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Thyroid Disorders Message Board
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Old 09-20-2004, 05:33 PM   #1
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kehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB User
What now?

At my last endocrinologist appointment, he told me he didn't think it was my thyroid because it was normal-sized and my labs are "normal." He said to see a regular doctor to rule out any other physical problems, and to come back if my thyroid swells up again like it did before (unfortunately, although it reached the size of a walnut, it went down before I got in to see him).

So I made an appointment with the only DO anywhere in the Phoenix metro area that my insurance covers. I saw her today, and she was absolutely no help at all. I explained all of my symptoms (fatigue, weight gain, cold, hair falling out) and she looked over all of my labs, and made up her mind before even looking at me. She said it was probably something like chronic fatigue syndrome or epstein-barr virus, neither of which could be treated, so why even bother testing for anything. She told me that she gets cold, too, and that doesn't mean that I have a problem. Her physical exam (all she did is feel my abdomen through my clothes, listen to my chest, feel my neck, and look in my ears...) gave only the finding that my thyroid is enlarged again. She had no answer for my weight gain, and was convinced that it's not my thyroid because my numbers are "normal."

(This part is just me complaining about the doctor, not really anything to do with thyroid...) I also had a list of other questions for her, which she was equally helpful with. I asked her about changing my birth control pill because it isn't helping much with my cramps and flow lately (gee, another symptom of hypo...), but she said she didn't know anything about that and I'd have to check with the gynecologist. So I asked about my asthma, which is not being managed very well right now. She said she didn't know anything about that, either, and I should see a pulmonologist. Okay, so those are sort of specialized areas.... Then I asked her about this rash that I have, and she said (surprise!) she didn't know anything about that, perhaps I should talk to my allergist or a dermatologist, or try taking benadryl (she obviously didn't pay much attention to my medication list which says that I'm on allergy medicines that contraindicate the use of benadryl..). So one final question about these cyst-like things I keep getting in my earlobe. No clue about that either! What good is a general doctor if they don't know anything? What does she know about???

So her instructions to me were "follow up as needed." What is that supposed to mean? Should I come back when I don't feel well? Wait... I didn't feel well when I saw her! At any rate, I'm not going back to see her. So my question is, what do I do now? I've been to a psychiatrist, two endocrinologists, and a general doctor, and they all keep saying that they can't do anything for me. Who can do something for me??? Help!!

PS... I got the rest of my lab levels from my most recent tests...
Cortisol 24.09 (5-25)
B12 398 (160-950)

 
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Old 09-20-2004, 06:54 PM   #2
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Re: What now?

Do you have your thyroid lab results?
Normal is a nono term when it comes to thyroid, there is NO normal, everyone is different and just because the levels come back in range does not mean you are "normal" boy I'd like to slap those drs, that type of dr makes me sooooo mad, not sure what they are doing in business if they have no answers for anything.

Don't give up, somewhere out there is a dr that has more knowledge and will treat you not their wallet.

 
Old 09-20-2004, 06:59 PM   #3
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kehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB User
Re: What now?

See my previous thread for all my test results... I know they aren't normal, the problem is getting a doctor to believe me!

[url]http://www.healthboards.com/boards/showthread.php?t=207545[/url]

 
Old 09-20-2004, 07:34 PM   #4
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Re: What now?

Yep, I see what you mean.

Have you tried calling drs offices and asking if they treat based on Free levels and symptoms or TSH. Sometimes you can weed out the one that will actually go by the symptoms and frees rather than just the "normal" results and that stinkin TSH without going through a ton of duds.

 
Old 09-22-2004, 06:55 PM   #5
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kehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB User
Re: What now?

I just don't know what to do. I have only been in the state for a year, so I don't know any good doctors. My parents are across the country, so they aren't any help. I have seen 4 doctors in the last 2.5 months, and I am worried that my insurance company will stop paying if I see any more doctors. I feel like I have hit a complete dead end. I don't even know where to start now.

The last endocrinologist I saw was okay, except that the clinic policy is that they don't treat thyroid unless the TSH is out of the range. The problem is that my thyroid swelled up but went back down to normal size by the time I got in to see him. He told me to come back if it swells up again. It has gotten bigger, but I don't know how big is big enough for him to decide that there is something wrong, and even if I do go in there with an enlarged thyroid what would he even do about it, since it's their policy to not treat unless the numbers are off?

I just don't know where to go now. Every doctor that I have tried has just put me off and told me that I'm normal because of my labs, without caring about my symptoms. I don't know what kind of doctor to try now. I have seen the one DO that my insurance covers. Do I just try calling general doctors, or should I look for some specialty? Please help!

 
Old 09-22-2004, 07:06 PM   #6
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Re: What now?

Try as many drs as you can find that may know anything about thyroid. Call the office first and ask about whether they treat by symptoms or only by numbers, ask if they test the Free levels. Generally a GP has about an hour of training on thyroid disorders, however, some do go for extra training. Endo's treat mainly diabetics and dabble in thyroid problems, so they are not the best either. Does your insurance cover Naturopaths? Also, sometimes Gyno's actually know more than GP's about the thyroid.

At this point, if I were you, I would start calling every dr and asking the above questions, somewhere in your area there has to be a decent dr.

Keep us updated.

 
Old 09-23-2004, 09:42 AM   #7
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Re: What now?

I found my doc by going on Wilsons thyroid website. There is a list of docs by state. It seems that these people would be much more open-minded than your
average tsh reader. Good Luck!

 
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