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  • CrystlWillow
    Post count: 5

    I am in need of some advice. My doctor has been testing my TSH & T4 about every six months for over 2 years and my TSH has always been 0.03 and my T4 has been 1.33-2.3

    Now my problem is that I’ve never had any symptoms and I once she started talking meds and/or radioactive treatment I asked for a referal to an endocronologist to get a 2nd opinion and more info about why my numbers are off but not having symptoms and how to handle that. I don’t want to just arbitrarily do any kind of treatment that would cause worse problems without trying to find out more and now that I’ve gotten an appointment, even though it’s not until February and she now wants to push the treatment options without waiting until I can see the endo and I’m really not all that comfortable about the treatments and their side effects since I’ve not had any symptoms. Now I understand that it could damage other bodily organs but should I not have the choice to wait if I so choose and has anyone ever heard of testing hyper without symptoms.

    Thanks

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello and welcome! One issue to check is whether your T4 is falling within the normal range of your lab, as this range will vary slightly from facility to facility.

    If you are within the “normal” range for T3 and T4, this is considered subclinical hyperthyroidism (SH). The American Thyroid Association just released some new guidelines on the treatment of hyperthyroidism, including subclinical hyperthyroidism. They now recommend treatment for SH for “all individuals ≥ 65 years of age; in patients with cardiac risk factors, heart disease or osteoporosis; in postmenopausal women who are not on estrogens or bisphosphonates; and in individuals with hyperthyroid symptoms.” There are a number of concerns with untreated subclinical hyperthyroidism, particularly related to osteoporosis and heart issues.

    If you have SH and do not fall within this recommended treatment group and do not wish to pursue treatment, it is certainly reasonable to seek another opinion. If your T4 is out of range, though, it’s more likely that your doctor will continue to push for treatment due to the risks mentioned regarding SH as well as the risk of thyroid storm.

    One other issue to keep in mind is that it’s possible to be symptomatic, but to attribute the symptoms to other issues — or to get so used to them that they kind of become a regular part of our lives! Prior to diagnosis, I had tremors, sweating, insomnia, and rapid heart rate, but I’d written all of those things off to stress!

    snelsen
    Post count: 1909

    Darn it! I just lost my 4 paragraph post to you. Not sure why.

    Will try to summarize. And add another response if I think of more later.

    1. Consider calling the endo’s office, asking to be notified of any cancellation.
    Provide your labs when you call, and how long they have been in this range.

    2. Considering your labs have been so stable for so long, February does not seem that far off.

    3. Age matters, and you should consider this. The values change a bit with age.

    4. To have a complete story, be sure to include the range for them They differ with each lab.

    Shirley, my thoughts from another Grave’s TED person.

    emmtee
    Post count: 148

    I was like Kimberly – long before I was diagnosed with Graves’, I was having symptoms that I (and my doctors) had attributed to other health issues. Once I got my thyroid hormone test results, everything made sense. My symptoms had come on gradually and had been going on for so long that I didn’t realize how bad I’d been feeling until after a few weeks on anti-thyroid medication when I started feeling better.

    How is your blood pressure? When I was first diagnosed with hyperthyroidism (they hadn’t labeled it “Graves’ Disease” yet) and while I was waiting to get in to see the endo they had referred me to, my GP prescribed blood pressure medicine for me. I was actually on it already, but she doubled my dose. If your doctor is worried about your having a thyroid storm, maybe it would appease him if you took a small dose of BP medication while you wait for your endo appointment.

    Can you get copies of all your old labs? I get my results online now, and I can see all my old tests for the last few years. I like to enter all my results into a spreadsheet, so I can see them all on one page and identify any trends. I also have a column where I log any changes in my medication dosage.

