# how my doctor appointment went



## blessed1

Since I've been posting so much in the intro folders, I thought it might be wise to start posting where I belong.  I hope that's ok. For the ease of reading I'm going to try to put spaces between my paragraphs. I've got too much to say to cram into one big old paragraph.

Friday I saw my doctor. I took the letter I wrote (with some tweaking by Octavia - THANKS so much!) My doctor read it right then and there. I was told it was very well written. My doctor then proceeded to go through the letter with me. She said she didn't want to miss any of my questions.

My doctor was receptive and open with me. The first thing she discussed was total thyroidectomy. She says I definitely need to have it out. She also said it can't happen until my levels are down. She also said that the cost is an issue because it will be a 3 day stay at the hospital. So while I wait for my levels to come down, I will be searching for some kind of financial assistance to get it done.

Then she went through my letter with me. We discussed the TSH; free t4 and free t3. She's consulting with the endo I totally don't like. He has informed her it was fine to go by TSH alone. I told her I would rather do the free t4 and free t3. She agreed to free t4 and total t3. :confused0031:

We discussed Methimazole and how it gives me such awful body aches and sore throat. She's going to consult the endo and see if he recommends switching to PTU. She's talking about just upping the Methimazole. Can you hear me crying at the sound of that?:sad0049lease God no is all I can say.

As for my thyroid changing appearance, sometimes looking smaller, now bigger all the way around my neck, my doctor tells me it is likely inflammation. She feels that would cause the pain in my neck.

We discussed antibody tests. I got a little frustrated with this conversation. The TSH comment combined with the antibody discussion made my hair stand up. She said "antibody tests aren't necessary because they know this is Grave's disease. And an antibody test won't change how they treat me so why spend money on it." Plus (this made me mad) she said the endo doesn't feel it's necessary anyway. :anim_38: Can't I just have a NEW endo? I never liked him. Everyone knows that even my doctor so can't she consult with someone else? Am I wrong for feeling like the endo doesn't have a clue? If I'm wrong please tell me.

I had my labs drawn. My doctor said she would have them back today. She said if my levels hadn't gone down some then she was going to admit me. Well she called me this afternoon. My t4 hasn't moved at all. My total t3 is 794 (last time it was >800) So she feels we are heading in the right direction. Does anyone here agree with that observation? Anyway, no hospital for me this weekend! arty0049: She ended the call saying she was going to call the endo Monday and ask him if he recommends switching meds. I don't have an appointment to see her until after she gets the endo's recommendation. So who knows when I go back.

During that call I mentioned again my eyes hurting so bad that my head hurts (best way to describe it but not really adequate). I'm not sure how to describe the pain. But it's awful. Sometimes it actually feels better to open them wide. Does that sound weird? She told me "we will have to get down to the source of your headaches and eye pain". I behaved. I wanted to say "you might ask the endo about Grave's affect on the eyes"

It's all good. She doesn't deal with this usually. I just wish she had a better teacher ya know?

But then again maybe the endo is right on target. Maybe I'm the one who has been learning wrong.

If I'm wrong then please somebody set me straight. Please. It won't hurt my feelings. I promise.

Well, I've gone on and on a whole lot, so I will end this for now. I still have my letter if anyone wants to read it. I was going to put it in here. I wasn't sure if that was acceptable.

I'm looking forward to seeing what ya'll think.


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## Andros

blessed1 said:


> Since I've been posting so much in the intro folders, I thought it might be wise to start posting where I belong.  I hope that's ok. For the ease of reading I'm going to try to put spaces between my paragraphs. I've got too much to say to cram into one big old paragraph.
> 
> Friday I saw my doctor. I took the letter I wrote (with some tweaking by Octavia - THANKS so much!) My doctor read it right then and there. I was told it was very well written. My doctor then proceeded to go through the letter with me. She said she didn't want to miss any of my questions.
> 
> My doctor was receptive and open with me. The first thing she discussed was total thyroidectomy. She says I definitely need to have it out. She also said it can't happen until my levels are down. She also said that the cost is an issue because it will be a 3 day stay at the hospital. So while I wait for my levels to come down, I will be searching for some kind of financial assistance to get it done.
> 
> Then she went through my letter with me. We discussed the TSH; free t4 and free t3. She's consulting with the endo I totally don't like. He has informed her it was fine to go by TSH alone. I told her I would rather do the free t4 and free t3. She agreed to free t4 and total t3. :confused0031:
> 
> We discussed Methimazole and how it gives me such awful body aches and sore throat. She's going to consult the endo and see if he recommends switching to PTU. She's talking about just upping the Methimazole. Can you hear me crying at the sound of that?:sad0049lease God no is all I can say.
> 
> As for my thyroid changing appearance, sometimes looking smaller, now bigger all the way around my neck, my doctor tells me it is likely inflammation. She feels that would cause the pain in my neck.
> 
> We discussed antibody tests. I got a little frustrated with this conversation. The TSH comment combined with the antibody discussion made my hair stand up. She said "antibody tests aren't necessary because they know this is Grave's disease. And an antibody test won't change how they treat me so why spend money on it." Plus (this made me mad) she said the endo doesn't feel it's necessary anyway. :anim_38: Can't I just have a NEW endo? I never liked him. Everyone knows that even my doctor so can't she consult with someone else? Am I wrong for feeling like the endo doesn't have a clue? If I'm wrong please tell me.
> 
> I had my labs drawn. My doctor said she would have them back today. She said if my levels hadn't gone down some then she was going to admit me. Well she called me this afternoon. My t4 hasn't moved at all. My total t3 is 794 (last time it was >800) So she feels we are heading in the right direction. Does anyone here agree with that observation? Anyway, no hospital for me this weekend! arty0049: She ended the call saying she was going to call the endo Monday and ask him if he recommends switching meds. I don't have an appointment to see her until after she gets the endo's recommendation. So who knows when I go back.
> 
> During that call I mentioned again my eyes hurting so bad that my head hurts (best way to describe it but not really adequate). I'm not sure how to describe the pain. But it's awful. Sometimes it actually feels better to open them wide. Does that sound weird? She told me "we will have to get down to the source of your headaches and eye pain". I behaved. I wanted to say "you might ask the endo about Grave's affect on the eyes"
> 
> It's all good. She doesn't deal with this usually. I just wish she had a better teacher ya know?
> 
> But then again maybe the endo is right on target. Maybe I'm the one who has been learning wrong.
> 
> If I'm wrong then please somebody set me straight. Please. It won't hurt my feelings. I promise.
> 
> Well, I've gone on and on a whole lot, so I will end this for now. I still have my letter if anyone wants to read it. I was going to put it in here. I wasn't sure if that was acceptable.
> 
> I'm looking forward to seeing what ya'll think.


Okay..................since you have financial restraints (many of us including myself do), it really is not necessary to have all those tests. It would be nice to have a baseline but it would not be life-saving especially given the fact that that bad boy is coming out as soon as they get your levels down.

They know you have Graves' because of the clinical presentation not by any tests other than the fact that your Frees are through the roof and TSH in the basement.

The criteria for Graves' is clinical. You must exhibit..........goiter, exophthalmos, pretibial myxedema and thyrotoxicosis as per Dr. Robert Graves' of the 1800 era. 3 out of the 4 qualify.

http://www.thyroidmanager.org/chapter/graves-disease-and-the-manifestations-of-thyrotoxicosis/

http://www.thyroidmanager.org/chapter/diagnosis-and-treatment-of-graves-disease/

http://www.thyroidmanager.org/chapter/graves-disease-complications/

As you probably know, I am a Grave's person. My humble and very experienced opinion is to just focus on getting that thryoid out and #2, see an ophthalmologist about your eyes. Hopefully you can find an eye clinic in your area that might be gratis or a very low fee.


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## webster2

I am so proud of you! What a great advocate for your self! And, don't you love this board! I hope the financial part works out soon too. Have you contacted the patient advocacy department at the hospital? Thet are a good resource. Best wishes!

P.S. The plan was to wait for my levels to come down but they didn't and all went well. I wish you all the best!


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## Octavia

Ditto what webster said...I'm very proud of you as well!

Many hospitals work with uninsured patients in different ways. Some have foundations set up to help people pay. Some write off the fees. Some ask for a portion from the patient, and write off the rest. Check with the hospitals in your area to see what kind of help is available. If there are any teaching/university hospitals in your area, that may be a good place to start.

I was surprised to see your comment about a 3-day stay. But then again, Graves Disease is an animal all its own, and I can see why they'd want to watch you closely for a few days.

This is all definitely a big step in the right direction. Don't be discouraged about the different viewpoints about which tests to have run. Bottom line is that your doc agrees that surgery is the right approach for you, and that's what you were after. Hopefully, she'll be very clear about your reaction to Methimazole when she's talking with the endo, and they'll agree to try PTU.


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## blessed1

Thanks Andros, webster and Octavia! I'm so not used to seeing someone is proud of me. That meant more than you know!

I will be contacting the hospitals in my area. Hopefully there's something they know that social services and some other places don't. I get the feeling the different agencies don't really talk much with each other. I'm believing for a miracle!

