# 2nd time around...Decisions Decisions



## AussieGirl (Feb 28, 2010)

Hello everyone!

Like the few posts before this one, I'm really glad to have found this site. I'm in desperate need of advice and I think people on this forum are the best people to ask - at least you know what I'm going through!

I'm 41 years old. I was diagnosed with Graves about 6 years ago. Symptoms included racing and irrregular heart beat, energy rollercoaster (full of energy followed by no energy then full energy etc), weakness in arms and legs, muscle loss, and really bad mood swings (my poor husband!).

I took medication for about 2 and a half years. The first med (can't remember what it was called) made me loose 50% of my hair so switched to Propylthiouracil. Kept feeling nauseated but put up with it until the Graves went away. That was about 3 years ago.

Have just found out it's back. Was in denial about the symptoms but the blood test confirmed it.

My endocrinologist has previously suggested radioactive iodine to destroy part of my thyroid, but having read about how 80% + of people who choose this treatment end up with an underactive thyroid really put me off doing this - why trade in one problem for another? I don't see the point.

Really interested in your thoughts/advice. 
Have you heard of something that works for treating it without destroying it?
How bad is it if you end up with an underactive thyroid?

Thanks in advance your your feedback!


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## Andros (Aug 26, 2009)

AussieGirl said:


> Hello everyone!
> 
> Like the few posts before this one, I'm really glad to have found this site. I'm in desperate need of advice and I think people on this forum are the best people to ask - at least you know what I'm going through!
> 
> ...


My thoughts are that it might be better to have surgery rather than "RAI" to be sure you don't have cancer of the thyroid and also to NOT trigger the eye involvement.

Most of us here find it much easier and more effective to take thyroxine replacement. I know I feel wonderful every single day and have absolutely no regrets except that I did get my thyroid zapped and in hindsight, I would rather have had surgery.

The decision is a personal one. We support you whatever you decide.


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## sidpb (Jan 2, 2010)

It's my understanding there is no cure if the meds don't work. I personally could not take them as they messed with my liver. I opted for the surgery. It was hardly more painful than a paper cut, REALLY! I took no pain meds after spending the night in the hospital except some Children's Motrin upon my arrival home and put ice packs on regularly for the swelling for about 5 days. No Tylenol or anything. I realize this is not always the case but they only cut skin so no muscles are involved and the recovery is as quick or quicker than RAI without being confined or possibly having to do it again and again. As Andros said, it's a personal preference but I have been riding my horses and doing everything I would normally do after about 5 days post op. Did not loose any of my voice that I can tell (been 11 days since surgery). I do have pictures of my scar about 10 days out if anyone is interested. I should add that I have just started the replacer and feel wonderful. Have ever since my surgery! Welcome to the board and Good luck!


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## AussieGirl (Feb 28, 2010)

Hi Andros,

Thanks for your comments. Just curious about what you mean by "also to NOT trigger the eye involvement." Didn't think things could get even worse than this...


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## AussieGirl (Feb 28, 2010)

Hi Sidpb, thanks for your comments. I'm a bit freaked out at the moment. My endo appointment is on Wednesday so just trying to get info so at least I know what to ask the doctor. Based on the conversations we had last time, I'm anticipating what his recommendation will be.

Glad to hear you are riding horses again. What is breaking my heart and stressing me out at the moment is the idea of not being able to fly. Just like horse riding, it's not the best thing to be doing when one is light headed, dizzy and has a racing pulse. I can't imagine life without flying though so just need to get better asap.

I would like to know more about the surgery (anticipating Wednesday's appt). Not sure if I'm ready to see any photos though. Will let you all know how I go on Wednesday. Wish me luck!


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## Andros (Aug 26, 2009)

AussieGirl said:


> Hi Sidpb, thanks for your comments. I'm a bit freaked out at the moment. My endo appointment is on Wednesday so just trying to get info so at least I know what to ask the doctor. Based on the conversations we had last time, I'm anticipating what his recommendation will be.
> 
> Glad to hear you are riding horses again. What is breaking my heart and stressing me out at the moment is the idea of not being able to fly. Just like horse riding, it's not the best thing to be doing when one is light headed, dizzy and has a racing pulse. I can't imagine life without flying though so just need to get better asap.
> 
> I would like to know more about the surgery (anticipating Wednesday's appt). Not sure if I'm ready to see any photos though. Will let you all know how I go on Wednesday. Wish me luck!


We all wish you tons of luck and all the best. If you can crawl to the PC anytime soon after Weds., please let us hear from you.

Hope and pray all goes well. I am sure it will.


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## AussieGirl (Feb 28, 2010)

Back from the endocrinologist. He wants to get things under control before we discuss next steps (mentioned RAI). Will go back in a month.

I'm now on 100mg of propylthiouracil (since Monday pm) as well as the 25mg of atenolon (since Saturday pm) to slow my heart rate. Seems to be working, but...

I have been getting excrutiating pain on the left side of my face, into my gums and in my jaw since I started on the propylthiouracil. It comes on really strong for a few minutes, then eases and leaves a dull ache. It's been happening about every hour or so for the last couple of days. GP thinks it could be Trigeminal Neuralgia. Both GP and Endo think it's not related to the graves or the meds. Has anyone experienced anything like it?


