# My Experience with Psychiatric Symptoms and Graves'



## badluckbetty (Jul 4, 2013)

Hello everyone,

I am a new poster and member of this board. I am 19 now and was diagnosed with Graves' Disease when I was 15. Now, I'm about three years post-op after having a full thyroidectomy in March 2010. I really wish I had thought of looking for support while I was going through all of this.

My experience with Graves' was _extremely_ traumatic, especially going through it all at such a young age. I only just recently started talking about it, as I have finally, after three years, *just* gotten my thyroid levels on track through Synthroid. In fact, I've started a blog to try to help myself make sense of it all, thebadluckdiaries.

Anyway, my question to all of you is: have any of you experienced psychiatric symptoms related to your Graves'? While I was going through all this, I had such bad anxiety, depression, paranoia, and OCD that I couldn't go to school or anywhere, really. I was even placed into an outpatient program at a psychiatric hospital. Instead of believing me that it all had to be connected to Graves', everyone just pumped me full of medicine. After gaining 30 pounds due to medicine and months of trying to convince my doctors, they finally took my thyroid out. After a month and a half of recovery, I finally had enough strength to go through my day. And my psychiatric symptoms went away. I stopped taking my medicine, and while I still have mild anxiety and OCD that fluctuates with my levels, it is nowhere near as bad as it was while I still had my thyroid.

Has anyone else dealt with this?


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## Lovlkn (Dec 20, 2009)

I experienced mental issues when they took me from full hyper to full hypo on anti thyroid medications - it resolved shortly after I somewhat stabilized.

Mental issues are real and often ignored my doctors. I cannot tell you how many times my GP tried to prescribe anti depressants for me - I never felt depressed.

Everything and everyone bothered me - I was OCD, paranoid, anxious and angry. I also had a neighbor who was fueling my situation who was literally destroying a home they had just purchased piece by piece - starting with jack hammering the driveway. My therapist actually drove down my street to see why I was so fixated on this individual.

Once they pulled me from the hypo basement my moods improved and I only saw a therapist for 2 months.

I feel my mental symptoms during the initial parts of my thyroid dysfunction destroyed relationships and thankfully my husband is forgiving and stuck around.


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## Andros (Aug 26, 2009)

badluckbetty said:


> Hello everyone,
> 
> I am a new poster and member of this board. I am 19 now and was diagnosed with Graves' Disease when I was 15. Now, I'm about three years post-op after having a full thyroidectomy in March 2010. I really wish I had thought of looking for support while I was going through all of this.
> 
> ...




Absolutely!! I had several very scary episodes and horrible anger. Fortunately, I had the good sense to get counseling in the aftermath because I had no earthly idea how I was going to put my life back together again. It was horrible, horrible.

Here are some interesting links........................

Psychiatric Manifestations of Hashimoto's Thyroiditis
http://www.drrichardhall.com/Articles/hashimoto.pdf

Grave's psychotic
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1324966/

bipolar/thyroid disease
http://www.psycheducation.org/thyroid/introduction.htm

Graves', neuropsychiatric
http://gravesdiseasetimbennie.com/ghdsection3of4part2.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1324966/

PS: I am sorry you had such a horrible time. The worst thing in this life is to not be validated. It just does something to the psyche. Bless your heart!

Things will be good again.


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## badluckbetty (Jul 4, 2013)

Lovlkn said:


> I experienced mental issues when they took me from full hyper to full hypo on anti thyroid medications - it resolved shortly after I somewhat stabilized.
> 
> Mental issues are real and often ignored my doctors. I cannot tell you how many times my GP tried to prescribe anti depressants for me - I never felt depressed.
> 
> ...


Because I was so young at the time, no one really gave me a choice about whether or not to go on medicine. I wish more than anything that I didn't go on it at all. It's sad that these issues are so ignored by doctors especially. Glad to see I'm not the only one who has dealt with this, though.


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## badluckbetty (Jul 4, 2013)

Andros said:


> Absolutely!! I had several very scary episodes and horrible anger. Fortunately, I had the good sense to get counseling in the aftermath because I had no earthly idea how I was going to put my life back together again. It was horrible, horrible.
> 
> Here are some interesting links........................
> 
> ...


Thank you for the welcome! I hope this site will help me make sense of all that has happened to me.

And thank you for the links. I wish I had looked into all of this sooner, but better late than never. I'm still currently decided whether or not I should return to counseling. I've told myself I've been fine for so long that it's hard to admit that I really don't know where to go next. Because of them over-medicating me, I have a bad view of the idea of counseling. But, you've had better experiences, I see. What made you ultimately decide that you should be talking to someone to build your life back up?