As far as the free clinics go, I haven't had much success there. It seems that owning my own business is an issue. Even though I am not working my business right now. There's no profit coming in but I don't know how to prove that. I'm realizing now that maybe I shouldn't have even said that on forms when people ask about your job. I just hate lying. I don't do it.

I'm sorry I haven't been online the past few days. My eyes have been giving me fits. I wasn't able to look at the computer screen for very long.

I heard from my doctor today. I had to return her call but wasn't able to talk to her. The lady who answered the phone said that I'm being switched to PTU. Then she proceeded to read me all these warnings. Needless to say I'm saying to myself do I really want to take it? I will. But given my track record healthwise, if it can happen it will happen to me.

I wasn't given a follow up appointment. I'm told a month after I start the PTU I'm to come in for labs. I spoke up and mentioned that she was keeping track of my heart rate and making adjustments to my propranolol weekly. So now I'm waiting for another call. Plus I switched pharmacies to one closer to home since my doctor's office is an hour and a half away. I figure if I'm not seeing her for a month I may as well save gas!

I'm a little cranky today. My patience is nil. I hate that feeling. My thyroid is bigger than ever. I'm just like cmon let's kick this thing in the butt and take it out! I know I have to wait. But still.

I had a victory today in getting a switch in meds. Please pray it works! I'm running out of options I think.

You all are in my thoughts and prayers.


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## Octavia

Sounds like progress to me! I'll pray with you that the PTU works without any icky side effects!


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## blessed1

Octavia said:


> Sounds like progress to me! I'll pray with you that the PTU works without any icky side effects!


Thanks Octavia! It's progress. I thought for sure I was getting it today. But then my doctor called saying she needs a liver function test. I have never had one. I had read where it was a good idea. I honestly thought she wouldn't think to do it. But by golly she did! So tomorrow I go for the blood work. I'm kind of hoping she will be there. I'm feeling worse than ever.

I'm having these awful headaches. Not only are my eyes bothering me something awful. Now my head is too. Add to that the achy shaky legs and an ever enlarging neck. And don't forget all the other symptoms of hyper added to that! I'm one big mess.

I'm going to be ok though. I'm stronger than this is!

(Remind of that when I'm down and out lol)

Thanks for the prayers Octavia! They mean a lot! I want this to work. I need it to.

Cmon down thyroid level! You're the next contest on the thyroid comes out!!!:winking0001: (ok so I'm a little weird too!)


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## webster2

Glad things are moving in the right direction, and that you have such a great attitude!


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## I DClaire

blessed1 said:


> I'm a little cranky today. My patience is nil. I hate that feeling. My thyroid is bigger than ever. I'm just like cmon let's kick this thing in the butt and take it out! I know I have to wait. But still.
> 
> I had a victory today in getting a switch in meds. Please pray it works! I'm running out of options I think.
> 
> You all are in my thoughts and prayers.


You know, people used to tell me ALL THE TIME that I always at least seemed happy, I never openly complained about anything, I always seemed calm and content...and now I feel like a miserable, griping, whining, venting, irritable, anxious, borderline nutcase!! :jumping0047::anim_55::aim25:And, I might add that I don't think I'm this way as much because of thyroid disease itself as from the frustration I've had to deal with ever since the first day I heard the diagnosis! Anybody who can manage all this and not be cranky has my utmost admiration!!

Methimazole made me feel weird too! It made my test results absolutely picture perfect but I felt horrible taking it.

I go through my miserable, griping, whining, venting, irritable, anxious, borderline nutcase routine almost daily because I can't get to where I want to be with fatigue issues but your post reminded me that actually I feel a lot better now than I did before I had my thyroid removed!


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## blessed1

I DClaire said:


> You know, people used to tell me ALL THE TIME that I always at least seemed happy, I never openly complained about anything, I always seemed calm and content...and now I feel like a miserable, griping, whining, venting, irritable, anxious, borderline nutcase!! :jumping0047::anim_55::aim25:And, I might add that I don't think I'm this way as much because of thyroid disease itself as from the frustration I've had to deal with ever since the first day I heard the diagnosis! Anybody who can manage all this and not be cranky has my utmost admiration!!
> 
> Methimazole made me feel weird too! It made my test results absolutely picture perfect but I felt horrible taking it.
> 
> I go through my miserable, griping, whining, venting, irritable, anxious, borderline nutcase routine almost daily because I can't get to where I want to be with fatigue issues but your post reminded me that actually I feel a lot better now than I did before I had my thyroid removed!


I DClaire and Webster...It's kind of funny because so many people think I'm always happy. They say I have a great attitude. Truth is they aren't seeing me behind closed doors. I'm a basket case.

I've said things that freak people out so I won't say it here. But know that my positive attitude is sometimes my defense. Not always. But emotion is something I struggle to show.

Please don't ever think I'm "ok" because right now I'm not. I do have calm moments. I can keep it together. I also try to throw some "positive" in sometimes because it's the right thing to do. Or so I think.

I have decided that when I get a surgery date we need to have a celebration. So you all need to come to where I am and let's have fun! (I know it won't happen but a girl can dream).

It's thoughts like that that keep me going. And sometimes I tell myself tomorrow it will be better. I'm struggling holding on to that thought sometimes.

I do find strength and hope through this board, through all of your support and encouragement. Plus when someone has a bad day it shows me that I'm not alone (as bad as that sounds)

We have each other here. Through good times and bad. I'm hoping some day I can be hope for someone else!

That all said, those of you still reading I have an update. I had a comprehensive metabolic panel done yesterday. My doctor passed me in the hall and pulled me aside. She said I'm going to be taking "something like 16 pills a day". My doctor wanted to call me with my lab results. She said she would see me in two weeks. Then my doctor asked me how I was feeling. I said horrible. She opened her laptop and said "you know what; I want to see you Friday". My doctor says this way we can go over labs and see if we can deal with my eyes and headaches. She knows I don't complain about hurting. I complain about everything else lol.

So Friday it is. I'm glad because when I wake up in the morning, my roommate says my left eye "looks bulgy" and I have noticed that it is the first eye to open while my other one is comfortably closed. But then the day goes on and both eyes "look" normal. It's kind of weird to me.

But anyway, that's where I'm at right now. I'm waiting to start PTU until after labs are back. And then I'm praying it isn't expensive. Methimazole was bad enough in cost. But I imagine 16 pills a day is going to be costly.:scared0011:


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## Andros

blessed1 said:


> Thanks Octavia! It's progress. I thought for sure I was getting it today. But then my doctor called saying she needs a liver function test. I have never had one. I had read where it was a good idea. I honestly thought she wouldn't think to do it. But by golly she did! So tomorrow I go for the blood work. I'm kind of hoping she will be there. I'm feeling worse than ever.
> 
> I'm having these awful headaches. Not only are my eyes bothering me something awful. Now my head is too. Add to that the achy shaky legs and an ever enlarging neck. And don't forget all the other symptoms of hyper added to that! I'm one big mess.
> 
> I'm going to be ok though. I'm stronger than this is!
> 
> (Remind of that when I'm down and out lol)
> 
> Thanks for the prayers Octavia! They mean a lot! I want this to work. I need it to.
> 
> Cmon down thyroid level! You're the next contest on the thyroid comes out!!!:winking0001: (ok so I'm a little weird too!)


The PTU will work and once your labs are in the right place, you will be scheduled for surgery. That will be a "glory" day for sure!!!

You have set a very good example for other posters on this board on how to advocate for one's self!! I am very very impressed.


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## I DClaire

blessed1 said:


> I DClaire and Webster...It's kind of funny because so many people think I'm always happy. They say I have a great attitude. Truth is they aren't seeing me behind closed doors. I'm a basket case.
> 
> I've said things that freak people out so I won't say it here. But know that my positive attitude is sometimes my defense. Not always. But emotion is something I struggle to show.
> 
> Please don't ever think I'm "ok" because right now I'm not. I do have calm moments. I can keep it together. I also try to throw some "positive" in sometimes because it's the right thing to do. Or so I think.
> 
> I have decided that when I get a surgery date we need to have a celebration. So you all need to come to where I am and let's have fun! (I know it won't happen but a girl can dream).
> 
> It's thoughts like that that keep me going. And sometimes I tell myself tomorrow it will be better. I'm struggling holding on to that thought sometimes.
> 
> I do find strength and hope through this board, through all of your support and encouragement. Plus when someone has a bad day it shows me that I'm not alone (as bad as that sounds)
> 
> We have each other here. Through good times and bad. I'm hoping some day I can be hope for someone else!
> 
> That all said, those of you still reading I have an update. I had a comprehensive metabolic panel done yesterday. My doctor passed me in the hall and pulled me aside. She said I'm going to be taking "something like 16 pills a day". My doctor wanted to call me with my lab results. She said she would see me in two weeks. Then my doctor asked me how I was feeling. I said horrible. She opened her laptop and said "you know what; I want to see you Friday". My doctor says this way we can go over labs and see if we can deal with my eyes and headaches. She knows I don't complain about hurting. I complain about everything else lol.
> 
> So Friday it is. I'm glad because when I wake up in the morning, my roommate says my left eye "looks bulgy" and I have noticed that it is the first eye to open while my other one is comfortably closed. But then the day goes on and both eyes "look" normal. It's kind of weird to me.
> 
> But anyway, that's where I'm at right now. I'm waiting to start PTU until after labs are back. And then I'm praying it isn't expensive. Methimazole was bad enough in cost. But I imagine 16 pills a day is going to be costly.:scared0011:


I read not too long ago that there is a new theory being researched that has to do with suppressed emotions being behind a lot of mental and emotional problems, primarily depression and attention deficit problems. I have suppressed my emotions my entire life - I think I had to to cope with a lot of personal problems AND knowing what little I know about your background my guess is you did too. It's a survival mode. I have lived with extraordinary family stress my entire life plus my husband was diagnosed with serious coronary artery disease when he was 32 and I was 21. Sometimes, through some kind of natural survival skills I think we learn to hide our real feelings and deepest fears...only to pay the price later.

