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Old 04-23-2002, 04:46 PM   #1
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ocpik HB User
Is this usual

I feel like I am at my wits end. I finally lost it today and fell apart. The nurse at my PCP's office finally called me to tell me that the doctor was sending me on to an endo. I asked her what the doctor said about the scan being "normal" and she said that if the nodes showed up on the scan it would be bad and because they didn't it was normal. She had never heard of hot or cold nodules and said the doctor didn't mention it. I don't think she had a clue what she was talking about. She said that if it wasn't for the feeling of something in my throat nothing else would be done. I asked her to ask the doctor why the ultrasound showed multiple nodules and the radioactive scan showed "normal" and she said he didn't know. I got a call back later telling me that in the mean time, they wanted me to have a CAT scan of my throat and a TB test. What the heck? a TB test, right out of nowhere. I am so frustrated. I don't want to be exposed to every element and radiation known to mankind. If this throat thing is caused by thyroid nodules, I wouldn't go for further testing but now they are really freaking me out. Do they think I have a tumor in my throat? All this after five months of them telling me I had globus syndrome which is basically stress causing your throat to tighten. What would any of you do? Would you have the other tests done? I am at a loss, really, so frustrated. Thanks so much if you have any advice or words of wisdom. I have had a barium swallow and a neck and chest x=ray. I have also been examined by an ENT doctor and he did recommended the barium swallow. I have no trouble swallowing or breathing. Just a sensation that something is in my throat right around the thyroid area. Thanks again for listening to my rant.

 
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Old 04-23-2002, 08:50 PM   #2
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ArtfulD HB UserArtfulD HB User
Re: Is this usual

What the ********** is wrong with those stupid doctors? I cannot believe they keep sending you on more and more wild goose chases. Forget about seeing your PCP or anyone other than an Endo for this problem. Multiple nodules are multiple nodules. I just don't understand why they haven't talked about thyroid disease and I'm particularly annoyed that you keep having to speak with an assistant. Won't your PCP call you back personally so you can have a thorough discussion with someone more knowledgeable? It is, after all, his JOB.

There's nothing wrong with getting a TB test, but I don't think it's going to tell them anything new. Since you don't mention having a long-term cough, difficulty breathing, or spitting up blood, I'd bet that TB is not the issue here. And the Chest Xray should have ruled out pneumonia (as long as we're grasping at straws...). ARGH. Sorry for the rant. I feel for your frustration.

If you can't get an Endo appointment soon, here is the link for the Top Doctors in Maine (patient-recommended doctors from About.com) so you can find one yourself:
<A HREF="http://thyroid.about.com/gi/dynamic/offsite.htm?site=http://www.thyroid%2Dinfo.com/topdrs/maine.htm" TARGET=_blank>http://thyroid.about.com/gi/dynamic/offsite.htm?site=http://www.thyroid%2Dinfo.com/topdrs/maine.htm</A>

I know it's a big state, so I hope that one of these folks is in your area. Or, hopefully, the referral from your PCP will be a good doc. You can also call the labs or hospitals where you've had some of your tests and ask the technicians for their referrals to Endocrinologists. A tech's referral is often better than another doctor's.

In my opinion, I would hold off on any further tests for now. Get copies of everything (including your chest xray films) and bring them to your Endo appointment. Be sure to tell the Endo in advance where each of these tests were performed (and provide contact info for the labs/hospitals) so that he/she can review the films and scans before your appointment. (It may be easier for a doctor to request the original tests, though you'll probably be able to get copies of the Interpretation Statements.)

The Endo will probably want to do some blood tests (make sure they test you for Antibodies), perhaps an FNA biopsy to test the fluid in the nodule areas, and will probably put you on some type of thyroid meds to slow or stop the nodule growth.

Be strong. You're doing great so far, and have all the right instincts. Now all you need is a doctor with knowledge of thyroid disease, and you should be on your way to wellness.

 
Old 04-25-2002, 03:58 AM   #3
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Re: Is this usual

Hi Artful

Thanks for the advice. I have today off and I will try to find an endo that I can see before next year. With these HMO's, it seems that doctors are trying to save money but then they don't have the knowledge to treat people. The specialists take so long to see that it is extremely frustrating. I wish they had referred me a long time ago instead of wasting another six weeks. I would have had some answers by now. Have a great day. Ocpik

 
Old 04-25-2002, 10:25 AM   #4
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chrissiek HB User
Re: Is this usual

<BLOCKQUOTE><font size="1" face="Verdana, Arial">quote:</font><HR>Originally posted by ocpik:
<B>Hi Artful

Thanks for the advice. I have today off and I will try to find an endo that I can see before next year. With these HMO's, it seems that doctors are trying to save money but then they don't have the knowledge to treat people. The specialists take so long to see that it is extremely frustrating. I wish they had referred me a long time ago instead of wasting another six weeks. I would have had some answers by now. Have a great day. Ocpik</B><HR></BLOCKQUOTE>

That's why my endocrinologist appointment was not approved by the HMO in a different city. They said I should wait 6 months for an appointment in my city because it wasn't urgent enough to see someone in a different city after reviewing my medical records. Wha-huh?! I've been living with irritation in my throat and feeling all whacked out and can't work and it's not urgent enough?! Yeah, the HMO knows more than my PCP, sure they do. [/sarcasm]

This is why there are so many complaints to the state about the HMOs denying service. Your state may have an insurance web page to see how many complaints are brought in for each insurance company -from HMOs to car insurance. New York State has one.

However what they don't know is that, unless it's stated in your plan about out of network coverage, it's covered. My plan (still in draft form) states nothing about out of network coverage - so it's covered according to law.

My doctor hates the HMO's in the area. He hates dealing with them and sends me to whomever I want to go to, what happens after that, is up to me.

BTW, the HMOs in our area are run by the politicians or big businessmen - not doctors. How does a former county executive working as VP for one major one, know what's good for me?

 
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