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  • Getting discouraged with doctors

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    Old 09-25-2008, 12:39 PM   #1
    namelessme
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    Getting discouraged with doctors

    I saw an endocrinologist today, and I can't say I am finding doctors much help at all.

    I was previously diagnosed with Hashimoto's by an ENT, who didn't wish to treat me, but said I could try an Endo instead. I have two recent TSH tests with ranges from 3.1-3.46, and total T4s of 8.5-10, and I tested a bit high for one of the Hashimoto antibodies (220ish) but my TPO was only 49. An ultrasound of my thyroid stated that my thyroid was slightly enlarged.

    So... although the doctor was nice enough, she basically said she doesn't treat thyroid disorders unless the TSH is 5 or higher. She said previously doctors didn't treat until TSH was 10 or higher, so anything under 5 is good. She then examined my thyroid, and said it felt maybe a little lumpy, which could be from Hashimoto's. She also said that I most likely do have Hashimoto's due to the antibodies, but it's meaningless, unless the thyroid fails.

    She dismissed my symptoms (fatigue, occasional throat discomfort/hoarseness, neuropathy), saying they couldn't be due to the thyroid because my hormones were normal. She, in fact, called my thyroid levels perfect. When I mentioned that most people seem to feel best with a TSH around 1.0, she stated that was for people taking Synthroid only, and that everyone else feels fine if their TSH is between 1-5.

    She doesn't believe in testing free thyroid levels, so I couldn't get that checked. All she wants to do is keep an eye on it, and retest TSH and total T4 in 6 months. When I suggested a trial of low dose synthroid to see if my symptoms resolve, she said that a low dose wouldn't do anything, and she's afraid a normal dose would make me hyper. She also didn't put much stock in the idea that low dose medication could prevent the thyroid going full blown hypo eventually, which contradicts two studies on the subject, but I don't believe she read those studies.

    Anyway... is there any truth to what the doctor says? Should I just wait and recheck my thyroid levels every 6 months or so? I'll probably have to wait regardless, as I can't get a new endo appointment right away. I made an appointment for 4 months from now, with a D.O., who happens to be an Armour endocrinologist, but I am not feeling very optimistic he'll do anything either.

     
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    Old 09-25-2008, 12:52 PM   #2
    Les3elles
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    Re: Getting discouraged with doctors

    Hugs to you! Finding a doc that is willing to listen to our symptoms as well as our lab resutls seems to be the running them around here.. I have been given the run around as well, as you can see by my numerous posts of frustration.. The advice that is given to me, is you keep at it and keep trying until you find that one doctor that is willing to listen to you! You and you alone, know how you feel!
    Best of luck!

     
    Old 09-25-2008, 02:02 PM   #3
    midwest1
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    Re: Getting discouraged with doctors

    Don't be discouraged. This endo is a thyroid IDIOT! There is NO truth to what she says about symptoms and TSH of 5 as "normal". The endo sea is full of rotten clams like her. This is the most absurd statement ...
    Quote:
    She said previously doctors didn't treat until TSH was 10 or higher, so anything under 5 is good.
    Did you happen to mention the A A C E's position that the TSH range is too broad and above 3 is likely hypothyroid? No matter... Just wash your hands of her and move on to the next, hopefully less head-in-the-sand MD.

    Armour prescribers are among the most enlightened of thyroid clinicians. Keep the faith... You may get the help you need there.

     
    Old 09-25-2008, 03:36 PM   #4
    Les3elles
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    Re: Getting discouraged with doctors

    Hi Midwest, Im just wondering what you meant by the Armour Prescribers? I too, got my results back today and he told me to «get the hypo idea out of my head and get some rest» He refused to even listen to me when I told him about the new scale.. So I must start over and find a new doc! Thank you...

    Last edited by Les3elles; 09-25-2008 at 03:37 PM.

     
    Old 09-25-2008, 04:37 PM   #5
    namelessme
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    Re: Getting discouraged with doctors

    Thanks for the words of encouragement. The A A C E position regarding TSH levels seems strangely meaningless to doctors, even if they know about it. The endo I saw today said that some doctors use 3.0 as a cut-off, but she isn't one of them. And based on what I've read, and other people's experiences, it seems that the A A C E position holds little to no weight with most docs. Hardly any endos use that standard, and I have yet to find a single lab use it either. No idea why that is. It seems thyroid care is different than other diseases.

