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I'm not worried about a low TSH, but how to deal with PCP?


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#1 Scanders

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Posted 28 February 2020 - 04:19 AM

 I made an adjustment to my levothyroxine dose in early December to 88mcg alternating with 100mcg. I think I'm feeling all right. PCP wanted labs done to monitor for homeostasis. I had the labs done by a private lab for the first time, and it really is more cost-effective than the doctor's lab (T4 and TPO were included as well, and still less expensive than just these three with the other lab.) Here are the results:

 

T3, FREE 3.1 N 2.3-4.2 pg/ml T4, FREE 1.40 N 0.89-1.76 ng/dl TSH 0.063 L 0.550-4.780 uIU/ml

 

If my math is right (I don't trust my math, to be honest) FT3 is just below mid-range, but definitely improved, and FT4 is barely above mid-range. (This lab uses  a different reference range than the other lab.) I could be wrong, but I think she'll have an issue with the TSH being low.  I don't think I can omit it when I give her these results. But how do I sound somewhat intelligent as we have a dialogue about this?  I don't think I would need to decrease my dose, but I'm worried she will want to do that. I think I need to state my case with some science behind it as to why TSH isn't the end-all/be-all. I still have my thyroid, if that matters.

Thank you!


8/29/13 Diagnosed with Graves, and shortly after that TED. TED became severe when overtreated into hypo.(Hopefully corrective surgeries are all
completed.)Still have my thyroid. Started levothyroxine 11/2017. Up to 100mcg alternating with 88mcg since 12/2019.
Labs 12/19 FT3 2.1 (1.7-3.7); FT4 .9 (.7-1.5);TSH fluctuates but I feel best with it below 1.0 (last lab .4)

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#2 creepingdeath

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Posted 28 February 2020 - 07:31 PM

I'm not a doctor but I can give you some advice, my opinion and some theories from personal experience.

 

First you probably should tell your doctor that you are changing your dose as an experiment because you're not getting any better.

I myself, can't tolerate synthetics but I did take it at the beginning of my thyroid disease for two years. 

I got worsening symptoms within two weeks from taking Levothyroxine for the 1st time and continued to get worse the more I took.

The doctor I was seeing then only did TSH & occasionally free T4.

The results were always within range and the Levo did shrink my enlarged "goiter" thyroid but I felt more hypo with worsening symptoms.

I eventually got on desiccated thyroid and felt better almost immediately.

 

This is my theory to why lab ranges looked good but I felt worse on T4 only synthetics.

I've come to this conclusion after years of studying everything I could about thyroid disease, specifically Hashimoto's.

The pituitary gland responds to lowering "T4" in your system and not T3.

Taking T4 synthetic only fooled my pituitary into thinking everything's good and shrinks my thyroid but symptoms get worse than taking nothing.

Only till I paid out of my own pocket did I find out I was not converting T4 to T3.

My free T3 was below range and reverse T3 was above range.

The reason for not converting is from Pharmaceutical lies from the makers of T4 only synthetics.

Synthetic T4 is bioequivalent which means it should act the same as what your thyroid makes naturally but is not chemically the same. It is not bioidentical as the medical community and pharmaceutical companies want you to think.

The chemical structure & formula is very different.

 

My TSH now after taking desiccated thyroid is way below range but my free T4 & T3 are like they should be naturally.

 

If I were you I'd tell your doctor your tired of the run a round and you're not waiting for a hormone that's supposed to be the exact same as what your thyroid makes to start working.

If your doctor disagrees find a new doctor.

 

It literally took me 5 years of battling & 5 different doctors till one listened to me.

I'm treated now by clinical symptoms and labs to make sure my cholesterol is good.

 

I wish you the best of luck & don't give up till you feel the best you can.

It's your body and not the doctors and they work for you...……. 



               


#3 GOLGO13

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Posted 29 February 2020 - 12:32 AM

this article may help...or find another doctor

 

https://thyroidpatie...g-thyroid-dose/


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 


#4 GOLGO13

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Posted 29 February 2020 - 12:35 AM

Also...do you take biotin supplements? Your free numbers don't match up with your TSH really...looks like possible interference. Though I think they affect free numbers also (biotin).


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 


#5 creepingdeath

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Posted 29 February 2020 - 01:45 AM

What about the results of your TPO antibody test?

High antibodies can mess with TSH results also.



               


#6 Scanders

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Posted 29 February 2020 - 04:56 AM

Thank you for the responses, and I'm sorry I wasn't more clear. While I had to do some convincing after my last labs, the PCP made that adjustment in med--I didn't act independently--because I wasn't quite feeling well. It took some going back and forth, respectfully, of course.  So I feel all right now, certainly nothing that makes me think I need an adjustment in meds at this point.  And I think my frees look all right, actually. It's just that I have to report these results, and my concern is that the frees will be ignored because of that low TSH, so I was just asking for help with scientific talking points. I wanted to be proactive, if you will.

I don't take a biotin supplement. There was a TPO test in this profile.  The result was 39, with normal range being <60. 

In my simple brain, the low TSH simply means that I have enough thyroid hormone, and we don't need to scream for more. I mean, if I have enough hormone, why would I have TSH? Or, antibody results that are "negative" aren't the same as "0", and maybe there are just more blocking antibodies that keep my TSH low. My TSH was undetectable for a looong time before moving into hypo-range.


