# My poor doctor



## Enigma (Jun 13, 2011)

I went to a new PCP last week... she is a nurse practitioner. She's not going to set the world on fire, but she LISTENS and is willing to run lots of tests, and not just say, "Take this pill, you're anxious." And she readily admits what she doesn't know/isn't sure of, but makes sure the proper tests are done so she can send me to the proper doctor.

Just a reminder, I have Hashimoto's and high TSI. First time the TSI came back at 3.8 (<=1.3) and she ran it again, two weeks later, and it came back at 2.7 (<=1.3). Within that three week period, my TSH has gone from .92 to 4.92, to 2.51. FT4 from .87 to 1.3 to 1.01. Within 3 weeks! My symptoms are primarily (very) hypER, and my doctor acknowledged that.

When she got the latest results back, she said she wanted me to go see the endo again since my TSI is still high. She thinks the TSI is playing a large part in my symptoms. Now, I've seen two, both of whom say TSI doesn't matter, my symptoms don't matter, but the rest of the labs that say I am hypO matter. Both were very rude. So I asked her to refer me to another doc, but that might be a couple of months before I can get it.

I feel bad for her! She wants to help but, but she doesn't know how to herself, and other docs won't listen either! What a position to be in!

So, I'm thinking of finding some universities in my area (New England, about 2 hours from Boston) and writing to the doctors/professors with my case. Try to "sell" my case to them and see if anyone would want this challenge to use as a good teaching tool. And if I find someone, then I can have my PCP refer me to them.

What do you think?? Is it worth a shot?

BTW, she is also running other tests to rule out any other underlying problems (lupus, RA, neuro problems, porphyria, etc.). Maybe I should wait for all of those to come back before writing to some universities?


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## Phayah (Nov 4, 2011)

I swear, I'm starting to think anyone with complicated thyroid issues needs to have the entire endocrine/hormone system evaluated. There are a lot of things we don't know about the human body but docs seem to think they do know everything. Why this is, I don't know. I'm a bit of a science geek and its pretty obvious there are countless unknowns in this world. I really wish our medical system was more investigation focused. Maybe the holistic docs will put them out of business. :tongue0013:


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## webster2 (May 19, 2011)

What about Dartmouth?


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## Enigma (Jun 13, 2011)

I've started researching that a lot, and am getting together some names that I could give my doc. I'm just not sure if anyone will recognize/treat the hypER part of my labs and everything that I am feeling. I don't even know if I'll make it long enough to see anyone... I feel so horrible. Or I will lose my job by then and no insurance. My life has become a nightmare, and it's never been like this.


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## Andros (Aug 26, 2009)

Enigma said:


> I went to a new PCP last week... she is a nurse practitioner. She's not going to set the world on fire, but she LISTENS and is willing to run lots of tests, and not just say, "Take this pill, you're anxious." And she readily admits what she doesn't know/isn't sure of, but makes sure the proper tests are done so she can send me to the proper doctor.
> 
> Just a reminder, I have Hashimoto's and high TSI. First time the TSI came back at 3.8 (<=1.3) and she ran it again, two weeks later, and it came back at 2.7 (<=1.3). Within that three week period, my TSH has gone from .92 to 4.92, to 2.51. FT4 from .87 to 1.3 to 1.01. Within 3 weeks! My symptoms are primarily (very) hypER, and my doctor acknowledged that.
> 
> ...


Sounds like your poor PCP is up against the "BIG DOGS" who stopped learning the minute they graduated med school. Aaaaaaaaaaaaaaargh!

Let me furnish this info for you if I already have not.

You probably have TBII which is binding the TSI and that is why your thyroid panel looks hypo.

TBII (Thyrotrophin Binding Inhibiting Immunoglobulin)
http://www.ncbi.nlm.nih.gov/pubmed/1969138

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

The action between these 2 immunoglobulins is like driving a car at high speed and repeatedly slamming on the brakes. It confuses the lab results on the usual thyroid panel of TSH, FT3 and FT4.

Also, please scan this.

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm










I forgot to answer your question. Anything is worth a shot if it gets you the medical intervention and proper diagnosis that you require.


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## Lovlkn (Dec 20, 2009)

I'm thinking hashitoxicosis?

http://elaine-moore.suite101.com/hashitoxicosis-update-a121050

If you decide on a permanent fix the choice is surgery over RAI.

I was DX'd by my surgeon and presented mainly hyper symptoms and never could stabilize on antithyroid meds.


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## Octavia (Aug 1, 2011)

You've been through a lot with all of this. Has anyone suggested thyroid surgery, or are the docs not convinced it's thyroid-related?

Hang in there, Enigma...progress is slow, but it's progress, and you WILL get better!! :hugs:


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## bigfoot (May 13, 2011)

It is a shame that docs are more focused on lab values than actual quality of life for a patient. I think a lot of that has to do with the "system". Most of the docs want to help, but unless they can pigeonhole your diagnosis into a numeric medical code they don't get paid. And then there are those whose ego is just too big to begin with. Hard to find some middle-ground.

I wonder if consulting with an ENT would be of any benefit? Perhaps you could explain what has been going on and they would recognize some of it?


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## Enigma (Jun 13, 2011)

Thanks for the words of encouragement guys! I think I will make an appointment to meet with an ENT once all my tests come back. Just want to make sure that it is *only* thyroid. Had an MRI today and still waiting for porphyria test to come back.

So here are my latest thyroid number. I wanted my doc to check TRAb (TSH Receptor antibodies) but she didn't... I think she checked off the wrong one. She did TgAb instead.

So... (remember 3 weeks ago TSH was .92, then 4.92 the following week)

TSH 2.51 (.34-4.82)
FT4 1.01 (.59-1.61)
FT3 3.1 (2.0-3.5)

TSI 2.7 H (<=1.3)
TgAb 433 H (<116)

And TPO from July was 869 (0-9)

I've got a raging case of something. It needs to go. I never realized how much the thyroid effected the body.


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## Andros (Aug 26, 2009)

Enigma said:


> Thanks for the words of encouragement guys! I think I will make an appointment to meet with an ENT once all my tests come back. Just want to make sure that it is *only* thyroid. Had an MRI today and still waiting for porphyria test to come back.
> 
> So here are my latest thyroid number. I wanted my doc to check TRAb (TSH Receptor antibodies) but she didn't... I think she checked off the wrong one. She did TgAb instead.
> 
> ...


You have had an ultra-sound; correct?


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## Enigma (Jun 13, 2011)

Yes- heterogeneous, two small 4mm nodules.


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## Andros (Aug 26, 2009)

Enigma said:


> Yes- heterogeneous, two small 4mm nodules.


And has your doc commented at all about the high Thyroglobulin Ab, high TSI, high TPO?

All 3 of these combined is especially suspicious of cancer. Can you see an ENT?


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## Enigma (Jun 13, 2011)

Haven't talked to my doctor yet... just got copies of the labs and am waiting for everything to be back before she calls.

I probably could see an ENT. I am going to a NEW endo next Friday. What do you think an endo would say? And how could we tell if it was cancer without being able to biopsy the nodules (since they are so small)? What other options are there?


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