[DeeColleen]

#1059785

Hello all;

My History
I was recently diagnosed with Graves Disease (December 2012); however, I had been experiencing symptoms for about a year since then (Since October 2011). Any time I went to the doctor or the emergency room they stated that my heart palpitations were a result of stress and anxiety. They also attributed my rapid weight loss (130-118lbs in two months) to a fast metabolism and stress. When I became tired, irritable and unable to focus in school, I thought I just needed a break, I was burnt out…if it were only that simple. Unbeknownst to me (I really didn’t notice until it was brought to my attention) my eyes were getting larger, not that cute doe eyed large either. I’m referring to bulging out the sockets large, so bad that my mother could not even look at me.

My thanksgiving was spent with my family members staring at me; and making remarks like: “Big eye girl pass the mashed potatoes”, “hey my big eye niece”, “gosh, I can’t even look at you your eyes are so big”. As you can surmise, my confidence was shot, it felt like I curled up and died inside. If this was how my family reacted, what did the rest of the world think. As soon as I returned to Albany (where I currently live because of school); I checked myself into urgent care listing every single symptom I experienced: from fatigue to tremors. It shocked me that I even functioned, I never payed attention to everything that I dealt with…I thought my symptoms were normal for a college student. WRONG

After I handed in my chart I did a quick google search of my symptoms and found that everything I listed was on the symptom list for Graves Disease. There is no exaggeration here; literally everything (minus one or two symptoms). I knew what I had prior to my examination and sure enough blood work confirmed.

The Problem

I’ve been on Methimazole 10mg since December and my th4 levels have not decreased. They have been at the same stagnant level for 3 months. My doctor last week increased it to 15mg; however, my labs indicated that my liver levels are now too high, and I am now anemic. I was wondering if the increase in my liver and my new anemia is a product of the methimazole?

Also, I am still extremely tired, fatigue, and unable to really sit down and concentrate (writing this post was quite the project) and the pressure in my eyes are unbearable. I am attempting to complete my masters; but I am finding it extremely difficult. I know there are people out there in probably worse conditions than I am, but I am really struggling. I really just want this to be over so I can be me again; no big eyes, no pulsating heart…just me. I’m not sure if my doctor is proactive enough in my treatment; I get the feeling that she doesn’t care…I just want to find a Doctor that’s going to treat me and this disease as if they were treating themselves.

Any advice…I apologize for the jumbled sentences and shotty thought process…this is the first time I’m actually speaking about this.

[Kimberly]

#1177492

Hello and welcome! First of all, we are fellow patients here, so we can share general information, but we aren’t allowed to give medical advice.

Elevated liver enzymes *can* be a side effect of the medication, but it can *also* be a result of hyperthyroidism. Your doctor will need to help you sort out whether or not this issue is due to the meds. Has she talked to you about the elevated liver enzymes? Is she planning to re-test these levels soon to see if they have improved?

For those of us with Graves’, our relationship with our endo is a long-term one, so you definitely want a doc that you have confidence in. If you might be interested in a second opinion, this thread has several resources where you can search for a doctor by city/state/zip.

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

http://gdatf.org/forum/topic/42489/

Your eye symptoms are definitely worth getting checked out by an experienced ophthalmologist; the above link also includes a search site for eye docs. Unless you are having vision issues, the process is often “watch and wait” in the early stages…but it’s good to get an experienced doc on your team who can evaluate your progress.

I’m sorry you have had to put up with so many insensitive comments from your family! If they might be willing to learn more about Graves’ disease, we have quite a few videos on our YouTube channel and many patient bulletins on our web site that will hopefully be of interest:

http://www.youtube.com/user/GravesAndThyroid

http://gdatf.org/about/about-graves-disease/patient-education/

Some patients who are in school choose to push through their studies…while others decide to take a short break to focus on the healing process. You will need to decide which approach is best for you personally. This is a bulletin on Graves’ and students that might be of assistance. It was written primarily for parents, but has some good tips for students of *all* ages.

http://gdatf.org/about/about-graves-disease/patient-education/students-graves/

Take care – and please check back to let us know how you are doing!

