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  • How do I convince my Doctor all is not well?

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    Old 02-15-2004, 11:53 AM   #1
    susanab
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    Question How do I convince my Doctor all is not well?

    I'm so fed up, perhaps someone can help. Here's my story. I was diagnosed with hypothyroid 2 years ago. On reflection I think i'd been suffering since my son was born 9 years previously. Initially I was put on 100mcg of Thyroxine daily. I didn't feel much better. 3 months later I had more blood tests (my doctor never tells me the results, except within range or too high/low). He reduced my dosage to 75mcg daily as he said my levels were too high. I felt very tired and depressed with my medication reduced. Three months later, he put me on 75mcg Mon-Fri and 100mcg on weekends. Still no improvement in my symptoms despite bloods being within normal range. Next he put me back on 100mcg and that is where I have stayed. I still feel tired, my hair falls out from time to time. At present it is quite thin and dry and shedding quite alarmingly. I feel very hypothyroid at present. Why would my levels fluctuate? Other symptoms I have from time to time are ringing in my ears, muscle weakness and aches. Stabbing pain in my lower back (might be due to ovarian cysts which were diagnosed last year - also attributed to hypothyroidism). Intolerance to heat, weight gain, inability to lose weight. No motivation, extreme fatigue, snoring, possible sleep apnea. Irregular periods despite being told I am not in the menopause, a sensitive cervix which bleeds after gynaecological exams. Shakiness, a feeling of low blood sugar. Dizziness, bloated stomach, excess wind, excess appetite. Mood swings, lethargy, no energy to do excercise. Carpal tunnel syndrome, occasional muscle twitching. And last but not least and most worrying - some months ago I woke up every morning feeling as though I'd been run over by a truck! Every bone and muscle ached, I literally felt as though I'd been compressed in the night. My ribs ached when I breathed and it took around four hours to return to something like normal. I never mentioned it to my Doctor as I thought he would think I was mad. It went away just as mysteriously as it came, although I do have the odd morning when I feel achy. Looking at that lot I'm surprised I'm still functioning! So how do I convince my Doctor that I am not a hypochondriac? When I mentioned the constant tiredness, he said it couldn't be the thyroid and must be something else, but never offered to investigate what. Help!! I don't think I can go on feeling like this indefinitely. I've even had to reduce my hours at work.

     
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    Old 02-15-2004, 12:53 PM   #2
    midwest1
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    Re: How do I convince my Doctor all is not well?

    Hello and welcome to the board! Yes, we can help!

    To get your doctor's attention, learn everything you can about hypothyroidism that your layperson's intellect can absorb. Believe me, that's more than you think is possible... I'm proof. When you can communicate with him on an educated level, he'll either pay attention to you, or give you clear signals that he isn't interested in cooperating. If the former happens, that's great! If the latter happens, at least you'll have the information you need to move on to the next doctor.

    First you should learn about the thyroid's function, i.e. how it's supposed to work. (My favorite link on hypoT isn't working at the moment; if it becomes active again I will post it later. For now, you can check our "Information Archive" near the top of the subject page for the basics.)

    Next, learn what the best thyroid tests are and how to interpret them. The most informative tests are TSH, free T4 (not 'total' T4), free T3, TPO antibodies, and TG antibodies. Do not let a doctor diagnose or treat you based on your TSH level alone. TSH is a hormone secreted by the pituitary gland, not the thyroid gland, and so the test for it doesn't give you any information about your thyroid hormones. I suspect this is what's happening in your case right now. He is giving you enough med to adjust the TSH level up or down without giving any thought to what your thyroid is doing. That may be why you still feel awful, or it may be that you need a different med. The one you're getting now is only a T4 supplement, but many people need T3 as well. Many, if not most, doctors refuse to prescribe T3, and this becomes its own problem. Again, if that's the case, you'll have to move on.

    Your next objective is to get a printout of your labwork. (Just ask for it... It's yours by law, and usually you'll get no opposition to the request.) If you want, you can post the results here, making sure to include the lab's reference range along with 'your' numbers. It's likely someone can tell you what your doctor doesn't seem to know. I'd bet that your free T4 and/or free T3 are low in the range, even though your TSH may look acceptable.

    Your difficulty with your doctor is no fluke. Read a few of the experiences in the "Let's... Our Stories" thread near the "Information Archive" to see just how dumb mainstream medicine is when it comes to thyroid disease. I'm on my third MD myself.

