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Discussion Starter · #1 ·
Hi newbie here,

I've been on a low dose of thyroid medication for a few years no problems....that is until about almost a year ago.
Sept I had routine labs (the doc only checked Tsh)
It was 6.87

Doc told me to increase so
TSH dropped to 2.25

Then I decided to do a radical change of my diet no gluten, refined sugar, dairy ECT basically real clean diet then my TSH dropped.
TSH was .15

Then the Doc told me to go back to the original dosage.
TSH went 8.71

Then the Doc told me to increase.
TSH went to 5.

Then Doc told me to increase again
TSH was 5.27

Bloodwork every 6 weeks... So far I've gone 5 times soon to be 6th time for bloodwork. UGH!

I'm getting SO FRUSTRATED! I don't sleep well, my muscles feel weak, I get too hot by walking to fast that I feel like I'm going to pass out it's awful!!!

Any thoughts would be greatly appreciated馃槉
 

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TSH is an unreliable test for thyroid hormone in system. It can lag up to 6 weeks making it useless in my opinion. If you truly want to know active thyroid hormone in blood the Free T-4 and Free T-3 tests are best. Your goal would be to be at least 1/2 range for both and up to 3/4 range depending on how you feel.

I've been using those labs for over 15 years to dial in my thyroid hormone replacement and can tell you it works.
 

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Discussion Starter · #3 ·
TSH is an unreliable test for thyroid hormone in system. It can lag up to 6 weeks making it useless in my opinion. If you truly want to know active thyroid hormone in blood the Free T-4 and Free T-3 tests are best. Your goal would be to be at least 1/2 range for both and up to 3/4 range depending on how you feel.

I've been using those labs for over 15 years to dial in my thyroid hormone replacement and can tell you it works.
THANK YOU! 鈽篏lad you said that.......I got SO frustrated at the docs the last time that she Finally ordered the free T-3 and free T-4 on my next labs... I'm beginning to hate doctors.馃槉
Thank you for the advise!!!!!
 

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First for your title, have them check your TPO Antibodies and TG Antibodies. Positive test results would indicate Hashimotos. This would be good to know if that's causing your issues.

Consider what supplements you are taking. Never take Biotin 3-5 days before thyroid tests. They interfere with the tests.

Also with supplements, be very careful with any of them. I even had this recently...I was taking a multivitamin and it ended up being the cause of many health issues. Stopped taking it and I was good to go again.

Another thing to consider is what type of medicine you are taking. I found the generic Levothryoxine didn't work for me. I switched to Synthroid brand name and am doing much better. Tirosint is another option. Both of those are not nearly as affordable as the generic. Use coupons on their websites to get it more affordable if your insurance doesn't make them better. Currently I'm paying $75 for 90 pills and I'm using the coupon now. Your doctor has to specifically say you need to brand name.

It does take a long time for things to settle. Keep your stress as low as possible. Stress is terrible for Hashimotos.
 

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THANK YOU! 鈽篏lad you said that.......I got SO frustrated at the docs the last time that she Finally ordered the free T-3 and free T-4 on my next labs... I'm beginning to hate doctors.馃槉
Thank you for the advise!!!!!
This can be the case, but not always the case. But for sure try to get TSH, FT4 and FT3. Even if your doctor doesn't use FT3, still say you would like to see those results. I've had good luck with my tests recently.

Here are some things to help get consistent test results (TSH FT4 and FT3)

Get tested at the same time of the day each time. When on T4 medication (levo etc), it doesn't exactly matter if you take your medication before the tests, but I like to take my tests first thing in the morning before I take my meds. All of these tests have a rhythm throughout the day. So if you get one test at 8am, another was 3pm, Another was 7 pm...you'd have different results.

If someone is on T4 and T3 medication, the TSH test becomes a bit harder to interpret. But I feel that people on T4 only medication it's a bit more reliable.

Another thought that maybe causing you issues. How do you take your medication? It should be taken with water 1 hour before eating or drinking anything. Do not take it close to other supplements, especially Iron and Calcium. Walnuts and grapefruit can interefere with absorption. All of these things I bring up are on the Synthroid website.

If you are not absorbing the medicine consistently, you'll have ups and downs with your tests.

The fact that your levels went way down with a clean diet is a good sign. I did the same (though I don't think it impacted my levels). My thyroid is pretty much toast, so it probably doesn't have as much an impact on that. But yours is maybe not quite as destroyed (assuming you have Hashimotos). Just ask them to test for Hashimotos.
 

