is also very unlikely. So, take everyone’s personal statements as a fact that is true for them, but does not mean that it will be true for you.

You and your doctors need to assess your own situation and take the steps to improve it.

Read as much as you can about Graves, ask questions and take others’ advice after you have considered it carefully.

Good luck and we are all here to help you get through this – as we are going through it ourselves.

Hi Bill! Thanks! It’s good to know that not everyone experiences all the bad that comes with Graves’ – it’s definitely something that I need to keep in mind. Thanks for the support!

[misslex]

#1179661

Kimberly wrote:

Hello – I think that sometimes the issue with getting support for Graves’ is that people either (1) don’t understand it or (2) when they find out it’s a thyroid issue, think that “you just take a pill for that”. If your family would be willing to learn, we have a number of free patient bulletins on our web site at http://gdatf.org/about/about-graves-disease/patient-education/ [gdatf.org] One that might be of particular interest is #28 – An “Open Letter to Husbands of Graves’ Patients”. We also have a lot of content on our YouTube page featuring presentations on Graves’ from nationally recognized physicians: http://www.youtube.com/user/GravesAndThyroid [youtube.com]

(Note on links: if you click directly on the above 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).

Talking to your family about what you need in terms of support can be helpful as well, as those around us can’t be mind readers. Some people really appreciate friends and family being very involved in attending doctor’s appointments and providing general support and encouragement. However, other patients prefer to just be left alone to manage the condition on their own. Still others fall somewhere in the middle!

I like Bill’s comment about trying not to imagine the “worst possible extreme” with Graves’. The majority of patients will NOT have the most serious complications with Graves’ – and the extra worry doesn’t help the healing process!

Take care!

As always, thanks, Kimberly!

[misslex]

#1179662

Boomer wrote:

Hey there Misslex!

Lots of great suggestions here for sure. My experience with others has been similar to yours:

My friends are interested and informed as is my sister. My folks, bless their hearts, don’t really grasp what I’m up against. While they have been supportive in some ways I feel a bit hung-out-to-dry in others. They’re both elderly and, being children of the Great Depression, they’re pretty stoic and tight-lipped. It’s okay.

I gave them a few links to some of the articles here and some handouts from my Endo and I think that will help- after all there is a LOT to absorb when learning about Grave’s. Maybe you could do the same- allow them to read at their leisure rather than overwhelm them with loads of verbal info.

No matter the case out there in the wild you can always come here for support, info, and shared experience. Good stuff!

Hang tough, be patient, and we’ll get through this. After all it’s “just” a little Thyroid issue.

NOT!

Love and health to you and yours,

Boomer

Hah! Thanks, Boomer – I love your sense of humor re: Graves’. Definitely something I could use more of. Great suggestions, too! Thanks!

[CycleColo2013]

#1179663

Hi Misslex,
Glad to see you on the site. I am relatively new too. I joined a few weeks ago during one of my fearful pre-TT fits of uncertainty. This means most of the scrounging for articles and forum reading I’ve done so far through the site has been about thyroid surgery and what to expect and not necessarily about the emotional effects and support networks we seek.

Brondack may have been referring to me when he said Bill – unless there’s another Bill participating on the site. Us guys with GD are small in number…

I love what has been said so far… it helps to read as much as you can and to remember it does affect everyone differently. You will also find many opinions on what to do – whether it is small decisions about diet and exercise or big decisions about medication, RAI, surgery. The good news is you do not have to make any decision today, especially if you are apprehensive and uncertain.

For myself, I’ve seen some dark places some of which are thyroid related. At times it has been difficult to believe things might normalize. And I can become overcome with fear and dread which increases my anxiety even more. This happened most often when my numbers are off. It quite easy to be wound up about what to do, what will happen, and the what if. Like you, I am lucky to have a supportive partner. He has been extremely patient with my mood swings, irritability, irrationality, fear, short fuse and depression. A great source of support, no doubt but as my total support network – way too much to expect. My mother, siblings? Fuggedaboutit! In the long run it has been the therapist and two or three close friends I’ve been able to level with that have helped. If they didn’t know about GD before, they were happy to learn. With them I could rant and rave and be scared, and I would be reminded by them that it’s all o.k.

So while you seek out that support, let us here all tell you, IT IS GOING TO BE OKAY! You will find the right path for you, you do not have to do it today, and if you are not choosing today, you don’t have to worry today about what might happen with whatever path you choose.