    I encourage you to find the strength to change doctors as often as you have to in order to be treated right. Your symptoms are ones that may all be related to low thyroid function, and it's an ignorant doctor who would tell you otherwise.

    Last edited by midwest1; 02-15-2004 at 12:53 PM.

     
    Old 02-15-2004, 01:47 PM   #3
    opalfire
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    Re: How do I convince my Doctor all is not well?

    Hi......just in case it helps you, here's a site that rates the top thyroid docs in the country. Maybe you can find one in your area: [url]http://thyroid.about.com/cs/doctors/a/topdocs.htm[/url]
    Good luck.....waiting to hear from you!

     
    Old 02-15-2004, 02:16 PM   #4
    susanab
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    Re: How do I convince my Doctor all is not well?

    Thank you both for replying to my thread. I will try to learn as much as possible although it's not easy when you lack motivation and your brain doesn't work like it used to. I will also consider changing my doctor if he doesn't listen to me in future. I might consider going private if I have to.

     
    Old 02-15-2004, 05:33 PM   #5
    Teph
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    Re: How do I convince my Doctor all is not well?

    There are a few things that you mention that are Hyper.. twitching and intlrnc to heat.. About your cervics did you have a Pap. done? It sounds like you are going Hyper to Hypo. Have you changed your way of eating. If your not happy with your Doctor you can look for another.

     
    Old 02-16-2004, 02:20 PM   #6
    susanab
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    Re: How do I convince my Doctor all is not well?

    Yes had a pap done, came back clear. Bleeding always happens when I have a smear or any internal exam. I've always felt hot even when I was first diagnosed and when I asked the doctor he just shrugged. As for the diet I'm constantly changing it in an effort to lose weight. I don't know what a 'NORMAL' balanced diet is any more. I can't excercise at all, I have no stamina whatsoever and have to give up after about 5 minutes. I've decided I can't go on like this and I need some answers, so what I propose to do is go back to the doctor and ask him to refer me to an endocrinologist.

     
    Old 02-16-2004, 05:17 PM   #7
    opalfire
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    Re: How do I convince my Doctor all is not well?

    Quote:
    Originally Posted by susanab
    Yes had a pap done, came back clear. Bleeding always happens when I have a smear or any internal exam. I've always felt hot even when I was first diagnosed and when I asked the doctor he just shrugged. As for the diet I'm constantly changing it in an effort to lose weight. I don't know what a 'NORMAL' balanced diet is any more. I can't excercise at all, I have no stamina whatsoever and have to give up after about 5 minutes. I've decided I can't go on like this and I need some answers, so what I propose to do is go back to the doctor and ask him to refer me to an endocrinologist.
    Susan......please don't get discouraged! Rather, take heart, and take these instructions to your doctor, or another one if this one won't help. Get these lab work done:
    TSH (only needs to be done once or twice, after that it's useless)
    Free T3
    Free T4
    No other lab tests are required for the ordinary circumstances. The only other consideration would be for Antibodies, in case of suspected Hashimoto's. Most of the other tests are not relevant to hypothyroidism, but are either lab references or have other uses.
    When you get the results, the doctor should be able to start you out on the lowest dose of either Synthroid or Armour (my favorite, as it has all the T's in it...yes, there are more than just T3 and T4). Once he starts you out, you should get lab work done every 6 - 8 weeks until you reach a steady level of both the Free T3 and Free T4 lab tests (they should be in the upper range of normal). If your T3 is not coming up (it rises faster than the T4), than if he's got you on Synthroid (which is T4 only), than he should switch to Armour. He may even have to start you on a small dose of Cytomel in addition, to help bring up your Free T3 further. Some people have a hard time converting all the required T3 from the T4. The lab test must continue at the 6 - 8 week intervals until you feel good and the levels stay steady.
    Write back if you have any further questions! Above all....you should feel good, not just the lab tests be right.

     
    Old 02-20-2004, 08:45 AM   #8
    susanab
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    Re: How do I convince my Doctor all is not well?

    Thanks for that. It's nice to know that someone understands how I'm feeling. I get the impression sometimes that people at work think I'm a hypochondriac. I live in UK; can we get Armour here I wonder? I'm going on holiday for a week now so I'll check in when I get back. Thanks again for caring everyone.

     
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