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TSH is an unreliable test for thyroid hormone in system. It can lag up to 6 weeks making it useless in my opinion. If you truly want to know active thyroid hormone in blood the Free T-4 and Free T-3 tests are best. Your goal would be to be at least 1/2 range for both and up to 3/4 range depending on how you feel.

I've been using those labs for over 15 years to dial in my thyroid hormone replacement and can tell you it works.
Lovlkn,

unfortunately FT4 and FT3 can also be unreliable depending on how those tests are being conducted. Through research I've found that getting Mass spectrometry FT4 and FT3 tests are more accurate. I don't currently get mine done this way, but I would like to. Convincing my doctor maybe another thing.

Again, I don't think TSH is as unreliable as people tend to make it out to be. Especially for people on T4 medication. That's not to say there are not issues. TSH tests can be misleading if someone is not processing the T4 hormone for some reason. This would show with a normal TSH, high FT4 and low FT3. Something is causing the person to not be doing well in this case. That could be many things. Does that mean TSH is not worthwhile? no. But when take in context with FT4 and FT3 it can be useful.

If someone is on T4 and T3 meds, it's a bit harder to use.

All this being said though...the body is constantly adjusting to things. And that affects FT4 and FT3 as well.

Honestly it takes many months for things to smooth out. If someone is constantly upping and lowing doses, the body can never get used to what is going on. And thus things will be up and down with the tests as well.
 

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Discussion Starter · #7 ·
W
This can be the case, but not always the case. But for sure try to get TSH, FT4 and FT3. Even if your doctor doesn't use FT3, still say you would like to see those results. I've had good luck with my tests recently.

Here are some things to help get consistent test results (TSH FT4 and FT3)

Get tested at the same time of the day each time. When on T4 medication (levo etc), it doesn't exactly matter if you take your medication before the tests, but I like to take my tests first thing in the morning before I take my meds. All of these tests have a rhythm throughout the day. So if you get one test at 8am, another was 3pm, Another was 7 pm...you'd have different results.

If someone is on T4 and T3 medication, the TSH test becomes a bit harder to interpret. But I feel that people on T4 only medication it's a bit more reliable.

Another thought that maybe causing you issues. How do you take your medication? It should be taken with water 1 hour before eating or drinking anything. Do not take it close to other supplements, especially Iron and Calcium. Walnuts and grapefruit can interefere with absorption. All of these things I bring up are on the Synthroid website.

If you are not absorbing the medicine consistently, you'll have ups and downs with your tests.

The fact that your levels went way down with a clean diet is a good sign. I did the same (though I don't think it impacted my levels). My thyroid is pretty much toast, so it probably doesn't have as much an impact on that. But yours is maybe not quite as destroyed (assuming you have Hashimotos). Just ask them to test for Hashimotos.

Wow thanks. I always try and get bloodwork at the same time and I always take it at the same time AND hours before I eat or drink anything. I have NO CLUE if I have Hashimotos. And I never even knew what biotin was until the doc asked me if I was taking it馃槀馃槀馃槀
I'm hoping it gets worked out though because I'm tired of the needle going into my arm every 6 weeks.馃槀
 

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Personally I think it is worthwhile to find out if you have Hashimotos. It's 90% or more the cause of hypothyroidism, however, there are many other possible things. Iodine deficiency is another reason. This is not too likely in our US diet, but it is possible. Heavy metal exposure is another potential. Say someone that works in a factory that deals with that sort of thing. Most likely you do, but why not make sure that's what it is? I don't understand why doctors just assume it is.

Another way to find out if you do is a thyroid ultrasound. However, it sounds like you maybe early on in the process and it may not show up obviously on there. Not sure. I've never had an ultrasound done. It's usually done for people with nodules on the thyroid.

If you have it, don't worry too much. I personally think we can do things to address the Hashimotos side of things. But you will find most doctors don't believe in that. Things we can do is adjust diet, lower stress, sleep better, exercise (even walking 30 min a day), get better nutrition and address nutrition deficiencies (test for those). Vitamin D, Iron, B12 often are potential things people have problems with. Addressing trauma is another thing that can be helpful (if any trauma had occurred).
 

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Discussion Starter · #9 ·
Hmmm lots to think about. I asked the doc if she could check for selenium, iron and others but she wouldn't do it. I'm not in the position right now to get it done myself and pay out of pocket or I would.Ugh...
Thanks!
 

