# Grr....you know what makes me mad??



## pandatx (Mar 27, 2013)

So, my Endo that is wanting me to rush into treatment (and leaning to RAI --which I am NOT rushing into) spoke with me on the phone today. I asked about the Graves Ophtamology and should I maybe see an opthamologist?
She said no. They wouldn't do anything for me unless it was bad. I said "well maybe just to get established and be watched"? Her: No. Me: "I read that you shouldn't do RAI until you make sure you don't have the eye involvement (blood work)". She replied.....wait for it..... that *IT DOESN'T MATTER*.

Yeah, you heard me right. It doesn't matter b/c even if it flares it up it goes back to normal in a couple of months. That the RAI isn't that big of a deal. She decides what dosage should be compounded and I take the pill at her office and go home and just stay away from my family for 5 days.

No big deal? It seems like a big deal to me. And yes, maybe that is what I'll end up doing in the future (but I doubt it). But to discount questions about the eye involvement and the RAI, that makes me a little uncomfortable. Oh wait, and mad. Don't freaking discount my questions. Grrrr.


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## Lovlkn (Dec 20, 2009)

Do you need a referral or can you go to a surgeon?

This endo is narrow minded - that's being nice.

I found my own surgeon and never went to the one the endo recommended - an older more experienced surgeon due to his age making a 3" or more incision vs young surgeon with latest training - still doing 4-5 per wk but trained on minimally invasive - my incision is 3/4"


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## JPGreco (Mar 2, 2012)

Thats what I want Lovlkn if I end up going the surgery route... lack of insurance though may make that decision for me though

panda, trust yourself.


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## StormFinch (Nov 16, 2012)

Panda run, don't walk, to another doctor. In my honest opinion there is something off with this one. If you need time to look and your numbers are high, ask for a round of anti-thyroid and then start tracking down someone who thinks it does matter.


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## next2normal (Apr 10, 2013)

I'm with StormFinch, time for a new doctor NOW


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## Tiredofgraves (Apr 12, 2013)

Hello.......I, agree with everyone on this post.....I had the same exact issues with, my endo she insisted that I take the RAI since day one...until she realize that my levels was not coming down plus I have severe eye involvement and I was scared that the RAI will make it worse (I did my research)....so she realize that surgery was my best option plus I didn't want RAI because I have 3 small children......you have to be your own advocate when it comes down to treatment......if your doctor is not considering your feelings you need to go to another doctor....that's my opinion....good luck :hugs:


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## pandatx (Mar 27, 2013)

Thank you Everyone. Just the affirmation that I am not crazy (b/c hey, I feel crazy most days) helps. I did have her prescribe the ATD so I could at least start them (although my reservations have stopped me from picking them up) and have a second opinion guy scheduled for 4/30.

I feel like I just am not thinking reasonably right now so it really does help to just get some feedback. Like, I'm afraid of the ATD b/c I don't want to gain weight. I struggled with an eating disorder when I was younger and even though I know this is stupid it is hard for me to accept weight gain. But, c'mon, is that really worse than living with Graves and not treating it? With only the minimal dose of Beta Blocker (b/c again, I don't want to gain weight so I was only taking 1/4 of a pill).

If my thinking is that f-ed up, I certainly am not going to decide to jump in to RAI in 5 days after finding all this out. And the whole discounting the eye thing....that really put me off.

So, new doc in a couple of weeks. Hopefully make myself start ATD today.

Thank you so much for the replies. It really helps when you are feeling scared, confused, overwhelmed, etc.

xoxoxoox

Amy


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## Andros (Aug 26, 2009)

pandatx said:


> So, my Endo that is wanting me to rush into treatment (and leaning to RAI --which I am NOT rushing into) spoke with me on the phone today. I asked about the Graves Ophtamology and should I maybe see an opthamologist?
> She said no. They wouldn't do anything for me unless it was bad. I said "well maybe just to get established and be watched"? Her: No. Me: "I read that you shouldn't do RAI until you make sure you don't have the eye involvement (blood work)". She replied.....wait for it..... that *IT DOESN'T MATTER*.
> 
> Yeah, you heard me right. It doesn't matter b/c even if it flares it up it goes back to normal in a couple of months. That the RAI isn't that big of a deal. She decides what dosage should be compounded and I take the pill at her office and go home and just stay away from my family for 5 days.
> ...


Please see an ophthalmologist. You need a "baseline" for your eyes anyway.

It is recommended to not do RAI but.......................any trauma can and will trigger the eyes including taking antithyroid meds and/or surgery.


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## webster2 (May 19, 2011)

[quote name='pandatx'] I feel crazy most days) helps. I did have her prescribe the ATD so I could at least start them (although my reservations have stopped me from picking them up) and have a second opinion guy scheduled for 4/30. [quote name='pandatx']

I did not take them right off for exactly the same reason. I just could not get my head around what was going on with me. I do not like taking meds but the craziness and racing heart made me think...maybe I'd give it a shot. It was a huge surprise to me that I did feel some relief from the racing heart and anxiety. And then, I found this lovely community....