[vanillasky]

#1177493

Hi! welcome to our support group.

I read your story and wanted to cry. Except for the eye involvement, I also suffer from Graves’ disease and have been for years literally before the proper diagnosis.

It is one horrid disease, that’s why I come here. You will find this internet forum is one that understands and you won’t hear comments about “big eye” girls. We all are in the same boat.

For me, it has been something (because of diagnosis of Hashimotos) a very long road, several endocrinologists and doctors in general to finally figure out what is wrong. They are too quick to diagnose anxiety or depression without checking out tsh. I too, went to the ER twice. Nearly passed out from heat intolerance and palpitations and down to 89 pounds.

You can vent here and don’t worry about putting sentences together. I rant and rave all the time and these people all listen!

Karen

[snelsen]

#1177494

We will be your family who understands, and help you slug through all of this.
Use the search engine, read some of adenure’s posts (Alexis) She also had elevated liver enzymes,and I think you will find her posts encouraging as she traveled down this road..as we all have done.

Not sure about the anemia.

You need:
1. a compassionate and good endocrinologist who treats Graves’ and understand it (and us.)

2. I suggest you try to find a neuro-opthalmologist (as a regular eye doc if they 2know of one, and/or ask your primary (do you have one, it is hard when you are a student, you may be using student health?) Good for you, going to urgent care. It is good to have any eye doc who is familiar with TED (thyroid eye disease) It is very wise, and safe for your eyes, to get a baseline exam. You may be dealing with TED and Graves’ but maybe not.

In the meantime, lots of eye drops if your eyes feel dry.

Your family needs:
to read about, and understand what is happening to you, that it is serious.
Kimberly’s suggestion are a great place to begin.
And, while you are at it. ask family members if they know if any autoimmune disease in the family, and or anyone with Graves’.

ANd, welcome, welcome, welcome. If you read a few posts, and/or use the search engine to find the subjects you are wondering about, it really really really does help to know you are NOT ALONE, AND NOT CRAZY. This is the way we all felt.
Shirley

[jaqeinquotation]

#1177495

Hey,

I think you will find this forum to be a great support with good information.
I hope you begin to feel better soon. Your family should be ashamed of themselves. I wonder if they have any idea how hurtful and ignorant they were being. Let me stop.
I’m sure many of us can identify with your story in more than just a few ways. My point is that if you were bearing (did I spell that right?) this all alone, you don’t have to anymore (sorry for sounding mushy) but honestly this forum has been great for me and I’m sure I speak for many when I say, many.

I REALLY hope you find a good endo and a good ophthalmologist. When you find them, if you feel that they’re not the right fit, then get a second opinion. I’velearned that I have to continue educating myself, eating well and being my ‘own’ advocate.

I know all about the eyes too, many of us in this forum do. It’s my biggest challenge to date. Even my most hardest trials, most embarrassing moments could never compare. I’m going through the stages right now and it sounds like you are too.

Kudos to you for tackling your Master’s! If you need a break, then break.
I hope the link Kimberly posted is helpful for you.

Take care and thanks for sharing your story:)

[scarlettx]

#1177496

DeeColleen if you haven’t already, make sure you get hard copies of all the labs your Dr. is running and learn how to read them and where they fall into the reference ranges. It will realy help you see the big picture about how your hormone levels are responding to the Methimazole. This will also help you know if your Dr. is just raising your Methimazole dose to try and increase your TSH, which can remain supressed for a long time in Graves’ Disease. I think this site allows posting of labs, and folks can comment on the labs, as long as they don’t give treatment recommendations.

This is a wonderful support group, and even though I have only posted once or twice, it has been a great comfort to me to read about other’s experiences.
Scarlett

[Gabe]

#1177497

DeeColleen… I too am new to this disease and new to this forum. The disease sucks; the forum is the best! I now feel empowered and understood (at least by fellow forumers). Reading this forum helped me to manage my doctors, research my own path, understand what is happening to me, and most importantly insist on things that were not being done by my docs.