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## Andros (Aug 26, 2009)

badluckbetty said:


> Because I was so young at the time, no one really gave me a choice about whether or not to go on medicine. I wish more than anything that I didn't go on it at all. It's sad that these issues are so ignored by doctors especially. Glad to see I'm not the only one who has dealt with this, though.


I can promise you; you are not alone on this board. Many have had same experience and after the holiday weekend is over, I am sure they will be along.

Graves' is a devastating autoimmune disease and it takes a long time to recover from the ramifications of it.

Did you experience suicidal ideation? I did. My situation was that I went undiagnosed for 20 years; it really took a heavy toll on me. And you too; I can tell that just by your postings.


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## badluckbetty (Jul 4, 2013)

Andros said:


> I can promise you; you are not alone on this board. Many have had same experience and after the holiday weekend is over, I am sure they will be along.
> 
> Graves' is a devastating autoimmune disease and it takes a long time to recover from the ramifications of it.
> 
> Did you experience suicidal ideation? I did. My situation was that I went undiagnosed for 20 years; it really took a heavy toll on me. And you too; I can tell that just by your postings.


I didn't have suicidal thoughts when I was actually going through it all, I was mostly just determined to get everyone to listen to me and take out my thyroid so everything could get back to normal.

For anyone that has had the surgery, they know the recovery is pretty awful. I couldn't lift my own head off my pillow for about a month. During that time, when I realized just how clear my brain was and just how much of a waste all of that psychiatric treatment and medicine was, I definitely had a bit of a breakdown. I'm not sure if I was ever fully suicidal, but I definitely was thinking how unfair life was and I was pretty much just disappointed in everyone around me for not believing me, something I still am dealing with three years post-op.


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## DustingMyselfOff (May 17, 2013)

Hi there.... so sorry you had to go through that, but I can totally relate. I have had psychiatric issues for the last 40 years and have been on Prozac, tranquilizers, seen counselors, etc. A lifetime of panic attacks and anxiety that sometimes almost had me housebound. I am scheduled to have my thyroid out in a little over a week and I look forward to seeing how many psychiatric issues disappear in the months following surgery. I was only diagnosed with Graves 7 years ago but I have had a goiter for about 30 years so I have to wonder if my lifetime of anxiety issues is related to that. No, you are not alone with it...... the anxiety and psych symptoms are the worst of my Grave symptoms - I could probably live with all the other symptoms.

Question: why were you unable to life your head off your pillow for a month following surgery? Were there any complications with your surgery? From all I've read, that is not typical. Was it pain in your neck or was it extreme fatigue that caused the problem?

I'm seeing a counselor now and still take an anti-depressant (for anxiety) but wonder if I will be able to give up one or both after surgery. Good luck..... you're heading in the right direction.
Sue


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## Andros (Aug 26, 2009)

badluckbetty said:


> I didn't have suicidal thoughts when I was actually going through it all, I was mostly just determined to get everyone to listen to me and take out my thyroid so everything could get back to normal.
> 
> For anyone that has had the surgery, they know the recovery is pretty awful. I couldn't lift my own head off my pillow for about a month. During that time, when I realized just how clear my brain was and just how much of a waste all of that psychiatric treatment and medicine was, I definitely had a bit of a breakdown. I'm not sure if I was ever fully suicidal, but I definitely was thinking how unfair life was and I was pretty much just disappointed in everyone around me for not believing me, something I still am dealing with three years post-op.


I did mean to say, "Passive suicidal ideation!" I stand corrected on that one!

Well; let's get you on your feet. We need to know if you ever had your FREE T3 tested, what thyroxine replacement are you on and how much.

Here is yet more gobbledygook.....................LOL!!

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

If you don't have sufficient T3; your body and mind won't heal at all well.

http://www.drnorthrup.com/womenshealth/healthcenter/topic_details.php?topic_id=59

So, when you have the time, let us know if you ever had the FREE T3 test and if so, what was the result and the range.


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## Prudence (Oct 30, 2012)

Oh, definitely. It took ages for my Graves' to even be diagnosed, and in that time, docs just kept insisting I was depressed/anxious and threw meds at me like they were candy. I never felt depressed, I was definitely anxious (thanks to the Graves') -my mind seemed to race, it never stopped, and I couldn't concentrate, and while Xanax helped me feel calmer, it didn't stop the other problems at all-my resting heart rate would still be at 120bpm or so, and they just tried to throw even heavier doses of it at me. I tried but felt like a zombie.