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## pandatx (Mar 27, 2013)

Webster, yes! I'm so thankful to have found a place here ...already feel better just having some support, encouragement, understanding...and people who know a heck of a lot more than me. I'm only 4 days out from diagnosis so my head is still spinning. So much makes sense now.

Thank you Andros for the suggestion to go ahead and see an opthamologist. I call on Monday and get in if for nothing else to discuss what's going on and can be watched.


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## Andros (Aug 26, 2009)

pandatx said:


> So, my Endo that is wanting me to rush into treatment (and leaning to RAI --which I am NOT rushing into) spoke with me on the phone today. I asked about the Graves Ophtamology and should I maybe see an opthamologist?
> She said no. They wouldn't do anything for me unless it was bad. I said "well maybe just to get established and be watched"? Her: No. Me: "I read that you shouldn't do RAI until you make sure you don't have the eye involvement (blood work)". She replied.....wait for it..... that *IT DOESN'T MATTER*.
> 
> Yeah, you heard me right. It doesn't matter b/c even if it flares it up it goes back to normal in a couple of months. That the RAI isn't that big of a deal. She decides what dosage should be compounded and I take the pill at her office and go home and just stay away from my family for 5 days.
> ...


When it comes to your eyes, do not discount anything. They are very precious. I went blind in the left eye due to undiagnosed and untreated Graves' and GED. Thankfully re lots of surgery, eyesight is restored but there is permanent damage to both eyes.

Get to a Board Certified Ophthalmologist. Much can be done in the early stages to stave off a disaster.

I meant to give you this link earlier; here it is...............
http://www.caleyes.com/webdocuments/...ease_paper.pdf


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## pandatx (Mar 27, 2013)

thank you Andros

xo


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## StormFinch (Nov 16, 2012)

Maybe it was just me, but I never gained weight on the ADT. Of course, I had the push/pull with both autoimmunes so I didn't really lose much when I went hyper either.. maybe 10 pounds or so. The MMI did stop the racing heart, slowed down the anxiety and made the shakes liveable though, so I'd have accepted any extra weight gain for that. I also knew from a past bone scan that the hyper episodes were eating up my bone mass, so I was pretty darn motivated into getting it treated.

As long as you find a doctor that will keep an eye on your numbers and not let you go hypo on the ADT your weight shouldn't rise all that much, and not being hyper is a lot better for your overall health. Go pick up your meds!


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## pandatx (Mar 27, 2013)

Thank you StormFinch! I still haven't picked them up but now I will today. I actually haven't lost much being hyper. Maybe 5 pounds. The beta blocker has slowed down a lot of the heart/shakes/out of breath stuff but I guess its not really doing anything about the rest of the damage being done. I'm worried about my bones. I already have osteoporosis but not treating with meds. I've worked so hard (P90X, alkaline diet, cut out caffiene, etc) to build my bones without medication. Knowing this is bad for them and any treatment takes a while to stabelize scares the crap out of me. Which of course, we all know, that kind of stress helps nothing. So...my plan today. Breathe. Do my yoga. Pick up my meds. Take my dogs for a walk in this gorgeous weather today. And be so thankful to have found you guys. xo Amy


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## pandatx (Mar 27, 2013)

Storm...I see that you ended dong the thyroidectomy. Could I ask about that? Maybe message you if you don't want to share here? What made you go that route? How long did it take you to decide?


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## Andros (Aug 26, 2009)

pandatx said:


> Webster, yes! I'm so thankful to have found a place here ...already feel better just having some support, encouragement, understanding...and people who know a heck of a lot more than me. I'm only 4 days out from diagnosis so my head is still spinning. So much makes sense now.
> 
> Thank you Andros for the suggestion to go ahead and see an opthamologist. I call on Monday and get in if for nothing else to discuss what's going on and can be watched.


You will have no regrets about this; I am relieved to hear that you are taking action. And please do let us know what the ophthalmologist has to say. Make sure this doc has experience w/thyroid eye disease. Most do, actually but I have learned to take nothing for granted.


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## HotGrandma (Sep 21, 2012)

Panda
My 2 cents says start on the meds. When your levels are within normal range it calms the antibodies that attack the eyes. Based on my experience with eye doctors like 7 before I had a diagnoses of the extent GED did on my eyes. Find an opthomologist that is also an MD (medical doctor). They have more knowledge on what to monitor.


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## pandatx (Mar 27, 2013)

Thank you HG! I will call the opthamologist I saw in the past when I had an eye infection and he is an MD (http://www.wellness.com/dir/2490793/ophthalmologist/tx/garland/gordon-keehn-md) but will also make sure he has dealth with GD and maybe keep asking around in the meantime.