I've lived in the same town for close to 55 years. I know a lot of people...but I doubt more than 2-3 really know me. The older I get the less I seem to be able to always put on a happy face and really the less I care what others think but I very seldom share my true feelings.

My daughter fussed at me that one reason my doctors don't take me more seriously is that I can't seem to ever let my hair down and share what really is bothering me. They'll ask me how I'm doing and I'll smile and say I'm doing O.K. and automatically ask them how they're doing??? The dam broke this morning though. My doctor called with the results from yesterday's lab tests and she said I was doing great, there was no reason to change my 90 mg Armour. I lost it! I told her I'm at the end of my rope - I don't care if my numbers are perfect, I feel almost unbearable fatigue.

She is mailing me a copy of my latest lab results and did not change my prescription.


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## Andros

I DClaire said:


> I read not too long ago that there is a new theory being researched that has to do with suppressed emotions being behind a lot of mental and emotional problems, primarily depression and attention deficit problems. I have suppressed my emotions my entire life - I think I had to to cope with a lot of personal problems AND knowing what little I know about your background my guess is you did too. It's a survival mode. I have lived with extraordinary family stress my entire life plus my husband was diagnosed with serious coronary artery disease when he was 32 and I was 21. Sometimes, through some kind of natural survival skills I think we learn to hide our real feelings and deepest fears...only to pay the price later.
> 
> I've lived in the same town for close to 55 years. I know a lot of people...but I doubt more than 2-3 really know me. The older I get the less I seem to be able to always put on a happy face and really the less I care what others think but I very seldom share my true feelings.
> 
> My daughter fussed at me that one reason my doctors don't take me more seriously is that I can't seem to ever let my hair down and share what really is bothering me. They'll ask me how I'm doing and I'll smile and say I'm doing O.K. and automatically ask them how they're doing??? The dam broke this morning though. My doctor called with the results from yesterday's lab tests and she said I was doing great, there was no reason to change my 90 mg Armour. I lost it! I told her I'm at the end of my rope - I don't care if my numbers are perfect, I feel almost unbearable fatigue.
> 
> She is mailing me a copy of my latest lab results and did not change my prescription.


Oh, dang! We need to see those results and ranges pronto!! {{{{IDC}}}}


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## I DClaire

Andros said:


> Oh, dang! We need to see those results and ranges pronto!! {{{{IDC}}}}


I

I should probably get them tomorrow.


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## webster2

Oh IDC, I am so sorry. I was hoping that you would get an increase and begin to feel better. My heart is sad for you.


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## Octavia

I DClaire said:


> I read not too long ago that there is a new theory being researched that has to do with suppressed emotions being behind a lot of mental and emotional problems, primarily depression and attention deficit problems. I have suppressed my emotions my entire life - I think I had to to cope with a lot of personal problems AND knowing what little I know about your background my guess is you did too. It's a survival mode. I have lived with extraordinary family stress my entire life plus my husband was diagnosed with serious coronary artery disease when he was 32 and I was 21. Sometimes, through some kind of natural survival skills I think we learn to hide our real feelings and deepest fears...only to pay the price later.
> 
> I've lived in the same town for close to 55 years. I know a lot of people...but I doubt more than 2-3 really know me. The older I get the less I seem to be able to always put on a happy face and really the less I care what others think but I very seldom share my true feelings.
> 
> My daughter fussed at me that one reason my doctors don't take me more seriously is that I can't seem to ever let my hair down and share what really is bothering me. They'll ask me how I'm doing and I'll smile and say I'm doing O.K. and automatically ask them how they're doing??? The dam broke this morning though. My doctor called with the results from yesterday's lab tests and she said I was doing great, there was no reason to change my 90 mg Armour. I lost it! I told her I'm at the end of my rope - I don't care if my numbers are perfect, I feel almost unbearable fatigue.
> 
> She is mailing me a copy of my latest lab results and did not change my prescription.


Double-darnit.

Given what you wrote in your post, I am wondering whether you are seeing or would be willing to see a counselor on a regular basis for a little while. You have so much stored emotion & emotional energy...you HAVE to start talking about things and getting some of that out or you will not begin to feel good, and we know how much you want to feel good. I think you wrote a lot in that post. It really says a lot to me. You need to start listening better to your own needs and give yourself permission to have those needs met by you. It is okay to put yourself first sometimes, and this is one of those times where it's not only okay, but it's imperative. Please, please, please take care of yourself and your needs. (Have you thought more about your hubby's idea of going to the hospital?)


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## webster2

Good suggestion, Octavia. IDC, I see a counselor from my days as an untreated Graves maniac. I don't see her as often any more but it is a good place to go and vent for a whole hour, if I need to. Just sayin'


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## Gwen1

I DClaire said:


> I read not too long ago that there is a new theory being researched that has to do with suppressed emotions being behind a lot of mental and emotional problems, primarily depression and attention deficit problems. I have suppressed my emotions my entire life - I think I had to to cope with a lot of personal problems AND knowing what little I know about your background my guess is you did too. It's a survival mode.
> 
> The dam broke this morning though. My doctor called with the results from yesterday's lab tests and she said I was doing great, there was no reason to change my 90 mg Armour. I lost it! I told her I'm at the end of my rope - I don't care if my numbers are perfect, I feel almost unbearable fatigue.


Hi IDClaire, When I was undermedicated, the fatigue of not having enough thyroid hormone for my body's needs, included emotional fatigue as well. Overmedication or being hyperthyroid can also do a number on us . I have experienced overmedication.
Just wanted to gently remind you of the toll low thyroid hormones have on our physical body and our minds too. Thyroid hormone effects every cell, every organ, every system in our body.


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## Gwen1

Just read everyone's thoughts on counseling. I think counseling is an excellent idea. I haven't been to one. But if I find one that I click with, I think I would. Thyroid disease and the toll it takes on our brains should be a very good basis to seek out counseling. What part of this is physiological? How is it affecting the way I behave? -and the way I function? These are questions we can ask ourself and sort out with the help of a counselor working with us.


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## miltomeal

Blessed1 :hugs:

You go girl! This is great news for you! This board is terrific and we are all here to support you throughout this journey.

As with the others, I am very proud of you as well!!

take care


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## Andros

webster2 said:


> Good suggestion, Octavia. IDC, I see a counselor from my days as an untreated Graves maniac. I don't see her as often any more but it is a good place to go and vent for a whole hour, if I need to. Just sayin'


My hand is raised on that one; count me in! 2 years of counseling. Best time and money ever spent!


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## blessed1

I DClaire said:


> I read not too long ago that there is a new theory being researched that has to do with suppressed emotions being behind a lot of mental and emotional problems, primarily depression and attention deficit problems. I have suppressed my emotions my entire life - I think I had to to cope with a lot of personal problems AND knowing what little I know about your background my guess is you did too. It's a survival mode. I have lived with extraordinary family stress my entire life plus my husband was diagnosed with serious coronary artery disease when he was 32 and I was 21. Sometimes, through some kind of natural survival skills I think we learn to hide our real feelings and deepest fears...only to pay the price later.
> 
> I've lived in the same town for close to 55 years. I know a lot of people...but I doubt more than 2-3 really know me. The older I get the less I seem to be able to always put on a happy face and really the less I care what others think but I very seldom share my true feelings.
> 
> My daughter fussed at me that one reason my doctors don't take me more seriously is that I can't seem to ever let my hair down and share what really is bothering me. They'll ask me how I'm doing and I'll smile and say I'm doing O.K. and automatically ask them how they're doing??? The dam broke this morning though. My doctor called with the results from yesterday's lab tests and she said I was doing great, there was no reason to change my 90 mg Armour. I lost it! I told her I'm at the end of my rope - I don't care if my numbers are perfect, I feel almost unbearable fatigue.
> 
> She is mailing me a copy of my latest lab results and did not change my prescription.


You're in my thoughts and prayers IDC!


----------



## blessed1

Speaking of emotions and keeping them in....Today my floodgates opened. There was no real warning. One minute I'm sitting on the exam table talking to my doctor. The next I asked her "So how long from the time my levels come down til surgery? One month? Three months?" Then I burst into tears. She stopped what she was doing, placed her hand on the small of my back and said "Not that long. As soon as your levels come down you can have the surgery." I tried to be all tough and stuff. But I finally just let it out. I told her I'm so sick of being sick.

