# What questions should I be asking the Endo?



## new2this (Oct 7, 2011)

As some of you know, I've just been diagnosed with Graves Disease. I didn't know I had it and I believe I had Thyroid Storm.

I have an appointment with the Endo to discuss my results on Thursday.

I want to be informed and be able to make a good decision about what kind of treatment to pursue. Please let me know what you think.


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## Andros (Aug 26, 2009)

new2this said:


> As some of you know, I've just been diagnosed with Graves Disease. I didn't know I had it and I believe I had Thyroid Storm.
> 
> I have an appointment with the Endo to discuss my results on Thursday.
> 
> I want to be informed and be able to make a good decision about what kind of treatment to pursue. Please let me know what you think.


If I could do it all over again and I surely would not want to; I would have surgery ASAP! I would not even consider any other option.

Anti-thyroid meds only extended my misery and suffering. Then I was offered only RAI. I did not know much then. I had to have RAI 3 times!!! Aaaaaaaaaaaaargh.

And I will never know if I had cancer or not.

Now bear in mind, this is all one person's humble opinion only based on my own experience.


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## new2this (Oct 7, 2011)

Andros said:


> If I could do it all over again and I surely would not want to; I would have surgery ASAP! I would not even consider any other option.
> 
> Anti-thyroid meds only extended my misery and suffering. Then I was offered only RAI. I did not know much then. I had to have RAI 3 times!!! Aaaaaaaaaaaaargh.
> 
> ...


Thanks Andros. The wealth of information online is staggering. Some people suggest getting it cut out, others suggest meds, others say RAI (well, most don't say RAI) others say take the natural approach. It's kind of confusing where to start. Any others that would like to chime in?


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## new2this (Oct 7, 2011)

Andros, could you tell me a bit about your story?


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## miltomeal (May 17, 2011)

First, you need to get some lab results (make sure to get copies of your labs and post the results with ranges), run a RAIU to see if there is the potential for cancer, and maybe an ultrasound as well. depending on your tests, there may be no option besides surgery for you. Do you have a rapid heartbeat? heart palpitations? You could probably do well to go on a beta blocker until this gets resolved, this will help protect your heart. 
and i would make sure to take care of yourself thru this process. getting well doesn't happen overnight, so pamper yourself here and there, be patient, yoga and Qi-gong is what saved me throughout this process and it is now a life long practice that i am hoping to use and help others going through their own difficult times. 
Everyone goes thru this a little differently, you decide what direction you want to move, so continue to educate yourself and those close to you.

best of luck and continue to talk on this forum, there are a lot of knowledgeable and caring people here to help!

i'm at the titration process after RAI right now and looking up!


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## new2this (Oct 7, 2011)

miltomeal said:


> First, you need to get some lab results (make sure to get copies of your labs and post the results with ranges), run a RAIU to see if there is the potential for cancer, and maybe an ultrasound as well. depending on your tests, there may be no option besides surgery for you. Do you have a rapid heartbeat? heart palpitations? You could probably do well to go on a beta blocker until this gets resolved, this will help protect your heart.
> and i would make sure to take care of yourself thru this process. getting well doesn't happen overnight, so pamper yourself here and there, be patient, yoga and Qi-gong is what saved me throughout this process and it is now a life long practice that i am hoping to use and help others going through their own difficult times.
> Everyone goes thru this a little differently, you decide what direction you want to move, so continue to educate yourself and those close to you.
> 
> ...


Thank you... I had a RAIU and I am discussing the results with the endo on Thursday.
I was definitely having heart palpitations, and psychosis. I am on a beta blocker right now. I was on ATD but my doctor told me to stop taking it because I thought I was having an allergic reaction to it. Or maybe my thyroid is just getting worse. My face and mouth are tingly and my tongue feels huge and my throat is closing up.

I am having troubles being patient... I am sure I'm going to be broke soon  I feel weaker by the day and am nauseated. I think that may be from the drugs.

I will definitely try to relax more, but I can't help being on the computer all day looking this stuff up... I need to know how to get better.


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## webster2 (May 19, 2011)

new2this said:


> As some of you know, I've just been diagnosed with Graves Disease. I didn't know I had it and I believe I had Thyroid Storm.


This was me exactly, not too long ago. I took the ATD's and beta blocker too. I wanted to believe they helped, but I am not sure if they did. I was still a mess while taking them. Not a great time at all for me, the hubby, or anyone I was in contact with, I am sure of this.

Know what your lab results mean so you can discuss and understand what the endo is talking about with you. Getting an RAIU and possibly an U/S are probably a good idea. Knowing what options are available to you is helpful too.

I chose surgery, and decided to skip the FNA, as I learned Graves often distorts the results. The ultrasound report I received stated that I had " long untreated autoimmune disease" and I couldn't wait to get rid of the target (thyroid).

