# Newest member of the club!



## GRAVEABOUTGRAVES (May 12, 2012)

Hi I'm Lex,

I'm 39 yrs old and would say I'm have been pretty healthy and very active until the past few months.

I was just diagnosed with Graves last week. I had all the typical symptoms; anxiety, heart palpitations, tremors, and severe fatigue. For weeks I just thought it was life..and didn't think much about it....or at least I tried not to think much about it. I didn't have any weight loss either, instead my appetite was out of control, and I stopped working out completely because I was so tired. I think I gained about 5 lbs over a few month period.

What finally brought me to the Dr. was a constant headache that just wouldn't go away. I had a CT scan which came back clean and then we did blood work. This is when my GP discovered my thyroid levels were high, so off to the endocrinologist I went.

The Endo ordered more blood work and did an ultrasound of my thyroid and said it was either thyroiditis or Graves but needed me to complete a few more tests before confirming. The next step was the radioactive iodine uptake scan. I was really hoping for door #1...

I did the first scan after 6 hrs with a 38% uptake and at 24hrs it was 62%. They also did the imaging which showed a nice dark butterfly looking pic. Oh and the blood work came back that I also had the Graves antibody. 
It was obvious, Door #2-what have you won? GRAVES DISEASE!

So...now comes the treatment question. My Dr. suggested the antithyroid medication before going the "nuke your thyroid" road. I'm trying to read as much as I can but its overwhelming!

I have to admit that I'm a little nervous about the antithyroid med's, seems like many people gain a ton of weight on it!! Is that because they are just putting back all the weight they lost? I never lost any weight while I was/am hyper so would that have any effect?

Any insight, suggestions or general information would be great!
Thank you!


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## JPGreco (Mar 2, 2012)

I think I put on a couple of lbs in a couple of weeks, but it was definitely weight I had lost cause of the thryoid problem. Unfortunately I am no longer on the meds due to an allergic reaction and I'm contemplating which road to take now (trying to avoid the nuclear option). Good luck with everything.


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## webster2 (May 19, 2011)

Hi, and welcome. ATD's are a good place to start. Some people have had great luck with them. Are you on a beta blocker too?

I have lost and gained weight while being hyper, it is a strange thing how that can work.

Best of luck to you with determine what treatment will work for you.


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## GRAVEABOUTGRAVES (May 12, 2012)

JPGreco said:


> I think I put on a couple of lbs in a couple of weeks, but it was definitely weight I had lost cause of the thryoid problem. Unfortunately I am no longer on the meds due to an allergic reaction and I'm contemplating which road to take now (trying to avoid the nuclear option). Good luck with everything.


Thank you! Good luck to you as well


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## GRAVEABOUTGRAVES (May 12, 2012)

webster2 said:


> Hi, and welcome. ATD's are a good place to start. Some people have had great luck with them. Are you on a beta blocker too?
> 
> I have lost and gained weight while being hyper, it is a strange thing how that can work.
> 
> Best of luck to you with determine what treatment will work for you.


The Dr. gave me a prescription for the beta blocker but I haven tried it yet. Just nervous to try the ATD's because I have read so many negative things!
A friend told me that is it possible to treat by changing diet drastically. Has anyone tried or heard of this? 
Thank you!


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## webster2 (May 19, 2011)

What negative things have you heard about ATD's? I haven't heard of any diet reversing Graves, but I am no expert.


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## GRAVEABOUTGRAVES (May 12, 2012)

webster2 said:


> What negative things have you heard about ATD's? I haven't heard of any diet reversing Graves, but I am no expert.


The negative info I have read seem to be tied to going back and forth with levels...which seems to take some time and also the weight gain. I have a friend who is a natural homeopathic Dr. who thinks that with a drastic change in diet it can at least reduce thyroid levels....


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## webster2 (May 19, 2011)

Hmmm..I would like to know about the drastic dietary changes. Kind of too late for me but still interesting.


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## JPGreco (Mar 2, 2012)

I have seen a couple of websites from "Dr.'s" that claimed to cure graves through diet changes. However they offered no scientific data on the subject unless you by there stuff of pay for a consultation.

However, I have found clinical studies done that are in medicine journals, so they are at least reputable sources, that discuss the affects of several things on different aspects of graves disease, from the reduction of antibodies, prevention of TSH/TSI bonding to the thyroid to make T4, and the prevention of cells to take in T3.