    CrystlWillow
    Post count: 5
    emmtee wrote:
    I was like Kimberly – long before I was diagnosed with Graves’, I was having symptoms that I (and my doctors) had attributed to other health issues. Once I got my thyroid hormone test results, everything made sense. My symptoms had come on gradually and had been going on for so long that I didn’t realize how bad I’d been feeling until after a few weeks on anti-thyroid medication when I started feeling better.

    How is your blood pressure? When I was first diagnosed with hyperthyroidism (they hadn’t labeled it “Graves’ Disease” yet) and while I was waiting to get in to see the endo they had referred me to, my GP prescribed blood pressure medicine for me. I was actually on it already, but she doubled my dose. If your doctor is worried about your having a thyroid storm, maybe it would appease him if you took a small dose of BP medication while you wait for your endo appointment.

    Can you get copies of all your old labs? I get my results online now, and I can see all my old tests for the last few years. I like to enter all my results into a spreadsheet, so I can see them all on one page and identify any trends. I also have a column where I log any changes in my medication dosage.

    My blood pressure is always great. last few times I’ve had it checked it was 110/60, nurse even said ‘Wow’ when she checked it. I have got a list with my numbers as follows:

    8/18/14
    TSH .03

    8/29/14
    T4 Free 1.84

    8/30/14
    TPO 20 (I have no idea what this is)

    8/29/14
    Thyroid Stim Immunoglobulin 33

    10/20/14
    T4 Free 1.39
    TSH .03

    11/24/14
    T3 Free 3.9

    11/12/15
    TSH .03
    T4 Free 2.30

    5/12/16
    TSH .03
    T4 Free 1.96

    9/26/16
    TSH .036
    T4 Free 1.61

    Now she has never really explained what any of these numbers mean other that they are high/low

    CrystlWillow
    Post count: 5
    Kimberly wrote:
    Hello and welcome! One issue to check is whether your T4 is falling within the normal range of your lab, as this range will vary slightly from facility to facility.

    If you are within the “normal” range for T3 and T4, this is considered subclinical hyperthyroidism (SH). The American Thyroid Association just released some new guidelines on the treatment of hyperthyroidism, including subclinical hyperthyroidism. They now recommend treatment for SH for “all individuals ≥ 65 years of age; in patients with cardiac risk factors, heart disease or osteoporosis; in postmenopausal women who are not on estrogens or bisphosphonates; and in individuals with hyperthyroid symptoms.” There are a number of concerns with untreated subclinical hyperthyroidism, particularly related to osteoporosis and heart issues.

    If you have SH and do not fall within this recommended treatment group and do not wish to pursue treatment, it is certainly reasonable to seek another opinion. If your T4 is out of range, though, it’s more likely that your doctor will continue to push for treatment due to the risks mentioned regarding SH as well as the risk of thyroid storm.

    One other issue to keep in mind is that it’s possible to be symptomatic, but to attribute the symptoms to other issues — or to get so used to them that they kind of become a regular part of our lives! Prior to diagnosis, I had tremors, sweating, insomnia, and rapid heart rate, but I’d written all of those things off to stress!

    Well the only things I have that could be considered symptoms are as follows:

    Insomnia – had that since I was a kid, I’ve never slept much my entire life

    No Tremors, sweating or rapid heart rate

    No hair loss.

    Diarrehea – that started when I got my gallbladder removed in 1996 and was told that was a side effect of having it removed.

    Weight loss – in the last year I found out I was pre-diabetic and since diabetes runs in my family, I got real serious and totally changed my eating habits cutting carbs down to 50 or less and day, bought a treadmill and have exercised a lot and in 10 months I’ve gone from 205 to 171 but as far as I’m concerned I worked my butt off to accomplish that and don’t consider it a symptom.

    And I have not been feeling bad at all and am generally healthy other than getting a cold after everyone around me at work gets it, but that’s still rarely.

    Also from looking at my results I posted in another reply she has only tested my T3 one time.

    She even listened to my heart this week at my appointment and said it sounded good, although I know that’s not a perfect example and had me hold out my hands and no tremors.