It is life altering to go thru this and unlike some diseases where others can look at you and tell you are ‘sick’, this disease (other than eye issues and weight loss/gain) can appear to others as if we are just fine (or maybe a little crazy) and not be as compassionate as they may be with other more obvious or well known illnesses.

Managing your stress levels is extremely important (as I have found). If you can scale back on your course load while you are managing your Graves you will find that makes a big difference.

Best wishes,,,Karen

[smtucker]

#1177498

Why can’t we choose our families? My goodness, what a horrid way to spend my favorite Thanksgiving. My sister’s eyes are very buggy. Mine are getting there. I hate it. She hates it.

Strangely, my eyes didn’t get bad until after I started treatment. Amazing how much eyes can protrude in less than 16 days, the amount of time I was able to stay on the meds.

I have no idea on how to teach your family to be nice to you, or how to control this Graves stuff. I am still in the middle of this.

*susan*

[vanillasky]

#1177499

To me, it’s just ignorance aside from being cruel. Most people don’t know what Graves’ disease is and don’t even know what the heck a thyroid is. So what can we do? I could get nasty and tell them off or just leave the room. tough call. My relatives don’t know anything about my illness. I dont’ tell anyone. I am lucky I do not have eye involvement at this time, but if I did, I wouldn’t tell them anything. They are too ignorant to understand.

My goal is to educate people. If you mention diabetes, every body knows. Graves’? what’s that? I am sick of it.

[DeeColleen]

#1177500

Thanks so much Karen! I actually find myself coming here instead of Facebook. I spend hours trying to find out as much as I can about this ailment. I always ask myself why me; why out of everyone in my family was I plagued with this. I still have not found the answer to this question, but I hope someday I will. Thank you so much for your support.

vanillasky wrote:

Hi! welcome to our support group.

I read your story and wanted to cry. Except for the eye involvement, I also suffer from Graves’ disease and have been for years literally before the proper diagnosis.

It is one horrid disease, that’s why I come here. You will find this internet forum is one that understands and you won’t hear comments about “big eye” girls. We all are in the same boat.

For me, it has been something (because of diagnosis of Hashimotos) a very long road, several endocrinologists and doctors in general to finally figure out what is wrong. They are too quick to diagnose anxiety or depression without checking out tsh. I too, went to the ER twice. Nearly passed out from heat intolerance and palpitations and down to 89 pounds.

You can vent here and don’t worry about putting sentences together. I rant and rave all the time and these people all listen!

Karen

[DeeColleen]

#1177501

Shirley;

Yes I am currently on the hunt for that endo and I travel from Albany to NYC whenever I have to see my endo or ophthalmologist, so I don’t use the health services in Albany, unless its an emergency. I’ll definitely read into the Alexis story’s you mentioned. Thanks so much for your advice and welcoming me.

snelsen wrote:

We will be your family who understands, and help you slug through all of this.
Use the search engine, read some of adenure’s posts (Alexis) She also had elevated liver enzymes,and I think you will find her posts encouraging as she traveled down this road..as we all have done.

Not sure about the anemia.

You need:
1. a compassionate and good endocrinologist who treats Graves’ and understand it (and us.)

2. I suggest you try to find a neuro-opthalmologist (as a regular eye doc if they 2know of one, and/or ask your primary (do you have one, it is hard when you are a student, you may be using student health?) Good for you, going to urgent care. It is good to have any eye doc who is familiar with TED (thyroid eye disease) It is very wise, and safe for your eyes, to get a baseline exam. You may be dealing with TED and Graves’ but maybe not.

In the meantime, lots of eye drops if your eyes feel dry.

Your family needs:
to read about, and understand what is happening to you, that it is serious.
Kimberly’s suggestion are a great place to begin.
And, while you are at it. ask family members if they know if any autoimmune disease in the family, and or anyone with Graves’.