Since I am allergic to the medication I am going to contact a homeopath to discuss these findings. I figure whats a couple of months experimenting with an alternative source before committing to surgery or RAI?


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## Andros (Aug 26, 2009)

GRAVEABOUTGRAVES said:


> Hi I'm Lex,
> 
> I'm 39 yrs old and would say I'm have been pretty healthy and very active until the past few months.
> 
> ...












Glad you are here but sorry for the reason why. I and many others gained weight w/hyper/Graves'! You are not alone.

You should give the antithyroid a fair chance; otherwise you will always wonder. If I could do it over, I would go straight on to surgery and bypass all that. Antithyroid just made me sicker but in a different way and my weight fluctuated a lot mostly leaning to the weight gain side. Wah!

How are your eyes?


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## GRAVEABOUTGRAVES (May 12, 2012)

I think I am going to start with the ATD's next week and just start slow/low. I am also meeting with the homopathetic Dr. next week...I figure changing my diet is a good idea anyway.

So far my eyes seem fine....


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## JPGreco (Mar 2, 2012)

I would be interested in hearing what the homeopath has to say, just to help further some of my current research. Thanks.


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## GRAVEABOUTGRAVES (May 12, 2012)

I will post a full report after the visit!


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## JPGreco (Mar 2, 2012)

I appreciate it, though I'm not holding my breath that I will be able to avoid surgery or RAI (prefer the surgery).


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## I DClaire (Jul 31, 2011)

Like Webster2 and Andros, I've been all over the place with my weight. I was hyperthyroid (with nodules) for three years but gained weight. Then, for some odd reason, I lost a lot of weight just before I had my thyroid removed. I kept the weight off for a long time but recently (6-8 weeks), I feel like I'm self-inflating...and I am not a happy camper!

I took anti-thyroid medication for several months but I kept feeling horrible, in fact I felt like I was getting progressively worse even though I was "biochemically euthroid" - with the medication my test results were normal. I initially asked if I could have RAI but was told no because of the nodules - but I could, and did, have surgery. I had five or six rounds of ultrasound and nuclear uptake scans, etc., but then my surgeon was shocked at what he found??? I'll always wonder about that!

Things have been tedious since surgery BUT I agree with Andros, had I known then what I know now, I would have asked for surgery the first time I heard the word nodule! Instead I spent three years being bounced from one specialist to another...not to mention that my "biochemically euthroid" thyroid turned out to contain a small papillary cancer.

It's been right at eight months since my surgery and I am just now feeling well enough that I've regained hope that maybe I will feel the energy and stamina I used to take for granted once again.


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## GRAVEABOUTGRAVES (May 12, 2012)

I DClaire said:


> Like Webster2 and Andros, I've been all over the place with my weight. I was hyperthyroid (with nodules) for three years but gained weight. Then, for some odd reason, I lost a lot of weight just before I had my thyroid removed. I kept the weight off for a long time but recently (6-8 weeks), I feel like I'm self-inflating...and I am not a happy camper!
> 
> I took anti-thyroid medication for several months but I kept feeling horrible, in fact I felt like I was getting progressively worse even though I was "biochemically euthroid" - with the medication my test results were normal. I initially asked if I could have RAI but was told no because of the nodules - but I could, and did, have surgery. I had five or six rounds of ultrasound and nuclear uptake scans, etc., but then my surgeon was shocked at what he found??? I'll always wonder about that!
> 
> ...


I'm glad to hear you are finally feeling better...I wish more people would chime in that the ATD's worked great and that they were happy about using them...I could use some encouragement! SIGHHHHHHHHHHHHH


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## Andros (Aug 26, 2009)

GRAVEABOUTGRAVES said:


> I think I am going to start with the ATD's next week and just start slow/low. I am also meeting with the homopathetic Dr. next week...I figure changing my diet is a good idea anyway.
> 
> So far my eyes seem fine....


Graves' is a life-threatening disease when left untreated. Take your Anti-thyroid and see where that leads and by all means take that beta-blocker! Many of us have damaged hearts from Hyperthyroid/Graves'. My doctor did nothing to protect my heart. Now I have mitral valve prolapse.

Listen to the voice of experience.

If you decide that anti-thyroid med is not for you, you can always take a different direction.


