# Will you help me?..please??



## proud-armywife (Jul 29, 2011)

Hi my thyroid friends,
I have finally made it threw the impossible task of getting an appointment with the endo. doc on thursday. I am terrified. I have fought so hard to get here through the military medical system and I feel like running away. 
I mentioned in past posts, that I have celiac, hashimotos, and I believe with all the thyroid trouble I also may have ted. It started out with just bloodshot yellow glassy eyes, but it has progressed into very swollen tissue around the eye, pressure, and pain when it moves in the socket. I have not been diagnosed and I am just guessing but it feels so painful......
I need your help speaking the doctors language. I know that must sound weird but it seems I cannot on my own- I am always brushed off until something very bad happens and then it is stated that they cannot believe it went that long, or that it is that bad. I am a very honest person, and I am afraid of being a hypocondriac. It must sound silly, but I am very literal in my descriptions.
I am so afraid of this.What do I say? What should I do. How do I prepare? Do I express my anger or desperation? 
I did give in and start an antidepressant because I felt like I had to to move forward with my normal doc. And even though I felt pressured at the time, it has helped quite a bit. What do you do, what do you say? Do you think I'm crazy? I feel crazy!!!! LOL Anyways, thank you all for your support- I am so grateful for all of your help everytime I come here.


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## webster2 (May 19, 2011)

Don't feel like you are a hypochrondriac. You live in your body and know when something is not right. You are your own best advocate, but that is so hard when you are not feeling well. I know it has been a huge battle for you to get this far to be seen.

I don't know for sure but I thought TED is specific to Graves disease. You might want to see if they will run the antibody tests for that. Also, have the endo look at your eyes.

Make a list of your questions and concerns. Are you able to have someone go with you to your appointment? If so, let them know what your objectives are for the appointment.

I know others will help you decide what to do at the appointment. Hang in there!


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## CA-Lynn (Apr 29, 2010)

First of all.....get it in your head that the doctor is YOUR employee. You and your spouse pay the taxes and provide military service...... Doctors are not god and should not be considered as such.

Make a list of your objectives. For example:

1. Want a clear diagnosis.
2. Want to eliminate the following symptoms [make a list of them].

Then:

3. What tests do I need to have performed so that I can get the above?
4. What are the drugs/treatments used to accomplish this?
5. When can I expect to feel better?

I always have a lot going on in my head and therefore make a lot of Excel spreadsheets because I have a tough time remembering all my surgeries, when they were, etc. So you can look prepared by making a spreadsheet:

DATE AGE SURGERY DOCTOR

Make a list of all the drugs you're taking:

DRUG NAME #mg DAILY/WEEKLY FOR [DISEASE]

Do you have multiple diseases? Of course you do. So list their names and the year diagnosed.

YEAR DISEASE/CONDITION DIAGNOSED BY DR ____

Don't worry about intelligent questions. Frankly, the doctor is the one who should be talking and making himself clear. It's YOUR job to stop him or slow him down when he says something you don't understand. Don't be afraid to do this.

The others will chime in.

Just remember - you really accomplished quite a bit by getting this appointment. Be proud of yourself.


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## joplin1975 (Jul 21, 2011)

I think CA-Lynn is giving you excellent, excellent advice.

I'll say this...we would all love it if our doctors could double up as quasi-counselors or therapists. I don't dismiss bedside manner. Not at all. But I do think it would behoove you to remember that, at their core, medical folks are scientists. If you can approach them with that in mind and focus on the medical facts, as opposed to your state of mind, you might have more success. It's hard, because this is your life and so of course you are emotionally involved, but take a deep breath. It's going to be ok.

As an aside, remember that the endo might need to refer you to an eye doc if TED is involved.


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## proud-armywife (Jul 29, 2011)

Thank you! I feel like I need help organizing all these thoughts.... I especially love the outline ca-lynn gave! I appreciate the help- more than I can say.


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## Andros (Aug 26, 2009)

proud-armywife said:


> Hi my thyroid friends,
> I have finally made it threw the impossible task of getting an appointment with the endo. doc on thursday. I am terrified. I have fought so hard to get here through the military medical system and I feel like running away.
> I mentioned in past posts, that I have celiac, hashimotos, and I believe with all the thyroid trouble I also may have ted. It started out with just bloodshot yellow glassy eyes, but it has progressed into very swollen tissue around the eye, pressure, and pain when it moves in the socket. I have not been diagnosed and I am just guessing but it feels so painful......
> I need your help speaking the doctors language. I know that must sound weird but it seems I cannot on my own- I am always brushed off until something very bad happens and then it is stated that they cannot believe it went that long, or that it is that bad. I am a very honest person, and I am afraid of being a hypocondriac. It must sound silly, but I am very literal in my descriptions.
> ...