The world didn't stop. Nobody passed out or died because I cried. I lived through it too. The tears eventually subsided. And no one but me and her knew I cried. I trust her so I guess I figured it was ok.

Do I feel better? No. I have many more tears to cry. But some are gone. And more will fall. And it will be ok.

I know all about holding things in. IDC you are not alone. You have so many people who care about you. I'm learning to let go and trust. Look at my past. You know some of it from the other thread. It isn't easy at all for me to reach out for help, to trust anyone even when I desperately want to. But together we can all get through anything.

As for my doctors appointment, my metabolic panel looked good. My calcium was like .2 points higher than the range. I don't know anything about that. I'm good to start PTU. I'm taking 12 pills a day. My doctor said she was mistaken at the 16. She just knew it was alot. So 600mg. The endo says he has seen 1 patient go into liver failure. I guess that good. Bad for the patient but a better odd for me I mean.

Boy that came out wrong.....

Oh Andros you might want to sit down for this next bit of news  . My doctor has put in a call to a friend of hers to see if he will do her a favor. He is an opthamologist who has experience treating Grave's Disease. I should hear something Monday regarding that.

I call Monday to talk to my doctor. If I'm still having this awful headaches then I will be scheduling a CT scan of my brain. We are waiting to see if stopping Methimazole alleviates the pain. I'm hoping so because shoot I don't need anything else.

I'm starting the PTU in the morning. I'm still scared lol. So I'm prolonging the inevitable. I have really good excuses if anyone ever needs some. :tongue0015: lol

My next appointment is in two weeks unless my doctor changes her mind.  In the meantime I'm suppose to call and check in with her.

I'll let you all know how PTU goes.

Thanks for being here for me.


----------



## Andros

blessed1 said:


> Speaking of emotions and keeping them in....Today my floodgates opened. There was no real warning. One minute I'm sitting on the exam table talking to my doctor. The next I asked her "So how long from the time my levels come down til surgery? One month? Three months?" Then I burst into tears. She stopped what she was doing, placed her hand on the small of my back and said "Not that long. As soon as your levels come down you can have the surgery." I tried to be all tough and stuff. But I finally just let it out. I told her I'm so sick of being sick.
> 
> The world didn't stop. Nobody passed out or died because I cried. I lived through it too. The tears eventually subsided. And no one but me and her knew I cried. I trust her so I guess I figured it was ok.
> 
> Do I feel better? No. I have many more tears to cry. But some are gone. And more will fall. And it will be ok.
> 
> I know all about holding things in. IDC you are not alone. You have so many people who care about you. I'm learning to let go and trust. Look at my past. You know some of it from the other thread. It isn't easy at all for me to reach out for help, to trust anyone even when I desperately want to. But together we can all get through anything.
> 
> As for my doctors appointment, my metabolic panel looked good. My calcium was like .2 points higher than the range. I don't know anything about that. I'm good to start PTU. I'm taking 12 pills a day. My doctor said she was mistaken at the 16. She just knew it was alot. So 600mg. The endo says he has seen 1 patient go into liver failure. I guess that good. Bad for the patient but a better odd for me I mean.
> 
> Boy that came out wrong.....
> 
> Oh Andros you might want to sit down for this next bit of news  . My doctor has put in a call to a friend of hers to see if he will do her a favor. He is an opthamologist who has experience treating Grave's Disease. I should hear something Monday regarding that.
> 
> I call Monday to talk to my doctor. If I'm still having this awful headaches then I will be scheduling a CT scan of my brain. We are waiting to see if stopping Methimazole alleviates the pain. I'm hoping so because shoot I don't need anything else.
> 
> I'm starting the PTU in the morning. I'm still scared lol. So I'm prolonging the inevitable. I have really good excuses if anyone ever needs some. :tongue0015: lol
> 
> My next appointment is in two weeks unless my doctor changes her mind.  In the meantime I'm suppose to call and check in with her.
> 
> I'll let you all know how PTU goes.
> 
> Thanks for being here for me.


Oh, my goodness! Oh, my goodness!! What an answer to prayer if he will do this gratis. There are miracles everywhere. I can't wait for you to let us know and remember, whether it be a yes or a no; it is what it is and God has a hand in it.

You have such a caring doctor. Not many of us here can say that.


----------



## I DClaire

You know, blessed1, there have been more times in the past 4 years while I've been dealing with all things thyroid when I've felt like I couldn't take another day - particularly back when I was being batted from one specialist to another, having so many tests, etc. I felt like I was a medical "cash cow"...getting absolutely nowhere and quite frankly feeling like I might not make it. At one point I told my husband if I died I wanted to be sure I was autopsied!!

I have made it though. I've been telling myself a lot recently that the good Lord had helped me get this far, I guess I've got more determination or _something_ than I generally give myself credit for.

I hope and pray things are going to be O.K. for you, too. It sounds to me like you've had more than your share of obstacles to overcome and dysfunctional people to deal with. If you weren't strong you probably wouldn't be alive today...nor as able to manage your resources. For as hard as life can sometimes be, I'm old enough to truly believe that the adversities we face, if they don't kill us, really do make us stronger.

I know a woman my age (I've known her since we were teenagers) who has lived such a pampered life that she has NO resilience whatsoever. She knows absolutely nothing about anything except shopping...and now she's so emotionally distraught because her housekeeper for the past 45 years is ill and cannot continue working five days a week that she is unconsolable! I used to envy this person - I thought the life of a pampered princess beat the heck out of how hard I always had to work...but I don't feel that way anymore.


----------



## Octavia

blessed1...that is GREAT news about the opthalmologist!!!! I, too, will pray that this doc agrees to see/treat you for whatever you are able to pay. Keep us posted.

How are you doing so far on the PTU?


----------



## blessed1

Thanks to all of you for your prayers and support! It means so much to me.

Today my doctor called me. I don't get much signal at home. I have to always go into town to talk on the phone except for texting. So when I called her back I was told she was already gone for the day. Then ten minutes later she called back. My doctor told me to call the opthomologist and make the appointment. So I called. Well I couldn't get past the front desk. No matter what I said. The receptionist asked me why I was referred to that doctor. I told her. She told me he isn't accepting new patients at this time. Needless to say I hung up and called my doctor back. I left her a message telling her what had happened. I guess I will hear back from her tomorrow. Or something.

My doctor also has decided that an MRI would be better than a CT for my headaches. I know the headaches are likely not due to anything we would talk about here. I figured though since ya'll are praying it wouldn't hurt to mention that as well. I'm waiting for a call back on the price difference for those two things. My doctor likes to be as cost effective as possible with me being self-pay.

Octavia, you asked how I'm doing so far with the PTU. Well, so far so good I guess. My thyroid is getting bigger. My first two days on it seemed to keep me in the bathroom. I won't gross you out with the details. I'm glad to say that today has been better in that department. Maybe my body needed to adjust. I do find that I'm increasingly tired though. I don't know why. It is nice to not have the sore throat and flu like body aches though. I'm praying that this works fast. It would make my day to go back for labs in a month and find that my levels are down enough for surgery. Thanks for asking how I'm doing on it Octavia.

My eyes are really dry tonight. Gritty. I've discovered that I can adjust the back light on my computer though. So maybe I can be better about writing here than I have been the past few days.

You all are in my thoughts and prayers. I'll let you know what happens with the opthamologist and stuff once I know more.

hugs1hugs1hugs1


----------



## Octavia

Well, I take this as a good sign...your doctor apparently had a good conversation with the opthalmologist. I'm guessing the front desk doesn't know yet. Minor hiccup.

Glad you're adjusting to the PTU. Let's hope it does its job quickly for you!


----------



## blessed1

Octavia said:


> Well, I take this as a good sign...your doctor apparently had a good conversation with the opthalmologist. I'm guessing the front desk doesn't know yet. Minor hiccup.
> 
> Glad you're adjusting to the PTU. Let's hope it does its job quickly for you!


Thanks for the perspective Octavia. I needed that! I tend to be very pessimistic as of late. So it does me good to see an optimistic point of view. You're right. It is a minor hiccup. I'll let you all know when I hear something.


----------



## Andros

blessed1 said:


> Thanks to all of you for your prayers and support! It means so much to me.
> 
> Today my doctor called me. I don't get much signal at home. I have to always go into town to talk on the phone except for texting. So when I called her back I was told she was already gone for the day. Then ten minutes later she called back. My doctor told me to call the opthomologist and make the appointment. So I called. Well I couldn't get past the front desk. No matter what I said. The receptionist asked me why I was referred to that doctor. I told her. She told me he isn't accepting new patients at this time. Needless to say I hung up and called my doctor back. I left her a message telling her what had happened. I guess I will hear back from her tomorrow. Or something.
> 
> My doctor also has decided that an MRI would be better than a CT for my headaches. I know the headaches are likely not due to anything we would talk about here. I figured though since ya'll are praying it wouldn't hurt to mention that as well. I'm waiting for a call back on the price difference for those two things. My doctor likes to be as cost effective as possible with me being self-pay.
> 
> Octavia, you asked how I'm doing so far with the PTU. Well, so far so good I guess. My thyroid is getting bigger. My first two days on it seemed to keep me in the bathroom. I won't gross you out with the details. I'm glad to say that today has been better in that department. Maybe my body needed to adjust. I do find that I'm increasingly tired though. I don't know why. It is nice to not have the sore throat and flu like body aches though. I'm praying that this works fast. It would make my day to go back for labs in a month and find that my levels are down enough for surgery. Thanks for asking how I'm doing on it Octavia.
> 
> My eyes are really dry tonight. Gritty. I've discovered that I can adjust the back light on my computer though. So maybe I can be better about writing here than I have been the past few days.
> 
> You all are in my thoughts and prayers. I'll let you know what happens with the opthamologist and stuff once I know more.
> 
> hugs1hugs1hugs1


The PTU will kick in quickly and you will start to feel some better. Likewise the thoughts and prayers.

