# frustrated by endo's office (venting)/TSI question and other stuff



## lhc11 (May 5, 2010)

I'm supposed to go get new labs done today; I think my endo has only ordered FT3 and FT4. After learning yesterday that my initial TSI was 395, I'm wondering if/when there is a point in getting it tested again, and whether that might tell me anything about the possibility of eventual remission (I think not, at least not from nasdaqphil's story, but I'm wondering anyway). I'm STILL waiting for a call back from my endo's office from the calls I put in both yesterday and today--I want to ask about this and about my beta-blocker--I had cut it down from 100 mg 2x/day to 50 mg 2x/day, then on my endo's advice I stopped taking it on Friday, but over the weekend (and after calling the endo on call) went back on to 50 mg 2x/day b/c of heart palpitations, and then 25 mg 2x yesterday. Have not taken it today (except a half xanax this a.m. which I do virtually every morning). And all I want to do is check in with a **** nurse or my doctor herself and ask some questions, and I feel super ignored and uncared for; I've been assigned to a resident who is finishing up and who is only in clinic one day a week, and don't think I have any power over switching because they're all so over-booked, which makes me feel so helpless; no wonder I'm leaning toward surgery--the surgeon's office calls me back and the nurse there talked to me yesterday for over half an hour about my questions/concerns. Which is a dumb reason to lean toward surgery, I *know*, especially since I'll still be dependent on the endo for monitoring levels after surgery. Anyway: can any of you tell me how often/when you get your TSI tested? I do know from what little research I've done that it will be important if/when I ever get pregnant again, but I'm wondering if it should be done now/soon as well for any reason.


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## lhc11 (May 5, 2010)

Well, I just spoke with my endo and she said there's no point in testing the TSI now--that it wouldn't be something one would test again until/unless I stayed on the ATD's for 18 months (or if/when I get pregnant), and that any result now would not indicate chances for remission--which I sort of already knew but needed to hear her say it. So I guess that answers that question. At least she called me back. She said she thinks that after the conversations we've had, that surgery is probably the best definitive treatment option in my case because of the way I don't deal well (and I don't) with uncertainty and the way this diagnosis of GD has been such a huge disruption in my life. Which it has. I'm just worried it will continue to be--to vent some more, I am tired of being consumed by this, but I'm an OCD type and to know that I'll always have the GD and have to be thinking about it--which it feels like I will always have to do--is driving me crazy.


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## CANDON (May 10, 2010)

I feel some of your pain, and I don't want to be too direct, but unless something drastic happens in the future -Grave's is just something you have to live with..but that does *NOT* mean you cannot live well.

So let me give you a personal example, I have more or less permanent dilopthia (double vision) from TED and Grave's.... my kidneys just about caved in, so I have been told and warned to limit sodium intake lower then RDA's. Low salt ketchup sucks, let me tell you. Also, because of the kidneys, all the endos recommended to keep me slightly hypo (just very slightly) as any hyper episode will probably start the foolisheness again. I could go on and on, but that is a moot point..

Now, let me tell you how I live life to the fullest...I recently got my probationary second degree black belt (I have to test out again...oh well, but I will make it...).

I am back riding my Harley again - to get ready I have to literally blind one eye (long story - it is legal) - takes about half an hour to fiddle about with that foolishness - so much for jumping on the bike and riding into the sunset...but I still ride..

Back to doing photography again ( you only need one eye to look through the lense!!!)..

What I am trying to say in my unsensitive way is you can do anything you want - it might take some adaptation, but so what, just do it...live life, enjoy...


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## Andros (Aug 26, 2009)

CANDON said:


> I feel some of your pain, and I don't want to be too direct, but unless something drastic happens in the future -Grave's is just something you have to live with..but that does *NOT* mean you cannot live well.
> 
> So let me give you a personal example, I have more or less permanent dilopthia (double vision) from TED and Grave's.... my kidneys just about caved in, so I have been told and warned to limit sodium intake lower then RDA's. Low salt ketchup sucks, let me tell you. Also, because of the kidneys, all the endos recommended to keep me slightly hypo (just very slightly) as any hyper episode will probably start the foolisheness again. I could go on and on, but that is a moot point..
> 
> ...