I wish you all the best. It does get better, it may not seem like it now, but it will.


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## new2this (Oct 7, 2011)

webster2, I did do a RAIU, but I didn't get the ultrasound. Are you happy with getting the surgery? Anyone else?


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## new2this (Oct 7, 2011)

Thanks for the information everyone... writing this down.


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## new2this (Oct 7, 2011)

I forgot to mention, I think my endo is pushing for RAIU treatment.


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## Andros (Aug 26, 2009)

new2this said:


> Thank you... I had a RAIU and I am discussing the results with the endo on Thursday.
> I was definitely having heart palpitations, and psychosis. I am on a beta blocker right now. I was on ATD but my doctor told me to stop taking it because I thought I was having an allergic reaction to it. Or maybe my thyroid is just getting worse. My face and mouth are tingly and my tongue feels huge and my throat is closing up.
> 
> I am having troubles being patient... I am sure I'm going to be broke soon  I feel weaker by the day and am nauseated. I think that may be from the drugs.
> ...


Yep; I had psychosis as well! Oh, Lord!! What a horrible disease Graves' is.

If not for the Thyroid Storm, I would have never been diagnosed. I was ill for 20 years and during that time, I sure did not get a lot of sleep. Sleep deprivation is the worst.

I had gone to sooooooooooooooooooo many doctors in those 20 years. I was treated horrible and told nothing was wrong with except that it was all in my head. I had counseling for 2 years in the aftermath. I never wrote my story because of "flashbacks" and "anger!" It is better for me to keep on keeping on and helping others.

Just typing the above has me upset. The worst part now is I don't trust doctors........................at all.

Huggles,


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## Andros (Aug 26, 2009)

miltomeal said:


> First, you need to get some lab results (make sure to get copies of your labs and post the results with ranges), run a RAIU to see if there is the potential for cancer, and maybe an ultrasound as well. depending on your tests, there may be no option besides surgery for you. Do you have a rapid heartbeat? heart palpitations? You could probably do well to go on a beta blocker until this gets resolved, this will help protect your heart.
> and i would make sure to take care of yourself thru this process. getting well doesn't happen overnight, so pamper yourself here and there, be patient, yoga and Qi-gong is what saved me throughout this process and it is now a life long practice that i am hoping to use and help others going through their own difficult times.
> Everyone goes thru this a little differently, you decide what direction you want to move, so continue to educate yourself and those close to you.
> 
> ...


How ironic that you posted this. I have been doing yoga for years. Just by instruction at the gym. Never embraced the "real meaning" behind it.

The other night I had a dream and the word Namaste', Namaste' keep on coming up in my dream! I don't know where I heard that word although I do have some friends from India. It is not just a simple greeting. It has a very very deep and profound meaning.

Anyway; I said, "Let me look this up!" I was floored. I have spent the afternoon learning about Chakra etc.. What a life. I am big on dreams though. I know for a fact when "I" have a dream, there is a reason.

Thought you would be interested in that little story.


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## webster2 (May 19, 2011)

I think the sleep deprivation only adds to the viscous cycle. I had the psychosis too. Graves is horrible, I thought it was menopause from hell, and I was stuck there. I am very happy since the surgery. I feel in control of my emotions, no more mood swings. the other symptoms have subsided as well. Life is good.


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## new2this (Oct 7, 2011)

Thank you guys so much... at least I feel more "normal" I'm stressing out about the decision though


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## webster2 (May 19, 2011)

Do you mean the decision between RAI and surgery for Graves? That's a tough call. After hearing Andros' story, of 3 times for RAI, that kind of sealed what ever slim consideration I gave it, which was not much. I knew in my gut I had cancer, so it was an easy decision. I think there is a section in the Graves Disease discussion on RAI. You might find some stories there too. Best wishes with your research!


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## miltomeal (May 17, 2011)

new2this~
Yes! graves/hyper is very hard to deal with...all the emotions, anxiety, frustration, loss of concentration, muscle wasting and weakness, everything just takes it out of you. and everyone has a different reaction to the disease, and the treatment. It looks like tomorrow is your endo appt, i am hoping that you can lessen a little of the stress of this today whatever way works best for you. Take just a few minutes for yourself here and there, or if you have the time, a little longer doing whatever makes yourself feel good!!! 
One thing that made my time harder was the fact that my endo gave me ativan anti-anxiety to help deal with it all. When i wanted to and was ready to start to get off that med, my body, mind, and emotions went straight back to where i was before i went on them. just trying to decrease the dose was very difficult for me. i was eventually able to get off the anti-anxiety with the help of some nervous support herbs from a friendly herbalist i know, plus all the practice that has come to me. But this is one area that i would look for something different than prescription meds to help.


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## new2this (Oct 7, 2011)

Thank you MiltoMeal I appreciate it! And Webster2 thanks as well


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