Good to hear from you again but clearly your medical condition has continued to deteriorate since we last heard from you.

The 2 tests below are absolutely essential.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism. 
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583

And the others would be helpful.

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

I strongly recommend you insist on either RAIU (radioactive uptake) or second best, ultra-sound to rule out cancer. This is essential.

We all care for you; I hope you know that. Wish we could be there in person to do "battle" for you but alas, it's not possible.


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## CA-Lynn (Apr 29, 2010)

Will you be limited to one visit with the endo? Is that why you feel compelled to get everything organized?


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## surge (Aug 15, 2012)

I absolutely identify. If you're like me, you're clinging to the 'idea' of this appointment, hoping you'll walk out with THE answer you need to feel better. You might not. And I'd prepare for that. You WILL walk out, probably, with a lab slip, so ask for as much as you can get, as far as diagnostics.

Also some symptoms have more 'weight' with endos than others, it seems. Keep it really focused first on the symptoms that are mostly obviously thyroid, then move onto secondary stuff.

Be patient, but firm. If you feel your heart sink while the endo tells you it's just that you're on the wrong med, take a deep breath and ask for contingency plans-- what happens if something changes before your next appointment? Which tests can you request, etc.?

I'm in the middle of my first round with the endo and it wasn't the cure-all I was hoping, but I do feel like I'm getting somewhere, thanks to my pcp. I love all the suggestions here. These people know what they're talking about! You know your own body than anyone else. Don't be afraid to share what you know!


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## proud-armywife (Jul 29, 2011)

Thank you all for the great suggestions. I predict that this will merely be an intake appontment as said, and off to a trip to the lab.... i'm ready for that. But multiple visits will depend on if the doctor determines that I need to be seen by them. So, if my labs come back and they feel comfortable that they are all falling in range etc... I can be released back to my pcp. Does that make sense? So this is why I feel it so important to have my thoughts and paperwork organized. I am afraid of being told everything is normal. Because I know it isn't and in the past all the pleading for help doesn't get me anywhere, I am better in some ways- and I am grateful for any kind of better. But I still struggle everyday, I feel old, tired and sore. LOL Pretty sad when your in your late 30's. I told my doc I can't live like this and the response was... your depressed. Well, I have been taking the meds and as much as I hate to admit it, they do help quite a bite my mood is better, and I do have a bit more energy. I'm desperate to find some normalcy - I cannot take a job right now, because I cannot rely on my health at all. If I cannot rely on myself, how can I commit to anymore? I have expressed this to my doc as well. I am NOT confrontational- except to my hubby- I have no problems being confrontational with him! LOL Thank you for all of the well wishes and good information. I am compiling my thoughts and labs. As far as the eyes- I have read that hashimotos can have autoimmune eye disease happen together. The statistic I am unsure of. But it has progressed. The redness is not mild redness, people stare. I am sure they are wondering whether I have smoked a joint or not! LOL The pain is moderate but relieved with aleve. I hate to take meds and I am pretty lucky that aleve tylenol motrin generally work great for me. I'd be lying if I said I wasnt terrified. I am totally terrified- I am just telling myself for now, that I have no control over this. I have an appointment- and I know I will probably have to see an opthamologist. I cannot perseverate on this- I have to move forward. I know Andros you have experienced this as well as others. Maybe there is some lesson in all of this-I don't know. Maybe it isn't ted. All I do know is I need someone to listen-and to help me. And that is what I will say. Hugs to you all I don't know what I'd do without you!


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## Octavia (Aug 1, 2011)

armywife, I think you already have a lot of your thoughts down in this thread. All you need to do is copy and paste them into another document and start practicing saying them out loud.

If the doctor orders labs, ask what the next step will be if they come back normal. Talk it through, and make it clear that no matter what the labs say, you do not feel normal....etc.

You've received some great advice in this thread. 