Kudos!! I could not agree more!!


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## lhc11 (May 5, 2010)

Thanks, CANDON. I think if I weren't already depressed (which may or may not be connected to the Graves) I would be able to see things as you do; I'm generally a pretty positive person, but I've lost that side of myself right now. I need to lift out of the depression and get back to my life...but I am having a hard time, especially with (I guess) surgery looming on June 9th. I am feeling very down, as you can tell. A ride on a Harley might well cheer me up! Oh, and I got my lab results: FT3 normal at 2.9 (range 2.0-4.9), and FT4 a little low (.58 with a range of .75-1.54)--could this be part of why I feel bad?--so they are cutting my methimazole dose down to 10 mg a day and I have to get it all checked again in a week.


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## chopper (Mar 4, 2007)

lhc11 said:


> Oh, and I got my lab results: FT3 normal at 2.9 (range 2.0-4.9), and FT4 a little low (.58 with a range of .75-1.54)--could this be part of why I feel bad?--so they are cutting my methimazole dose down to 10 mg a day and I have to get it all checked again in a week.


A little low???? Sheesh!! That Free T4 is practically nothing. No wonder you feel so out of sorts - you should be at double that number.


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## lhc11 (May 5, 2010)

Oh. See, that's how little I know.


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## Andros (Aug 26, 2009)

lhc11 said:


> Well, I just spoke with my endo and she said there's no point in testing the TSI now--that it wouldn't be something one would test again until/unless I stayed on the ATD's for 18 months (or if/when I get pregnant), and that any result now would not indicate chances for remission--which I sort of already knew but needed to hear her say it. So I guess that answers that question. At least she called me back. She said she thinks that after the conversations we've had, that surgery is probably the best definitive treatment option in my case because of the way I don't deal well (and I don't) with uncertainty and the way this diagnosis of GD has been such a huge disruption in my life. Which it has. I'm just worried it will continue to be--to vent some more, I am tired of being consumed by this, but I'm an OCD type and to know that I'll always have the GD and have to be thinking about it--which it feels like I will always have to do--is driving me crazy.


I agree w/ what the nurse has said. It is good to have a "baseline" for future reference but it is not necessary to have more labs for TSI at this time. We know you have it and we know that something must be done about it.

I do think surgery would be best for you. Hope you are feeling a little better today?

You must let us know when your surgery is scheduled so we can be there for you in spirit.


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## lhc11 (May 5, 2010)

Hi Andros -- Thanks for asking. I wish I could tell you I was feeling better today, but I've done my usual waking up anxious & depressed. I've got a therapy appointment in an hour which is good, but the therapist isn't very good; then a 15-min appt squeezed in with my psychiatrist a few hours after that, which means much of today is shot for getting much of anything done. I need to tell my psychiatrist that things are not really getting any better, but how he/anyone can differentiate between my psychological vs. physiological issues is obviously hard to say. Oh, surgery: if I'm really doing it (and I still can't wrap my mind around it fully, not really): it'll be on June 9th. I'm sure I'll be posting about it and much more before then.

I'm supposed to be going out of town tomorrow--traveling to where my husband lives and then driving with him the next day to a family reunion of sorts. I have no idea if this is going to help me get my mind off of things or make them worse. I can't even fathom packing for the trip. I could choose not to go...but that doesn't seem right either.


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## Andros (Aug 26, 2009)

lhc11 said:


> Hi Andros -- Thanks for asking. I wish I could tell you I was feeling better today, but I've done my usual waking up anxious & depressed. I've got a therapy appointment in an hour which is good, but the therapist isn't very good; then a 15-min appt squeezed in with my psychiatrist a few hours after that, which means much of today is shot for getting much of anything done. I need to tell my psychiatrist that things are not really getting any better, but how he/anyone can differentiate between my psychological vs. physiological issues is obviously hard to say. Oh, surgery: if I'm really doing it (and I still can't wrap my mind around it fully, not really): it'll be on June 9th. I'm sure I'll be posting about it and much more before then.
> 
> I'm supposed to be going out of town tomorrow--traveling to where my husband lives and then driving with him the next day to a family reunion of sorts. I have no idea if this is going to help me get my mind off of things or make them worse. I can't even fathom packing for the trip. I could choose not to go...but that doesn't seem right either.