Once I got on methimazole? Was like a light switch for me after about a month on the stuff. My mind finally stopped working into overdrive, and I could even read again-I couldn't before because I could not pay attention or absorb the info of what I just read. Even trying to watch a movie was torture-my mind wouldn't let me concentrate on what was going on. I did RAI twice and we're still tweaking the thyroid meds-I'm hyper again and was just bumped down to 88mcg, so we'll see-I still take low dose Xanax when needed, but rarely ever have panic attacks anymore. (was having several daily for months!) I feel doctors do not understand the number a over or under active thyroid can do to your brain.


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## Andros (Aug 26, 2009)

Prudence said:


> Oh, definitely. It took ages for my Graves' to even be diagnosed, and in that time, docs just kept insisting I was depressed/anxious and threw meds at me like they were candy. I never felt depressed, I was definitely anxious (thanks to the Graves') -my mind seemed to race, it never stopped, and I couldn't concentrate, and while Xanax helped me feel calmer, it didn't stop the other problems at all-my resting heart rate would still be at 120bpm or so, and they just tried to throw even heavier doses of it at me. I tried but felt like a zombie.
> 
> Once I got on methimazole? Was like a light switch for me after about a month on the stuff. My mind finally stopped working into overdrive, and I could even read again-I couldn't before because I could not pay attention or absorb the info of what I just read. Even trying to watch a movie was torture-my mind wouldn't let me concentrate on what was going on. I did RAI twice and we're still tweaking the thyroid meds-I'm hyper again and was just bumped down to 88mcg, so we'll see-I still take low dose Xanax when needed, but rarely ever have panic attacks anymore. (was having several daily for months!) I feel doctors do not understand the number a over or under active thyroid can do to your brain.


You may have to have the 3rd. RAI; I did. Advanced cases such as our are hard to kill. LOL!!! They can only give you so much radiation at a time.

Another RAIU would confirm or disconfirm the need for another RAI.


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## badluckbetty (Jul 4, 2013)

DustingMyselfOff said:


> Hi there.... so sorry you had to go through that, but I can totally relate. I have had psychiatric issues for the last 40 years and have been on Prozac, tranquilizers, seen counselors, etc. A lifetime of panic attacks and anxiety that sometimes almost had me housebound. I am scheduled to have my thyroid out in a little over a week and I look forward to seeing how many psychiatric issues disappear in the months following surgery. I was only diagnosed with Graves 7 years ago but I have had a goiter for about 30 years so I have to wonder if my lifetime of anxiety issues is related to that. No, you are not alone with it...... the anxiety and psych symptoms are the worst of my Grave symptoms - I could probably live with all the other symptoms.
> 
> Question: why were you unable to life your head off your pillow for a month following surgery? Were there any complications with your surgery? From all I've read, that is not typical. Was it pain in your neck or was it extreme fatigue that caused the problem?
> 
> ...


I did have a longer recovery than most people I've read. I don't know if it was due to my age or what. I did have the biggest thyroid that my surgeon, who is pretty well known, had seen. I had also only just turned 16 at the time of my surgery. I had a LOT of pain following surgery and by the time about two weeks rolled around I think just literally being in bed had left me super weak. None of my doctors seemed concerned because my case with Graves was so atypical as it was. I don't think it should be such a bad recovery for most. Good luck!


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## AngeInBoston (Oct 14, 2010)

Hi, my daughter was 11 when she was finally diagnosed, after a year of physical and psychiatric symptoms. She was having increasingly severe Graves Rages....tantrums like you wouldn't believe, so bad I actually took her to the Emergency Room several times! She also developed a severe Social Anxiety because she was diagnosed right at the beginning of new school year entering new Middle School, and didn't go to school for several months then was too afraid to ever go, and they were not very helpful. We got her into Therapy, and she takes Lamictal for mood disorders still, even though she doesn't think she needs it, I'm afraid what would happen if we took her off. The social anxiety is better (although she's 14 so still normal teen drama), and I have Hydroxyzine for anxiety, but she hasn't needed it for a long time. She also has Melatonin for bedtime since she's always been a Night Owl like me, but the Graves seemed to make it worse and during school time it's not good to be up until 1:00am and only get 5 hrs sleep.

I personally think everyone should be in therapy, I think it's awesome to have someone to talk to, and then they can see when things are changing when you may not.