    And playing devil's advocate for doctors (which may seem odd, since I'm having a problem finding a good one), I am sure there are cases where treatment isn't warranted when TSH is slightly elevated. Perhaps in some cases, a TSH over 3.0 isn't indictative of a definite hypothyroidism. But at the very least, shouldn't they run the correct blood tests first and get the free thyroid levels done? And why not a trial of low dose Synthroid, if a person has symptoms + elevated antibodies, and a less-than-ideal TSH? Or is it that most doctors, including endocrinologists, simply aren't that informed regarding thyroid disease? It seems that way so far, to me.

    And Armour doctors are doctors who will prescribe Armour Thyroid, a natural thyroid medication. Until I try either synthroid or armour, I don't have a preference myself. Some people can convert T4 to T3 just fine... some others, not so fine. But if the doctor doesn't bother to check Free T3 levels, that is a problem. You can find Armour doctors using a physician finder from the manufacturer of the drug. There is also a listing of 'Top endocrinologists', which I don't think we can mention a link to here, but I am not sure how reliable that list is anyway.

    Last edited by namelessme; 09-25-2008 at 04:38 PM.

     
    Old 09-25-2008, 04:46 PM   #6
    Les3elles
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    Re: Getting discouraged with doctors

    I can sense your discouragement and I am sorry for your frustration! I have no idea why doctors are so reluctant to even consider the new scale, or even more, consider that the symptoms we have along with our results, and not simply look at the results and send us on our way.
    The only rational explanation I can seem to come up with, being in Canada, if the doctors re-adjust their scale range they will need to see so many more patients. Since the doctors in Canada arent paid out of pocket why would they want to add to their patient load?
    Anyways, thank you for the explanation about an Armour doctor, i didnt think it was as litteral as that..lol..
    I guess I will be doing much more research!
    Best of luck to you as well!

     
    Old 09-25-2008, 05:01 PM   #7
    scoot
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    Re: Getting discouraged with doctors

    There are so many stupid doctors out there. Endos seem particularly ill-educated with thyroid problems. It's astonishing what some of them believe. Jeez i hate it when they get hung up on TSH. I can't imagine why your doc didn't run your frees. Your thyroid is enlarged, you've got symptoms, and she doesnt want to start treatment? What an idiot.

    You have to keep trying, keep looking for a good endo, or a pcp with good thyroid knowledge, or a D.O., or a naturopath/holistic md. I have seen 5 endos and not happy with any of them. I'm seeing a D.O. next week. I've gotten more compassion, understanding, and open-mindedness from my naturopath and my acupuncturist than any doctor i've seen so far.

     
    Old 09-25-2008, 05:13 PM   #8
    Les3elles
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    Re: Getting discouraged with doctors

    Quote:
    Originally Posted by scoot View Post
    I've gotten more compassion, understanding, and open-mindedness from my naturopath and my acupuncturist than any doctor i've seen so far.
    After I got my lab results today and was told by the specialist «Wow, you really have thyroid on your head, maybe you should just get some rest» I was crying, emotional, livid and so discrouraged! How dare he make me feel crazy, he has no clue the pain I live with every single day! So then my husband called the narturopath DR, and explained my story, the Naturopath said... well if the specialist said she was normal, she must be normal!! So now what?? Can an acupuncturist really help alleviate these symptoms?

     
    Old 09-25-2008, 06:53 PM   #9
    scoot
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    Re: Getting discouraged with doctors

    Quote:
    Originally Posted by Les3elles View Post
    After I got my lab results today and was told by the specialist «Wow, you really have thyroid on your head, maybe you should just get some rest» I was crying, emotional, livid and so discrouraged! How dare he make me feel crazy, he has no clue the pain I live with every single day! So then my husband called the narturopath DR, and explained my story, the Naturopath said... well if the specialist said she was normal, she must be normal!! So now what?? Can an acupuncturist really help alleviate these symptoms?
    Wow Les3elles, i'm sorry you've been misunderstood and dismissed. this thyroid business is so awful and it is so hard to advocate for yourself when you're feeling so sick. i'm sorry that not even a naturopath would listen. jeepers.

    i saw an acupuncturist at the beginning of my thyroid treatment. it is not enough by itself, but i found it helpful in a supportive role.

    like i have had to do myself, and i tell everyone the same thing, keep trying new doctors until you find the right one.

     
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