A psychiatrist is firstly medically trained and believe me, they know the thyroid because of how it impacts the brain either negatively or positively. So......................i am glad you are seeing him today.

Hope to talk to you when you get back.


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## lhc11 (May 5, 2010)

Well, he doesn't know as much about the thyroid as one might think; he scared me into going on medical leave from my academic job--which maybe I needed, or maybe it fueled my depression--when he told me "you'll be a mess for 6-8 weeks" based on what he knew about HYPOthyroidism. Of course, I then was a mess for 6-8 weeks (we're on about week 7), but that was in part, I think, because I went on the medical leave. And just now he seemed to think that after surgery one no longer has Graves' disease -- so I had to school him in that on top of noting that since another sleep aid he wanted to put me on (remeron) is an antihistamine that maybe I can't be on that right now; so, he's keeping me on the seroquel for sleeping at night. On the upside: he is letting me switch back, as of tomorrow, from the prozac to the zoloft with which I have years of experience and positive results. (Oh, I also knew more than he did about SSRIs impacting TSH levels). This guy's supposed to be good, but...

Aaaggh. I have spent all day on this. The only thing I feel good about is going back on zoloft--if it works, even psychosomatically, that is FINE by me. Going now to pick up the renewed seroquel prescription and to yoga.


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## CA-Lynn (Apr 29, 2010)

Let me pass along some good advice to those who feel down in the dumps. Get out there and WALK. Movement helps the brain chemistry function well and will uplift your spirits. Just keep moving.

Candon: what a great role model you are!

lhc: things will get better soon. Hang in there. And MOVE around!


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## Andros (Aug 26, 2009)

lhc11 said:


> Well, he doesn't know as much about the thyroid as one might think; he scared me into going on medical leave from my academic job--which maybe I needed, or maybe it fueled my depression--when he told me "you'll be a mess for 6-8 weeks" based on what he knew about HYPOthyroidism. Of course, I then was a mess for 6-8 weeks (we're on about week 7), but that was in part, I think, because I went on the medical leave. And just now he seemed to think that after surgery one no longer has Graves' disease -- so I had to school him in that on top of noting that since another sleep aid he wanted to put me on (remeron) is an antihistamine that maybe I can't be on that right now; so, he's keeping me on the seroquel for sleeping at night. On the upside: he is letting me switch back, as of tomorrow, from the prozac to the zoloft with which I have years of experience and positive results. (Oh, I also knew more than he did about SSRIs impacting TSH levels). This guy's supposed to be good, but...
> 
> Aaaggh. I have spent all day on this. The only thing I feel good about is going back on zoloft--if it works, even psychosomatically, that is FINE by me. Going now to pick up the renewed seroquel prescription and to yoga.


Now you make me wonder if you are in good hands w/ this guy. Do you think perhaps you should seek out another psychiatrist? I am shocked. I happen to know many people who have in fact been diagnosed w/thyroid disease by their psychiatrists when no other doctor ever "nailed" it as they say.

Scratching my head here.


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## lhc11 (May 5, 2010)

Maybe. However, he's the "immediate care" doctor I got assigned to back in February when I needed to see someone because of my odd reaction to going back on Zoloft (now I know that was probably the hyperthyroidism), and any switch sort of has to happen *through* him via my health plan unless I go out of network. It is true that his lack of knowledge about Graves is alarming, but I simply don't have the time/energy to go around searching for a psychiatrist specifically educated in GD. We'll see.


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## Andros (Aug 26, 2009)

lhc11 said:


> Maybe. However, he's the "immediate care" doctor I got assigned to back in February when I needed to see someone because of my odd reaction to going back on Zoloft (now I know that was probably the hyperthyroidism), and any switch sort of has to happen *through* him via my health plan unless I go out of network. It is true that his lack of knowledge about Graves is alarming, but I simply don't have the time/energy to go around searching for a psychiatrist specifically educated in GD. We'll see.


Alarming is not the word!! Yikes! So, you leave to meet hubby today and visit relatives? I am hoping the respite will help you feel better.

Have a great time and we will see you when you get back.


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