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Discussion Starter · #10 ·
First for your title, have them check your TPO Antibodies and TG Antibodies. Positive test results would indicate Hashimotos. This would be good to know if that's causing your issues.

Consider what supplements you are taking. Never take Biotin 3-5 days before thyroid tests. They interfere with the tests.

Also with supplements, be very careful with any of them. I even had this recently...I was taking a multivitamin and it ended up being the cause of many health issues. Stopped taking it and I was good to go again.

Another thing to consider is what type of medicine you are taking. I found the generic Levothryoxine didn't work for me. I switched to Synthroid brand name and am doing much better. Tirosint is another option. Both of those are not nearly as affordable as the generic. Use coupons on their websites to get it more affordable if your insurance doesn't make them better. Currently I'm paying $75 for 90 pills and I'm using the coupon now. Your doctor has to specifically say you need to brand name.

It does take a long time for things to settle. Keep your stress as low as possible. Stress is terrible for Hashimotos.
Thank you!
 

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"Again, I don't think TSH is as unreliable as people tend to make it out to be. Especially for people on T4 medication."

Golo - you are out of line with this statement. TSH is a pituitary hormone, lags up to 6 weeks and is not reliable at all for someone without a thyroid. After reading and responding to people who only get TSH tested I speak from my personal experiences on this subject.
 

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Your case Lovlkn is somewhat unique...not having a thyroid and on T4 and T3 medication. But for the majority of people with Hashimotos and on T4 only medication, it's a different story when reading labs including TSH, FT4 and FT3. We really need to understand all of these factors when helping people out on interpreting labs.
 

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We can probably agree to disagree on this, but from what I've researched, interpreting and dosing based on labs can really depend on what form of medication you are on. For instance, On T4 only, I think optimal labs are TSH under 2.5, FT4 and FT3 mid to 3/4 range. On T4 and T3, I would agree with you that it maybe best to go by FT4 and FT3, but I'd also get TSH also. The only issue is some folks need to have the TSH suppressed when on combination therapy. TSH would normally be pretty low on combination. And just thinking about, you are basically replacing the need for TSH by adding both types of hormone at the same time.

However, what I have seen in other thyroid groups is people on different hormone replacement therapy try to apply the same thoughts to others on different therapy. For instance, one guy in a group I was in was on T3 only...the way that works is completely different than T4 only or T4 and T3. Another guy was on NDT. Both of them often would make statements based on their current therapy. However, it's just different in my experience depending on what you are on.

This is likely why most doctors go by TSH...because the majority of people are on T4 only. I personally still don't agree with TSH only, but I understand why they do. What they don't consider is a situation where someone isn't optimal in other aspects (which quite frankly is quite possible when someone is first diagnosed that they are not optimal). So they don't consider the possibility of someone not turning that hormone into T3 via conversion (or at least not doing conversion well).

All this being said, any dose change takes a long time for the body to adjust. And part of that is actually related to TSH. For those of us who do not have suppressed TSH.

Again, I totally believe you for your situation TSH may not be helpful at all. But for Bubblesrfun, it maybe still helpful. But should be considered in addition to FT4 and FT3
 

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I want to bring up one more point. People without a thyroid are getting no help from their thyroid (captain obvious). However, someone with just a little bit of damage from hashimotos is still getting T3 help from their thyroid. How much depends on how much damage has been done. So even if they are on combination T4 and T3 (let's say synthetic T4 and T3), they may not need as much synthetic T3. In your situaiton, you are getting no help and if your conversion isn't great it's really bad. Hence why you need more T3 I would guess than most. Also why people without a thyroid, or people who had radiactive iodine, or people who have hashimotos and their thyroid is completely destroyed do better on combination therapy. Because they are getting no assistance at all from their thyroid. This is also why some people do just fine on T4 only medication (let's say they don't have much thyroid actually destroyed).

NDT is a bit different than synthetic T4/T3 and really should be handled differently. Good luck finding a great doctor that can dose all of these.

T3 only from what I have picked up on is a last resort and pretty tricky to manage. Usually not recommended from what I've seen. However, some people claim it was useful for their very specific situation.
 

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The attached is a good representation. Notice that the thyroid puts out 93% T4 and 7% T3...then the gut/liver/etc converts the 93% to T3 and RT3. That 7% of T3 coming from the thyroid is missing for folks that have no thyroid/ RA iodine/ or end stage Hashimotos (meaning the thyroid has been completely been destroyed).
 

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