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## GRAVEABOUTGRAVES (May 12, 2012)

Andros said:


> Graves' is a life-threatening disease when left untreated. Take your Anti-thyroid and see where that leads and by all means take that beta-blocker! Many of us have damaged hearts from Hyperthyroid/Graves'. My doctor did nothing to protect my heart. Now I have mitral valve prolapse.
> 
> Listen to the voice of experience.
> 
> If you decide that anti-thyroid med is not for you, you can always take a different direction.


Weird I have had a MVP for years..ok started the beta blockers last night. Once you take them is there a big difference with how you feel? I have the prescription for the ATD. Do you know how the amount if determined?

Thanks for the info, much appreciated...


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## JPGreco (Mar 2, 2012)

I felt the beta blockers pretty quickly to the point if I miss a dose I feel that affect too.

The ATD dose is dependent on the severity of your symptoms. I was put on 40mg(tapazole) a day, which is on the high side of dosing.


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## Andros (Aug 26, 2009)

GRAVEABOUTGRAVES said:


> Weird I have had a MVP for years..ok started the beta blockers last night. Once you take them is there a big difference with how you feel? I have the prescription for the ATD. Do you know how the amount if determined?
> 
> Thanks for the info, much appreciated...


With ATD, doc usually starts the patient on a low dose, monitors and raises or reduces the dose as needed. Other factors may enter in such as weight and how advanced is the hyper.

What is your starting dose and what is the name of the drug?

Graves' is insidious; in my case it was going on for years flitting back and forth from hypo to hyper until it became full-blown Graves'.


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## GRAVEABOUTGRAVES (May 12, 2012)

JPGreco said:


> I would be interested in hearing what the homeopath has to say, just to help further some of my current research. Thanks.


So the homeopath said that western medicine/dr's are way too myopic in their diagnosis or more importantly in their treatment. He said that if your body is attacking itself like it does with Graves that is might be a combination of digestive and adrenal issues and stress levels. He suggested I start with a paleo type diet (gluten being the big issue) and see how I feel. In general it sounds like a lifestyle change...


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## GRAVEABOUTGRAVES (May 12, 2012)

Andros said:


> With ATD, doc usually starts the patient on a low dose, monitors and raises or reduces the dose as needed. Other factors may enter in such as weight and how advanced is the hyper.
> 
> What is your starting dose and what is the name of the drug?
> 
> Graves' is insidious; in my case it was going on for years flitting back and forth from hypo to hyper until it became full-blown Graves'.


So looks like the he prescribed 10MG twice a day. Does that sound normal?


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## webster2 (May 19, 2011)

GRAVEABOUTGRAVES said:


> So looks like the he prescribed 10MG twice a day. Does that sound normal?


Yes, that is a good place to start.


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## GRAVEABOUTGRAVES (May 12, 2012)

I feel like I just need to vent a little. I am still feeling so run down and my headaches came back and just have that feeling general malaise. I feel like people don't understand because I look fine on the outside...

Most of my friends and family that know about it are like, "well at least its not something worse" or "well at least its treatable" I feel like no one really understands how much this sucks and how stressful it really all is, especially for someone like me that has been healthy my entire life.

I just started the ATD's last night and fingers crossed that I will feel better...


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## Andros (Aug 26, 2009)

GRAVEABOUTGRAVES said:


> So looks like the he prescribed 10MG twice a day. Does that sound normal?


It sure does. They have to consider the state of your hyper and weight. That sounds appropriate to me.

Have you taken it yet? If so, how do you feel?


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## GRAVEABOUTGRAVES (May 12, 2012)

Andros said:


> It sure does. They have to consider the state of your hyper and weight. That sounds appropriate to me.
> 
> Have you taken it yet? If so, how do you feel?


I started the beta blockers and I don't really feel much different..maybe a bit less anxious? I just started the ATD's last night I would assume it will take a couple weeks for those to kick in.

My headache came back with a vengance Monday night...I had gone almost a week without having a bad one and then Monday and tuesday it hit. I'm hoping the meds help with that too?!


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## Andros (Aug 26, 2009)

GRAVEABOUTGRAVES said:


> I started the beta blockers and I don't really feel much different..maybe a bit less anxious? I just started the ATD's last night I would assume it will take a couple weeks for those to kick in.
> 
> My headache came back with a vengance Monday night...I had gone almost a week without having a bad one and then Monday and tuesday it hit. I'm hoping the meds help with that too?!


The ATD should kick in quickly. They have a short half-life coming and going.

Hope you feel better real soon!


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