    CrystlWillow
    Post count: 5
    snelsen wrote:
    Darn it! I just lost my 4 paragraph post to you. Not sure why.

    Will try to summarize. And add another response if I think of more later.

    1. Consider calling the endo’s office, asking to be notified of any cancellation.
    Provide your labs when you call, and how long they have been in this range.

    2. Considering your labs have been so stable for so long, February does not seem that far off.

    3. Age matters, and you should consider this. The values change a bit with age.

    4. To have a complete story, be sure to include the range for them They differ with each lab.

    Shirley, my thoughts from another Grave’s TED person.

    She has put in a request to the edno’s office to keep me in mind if there are any cancellations.

    I am 46 and she’s been testing my thyroid since I was 44.

    The same lab does all the labwork for this doctor so all my numbers are done by the same place.

    emmtee
    Post count: 148

    You should request copies of all these blood test results from your doctor. You’re legally entitled to them (assuming you live in the U.S. – I don’t know about other countries). The results from the lab will show the normal ranges, and you really need that information in order to understand what these figures mean.

    I’ve never had TPO or TSI tests, but I just googled them, and apparently they have to do with Graves’ diagnosis. (Mine was diagnosed from my uptake and scan, along with having all the classic symptoms).

    It’s interesting that your TSH is so consistent. I almost wonder if “.03” is the lowest that your lab measures. Mine was consistently “<0.006" for a long time, and I finally realized that the "<" meant that the actual level could be lower, but that was the lowest that the lab could measure. Without knowing your lab’s normal ranges, we can’t really know what your test results mean, but I do notice that your T4 seems to have been lowering over the past year, and your TSH increased slightly in your last test. These are both signs of improvement. One symptom that I had that you didn’t address was anxiety and heightened emotions. Other than the scary eye issues, this was the worst symptom for me. I would cry easily or get very frustrated by relatively minor things. You sound pretty upbeat in your posts, though, so I’m guessing that this isn’t an issue for you. It sounds like your weight loss was not at all “unexplained.” Good for you! :-)

    CrystlWillow
    Post count: 5
    emmtee wrote:
    You should request copies of all these blood test results from your doctor. You’re legally entitled to them (assuming you live in the U.S. – I don’t know about other countries). The results from the lab will show the normal ranges, and you really need that information in order to understand what these figures mean.

    I’ve never had TPO or TSI tests, but I just googled them, and apparently they have to do with Graves’ diagnosis. (Mine was diagnosed from my uptake and scan, along with having all the classic symptoms).

    It’s interesting that your TSH is so consistent. I almost wonder if “.03” is the lowest that your lab measures. Mine was consistently “<0.006" for a long time, and I finally realized that the "<" meant that the actual level could be lower, but that was the lowest that the lab could measure. Without knowing your lab’s normal ranges, we can’t really know what your test results mean, but I do notice that your T4 seems to have been lowering over the past year, and your TSH increased slightly in your last test. These are both signs of improvement. One symptom that I had that you didn’t address was anxiety and heightened emotions. Other than the scary eye issues, this was the worst symptom for me. I would cry easily or get very frustrated by relatively minor things. You sound pretty upbeat in your posts, though, so I’m guessing that this isn’t an issue for you. It sounds like your weight loss was not at all “unexplained.” Good for you! :-)

    Yes after looking again it does say <.03 on all of them I just didn't notice. I’ve never been one to stress much or at least for any long period of time. Sometimes I’ll stress for a day over something and by the next day I’m like ‘It doesn’t matter, whatever happens happens’ and just move on. Now I do have my daddy’s red-headed temper but I’ve had that all my life and I’ll blow over something and then I’m done. I’ve never really been very emotional other than that. I’m just so frustrated that I feel fine and have no symptoms but all these test results say I should feel like crap, and I’m not one to take a lot of meds and substitute herbal remedies for anything I can.

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