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#1 thybo

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Posted 28 May 2017 - 03:25 PM

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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#2 Lovlkn

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Posted 28 May 2017 - 11:59 PM

Welcome to the board!

 

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


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#3 joplin1975

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Posted 29 May 2017 - 11:18 AM

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.
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#4 thybo

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Posted 29 May 2017 - 11:09 PM

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.



#5 joplin1975

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Posted 29 May 2017 - 11:51 PM

Those TSH results are way, way too high.
  • Lovlkn likes this
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#6 jenny v

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Posted 30 May 2017 - 12:39 AM

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.


Thyroid problems since 2002
Diagnosed with Graves Disease 2002 and Hashimoto's Disease April 2012
TT on October 10, 2013
Currently on 90mg Westhroid and 50mcg Cytomel


Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#7 thybo

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Posted 30 May 2017 - 02:36 AM

How are they too high? Some people have them way higher, even in the hundreds.



#8 Lovlkn

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Posted 30 May 2017 - 11:44 AM

Your labs scream HYPO!!!!
Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#9 joplin1975

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Posted 30 May 2017 - 12:15 PM

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. 


Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#10 thybo

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Posted 31 May 2017 - 03:52 AM

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"? 



#11 Lovlkn

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Posted 31 May 2017 - 01:28 PM

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.


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#12 joplin1975

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Posted 31 May 2017 - 02:22 PM

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. 


Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#13 creepingdeath

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Posted 31 May 2017 - 03:51 PM

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.



               


#14 thybo

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Posted 02 June 2017 - 04:34 AM

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.



#15 thybo

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Posted 26 July 2017 - 11:41 PM

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?



#16 jenny v

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Posted 27 July 2017 - 05:14 PM

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?


Thyroid problems since 2002
Diagnosed with Graves Disease 2002 and Hashimoto's Disease April 2012
TT on October 10, 2013
Currently on 90mg Westhroid and 50mcg Cytomel


Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#17 thybo

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Posted 27 July 2017 - 09:08 PM

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. 



#18 thybo

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Posted 08 February 2018 - 08:18 PM

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?

 

I will be testing again soon. I will be doing TSH, free T3/T4. For the antibodies, is TPOAb enough?



#19 jenny v

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Posted 09 February 2018 - 12:01 AM

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


Thyroid problems since 2002
Diagnosed with Graves Disease 2002 and Hashimoto's Disease April 2012
TT on October 10, 2013
Currently on 90mg Westhroid and 50mcg Cytomel


Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#20 thybo

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Posted 09 February 2018 - 01:55 AM

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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