Let us hear from you when you are able.


----------



## blessed1

Andros said:


> The PTU will kick in quickly and you will start to feel some better. Likewise the thoughts and prayers.
> 
> Let us hear from you when you are able.


Thanks Andros! The PTU is actually doing something I think. My tremors are not as pronounced today. I've been itchy though. Not unbearably. No rash. Nothing like that so I figure it's a fair trade off. Itching began yesterday.

I wasn't able to see the original opthamologist. He is just too busy. My doctor did give me her second choice yesterday. I called him per her request today and he wants to see me in two hours! Talk about fast gee whiz. I'm grateful even though it won't be gratis. He said he will work with me though. So I'm happy about that.

I will write more when I get home tonight. It's an hour and a half drive. I just really wanted to update you all and ask for more prayers.

Thanks again. Talk to ya all soon hugs3


----------



## blessed1

Today wasn't a shout from the streets hallelujah kind of day. My appointment went ok. I guess. It did nothing more than to validate my eye issues. Things happened pretty fast with the doctor. I think the tech spent more time with me.

Here's what I walked out of there with: My right eye isn't closing all the way. He says my blur around my left eye is "probably dryness" and artificial tears would be helpful as well as some kind of ointment for at night. I don't remember the name so if anyone has suggestions on the best artificial tears and ointment please let me know. He also said i have mild lid retraction.

I almost laughed when he said "come back in a year". I said really a year? Then he said well if you develop anything new call me.

They did dilate my eyes. Did the glaucoma test to. No glaucoma. So that is something good. I'm still very blurry from the dilation though. I dont remember it ever lasting this long.

The nice thing was he discounted me 50% after realizing I didn't have insurance. He said Graves is a wicked mean thing. He said it was too bad I dont even have medical.

I walked out of there and thought about the visit. I thought well I must be fine and losing my mind a little. I realized just how lucky I am that my family doctor is the way she is. I am truly blessed to have her on my side. I'm going to tell her next time I see her that I am referring all of you to her LOL:tongue0015: just kidding.

Anyway, if anyone has a suggestion on the artificial tears and the ointment let me know please.

Thanks!


----------



## blessed1

My doctor called me yesterday. She wanted to check on me before the weekend. I thought that was really sweet. It made me feel like I matter.

I found out my thyroid ultrasound is going to be on April 11th in the afternoon. I know it isn't a big deal. I'm a little nervous though anyway.

Hope you all are having a great weekend!


----------



## Andros

blessed1 said:


> Thanks Andros! The PTU is actually doing something I think. My tremors are not as pronounced today. I've been itchy though. Not unbearably. No rash. Nothing like that so I figure it's a fair trade off. Itching began yesterday.
> 
> I wasn't able to see the original opthamologist. He is just too busy. My doctor did give me her second choice yesterday. I called him per her request today and he wants to see me in two hours! Talk about fast gee whiz. I'm grateful even though it won't be gratis. He said he will work with me though. So I'm happy about that.
> 
> I will write more when I get home tonight. It's an hour and a half drive. I just really wanted to update you all and ask for more prayers.
> 
> Thanks again. Talk to ya all soon hugs3


Yippee!! Sending tons and tons of prayers your way!! Let us know as soon as you are able.


----------



## Octavia

Oooohhhh.....this is great news.....looking forward to hearing about your appointment.


----------



## blessed1

I just realized ya'll are waiting for a response about my eye doctor appointment. I believe there are a couple entries above that no one has seen. Either that or there is a reason why I feel like I am having deja vu. *giggles*

Rather than bore you with repeating those entries, I'll just leave it for you to go back and read. If I'm seeing them but you arent, let me know and I will repost it.

Moving on....tomorrow I have my nurse appointment. I will be talking to my doctor unless she has something come up. It dawned on me that tomorrow is Good Friday. Maybe it will be quiet there.

I'm doing ok on my meds. I has a tiny incident at the pharmacy with it though. They only had ten days worth in the beginning. I was set up for auto refill. Well the day before the refill was promised they called wanting to know if I still wanted the PTU. I said uh yes????

Needless to say they were short, ordered more and finally I have a months supply. So it is all good.

I'm more tired than ever yet I am struggling to sleep. I have had a few panic attacks. It's kind of interesting to say that because there seems to be a place where my thyroid levels get where the panic attacks are more prevalent. Just an observation. Kind of like being too high was ok but coming down isn't. Unless I'm still going up. Gosh I pray not.

I'm believing for the best. My heart rate is under 120 *YAY* and unfortunately I feel like I'm gaining weight. Tremors are much better too. So I see a difference.

You all are in my thoughts and prayers. I'll update sometime this weekend after my appointment. Two weeks and the first labs since starting PTU will be drawn.


----------



## Octavia

You're right...I did not see it before!

Sounds like the eye doctor was not overly concerned with what he saw. Once you get your thyroid levels down and can have surgery, if your eyes need help, you can tackle that next.

Keep us posted!


----------



## blessed1

Octavia said:


> You're right...I did not see it before!
> 
> Sounds like the eye doctor was not overly concerned with what he saw. Once you get your thyroid levels down and can have surgery, if your eyes need help, you can tackle that next.
> 
> Keep us posted!


The eye doctor was not very personable at all. Not that that has anything to do with anything. Other than the fact that he just examined my eyes and never asked much of anything. I had to volunteer information to which his response was just Grave's disease is a wicked thing.

Not something I'm going to worry about right now. Tackle it later. 

My doctor asked about the appointment after and I told her what was done. She said "well you know I just have a problem with eyeballs popping out" I laughed even though I know how serious things can get. She knows how to lighten the load so to speak.


----------



## Octavia

blessed1 said:


> My doctor asked about the appointment after and I told her what was done. She said "well you know I just have a problem with eyeballs popping out" I laughed even though I know how serious things can get. She knows how to lighten the load so to speak.


Good. Sounds like she'll be keeping an eye on it. No pun intended.


----------



## Andros

blessed1 said:


> Today wasn't a shout from the streets hallelujah kind of day. My appointment went ok. I guess. It did nothing more than to validate my eye issues. Things happened pretty fast with the doctor. I think the tech spent more time with me.
> 
> Here's what I walked out of there with: My right eye isn't closing all the way. He says my blur around my left eye is "probably dryness" and artificial tears would be helpful as well as some kind of ointment for at night. I don't remember the name so if anyone has suggestions on the best artificial tears and ointment please let me know. He also said i have mild lid retraction.
> 
> I almost laughed when he said "come back in a year". I said really a year? Then he said well if you develop anything new call me.
> 
> They did dilate my eyes. Did the glaucoma test to. No glaucoma. So that is something good. I'm still very blurry from the dilation though. I dont remember it ever lasting this long.
> 
> The nice thing was he discounted me 50% after realizing I didn't have insurance. He said Graves is a wicked mean thing. He said it was too bad I dont even have medical.
> 
> I walked out of there and thought about the visit. I thought well I must be fine and losing my mind a little. I realized just how lucky I am that my family doctor is the way she is. I am truly blessed to have her on my side. I'm going to tell her next time I see her that I am referring all of you to her LOL:tongue0015: just kidding.
> 
> Anyway, if anyone has a suggestion on the artificial tears and the ointment let me know please.
> 
> Thanks!


I used (and still do) Refresh drops by day and Lacrilube by night. You don't have to get the name brand Lacrilube. There are plenty of ointments (read the ingrediets to make sure it's the same) and you could save a couple of dollars. Look for coupons for the lubricating drops too. Blink is good also.

Your regular doctor will make sure you get the necessary help for your eyes if they get worse and I am praying they don't. "If" you get that surgery, it could stop dead in it's tracks. I hope for that.

At least you have touched bases and it sounds like the doc treated you really really nicely.


----------



## msmanatee

I haven't posted for a long time but wanted to pop into your thread here to recommend Systane lubricating drop, too. The individual vials contain no preservatives, which my ophthalmologist believes is very important. Also, I was told that a CT scan is far more effective than an MRI to determine if Thyroid Eye Disease may be causing the eye/headache symptoms. I am having a heck of a time w/ eye inflammation and wondering if I have allergies on top of TED.