Hoping for great progress for you! :hugs:


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## Texaschick (May 26, 2012)

Armywife,

This group as always gave you EXCELLENT advice! You are going to do great...It is your body and no one knows it like you do. A doctor told my husband once, "listen to your body, it never lies to you"...write all your symptoms down, all your questions and honey you will be good to go. God bless!


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## CA-Lynn (Apr 29, 2010)

The one thing I would do is tell the endocrinologist that you really want another appointment with HIM after the labs to review the results.....you don't want to review them with PCP if the results are normal.

Just make sure you get all the antibody tests included in the labs. Andros has listed them all over this website.


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## jenny v (May 6, 2012)

Yes, demand antibody testing till you're blue in the face! You may have what they deem a "normal" TSH, but if you've got high antibody levels, that could be the reason you feel so awful.


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## proud-armywife (Jul 29, 2011)

Well, I went to doc yesterday. Had everything on paper-thankfully. I walked in and I was very calm. I had photocopied past bloodwork and had everything written down. I asked the nurse if it seemed anal and she said no but if you had sticky tabs then I'd worry. I guess it's a good thing I didn't use my little sticky tabs to highlight the blood tests used in each diagnosis or mark the date!!!! LOL I thought about it!!! LOL Anyways,whatever would be would be....... the nurse left. And the doc-a female came in. Very sweet I might add. She asked me some questions, and then she asked me how I felt now was different than before and guess what..... I cried. I almost never cry. But I did. She could not look at me. She asked me very direct questions at that point. She said that my thyroid is swollen- she ordered more blood tests of course. She mentioned one thing though, she did ask me if anyone in our family has lupus and she said it can be difficult to diagnose. so she is going away for about a week but she told me in two weeks I should call in for blood results. I find myself hoping for something- I don't care what it is but just something I can say this is why I am soo tired. This is why I feel lousy all the time. I don't care what it is- I just need to move forward. I want to move forward. I want a reason. Crazy I know- my hubby says why would you want something to show up- i guess I need a reason for all of this. Thanks for all the wonderful advice!And I will update as soon as I can.


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## Andros (Aug 26, 2009)

proud-armywife said:


> Well, I went to doc yesterday. Had everything on paper-thankfully. I walked in and I was very calm. I had photocopied past bloodwork and had everything written down. I asked the nurse if it seemed anal and she said no but if you had sticky tabs then I'd worry. I guess it's a good thing I didn't use my little sticky tabs to highlight the blood tests used in each diagnosis or mark the date!!!! LOL I thought about it!!! LOL Anyways,whatever would be would be....... the nurse left. And the doc-a female came in. Very sweet I might add. She asked me some questions, and then she asked me how I felt now was different than before and guess what..... I cried. I almost never cry. But I did. She could not look at me. She asked me very direct questions at that point. She said that my thyroid is swollen- she ordered more blood tests of course. She mentioned one thing though, she did ask me if anyone in our family has lupus and she said it can be difficult to diagnose. so she is going away for about a week but she told me in two weeks I should call in for blood results. I find myself hoping for something- I don't care what it is but just something I can say this is why I am soo tired. This is why I feel lousy all the time. I don't care what it is- I just need to move forward. I want to move forward. I want a reason. Crazy I know- my hubby says why would you want something to show up- i guess I need a reason for all of this. Thanks for all the wonderful advice!And I will update as soon as I can.


This is very hopeful. Please be sure to get copies so you can post the name of the tests, the results and the ranges for us all to see.

Glad she tested for Lupus also. Many of us with TD have other autoimmune issues.

2 weeks can't come soon enough!


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## Octavia (Aug 1, 2011)

Sounds like it was a great appointment! Yay for you!

About "hoping" to find a problem - I get that, really I do. Because if they don't find anything wrong, then they assume everything is right, and you know darn well it's not!


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## sleepylady (Mar 18, 2012)

That is exactly how I feel Octavia!


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## CA-Lynn (Apr 29, 2010)

I REALLY "get" the part about finding SOMETHING, ANYTHING.

So now what you need to do is to "put it all aside" for the next couple weeks and just live your normal life. In two weeks you'll probably have answers. So try not to dwell on it between now and then.


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## proud-armywife (Jul 29, 2011)

Thanks guys I am trying! They did call this morning and said that my iron and b-12 levels came back normal. I thought they might..... we'll see!


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## webster2 (May 19, 2011)

I am so glad you had a great appointment. Don't feel bad about crying, it happens to the best of us. I also understand about finding something.


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