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## Andros (Aug 26, 2009)

AussieGirl said:


> Back from the endocrinologist. He wants to get things under control before we discuss next steps (mentioned RAI). Will go back in a month.
> 
> I'm now on 100mg of propylthiouracil (since Monday pm) as well as the 25mg of atenolon (since Saturday pm) to slow my heart rate. Seems to be working, but...
> 
> I have been getting excrutiating pain on the left side of my face, into my gums and in my jaw since I started on the propylthiouracil. It comes on really strong for a few minutes, then eases and leaves a dull ache. It's been happening about every hour or so for the last couple of days. GP thinks it could be Trigeminal Neuralgia. Both GP and Endo think it's not related to the graves or the meds. Has anyone experienced anything like it?


Sadly; that is probably peripheral neuropathy. I had the same and so have others here. Starting on the anti*thyroid med may have triggered that. Why? Because the propylthiouracil is going to take you through some uncomfortable stages to get you calmed down.

Here is some info on thyroid/neuro...
http://emedicine.medscape.com/article/1172273*overview

And by the way, this doc is wise.


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## AussieGirl (Feb 28, 2010)

hi everyone,

Thought I'd give you an update on what's been happening. Things are getting better - the neuralgia went away after a couple of weeks, thank goodness for that! Turns out it _may_ have been due to one of my teeth. Had a root canal and the pain eased after a few days so perhaps not related to GD or PTU.

Don't think I had posted my initial results. 
THS 0.03L Units mU/L Ref Range 0.35 - 5.60
FT4 26.9H Units pmol/L Ref Range 7.5 - 21.1
FT3 11.9H Units pmol/L Ref Range 3.8 - 6.0

Now looking much better at 
THS < 0.03 Units mU/L Ref Range 0.50 - 4.00
FT4 18.1 Units pmol/L Ref Range 10.0 - 19.0
FT3 7.4 Units pmol/L Ref Range 3.5 - 6.5

Not sure why the reference ranges are different. The initial test were done at the emergency departement (heart was going nuts). The others were done at a path lab.
The THS is also lower ??

So another month of PTU :sick0025:. Then back to the Endo.

Spoke to the endo about surgery vs RAI. He supports both. I'm still leaning towards the surgery (thanks to everyone who has posted on this topic - very helpful when trying to make the decision). I just want to get back to normal asap and he mentioned that RAI can take a while to settle (also confirmed by your posts).

For those who have had surgery, how long did it take to get the thyroid replacement dosage right? How bad is it while it's getting worked out?

Thanks in advance for you comments!


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## Andros (Aug 26, 2009)

AussieGirl said:


> hi everyone,
> 
> Thought I'd give you an update on what's been happening. Things are getting better - the neuralgia went away after a couple of weeks, thank goodness for that! Turns out it _may_ have been due to one of my teeth. Had a root canal and the pain eased after a few days so perhaps not related to GD or PTU.
> 
> ...


You were really hyper! Are you feeling a tad better now? Graves' is awfully hard on the teeth and gums so stay on top of your dental hygiene as best you can.

Wow!! An Endo who supports both!! That is awesome and very very rare!

Different labs use different ranges. You TSH did not budge but it will. There is a lag time between the Frees and the TSH (sometimes.)

Thanks for the update and let us know what you decide. Others should be along to share their surgery experience.


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## hillaryedrn (Dec 14, 2009)

Wow! Sounds like you have a good Endo! That makes all the difference in the world! Hmmm, wonder why your TSH is going down? Glad the other numbers are heading in the right direction, but still. How are you feeling now?


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## AussieGirl (Feb 28, 2010)

Thanks for your comments Andros and Hillaryedrn!

Indeed, I'm very lucky to have such a good Endo! My GP is amazing as well. It's thanks to her caring and persistence that we found out I had Graves in the first place. Thank goodness she didn't dismiss my tired, cranky and paranoid GD personality for me!

I'm feeling very much 'over it' at the moment. I just want to feel better and be myself again. It's quite different from what I remember from having GD the first time. Seems like it's one thing after another going wrong with me.

To make things worse, I feel like I'm painful to be around as well (I dread friends asking me 'how are you?' Sometimes it's easier to just say 'fine'). Just 41 but feel like 141. Was in bed with a terrible cold all weekend, sore throat, congested etc. Cold & Flu tablets helping. I'm usually really healthy and don't get sick, after a few months of this, I now keep wondering what will be wrong me me next LOL!

At least there's a light at the end of the tunnel with this. I just have to keep reminding myself of that when it starts to get on top of me.


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## Andros (Aug 26, 2009)

AussieGirl said:


> Thanks for your comments Andros and Hillaryedrn!
> 
> Indeed, I'm very lucky to have such a good Endo! My GP is amazing as well. It's thanks to her caring and persistence that we found out I had Graves in the first place. Thank goodness she didn't dismiss my tired, cranky and paranoid GD personality for me!
> 
> ...


{{{{AussieGirl}}}} Hope you are feeling better today and yes; there is light at the end of the tunnel.


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## AussieGirl (Feb 28, 2010)

Thank you Andros. Sounds like a walk in the park compared to what you've been through (was reading the other post on TED). My gosh, I don't know how you got through all that, how strong you must be! You are truly inspirational! Thank you so much for sharing your story.


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