----------



## Andros

msmanatee said:


> I haven't posted for a long time but wanted to pop into your thread here to recommend Systane lubricating drop, too. The individual vials contain no preservatives, which my ophthalmologist believes is very important. Also, I was told that a CT scan is far more effective than an MRI to determine if Thyroid Eye Disease may be causing the eye/headache symptoms. I am having a heck of a time w/ eye inflammation and wondering if I have allergies on top of TED.


Systane is good! Look for coupons!! LOL!!! And that is correct; OTC drops like Murine that contain antihistamines cause the GED/TED eyes to worsen.

Good tip; thank you as I had forgotten!


----------



## msmanatee

Typical Andros, does not even take Easter off!  You are such a Blessing!

I was going to add that the eye moisture gels are supposed to be good for stubborn TED burning but I haven't tried them yet. Any minute now, though...


----------



## Andros

msmanatee said:


> Typical Andros, does not even take Easter off!  You are such a Blessing!
> 
> I was going to add that the eye moisture gels are supposed to be good for stubborn TED burning but I haven't tried them yet. Any minute now, though...


I do "NOT" like the gels.................at all. Tried a couple and feel it was a waste of money. The main problem is they do not hold over night.

No days off for folks who need help, that is for sure and I love whatever I am able to do.

And we love Easter. We get to have 2 Easters; hubby is Greek Orthodox. That is next Sunday! And.............we also have Passover now.


----------



## blessed1

Thanks for the information on the drops and the ointment. I was able to find the drops without a problem. The ointment however seems to be evading me. I guess I may have to hit a bigger store for that.

I also wanted to update a little on my thyroid ultrasound that was suppose to take place yesterday. Notice the word "was". If ever there was a test in patience, yesterday was it!

Last Friday I had asked my doctor about making a payment plan for the ultrasound. She promised to find out something for me and get back to me Monday. Well, Monday came and went. I chalked it up to she got busy (understandable).

So Tuesday I called the office and asked again. No one had an answer for me. So I told them let's go ahead and cancel it until we know what is expected of me payment wise. Ok no big deal.

That evening right before the doctor's office closed I get a phone call. I drive to town to hear the message. (Like I said before I live in the boonies so I'm cell phone challenged lol). The message said someone who works for the ultrasound place will be calling me with payment plan information. Ok cool.

So yesterday morning I get another voicemail. Drive to town. It's 8am mind you. And I am so not a morning person. The message was from the ultrasound tech. She's calling to tell me how much cash pay price is. Then she asks me to call her back as to if I am coming or not.

I call and leave her a message telling her no I am not coming. I cancelled the day before and I need a payment plan.

Get home. An hour later another message. Drive to town. This message reiterates the price and asks me to call her back. So I do and this scenario of phone tag plays out until finally after five times of asking about a payment plan, she tells me she "thinks" it is possible and to reschedule my appointment. (Now that by this time my appointment is ready to begin)

I know I shouldn't have gotten frustrated. I mean, no one truly understands it when I say "I don't get a signal at home". But by the end of yesterday I was feeling really cranky. I know that may come as a shock to some of you. *giggles*

That's the story of yesterday. I have sat around today questioning why I even need this ultrasound. Ultimately my thyroid is coming out so does it really make a difference?

Hopefully you all will give me your opinions on that question. 

I'm still finding my heart rate is down and my tremors are so much better. So much so I can actually write from time to time with a PEN lol. At times I am feeling really jittery though. That is new for me. Emotional too.

Like a firecracker!

Holding on to the good while I wait for the rest to come in line. I'm glad I have you all to share it with  (the good, the bad and the growls)


----------



## Andros

blessed1 said:


> Thanks for the information on the drops and the ointment. I was able to find the drops without a problem. The ointment however seems to be evading me. I guess I may have to hit a bigger store for that.
> 
> I also wanted to update a little on my thyroid ultrasound that was suppose to take place yesterday. Notice the word "was". If ever there was a test in patience, yesterday was it!
> 
> Last Friday I had asked my doctor about making a payment plan for the ultrasound. She promised to find out something for me and get back to me Monday. Well, Monday came and went. I chalked it up to she got busy (understandable).
> 
> So Tuesday I called the office and asked again. No one had an answer for me. So I told them let's go ahead and cancel it until we know what is expected of me payment wise. Ok no big deal.
> 
> That evening right before the doctor's office closed I get a phone call. I drive to town to hear the message. (Like I said before I live in the boonies so I'm cell phone challenged lol). The message said someone who works for the ultrasound place will be calling me with payment plan information. Ok cool.
> 
> So yesterday morning I get another voicemail. Drive to town. It's 8am mind you. And I am so not a morning person. The message was from the ultrasound tech. She's calling to tell me how much cash pay price is. Then she asks me to call her back as to if I am coming or not.
> 
> I call and leave her a message telling her no I am not coming. I cancelled the day before and I need a payment plan.
> 
> Get home. An hour later another message. Drive to town. This message reiterates the price and asks me to call her back. So I do and this scenario of phone tag plays out until finally after five times of asking about a payment plan, she tells me she "thinks" it is possible and to reschedule my appointment. (Now that by this time my appointment is ready to begin)
> 
> I know I shouldn't have gotten frustrated. I mean, no one truly understands it when I say "I don't get a signal at home". But by the end of yesterday I was feeling really cranky. I know that may come as a shock to some of you. *giggles*
> 
> That's the story of yesterday. I have sat around today questioning why I even need this ultrasound. Ultimately my thyroid is coming out so does it really make a difference?
> 
> Hopefully you all will give me your opinions on that question.
> 
> I'm still finding my heart rate is down and my tremors are so much better. So much so I can actually write from time to time with a PEN lol. At times I am feeling really jittery though. That is new for me. Emotional too.
> 
> Like a firecracker!
> 
> Holding on to the good while I wait for the rest to come in line. I'm glad I have you all to share it with  (the good, the bad and the growls)


The only difference it would make is the money in someone's pocket; not yours. If that thyroid is coming out, it is my humble opinion that ultra-sound is not necessary.

You have an interesting life!!! Love your tales! Don't worry; everything will work out!


----------



## blessed1

Andros said:


> The only difference it would make is the money in someone's pocket; not yours. If that thyroid is coming out, it is my humble opinion that ultra-sound is not necessary.
> 
> You have an interesting life!!! Love your tales! Don't worry; everything will work out!


Thanks Andros! Yeah I kind of thought the same about the money end of it. I'm not going to worry about it.

I had labs Wednesday. Today at 1pm I have my doctor appointment for the labs. I'm really quite nervous. This is the one month mark of the PTU. So my doctor ordered a free t4, total t3 and a liver comp.

The tech missed my vein the first time around. Same tech as always. She's a little gruff and rough anyway. But never has she missed. Oh well. We got it the second time.  Then found out that the wrong test was ordered. Luckily it uses the same tube so no third stick. (yeah you are quite right Andros, I do lead an interesting life lol)

It is probably weird to be this nervous about a test. But I am longing to hear my levels are coming down. I'm scared to hear anything else. Unfortunately, realistically, I'm feeling like I'm higher again. I don't know if my body adjusted to the meds like it was doing with the beta blocker or what. But I felt better and now I feel bad again.

But there is hope. Maybe I'm just leveling out and we need to increase it.

Anyway, I am going in with a positive attitude. If my parade gets rained on, so be it. I will pick myself up and continue to fight.

Please keep me in your prayers today.

Will let you know what transpires.

hugs1


----------



## Andros

blessed1 said:


> Thanks Andros! Yeah I kind of thought the same about the money end of it. I'm not going to worry about it.
> 
> I had labs Wednesday. Today at 1pm I have my doctor appointment for the labs. I'm really quite nervous. This is the one month mark of the PTU. So my doctor ordered a free t4, total t3 and a liver comp.
> 
> The tech missed my vein the first time around. Same tech as always. She's a little gruff and rough anyway. But never has she missed. Oh well. We got it the second time.  Then found out that the wrong test was ordered. Luckily it uses the same tube so no third stick. (yeah you are quite right Andros, I do lead an interesting life lol)
> 
> It is probably weird to be this nervous about a test. But I am longing to hear my levels are coming down. I'm scared to hear anything else. Unfortunately, realistically, I'm feeling like I'm higher again. I don't know if my body adjusted to the meds like it was doing with the beta blocker or what. But I felt better and now I feel bad again.
> 
> But there is hope. Maybe I'm just leveling out and we need to increase it.
> 
> Anyway, I am going in with a positive attitude. If my parade gets rained on, so be it. I will pick myself up and continue to fight.
> 
> Please keep me in your prayers today.
> 
> Will let you know what transpires.
> 
> hugs1


Keeping you in my prayers today and every day and lots of hugs too!

Hope all goes well and please let us know when you know!


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## miltomeal

you are also in my thoughts and prayers Blessed1!

Best wishes


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## Octavia

I do hope you received good news at your appointment. But don't be too discouraged if it's not what you've been hoping for yet. You'll get there. 

:hugs:


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## blessed1

Thanks everyone for the good thoughts and prayers. I'm so sorry I couldn't get on sooner to update. Internet issues kept me away. But it all seems to be fixed so we shall see.

