# My endo. appointment - how it went



## ifthespiritmovesme (Jan 8, 2014)

I waited an hour and a half to see someone, making me miss an appointment to get fitted with a Holter monitor.. Saw Dr. XYZ, even though I had requested many times, to see Dr, ABC. Dr. XYZ was very nice and she seemed to be concerned about my symptoms. I asked for a Cortisol saliva test, but was told it would not be done. My concern is that the blood tests for Cortisol don't differentiate between bound and unbound Cortisol. Dr XYZ explained that she can do blood tests that measure both separately. I asked that they be done.

She also gave me a referral for Neurology. She feels that my BP and temp. issues may be neurological. She also gave me a referral for the eye doctor to address my vision concerns, and to the dentist to have required dental issues resolved prior to use of Zoledronic acid. Oh yes, another US is going to be done.

All was fine until Dr. DEF (supervisor) came in at the end of the appointment. When I asked her about my antibodies, she tried to tell me that they are normal, nothing to be concerned about. She let me know that she and Dr. ABC will decide what is best for me, including my use of Cytomel. No further antibodies will be tested. I let her know that my continuing Cytomel has been guaranteed by the White House, and I will be continuing it, regardless what they decide is best for me. She had no answer to why my levels drop every time I start meds or increase doses.

I think it's time for me to take the VA up on their offer to send me to John's Hopkins. I really hope the doctors there are not so damned arrogant!! (And, I pray, they are more interested in finding out what is wrong with me.)

But, at least some things are being checked, my heart, lungs, teeth, neurological, eyes, cardiac....I keep telling them it is my thyroid and/or adrenal glands, my pituitary or my hypothalamus. Damn - they are so very hard-headed - don't even want to consider it.

Oh, well.....If I die tonight, none of it matters, anyway. Oh, BTW, my BP and temp. were both perfectly normal at the Dr. office. geeze - maybe I AM crazy.


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## Lovlkn (Dec 20, 2009)

I thought you were going to have your thyroid removed?

I'm confused - can you please complete your " signature" so those ( me) with no short term memory can get a quick view of your current medications and diagnosis. What are your current med's and last labs?

Sounds like a typical cover your rear end play for an improperly treated hyper individual.


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## ifthespiritmovesme (Jan 8, 2014)

Oh Lovkin, I do so love you. I was wanting to do that, but coulodn't figure out how. I'll try again right after I write this. I WISH I was having my thyroid removed!!

I'll post again when I've completed my signature so you can see all.

Thanks.


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## ifthespiritmovesme (Jan 8, 2014)

I agree about the CYA - shuffle me off to someone else. All this delaying is gonna end up with me waking up dead one morning, with them all sitting aroung scratching their heads, wondering what happened.

Oh, i didn't put in BP and temps - both get scary low. .


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## Lovlkn (Dec 20, 2009)

Thank You!

WOW? Seeing it all broken out - makes one wonder what the heck is going on??

This is an obvious thing to focus on - But then I did not go to medical school. Just using common sense,



> THYROGLOBULIN 93.7 ( 2.0 - 35}
> 
> THYROGLOBULIN AB <20 ( 2.0 - 35)


I don't know enough about either one other than "cancer marker". That would be enough for me to insist on a total thyroidectomy.


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## ifthespiritmovesme (Jan 8, 2014)

I have requested one over and over....


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## ifthespiritmovesme (Jan 8, 2014)

They almost laugh at me...


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## Lovlkn (Dec 20, 2009)

Try to get referred to a surgeon - history will usually give them the authorization to remove. You have history.

You are unable to stabilize on thyroid medications.

The "choking" comment works too


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## ifthespiritmovesme (Jan 8, 2014)

Thanks so much! I WILL get a referreal to a surgeon. Can't hurt....


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## Octavia (Aug 1, 2011)

Have you been seen by an ENT recently? Lovlkn is right...an ENT will take a "choking" comment seriously. And ENTs love to do surgery. Generally speaking, if someone is having their thyroid removed, the surgery will be done by an ENT or a general surgeon.


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## ifthespiritmovesme (Jan 8, 2014)

I saw an ENT - he did laugh at me......referred me back to endo.

they have doctors that do thyriod surgery, but I don't know what kind. I got the impression it was an ENT surgeon.

I actually feel like I am choking (for air) right now - I have this holter monitor taped up my chest. The tape's about 1/2" below the hollow in my neck. I feel like I am being strangled.

Thank you sooooo much for all your concern and advise - this is a really hard nut to crack.


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## ifthespiritmovesme (Jan 8, 2014)

Bottom line to my endo:
ALL of my symptoms point to a thyroid, adrenal, pituitary or hypothalamus problem, or possibly even cancer. Sending me to cardiology will not resolve the problem. Sending me to neurology will not resolve the problem. Seeing an eye doctor or a dentist will not resolve the problem. The problem lies within your area of specialty and it's likely the cause of any issues in these other areas. My blood pressure and body temperature fall, suddenly and dangerously low. If you don't care to investigate what is causing this, you'll cause me to die from it. I don't want to wake up dead one morning, with you all sitting around scratching your heads wondering what happened.


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## Octavia (Aug 1, 2011)

Other than the risk of seeing an (another) arrogant MD, what are the risks of going to Johns Hopkins? For example, will you risk not being able to take advantage of your VA benefits if you go to JH? Will you have a large(r) out of pocket expense?


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## ifthespiritmovesme (Jan 8, 2014)

No risk at all, and I have already put it in the works to go there. At least there's a chance I'll find a better doctor there. These 2 doctors at the VA are definitely fired......I had to give them a chance.


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## ifthespiritmovesme (Jan 8, 2014)

Meanwhile, I have to save up my money to see the integrative specialist in Annapolis, should JH not work out.


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## Andros (Aug 26, 2009)

This is not at all encouraging. Maybe you should go to John Hopkin's. Someone has to be able to get to the bottom of this.

Hugs,


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## ifthespiritmovesme (Jan 8, 2014)

I agree, Andros - I just got home from the emergency room - heart rate was over my doctor's cutoff for me to go. crap, got there and everything stabled out. I wish I could bring it on at will, so I could show them what's happening. Doc in the ER mentioned that it seems like something in my autonomic nervous system - signals for regulating body temp getting messed up. Who knows...anyway, I did put in a request to start the paperwork to get me seen at John's Hopkins. I am SO done with the VA'a endos....

I'll keep you up to date, if anything happens with my appointments. Am seeing cardiology and neurology, and a surgeon.

Thanks so much for your concern and hugs...I don't know where I would be without you guys....


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## ifthespiritmovesme (Jan 8, 2014)

Wow - now I have a palpable swelling high left on my thyroid. It is tender when I push on it. On the positive side....More ammunition to push for removal.

I do have an ultrasound coming up, and Tuesday morning am requesting a referral to a surgeon. I so wish for this to be over....


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## Andros (Aug 26, 2009)

You are in my thoughts and prayers for all of this. Please let us know when you are scheduled to go to John Hopkin's!


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## Lovlkn (Dec 20, 2009)

thegriz445 - who is a new member is having her thyroid removed in December. It's going to be done at JOhns Hopkins. Maybe you should PM her and get the names of the doctors she has been seeing.


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## ifthespiritmovesme (Jan 8, 2014)

Thanks Lovkin - I'll write now...


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