Hope this helps!


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## Andros (Aug 26, 2009)

badluckbetty said:


> Thank you for the welcome! I hope this site will help me make sense of all that has happened to me.
> 
> And thank you for the links. I wish I had looked into all of this sooner, but better late than never. I'm still currently decided whether or not I should return to counseling. I've told myself I've been fine for so long that it's hard to admit that I really don't know where to go next. Because of them over-medicating me, I have a bad view of the idea of counseling. But, you've had better experiences, I see. What made you ultimately decide that you should be talking to someone to build your life back up?


Only a Psychiatrist should Rx meds. If you just see a regular Family Counselor, you should do well.

I decided to do that because I was not doing a good job of building my life back up. I had no starting point and no definite goal in mind and felt like I lost control.

You know Humpty Dumpty Nursery Rhyme? That's my personal analogy.


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## Andros (Aug 26, 2009)

AngeInBoston said:


> Hi, my daughter was 11 when she was finally diagnosed, after a year of physical and psychiatric symptoms. She was having increasingly severe Graves Rages....tantrums like you wouldn't believe, so bad I actually took her to the Emergency Room several times! She also developed a severe Social Anxiety because she was diagnosed right at the beginning of new school year entering new Middle School, and didn't go to school for several months then was too afraid to ever go, and they were not very helpful. We got her into Therapy, and she takes Lamictal for mood disorders still, even though she doesn't think she needs it, I'm afraid what would happen if we took her off. The social anxiety is better (although she's 14 so still normal teen drama), and I have Hydroxyzine for anxiety, but she hasn't needed it for a long time. She also has Melatonin for bedtime since she's always been a Night Owl like me, but the Graves seemed to make it worse and during school time it's not good to be up until 1:00am and only get 5 hrs sleep.
> 
> I personally think everyone should be in therapy, I think it's awesome to have someone to talk to, and then they can see when things are changing when you may not.
> 
> Hope this helps!


You are an "Angel Mom!"


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## Prudence (Oct 30, 2012)

Andros said:


> You may have to have the 3rd. RAI; I did. Advanced cases such as our are hard to kill. LOL!!! They can only give you so much radiation at a time.
> 
> Another RAIU would confirm or disconfirm the need for another RAI.


Oh yeesh, it took me four months of prodding them (and this was when I was on_ no_ medication) to finally get them to do a second RAIU, I'd hate to see how long it would take for them to do another one! Right now, they're still convinced it's just too much medication, but so, so odd that I went so hypo to so hyper so quick-they acknowledged that they never saw anyone do a 180 as quick as I did, but yet don't seem to get that maybe I just don't need the meds at all... or this 2nd RAI just didn't work. They lower the meds a bit, check me after a bit, see that I'm more hyper than before....and then just lower it by a teeny amount. wash, rinse, repeat. I get wanting to be careful hence the small changes, but yuck. You'd think they'd know by now my thyroid is stubborn!

To badluckbetty-I agree with maybe a family counselor, if you feel comfortable. If you don't feel like you need meds, you shouldn't feel pressured into taking any. Just someone to vent to can help.


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## Exiledmoths (Aug 22, 2013)

Yes. To make it worse I've always had anxiety and a phobia (emetophobia). Because of this once I started having 10-11 "panic attacks" a day all of my doctors just assumed I was fine. I too had to leave school because of it. Turns out my panic attacks were really my heart rate going sky high and my sugar dropping, but anxiety would spark it. It turned into graves making anxiety worse and anxiety making graves worse. I went misdiagnosed for years up until earlier this year because no one would listen to me. By the time I got someone to listen 5 of my teeth had turned to dust (Never had a cavity in my life), I broke a rib from a hug, I weighed 86 lbs, got out of breath walking less then a block, and heart rate of 180. I am still going through the process with no real treatment. I was prescribed beta blockers but I couldn't tolerate the lightheadedness. So trust me I understand. Although I am a few years older (21) I have been going through this for years and no one would listen. Even at the emergency room with my heart rate at 175 the doctor said "We only treat biological problems" because it was already on record (because in the beginning I thought It was panic attacks too before it got so bad) that I had anxiety. Its terrifying for me to go through without support so young, I'm still being screwed around. I want to get better already! When I go into super duper hyper mode (which I later found out was thyroid storms) I even have problems seeing and hearing things (which they all said was borderline personality disorder), but it isn't.

I'm happy to hear you are finally feeling better, and no, you're not alone.


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