So my doctor appointment....My liver function came back good. At least no red flags to keep me from taking my PTU. As for my thyroid levels (drum roll please) My total t3 is down from >800 and 794 (last two labs) to the 200's. And my free t4 is down to 3.8 or somewhere in there. It was something like 7.6 I believe last time. So everything is at least half of what it was after a month on 600mg of PTU per day. I am so sorry I don't have my labs in front of me. I may update this again once I get my copy out. I just got excited to have internet again lol.

I was ok with the results. I know I should be happy. And I am. In a way. But I am also frustrated.

I'm frustrated because my dr cut the PTU back to 400mg/day. I just don't get why. My thoughts are why mess with a good thing? I mean if I can go half down in a month why not knock this thing all the way down and take it out by month two? Ok so maybe my thinking isn't right but still.

My dr was in an odd mood when I saw her. Not her usual spend an hour with you kinda day. It was a very rushed appointment and I was charged full price which isn't normal either. But ok. Everyone has a bad day.

Here's a question though that I have. I have cut back the PTU as she told me to do and am feeling worse. I don't know if we dropped down to far or what but my heart rate is increasing again and my neck is more uncomfortable than it has been in awhile. Should I call her and ask if I can increase again at least to 500mg/day? Or just ride this month out and whatever will be will be?

Just could use some opinions on that if you all don't mind.

She did feel my neck again and reiterated how she really wants that thyroid ultrasound. I don't see what difference that's gonna make. Since she was too rushed or whatever, I'm just conveniently "forgetting" about it 

I go back for next months labs on the 16th of May. Next dr appointment is the 18th. I have gone from every few days at the doctor to every week to skipping one week and now a month. So I guess that is progress I should be happy about too. I admit I'm worried though. Because at least once a week we could adjust as we needed to.

My biggest fear is I'm going to be right back where we started by next months labs.

Stupid fear I know. But it's there. And I know my med isn't right because I am feeling very whiny and weepy on top of everything else. I want my good couple of weeks back! 

I'm rambling and probably not making any sense. So I will close for now.

Missed you all very much!


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## Andros

blessed1 said:


> Thanks everyone for the good thoughts and prayers. I'm so sorry I couldn't get on sooner to update. Internet issues kept me away. But it all seems to be fixed so we shall see.
> 
> So my doctor appointment....My liver function came back good. At least no red flags to keep me from taking my PTU. As for my thyroid levels (drum roll please) My total t3 is down from >800 and 794 (last two labs) to the 200's. And my free t4 is down to 3.8 or somewhere in there. It was something like 7.6 I believe last time. So everything is at least half of what it was after a month on 600mg of PTU per day. I am so sorry I don't have my labs in front of me. I may update this again once I get my copy out. I just got excited to have internet again lol.
> 
> I was ok with the results. I know I should be happy. And I am. In a way. But I am also frustrated.
> 
> I'm frustrated because my dr cut the PTU back to 400mg/day. I just don't get why. My thoughts are why mess with a good thing? I mean if I can go half down in a month why not knock this thing all the way down and take it out by month two? Ok so maybe my thinking isn't right but still.
> 
> My dr was in an odd mood when I saw her. Not her usual spend an hour with you kinda day. It was a very rushed appointment and I was charged full price which isn't normal either. But ok. Everyone has a bad day.
> 
> Here's a question though that I have. I have cut back the PTU as she told me to do and am feeling worse. I don't know if we dropped down to far or what but my heart rate is increasing again and my neck is more uncomfortable than it has been in awhile. Should I call her and ask if I can increase again at least to 500mg/day? Or just ride this month out and whatever will be will be?
> 
> Just could use some opinions on that if you all don't mind.
> 
> She did feel my neck again and reiterated how she really wants that thyroid ultrasound. I don't see what difference that's gonna make. Since she was too rushed or whatever, I'm just conveniently "forgetting" about it
> 
> I go back for next months labs on the 16th of May. Next dr appointment is the 18th. I have gone from every few days at the doctor to every week to skipping one week and now a month. So I guess that is progress I should be happy about too. I admit I'm worried though. Because at least once a week we could adjust as we needed to.
> 
> My biggest fear is I'm going to be right back where we started by next months labs.
> 
> Stupid fear I know. But it's there. And I know my med isn't right because I am feeling very whiny and weepy on top of everything else. I want my good couple of weeks back!
> 
> I'm rambling and probably not making any sense. So I will close for now.
> 
> Missed you all very much!


I don't get it either. If the dose got you there, that is a good thing and why tamper? Also, you could stand to go down even further. Especially with surgery scheduled.

Yes; call her. By all means. You pay her plenty!!!


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## blessed1

Thanks Andros.

I did call my doctor. I have left messages but so far have not heard back. I don't want to keep calling her and be viewed as a "bother" though.

I just wanted to update. I don't really have anything new to share since nothing seems to be going right right now.

Today is an "off" day for me mentally and physically. I can't pinpoint a good reason for it other than I'm frustrated and tired of this. Sometimes I'm tempted to just up the med and when I see her on the 18th admit it.

But I am too good of a patient I guess to do my own thing *sighs*

Sorry I took my eyes off the light at the end of the tunnel and am having trouble keeping my focus and getting my eyes back on it.



Hugs to all


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## blessed1

It's been a week since I updated. Life just keeps throwing me one curve ball after another. Please forgive my sporadic writings.

Tomorrow I'm suppose to have four labs. Yes it has been two months since I began PTU. Well close to two months. I'm suppose to have a free t4, total t3, comprehensive metabolic panel and a cbc. However I have to walk in there tomorrow and ask my doctor to choose only one test. Which is the most important? I mean, I know they all are but I can only afford to have one done for now. So any advice would be appreciated.

Thanks. I've got more to say (of course) but I will start with that question.....

Again, sorry I haven't been around as much as I want and need to be.


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## Andros

blessed1 said:


> It's been a week since I updated. Life just keeps throwing me one curve ball after another. Please forgive my sporadic writings.
> 
> Tomorrow I'm suppose to have four labs. Yes it has been two months since I began PTU. Well close to two months. I'm suppose to have a free t4, total t3, comprehensive metabolic panel and a cbc. However I have to walk in there tomorrow and ask my doctor to choose only one test. Which is the most important? I mean, I know they all are but I can only afford to have one done for now. So any advice would be appreciated.
> 
> Thanks. I've got more to say (of course) but I will start with that question.....
> 
> Again, sorry I haven't been around as much as I want and need to be.


Actually the FREE T3 test would be the most important but if you cannot do that one (I think it costs more), and I had to settle, I would go for the FREE T4.

Let's see what others think..................


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## miltomeal

Could you check into self ordering a test? I know that where i am, it is much cheaper than having a doctor order the tests for me.

Andros knows what she is talking about and i am inclined to listen to her.

Best wishes


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## Octavia

blessed1, I've been wondering about you and how you are doing.

As for the labs...I would follow Andros' advice. And miltomeal has a good idea as well about ordering your own labs. If I remember correctly, you have lousy insurance or no insurance, so if ordering your own labs lets you get more for less, that might be a good bet.

You may want to ask your doctor which labs she will actually use to make the decision about whether you are "ready" for surgery, and let that be your guide about which labs to get done.


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## blessed1

Thanks Andros, miltomeal, and Octavia.

I could access the thread from my phone which was awesome! So I was able to read what you all said before I went to get the labs done. I did end up just getting the free t4. My doctor wanted the total t3 too. I still don't get why she won't budge on the total and make it a free but ok. So yeah, just the free t4 was done.

I get those results in a few hours. I'm really nervous. I don't know why. Maybe partially because today I'm going to try to get her to slow down long enough to discuss the varying payments she asks from me.

I was blessed though in the simple fact that I informed her I couldn't pay for a full visit today and offered to cancel my appointment. She didn't seem to like the idea so we agreed to pay ten dollars and bill me for the rest. I figure ok if she will work with me then I will go. I probably need to see her anyway.

I'm going to come back later and write some more stuff that I'm curious about and I will update at that point.

Here's to month two PTU results!


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## Andros

blessed1 said:


> Thanks Andros, miltomeal, and Octavia.
> 
> I could access the thread from my phone which was awesome! So I was able to read what you all said before I went to get the labs done. I did end up just getting the free t4. My doctor wanted the total t3 too. I still don't get why she won't budge on the total and make it a free but ok. So yeah, just the free t4 was done.
> 
> I get those results in a few hours. I'm really nervous. I don't know why. Maybe partially because today I'm going to try to get her to slow down long enough to discuss the varying payments she asks from me.
> 
> I was blessed though in the simple fact that I informed her I couldn't pay for a full visit today and offered to cancel my appointment. She didn't seem to like the idea so we agreed to pay ten dollars and bill me for the rest. I figure ok if she will work with me then I will go. I probably need to see her anyway.
> 
> I'm going to come back later and write some more stuff that I'm curious about and I will update at that point.
> 
> Here's to month two PTU results!


Gee whiz!!! Well the FT4 is better than nothing but that does not give us a clue as to what your active hormone (FREE T3) is like.

I'll tell you what; we are going to all just have to do our best here and place our trust in all that we believe to be true and see how this all plays out here.

And...........

