# Eeeeeaaaaarghhhhh



## Sandbar (Nov 6, 2012)

Thank you very much. Why oh lord why do I have to put up with this endo insanity!


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## webster2 (May 19, 2011)

What's going on with your endo? It took me 3 to find a human one!


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## Sandbar (Nov 6, 2012)

Thanks Webster - how long did you spend with your first two before the third? Why is it so freaking hard? I've never had this much trouble finding an appropriate primary care doctor yet it seems for endos it is more challenging. The other problem is the stakes are so high - I can't walk away without having a replacement and finding a replacement that is actually better seems to be like finding a needle in a haystack. I wish I could share details but this is a public board and I'd worry about it being too identifying. Suffice it to say my endo is making mistakes to such a degree that I worry that it could impact my well-being, and it's not stuff I can work around easily on my own. Still I'm so tired, so very very tired, in my heart of struggling with disease and I've only been at it a few months. I know it's not rational but there's something terrifying about having Graves' and not being to count on your medical people.


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## webster2 (May 19, 2011)

I had one appointment with each. The second one was after surgery, and she opened the appointment not saying hello but sayiing " you know you had cancer, right". She didn't listen to how crappy I was feeling. So I got up and left. She chased me down the hall. Anyway, I decided I didn't need an endo...my thyroid numbers went way out of whack, and I still felt crappy so I went to the GP, she kind of flipped out and sent me (same day) back to the ENT who told me that I really needed an endo. He said try this guy, he's human! Grrrr...I wish they had considered him first!

Are you near a large hospital?IF so, you may be able to browse the endo's online to see if any of them specialize in Graves, or at least thyroid imbalances in stead of diabetes. Do you have a treatment plan? Surgery or RAI?

Graves is the biggest health obstacle I faced. It really made me think I was crazy and then add the physical symptoms...yikes. Hang in there, it is really rough to navigate your health care when you really don't feel well.

I hope some others will be by to offer some suggestions.


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## Lovlkn (Dec 20, 2009)

Life is so much easier working with Primary MD's on replacement.

I was lucky and had an endo that did not push surgery or RAI and tested me every 4 weeks and adjusted my anti thyroid med's.

Where I did not see her flaw was in keeping my hypo and taking me from total hyper to total hypo in 2-3 months.

Post op endo's tried to keep my TSH around which only made me feel horrible so I gave up after trying 2 new ones.

All you can do is bring a lab tracking sheet showing lab's, medication and dose and how you feel. I brought one every visit and if I felt I needed an adjustment we talked looking at all the lab numbers on one sheet. It's so much better to see the developing trend when dosing. She became used to it and the fight for what dose to be on disappeared after awhile.

:hugs:


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## Andros (Aug 26, 2009)

Sandbar said:


> Thanks Webster - how long did you spend with your first two before the third? Why is it so freaking hard? I've never had this much trouble finding an appropriate primary care doctor yet it seems for endos it is more challenging. The other problem is the stakes are so high - I can't walk away without having a replacement and finding a replacement that is actually better seems to be like finding a needle in a haystack. I wish I could share details but this is a public board and I'd worry about it being too identifying. Suffice it to say my endo is making mistakes to such a degree that I worry that it could impact my well-being, and it's not stuff I can work around easily on my own. Still I'm so tired, so very very tired, in my heart of struggling with disease and I've only been at it a few months. I know it's not rational but there's something terrifying about having Graves' and not being to count on your medical people.


It is extremely terrifying. I went 20 years w/undiagnosed, untreated Graves' and almost died. Now I deal w/permanent damage.

I was scared out of my mind and still live in fear that something will happen to my "now" doctor who is the "bomb!"


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## Sandbar (Nov 6, 2012)

:hugs: and thanks to all of you!

Webster, was that the first you were told that you had cancer? OMG Even if it wasn't the first, still crass as hell. Good on you for walking out! Thanks for the suggestions - I won't give up, I can't. Oh my current plan is trying for remission on the drugs if possible.

Lovlkn, I like the idea of having it all on one sheet, maybe I can put med dosages on there too. What you went through being made hypo seems to be very common, yet the cost to you in terms of wellness and lost capacity is real. I wish they took hypo as seriously as hyper.

Andros, I'm so glad you have a wonderful doc now - may he/she live long and prosper! 20 years untreated though, that's just awful and my guess is you didn't spend those twenty years hiding in a cave unseen by docs. I hope you are permanently on the road to recovery now.


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## webster2 (May 19, 2011)

No, thank goodness that wasn't the first news of cancer. I did have a bit of a meltdown in my car but not in the office. I am glad it happened because I did eventually find a good one. The new endo feels I have had Graves for a long time before beinng diagnosed. From the condition of my body, I am beginning to think he is correct.

I have a friend that has achieved remission, so good luck to you!!!!


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## Endlessness (Oct 5, 2011)

Oh my gosh I feel the same way right now!

When I was diagnosed as a child, I was sent to a specialist in a big hospital about an hour away from my home. He was an endocrinologist working with kids only, and he was AWESOME. He tried everything before doing the RAI, and then when I became "too old" to be in his care, he refused to let me go and kept me on until I moved too far away. He didn't trust anyone else apparently!

Now I know why...

It's so frustrating! And as you said, this is such high-stakes! Not only does it affect your quality of life, it can also cause damage long-term! Why is it so hard to find a good endo ? T_T

I wish I could go back to my first endo, honestly  I am forever thankful that he's the one who took me on when I was diagnosed, that's for sure.


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## Sandbar (Nov 6, 2012)

Endlessness, I'm so glad you first endo was a good one at least. I can only imagine how bad Graves must be for a child. As I look for a new endo I feel really bad but I'm an agist, if they are close to retirement age I disqualify them - starting the search over would be awful. If I find someone good I want them to be in practice a long time.


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