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Discussion Starter · #1 ·
Hello. I started taking 25 mcg levothyroxine two years ago when I felt lethargic and my TSH came back 9.8, 0.45-4.5 being normal. At least three people in my family have thyroid issues also. As it built up in my body, I felt immediately better. However, I never went for follow up blood tests because I have vasovagal syncope and dread having them done as a result. I just go with how I feel, and since it's a lowest dosage and I feel fine, I'm assuming there is no need to adjust. In the first few weeks, I actually felt I had too much in my system because I had trouble falling asleep and had similar hyperthyroid symptoms. As a result, I've been skipping a dose on Sunday for months now. Am I causing problems down the line doing this?
 

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Welcome to the board!

Do you have any recent thyroid lab results with ranges you could share?
 

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It's virtually impossible to answer your question (as it relates specifically to you) without labs.

That said, speaking generally, people can and do skip one day a week. I was told the real issue is the total amount of t4 you get in one week.
 

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Discussion Starter · #4 ·
I had two blood tests, one in 2011 when the TSH (Ultra Sen 3rd gen) was 5.88, and one in 2015 the TSH (not sure which test) was 9.81. Since then I didn't have one.
 

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Those TSH results are way, way too high.
 
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You need to do labs, period. You have to do them regularly when on thyroid medication to make sure you have enough in your system.
 

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Your labs scream HYPO!!!!
 

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How are they too high? Some people have them way higher, even in the hundreds.
Well, yes. I've had TSH in the 100s. And in the 70s and 40s and 20s, etc etc etc. Just b/c I had those results doesn't mean they were good. That's sort of like wondering why its bad to fail a class when other people have failed the class too.

The American Thyroid Association says that TSH should not be above 3.0. Research has shown that keeping TSH suppressed (that is, on the lower end of the scale) slows down the progression of the disease. Therefore, most of us say you should aim for TSH to be around 1.0. And, again, we'd also argue that TSH is good for initial diagnostic testing but isn't really that useful for "dialing in" the correct dose.

You really need to have complete and regular lab work done.
 

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Discussion Starter · #10 ·
I will have them done soon then. It's just the last two times I had a blood test I passed out and I try to avoid it at all cost, but it seems like there is no way around it. What test do I ask for to "dial in"?
 

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I will have them done soon then. It's just the last two times I had a blood test I passed out and I try to avoid it at all cost, but it seems like there is no way around it. What test do I ask for to "dial in"?
How are you receiving prescription refills without lab's? Very odd - most doctors require lab's at least annually if not more.
 

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I can imagine passing out during blood tests is unpleasant at best, but...its required for thyroid meds.

You need TSH, free t4 and free t3.
 

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When I had my blood tested for the first time ever was 5 years ago when my thyroid became diseased.
I almost passed out. So the next time I had blood drawn I told the Phlebotomist that I almost passed out the last time.
She drew my attention away from what she was doing by sparking up a conversation with me.
Before I knew it, it was over and I didn't even feel anything.
Tell the person who draws your blood that you have a tendency to pass out.
After the first couple of blood draws you will get used to it.

Like the previous members told you , you must have blood tests when treating thyroid disease.
 

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Discussion Starter · #14 ·
How are you receiving prescription refills without lab's? Very odd - most doctors require lab's at least annually if not more.
I read a lot so he listens to me, I usually tell him what to prescribe whenever I have a problem. So because of that he trusts me enough to keep prescribing it without labs. Although I have no data, I feel better than before the medication, and I also take the lowest dose possible and at the same time I'm not exhibiting hyperthyroid symptoms so I'm assuming my levels are fine. But I will do the test as it is the only way to be sure.

When I had my blood tested for the first time ever was 5 years ago when my thyroid became diseased.
I almost passed out. So the next time I had blood drawn I told the Phlebotomist that I almost passed out the last time.
She drew my attention away from what she was doing by sparking up a conversation with me.
Before I knew it, it was over and I didn't even feel anything.
Tell the person who draws your blood that you have a tendency to pass out.
After the first couple of blood draws you will get used to it.

Like the previous members told you , you must have blood tests when treating thyroid disease.
Drawing my attention away won't prevent me from passing out. It is not seeing it or feeling it that causes it. It's just my body automatically reacting to it. The last two times I didn't look at the needle and didn't feel it, yet both times after 30 seconds to a minute I passed out, like clockwork. I'm gonna try getting it drawn from my hand, lifting my feet up, and tensing all my other body parts. I read they could help to prevent this type of fainting.
 

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Discussion Starter · #15 ·
I can imagine passing out during blood tests is unpleasant at best, but...its required for thyroid meds.

You need TSH, free t4 and free t3.
Ok so I finally had the blood test done after 2 years and 3 months and without fainting once I followed the aforementioned techniques. My TSH is 3.98 (0.450-4.5), free T4 is 1.68 (0.82-1.77), and T3 is 111 (71-180). How do those numbers look?
 

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Congrats on not fainting!

Your results are a little odd. Usually when we see a high-ish TSH we see a low FT3 and FT4. Is that T3 result a Free T3? Have they ever run thyroid antibodies?
 

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Discussion Starter · #17 ·
Congrats on not fainting!

Your results are a little odd. Usually when we see a high-ish TSH we see a low FT3 and FT4. Is that T3 result a Free T3? Have they ever run thyroid antibodies?
Thanks! :) It just says T3 on the report, so maybe Total T3? Whereas for the T4 it says Free T4. I don't think I've done the antibodies yet.
 

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If you could, I would do TPOAb and TSI or TRAb (the hyper ones). That way you get a more complete picture.
 

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Discussion Starter · #20 ·
If you could, I would do TPOAb and TSI or TRAb (the hyper ones). That way you get a more complete picture.
Ok. Testing for TRAb antibodies is done with a TSI/TSAb test which are practically the same thing, correct?
 
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