You could go to this site and see what you can turn up. Tell them you want to know what only the FREE T3 test costs.

HealthCheckUSA
http://www.healthcheckusa.com/


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## blessed1

Andros said:


> Gee whiz!!! Well the FT4 is better than nothing but that does not give us a clue as to what your active hormone (FREE T3) is like.
> 
> I'll tell you what; we are going to all just have to do our best here and place our trust in all that we believe to be true and see how this all plays out here.
> 
> And...........
> 
> You could go to this site and see what you can turn up. Tell them you want to know what only the FREE T3 test costs.
> 
> HealthCheckUSA
> http://www.healthcheckusa.com/


Thanks Andros! I will definitely take a look at that site and see what I can come up with. Thanks for the link 

Now for an update.......

As you all know, I went to the doctor on Friday to get the results of my free T4 lab.

After vitals which were ok I guess other than an elevated temp and bp, I sat in the exam room for a good thirty minutes or so. It isn't commonplace to sit like that but it gave me time to think. Maybe too much time lol but anyway, I digress.

After the thirty minutes or so there was a knock on the door and my doctor opened it. She didn't walk through but rather wore this huge grin and asked "Should I dance and jump up and down or would you rather I let you sit here longer?" I could tell from her grin something good was about to happen. But instead of jumping and saying tell me tell me, I played it up and said "um I don't know maybe see someone else and come back" :tongue0015:

Then of course I said sure jump up and down and dance because THIS I've gotta see! lol

Anyway, long story short, my free T4 is 1.5 (range of 0.8 - 1.8) When my doctor said I was normal I think there was a mixture of shock for me and still the question of am I really "normal".

But I do have to admit it is the first time in my life I think where someone has called me normal in any sense of the word so 

It has been well over ten years since this journey began. It is far from over but my free T4 was all she needed to see to send me on the next step of my journey.

I am now armed with a load of paperwork to fill out. Apparently the county I live in has started a healthcare hospital program (different from Medicaid). My doctor discovered it after researching how to get my surgery done.

So next step is to fill this paperwork out and pray I get accepted. If I get accepted then I have to see a county doctor and ask for a referral to an ENT. And THEN comes surgery.

At least that's the plan. Originally I was told I could have the surgery as soon as my level was normal. But of course money talks and since I no longer have any....it's a waiting game and more hoops to jump through.

But I've come this far. I'm not stopping now.

As for the PTU, she cut me back further. I told her about how I felt last time we cut it back. She said if it happens again to call and just say that I'm feeling bad and she will talk to me about it. Apparently somewhere in the messages I left last month, there was a huge miscommunication.

I go back June 6th for a repeat free T4 (still can't get her to budge on that darn free T3). And then I see her again on June 8th. She still wants a comprehensive metabolic panel sometime between now and then if I can do it. We will see on that.

So, that's the story.

I'm happy we are moving forward. But at the same time I'm hesitant to start celebrating another victory. Not sure why.

And I sure wish I could say I feel normal. But I truly don't. What's up with that?!

hugs6 to all


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## Octavia

blessed1, this is great news!!!! I do hope you get accepted into the assistance program! Fingers crossed for you.


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## Andros

blessed1 said:


> Thanks Andros! I will definitely take a look at that site and see what I can come up with. Thanks for the link
> 
> Now for an update.......
> 
> As you all know, I went to the doctor on Friday to get the results of my free T4 lab.
> 
> After vitals which were ok I guess other than an elevated temp and bp, I sat in the exam room for a good thirty minutes or so. It isn't commonplace to sit like that but it gave me time to think. Maybe too much time lol but anyway, I digress.
> 
> After the thirty minutes or so there was a knock on the door and my doctor opened it. She didn't walk through but rather wore this huge grin and asked "Should I dance and jump up and down or would you rather I let you sit here longer?" I could tell from her grin something good was about to happen. But instead of jumping and saying tell me tell me, I played it up and said "um I don't know maybe see someone else and come back" :tongue0015:
> 
> Then of course I said sure jump up and down and dance because THIS I've gotta see! lol
> 
> Anyway, long story short, my free T4 is 1.5 (range of 0.8 - 1.8) When my doctor said I was normal I think there was a mixture of shock for me and still the question of am I really "normal".
> 
> But I do have to admit it is the first time in my life I think where someone has called me normal in any sense of the word so
> 
> It has been well over ten years since this journey began. It is far from over but my free T4 was all she needed to see to send me on the next step of my journey.
> 
> I am now armed with a load of paperwork to fill out. Apparently the county I live in has started a healthcare hospital program (different from Medicaid). My doctor discovered it after researching how to get my surgery done.
> 
> So next step is to fill this paperwork out and pray I get accepted. If I get accepted then I have to see a county doctor and ask for a referral to an ENT. And THEN comes surgery.
> 
> At least that's the plan. Originally I was told I could have the surgery as soon as my level was normal. But of course money talks and since I no longer have any....it's a waiting game and more hoops to jump through.
> 
> But I've come this far. I'm not stopping now.
> 
> As for the PTU, she cut me back further. I told her about how I felt last time we cut it back. She said if it happens again to call and just say that I'm feeling bad and she will talk to me about it. Apparently somewhere in the messages I left last month, there was a huge miscommunication.
> 
> I go back June 6th for a repeat free T4 (still can't get her to budge on that darn free T3). And then I see her again on June 8th. She still wants a comprehensive metabolic panel sometime between now and then if I can do it. We will see on that.
> 
> So, that's the story.
> 
> I'm happy we are moving forward. But at the same time I'm hesitant to start celebrating another victory. Not sure why.
> 
> And I sure wish I could say I feel normal. But I truly don't. What's up with that?!
> 
> hugs6 to all


This is incredible!!! Truly! What a wonderful outcome! I have put you on my prayer list "for" acceptance to that program.

And since your doc cut your PTU, don't hesitate to call her if you feel like you need an adjustment!!!

And by the way; there is a huge lag time between the numbers and the body. So, I do hope you "feel it" soon!


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## blessed1

Thanks Octavia and Andros!

Well I just sat here and wrote this long drawn out post. And lost it. lol So I'm gonna give this another try.

After reading your replies, I guess I should get kind of excited now. I've been being cautiously optimistic. Maybe even a little caught off guard.

It's interesting how we can hope for something; want something so badly; get it and then sit there and say um now what do I do with it? 

I guess you might say my body is starting to catch up. Considering I'm not a morning girl and have been waking up at 7am the past two days. Craziness! Add to that the fact that I've done laundry and started deep cleaning the house. It's only been a decade since I've even been motivated enough to do it let alone had a heart rate where I could exert myself.

Wow I just reread that paragraph. Don't get the wrong idea, I don't have a decades worth of dirt accumulated LOL. It's just been something I had to have help taking care of.

I've gained 12 pounds since starting PTU two months ago. Maybe being a little active will do me some good in that area although I'm not gonna worry about it. Compared to where I was just two months ago, I'm ok with it. I can't believe I'm saying that. I guess I'm realizing I may never be a slender attractive looking girl but in the grand scheme of things just feeling better is enough for me. Compared to Grave's. Yeah.

I know I could never have continued on this journey without this place and all of you. Thank you for always being here and for sharing your journeys, frustrations, fears, victories. I wanted to give up so many times. But this board has been a beacon of hope for me.

Life is a journey full of twists and turns. At least that is what I think. The roads lead us different places at different times. But we are blessed to be able to take what we encounter, what we learn, what we find along the way and share it with someone else.

A decade or more ago when I began walking the road called Grave's I saw the sign that said no turning back. And it was right. Once on that road there was no turning back. Then it became like a desert with no oasis in sight. No cool breezes, no grassy places, no birds. Just briars and thorns and hot sun baked clay.

I never chose to go down that road. But there is a reason I was given that road to go down.

I thought for sure it was a dead end filled with death. I mean the despair on that road is great enough. But seeing signs like Danger and Beware; hearing Grave's growl and having nowhere to hide, nowhere to run. Who feels like running anyway? I mean seriously. I just wanted to sit and say fine I'm done. I quit. Whatever is lurking out there can have at me.

But I kept walking. Granted it was slow and sometimes I stopped. But just when I thought what's the point? I found this board and all of you. Two months ago I thought I saw an oasis in the distance; but figured it was just another mirage.

The mirage I thought I saw...well, it was real. And you know what? That's enough to keep me walking with all of you by my side.

I want to know what lies ahead. What's next?

I think I see......could it be? I think I see green in the distance.

(ok so I kinda got carried away with my metaphor. Sorry about that)

I just want to say thanks to all of you for being a part of my journey and for allowing me into yours.

Now that I have this vision of the wizard of oz in my head (lions and tigers and bears oh my):tongue0015: I guess I need to end this thing before I start singing follow the yellow brick road.  lol

More later


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## Octavia

Pay no attention to that man behind the curtain. 

I am so glad to read your post. Seriously, there's a great poem in there somewhere to be written. You have made such great progress! Keep it up, girl!


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## webster2

Wow, what a post! Thank you! I will say a prayer that you get accepted into the program too...and one for your doctor that went to bat for you! Thanks again! Best wishes to you!


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