ANd, welcome, welcome, welcome. If you read a few posts, and/or use the search engine to find the subjects you are wondering about, it really really really does help to know you are NOT ALONE, AND NOT CRAZY. This is the way we all felt.
Shirley

[DeeColleen]

#1177502

Yes I totally agree with you about the hurtfulness and ignorance, at times I wish I didn’t tell them but I can’t erase that now. The comment that bother’s me the most is when my mother turns away and grimaces when she looks at me. That has definitely shot my confidence level down, I am extremely insecure now..and I despise taking pictures (something I always loved to do). I don’t mind the mushy stuff, I am happy I am not alone. Yes, the eyes are one of the toughest things to deal with and I do think I need a break or a lighter course load. Thank You, Thank You, Thank You for your support.

jaqeinquotation wrote:

Hey,

I think you will find this forum to be a great support with good information.
I hope you begin to feel better soon. Your family should be ashamed of themselves. I wonder if they have any idea how hurtful and ignorant they were being. Let me stop.
I’m sure many of us can identify with your story in more than just a few ways. My point is that if you were bearing (did I spell that right?) this all alone, you don’t have to anymore (sorry for sounding mushy) but honestly this forum has been great for me and I’m sure I speak for many when I say, many.

I REALLY hope you find a good endo and a good ophthalmologist. When you find them, if you feel that they’re not the right fit, then get a second opinion. I’velearned that I have to continue educating myself, eating well and being my ‘own’ advocate.

I know all about the eyes too, many of us in this forum do. It’s my biggest challenge to date. Even my most hardest trials, most embarrassing moments could never compare. I’m going through the stages right now and it sounds like you are too.

Kudos to you for tackling your Master’s! If you need a break, then break.
I hope the link Kimberly posted is helpful for you.

Take care and thanks for sharing your story:)

[DeeColleen]

#1177503

Yes, I have every copy of my medical record; I’ve made it a point to ask for those. I just have to make sure I get the ones from the ophthalmologist I’ve been seeing. I have no idea how to read the lab work; that’s something I don’t even believe my current endo will sit down and help me understand it; so hopefully when I find a new one they will. And I will take an opportunity of the lab posting. Thank you for your help; and yes I agree the support is quite comoforting.

scarlettx wrote:

DeeColleen if you haven’t already, make sure you get hard
copies of all the labs your Dr. is running and learn how to read them and where they fall into the reference ranges. It will realy help you see the big picture about how your hormone levels are responding to the Methimazole. This will also help you know if your Dr. is just raising your Methimazole dose to try and increase your TSH, which can remain supressed for a long time in Graves’ Disease. I think this site allows posting of labs, and folks can comment on the labs, as long as they don’t give treatment recommendations.

This is a wonderful support group, and even though I have only posted once or twice, it has been a great comfort to me to read about other’s experiences.
Scarlett

[DeeColleen]

#1177504

I completely agree withy you! After reading and spending sometime on this forum I’ve sudden’t felt empowered to take my treatment into my own hands, ensuring that I get treated the way I am supposed to be treated. I completely agree that people don’t know that we are sick or often forget that we are. People see me now and see my eyes and just think thats how they look, or my professors don’t understand why I am so fidgety and spacey in class.

Thanks so much for your support

Gabe wrote:

DeeColleen… I too am new to this disease and new to this forum. The disease sucks; the forum is the best! I now feel empowered and understood (at least by fellow forumers). Reading this forum helped me to manage my doctors, research my own path, understand what is happening to me, and most importantly insist on things that were not being done by my docs.

It is life altering to go thru this and unlike some diseases where others can look at you and tell you are ‘sick’, this disease (other than eye issues and weight loss/gain) can appear to others as if we are just fine (or maybe a little crazy) and not be as compassionate as they may be with other more obvious or well known illnesses.

Managing your stress levels is extremely important (as I have found). If you can scale back on your course load while you are managing your Graves you will find that makes a big difference.

Best wishes,,,Karen

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