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## HotGrandma (Sep 21, 2012)

Perfect match. Bring your labs with you when you see him. And a list of all medications and vitamins or suppliments. Make sure he tests your pressures. If they are elevated see if he could check them in different gases ie downward. Best to you


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## Andros (Aug 26, 2009)

pandatx said:


> Thank you HG! I will call the opthamologist I saw in the past when I had an eye infection and he is an MD (http://www.wellness.com/dir/2490793/ophthalmologist/tx/garland/gordon-keehn-md) but will also make sure he has dealth with GD and maybe keep asking around in the meantime.


Yes; an ophthalmologist, much like a psychiatrist must complete 4 years medical and at least 3 more years in field of expertise.

Good; do let us know!


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## StormFinch (Nov 16, 2012)

pandatx said:


> Storm...I see that you ended dong the thyroidectomy. Could I ask about that? Maybe message you if you don't want to share here? What made you go that route? How long did it take you to decide?


Of course you can ask panda, and I've got no problem sharing. :hugs:

I'm one of those with minor eye involvement; extremely dry eyes that feel more like spherical pencil erasers than my own eyeballs, grittiness, sporadic burning and tearing that does nothing to relieve the dryness, some minor swelling... Anyway, I did my research on both RAI and surgery after my second round of MMI and found out about the RAI making eye symptoms worse without a round of steroids, which I don't deal well with. I also didn't like the guesswork involved. Maybe they get the right dosage the first time but maybe they don't.

It took me awhile though to finally make up my mind, so don't feel bad about that. As I mentioned, I have both Graves and Hashi's. I'd go approximately half the year with one and then half the year with the other, with a month or so of "normal" in between. I guess I was hoping that each round of Graves would be my last... they never were. I was definitely afraid that something would happen to my parathyroids in the process since I already had osteoporosis. (They're fine btw) With the last round of hyper though, I was finding it really hard to control my numbers on ADTs, and both meds caused minor but really irritating side effects. Finally I decided that I'd had enough. I was tired of the symptoms, tired of babying my body, tired of sitting in the same darn place on the same darn couch because I couldn't work up the energy to do anything else. I researched surgeons, found one experienced enough to suit me, and just jumped.

My sig line is the honest truth panda, it was one of the best decisions I've ever made, and I wished I had done it much, much sooner. Yes, I still have the antibodies which sometimes mess with my system, but my eyes aren't any worse and my numbers are a heck of a lot easier to control on replacement meds than they ever were with a thyroid. And, I have some semblance of a life again. Pretty good for what turned out to be a really easy surgery.


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## pandatx (Mar 27, 2013)

Thank you so much for sharing with me. I don't think I can express adequately how much I appreciate it. I know that I don't want the RAI. I'm just not comfortable with the idea. I was hoping that the medication would make the Graves easier to stabelize than having surgery and then needling to supplement with Synthroid but this is all so new and I just don't know. I do think I should at least start the meds until I can get in with the second opinion guy on the 30th. Was it hard to figure out that you had both Graves and Hashi? I am tired of all the symptoms too. I have like 95% of what you'd see listed anywhere and its exhausting. I don't have that extra GD energy. I just feel exhausted. The osteoporosis issues scare the crap out of me. But, really and ultimately, I guess its just gonna be a process and I'm gonna have to learn to deal. I do have really bad dry eye syndrome to start with. I've had iritis in the past. I can't wear contacts b/c my eyes are too dry.

It makes me happy to read that you are happy with your decision. And it sounds liek you are feeling more like yourself again and I really want that for myself.

xooxo
Amy


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## Serenia (Sep 27, 2011)

I too have Graves, and have been on MMI for the last 3 years. I was always saying NO to RAI. It looks as as if I will eventually have to go with surgery just to keep the anti-bodies under control.

Your explanation is very reassuring. Thank you Stormfinch.


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## pandatx (Mar 27, 2013)

Serenia, do you mind explaining what that means about keeping the antibodies under control?


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## Serenia (Sep 27, 2011)

pandatx said:


> Serenia, do you mind explaining what that means about keeping the antibodies under control?


My endo's never really bothered with the antibodies. They certainly never talked about it - the TSH was all they ever talked about.

While I was taking MMI I was feeling pretty good apart from my weight. I dont have any eye problems - and the anti bodies can often attack the eyes to cause TED - so I guess I have been lucky.

My endos did keep pushing the RAI at me. I just kept saying NO. If I ever have to choose, I will choose Thyroidectomy over RAI any day.

IF you ether ablate (surgically remove) your thyroid, or nuke it - you will eventually go hypo and then you have to take a little hormone pill every day for the rest of your life.


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## pandatx (Mar 27, 2013)

Have you gained weight on the medication? I'm so worried about that. I mean, I know I have to do whatever I have to do but its so upsetting. I haven't lost much with the Graves at all. Maybe 5 lbs.


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