I hope this is helpful.

One of the more surprising things I’ve experienced recently when I finally abandoned the “post-surgery Jacqueline Onassis incognito” look every time I left the house, is that I repeatedly found myself having a similar conversation with friends and acquaintances I bump into…

Friend or acquaintance: What’s up with the scar?
Bill: I had my thyroid taken out.
Friend or acquaintance: Wow, is everything okay?
Bill: Yes. For many years I’ve had Graves Disease, essentially an overactive thyroid. I’ve had success managing it with medication, but it became clear it was never going to go into remission and it was time to do something about it.
Friend or acquaintance: Wow. That’s great. What does the thyroid do?

Wow, indeed. Wishing you the best in sorting it out, hang in there.
Bill

[brondack]

#1179664

CycleColo2013 wrote:

Brondack may have been referring to me when he said Bill – unless there’s another Bill participating on the site. Us guys with GD are small in number…

I didn’t mean to be referring to anyone – other than myself – as I am also a Bill

[Kimberly]

#1179665

@CycleColo2013 – One of our volunteers checked into a hotel not long after her thyroidectomy, and the hotel clerk stared and asked what happened. Her response:

“Bear Trap.”

I am definitely going to borrow that if I ever go the surgery route.

[CycleColo2013]

#1179666

brondack wrote:

CycleColo2013 wrote:

Brondack may have been referring to me when he said Bill – unless there’s another Bill participating on the site. Us guys with GD are small in number…

I didn’t mean to be referring to anyone – other than myself – as I am also a Bill

WOW two Bills with GD!! And both on the GDTF site – what are the odds of that?!!?

[misslex]

#1179667

CycleColo2013 wrote:

Hi Misslex,
Glad to see you on the site. I am relatively new too. I joined a few weeks ago during one of my fearful pre-TT fits of uncertainty. This means most of the scrounging for articles and forum reading I’ve done so far through the site has been about thyroid surgery and what to expect and not necessarily about the emotional effects and support networks we seek.

Brondack may have been referring to me when he said Bill – unless there’s another Bill participating on the site. Us guys with GD are small in number…

I love what has been said so far… it helps to read as much as you can and to remember it does affect everyone differently. You will also find many opinions on what to do – whether it is small decisions about diet and exercise or big decisions about medication, RAI, surgery. The good news is you do not have to make any decision today, especially if you are apprehensive and uncertain.

For myself, I’ve seen some dark places some of which are thyroid related. At times it has been difficult to believe things might normalize. And I can become overcome with fear and dread which increases my anxiety even more. This happened most often when my numbers are off. It quite easy to be wound up about what to do, what will happen, and the what if. Like you, I am lucky to have a supportive partner. He has been extremely patient with my mood swings, irritability, irrationality, fear, short fuse and depression. A great source of support, no doubt but as my total support network – way too much to expect. My mother, siblings? Fuggedaboutit! In the long run it has been the therapist and two or three close friends I’ve been able to level with that have helped. If they didn’t know about GD before, they were happy to learn. With them I could rant and rave and be scared, and I would be reminded by them that it’s all o.k.

So while you seek out that support, let us here all tell you, IT IS GOING TO BE OKAY! You will find the right path for you, you do not have to do it today, and if you are not choosing today, you don’t have to worry today about what might happen with whatever path you choose.

I hope this is helpful.

One of the more surprising things I’ve experienced recently when I finally abandoned the “post-surgery Jacqueline Onassis incognito” look every time I left the house, is that I repeatedly found myself having a similar conversation with friends and acquaintances I bump into…

Friend or acquaintance: What’s up with the scar?
Bill: I had my thyroid taken out.
Friend or acquaintance: Wow, is everything okay?
Bill: Yes. For many years I’ve had Graves Disease, essentially an overactive thyroid. I’ve had success managing it with medication, but it became clear it was never going to go into remission and it was time to do something about it.
Friend or acquaintance: Wow. That’s great. What does the thyroid do?

Wow, indeed. Wishing you the best in sorting it out, hang in there.
Bill

Thanks, Bill! You all are so supportive and wonderful, I’m really glad to have found this forum.

[Ann1960graves]

#1179668

My husbands first question was, “Is your life insurance premiums up to date?”

Humor can go a long way when you are sick.

[Author]

Posts