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  • Anonymous
    Participant
    July 8, 2006 at 10:21 pm
    Post count: 93172
    #1077051

    You are certainly trying to do all the right things. Your doctor may be right that a tiny amount of thyroid tissue may have been left. This does happen frequently. I would recommend giving yourself a little time for the thyroid to die off.

    Diane B On-Line Facilitator

    Anonymous
    Participant
    July 9, 2006 at 1:33 am
    Post count: 93172
    #1020403

    Can anyone help me?

    I had a total thyroidectomy 1 1/2 years ago and still cannot get regulated on synthroid. A few months ago my tsh went from .9 to 3.95 for no apparent reason, so the doc upped my doseage. It was rechecked a couple of months later and only dropped to 3.4 at the higher dose but I was feeling okay so the doc left it at that. Then over the last couple of months I started feeling tired again so the doc checked my tsh again and it’s at 7.1, again for no apparent reason and on the higher dose. I take my synthroid in the early morning, eat 90 minutes later and take my vitamins at lunch (6 hours after synthroid). I have not changed this schedule whatsoever. I am careful not to eat anything that may interfere with the synthroid until at least 6 hours after I take it. I stay away from soy, wheat gluten,, calcium, iron and vitamin enriched foods until lunch. My doc really doesn’t know why my tsh keeps going up. She has one theory that maybe my surgeon missed a small piece of thyroid (even though I had a total thyroidectomy) and that maybe it has been slowly dying off over the last 18 months….but who knows?
    Every time I go on a higher dose, my tsh goes down temporarily and shoots back up again.
    Anyone have any other ideas why my tsh keeps going up?
    I recently started using topical self tanner….I know it’s a long shot but could any of the chemicals in the tanner inhibit synthroid? Any other ideas?

    Any help or advice would be great…thanks in advance.

    Anonymous
    Participant
    July 9, 2006 at 10:33 am
    Post count: 93172
    #1077052

    Thanks for giving that theory some back up. I guess the most frustrating part about all this is that everytime my doseage gets increased I go through a period of feeling “hyper.” I cannot sleep, my hair falls out and my eyes act up (yes I’m one of the lucky ones to have the Thyroid Eye Disease too). It’s very depressing when all this happens. Just when I think things are stable and I’ve finally settled in, I have to get back on the roller coaster all over again. Hopefully, it will end soon.

    Thanks again!

    Anonymous
    Participant
    July 24, 2006 at 10:41 pm
    Post count: 93172
    #1077053

    I have had Grave’s disease for 6 years, and have had I-131 treatment (about 2 1/2 years ago), but recently started seeing symptoms again. I moved a year ago and when I started seeing a doctor here they told me that I did not need to see a specialist and only ran the TSH test every 3 months. When I asked about the T3 and T4 tests I was told that they were unnecessary and not to worry about it. Now, I am seeing symptoms again, but am told that my TSH is normal. Should I be having the T3 and T4 tests done? Is there anything else that could be causing the bulging eyes, smooth skin, shaking hands and trouble sleeping?

    Anonymous
    Participant
    July 25, 2006 at 12:33 am
    Post count: 93172
    #1077054

    You are in a tough spot, obviously. The problem is that you have symptoms, which you have suggested are thyroid, because the symptoms feel familiar. Your doctor has checked your TSH and told you “It’s not your thyroid.” This sentence typically means that the doctor has stopped thinking about the problem. Your job is to jump start the doctor’s problem solving for you. What I have found helpful is to follow up the “It’s not your thyroid,” sentence with something like, “OK. That’s disappointing because it’s such an easy fix if it’s thyroid. But if it’s not my thyroid, as you say, what IS causing the problem??” This drops the problem soundly back into the doctor’s lap, without you entering into a futile argument with him/her.

    In my experience, sometimes the doctor comes back around to thinking about thyroid as a possibility. Sometimes the doctor finds something else going on. And, truly, what is important is that you find out what IS causing the symptoms.

    As to whether or not you need T3 and T4 tests: The TSH is a very finely tuned test. It shows a “running average” of your actual thyroid hormone levels. And our doctors rely heavily on it. Early on in the illness, they watch a variety of thyroid hormone tests and TSH tests, to make sure that nothing else is abnormal. But, generally, they do not usually ask for all the tests, even if I come in with symptoms.

    I hope this helps.
    Bobbi — NGDF Online Facilitator

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