8/29/13 Diagnosed with Graves, and shortly after that TED. TED became severe when overtreated into hypo.(Hopefully corrective surgeries are all
completed.)Still have my thyroid. Started levothyroxine 11/2017. Up to 100mcg alternating with 88mcg since 12/2019.
Labs 12/19 FT3 2.1 (1.7-3.7); FT4 .9 (.7-1.5);TSH fluctuates but I feel best with it below 1.0 (last lab .4)

#7 GOLGO13

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Posted 29 February 2020 - 01:36 PM

How long did you wait before you tested from the dose change? I suggest at least 6 weeks.

 

What time of day did you take the tests? I suggest early in morning before you take your dose. This will be when it's at it's highest. And be consistent everytime.

 

How are your Iron levels? Suggest taking all 4 Iron tests and Ferritin. My Iron levels were low and that affected how the thyroid meds worked.

 

Let them know you are feeling better and let them know you want to wait until you test again to see if anything has changed.


Original: TSH 71 TPO 1980

Levo 100 (March 2018): TSH 1.02 (range .5-4.5)....FT4 1.65 (range .82 to 1.77).

Levo 100 (April 2018): Felt terrible TSH .68

Levo 88 (May 29 2018): Felt better but low energy TSH 3.010 (.450-4.5)|Free T3 2.8 (2.0-4.4 pg/ml)| Free T4 1.50 (.82-1.77ng/dl) TPO 226

Levo 91 (equivalent) (July 16 2018): Felt sort of OK TSH 4.470 (.450-4.50)|Free T3 2.6 (2.0-4.4 pg/ml)| Free T4 1.44 (.82-1.77 ng/dl)|TPO 181

94 (half 88 and half 100) Best I have felt so far TSH 3.671 uIU/mL (0.350 - 5.000)| Free T4 1.14 ng/dL (0.70 - 1.25)| Free T3 2.2 pg/ml (1.7-3.7)

94 generic (Dec 2018) TSH 4.98...boo...

94 Synthroid (Feb 2019)Name Brand 6 days a week and 100 Sythroid one day a week TSH 4.829 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.01 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.6 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (April 2019) 5 days a week, 100 twice a week TSH 2.763 uIU/mL (0.350 - 5.000 uIU/mL)| FT4 1.08 ng/dL (0.70 - 1.25 ng/dL)|FT3 2.5 pg/mL(1.7 - 3.7 pg/mL)

94 Synthroid (June 2019) 4 days a week, 100 3 days a week TSH 2.889 uIU/mL 0.350 - 5.000 uIU/mL| FT4 1.15 ng/dL 0.70 - 1.25 ng/dL|FT3  2.7 pg/mL 1.7 - 3.7 pg/mL

94 Synthroid (July 2019) 2 days a week, 100 5 days a week TSH 3.931 0.350 - 5.000 uIU/mL| FT4 1.07 ng/dL 0.70 - 1.25 ng/dL| FT3 2.4  pg/mL 1.7 - 3.7 pg/mL

100 Synthroid (Oct 2019) 7 days a week, 50 once a week TSH 2.479 0.350-5.000 uIU/mL| FT4 1.06 ng/dL 0.70 - 1.25 ng/d

100 Synthroid daily Synthroid 50 once a week TSH TSH 2.874 range .350 to 5 | T3 free 2.5 pg/ml range 1.7 to 3.7

112 Synthroid daily (Jan 2019) TSH 2.43 range .350-5.000 uIU/ml |  FT3 3.3 range 1.7-3.7 pg/mL | FT4 1.04 range .7-1.25 ng/Dl 

 


#8 creepingdeath

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Posted 29 February 2020 - 08:24 PM

Most doctors would lower your dose if TSH is lower than the lab range no matter what.

I had a professor of endocrinology tell me it does not matter what your symptoms are as long as Thyroid Stimulating Hormone is within range.

That if I still had symptoms that I had something else causing those symptoms.

He also told me when I ask about the alternative "desiccated thyroid" that this type of hormone is no longer produced and Synthroid T4 only is the only thyroid hormone available anymore . That if I can't tolerate the hormone to switch to another brand which is the same . I tried every brand even synthetic combo and T3 alone.

They all caused horrible side effects and did nothing for original symptoms but make them much worse.

I ripped up my lab results right in front of this so called professional, called him a blatant liar and walked out of his office.

He obviously has been being paid off by a pharmaceutical company to push their synthetic wonder drug. Every pharmacy I called had most brands of desiccated thyroid in stock...….

I found an old fashioned country doctor who had no problem at least letting me try Armour thyroid.

Within the 1st week on the lowest dose of Armour I could feel myself getting better.

And I've been taking it ever since.

When you see your doctor tell him/her that you feel good on your current dose.

If the doctor wants to change the dose because TSH is low...….refuse...…….

Remember this doctor works for you and it's your body that you know better than anyone else.

Find another doctor if they disagree with you.

 

again...good luck and let us know how it went....



               


#9 Scanders

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Posted 01 March 2020 - 01:48 AM

I'm getting the hang of lab testing now--I waited about 3 months from dose change to have best chance of homeostasis. I tested first thing in the morning, and did not take levothyroxine that day until after labs. That's how I always do it to be consistent. I think past doctor's behavior may have me worrying unnecessarily. If I feel all right, but the doc is worried about the TSH, then yes, respectfully request to leave it alone and retest again at a later date. If she refuses, then I guess I need to look elsewhere. Okey doke, let's see where this takes me... Thanks for the help!


8/29/13 Diagnosed with Graves, and shortly after that TED. TED became severe when overtreated into hypo.(Hopefully corrective surgeries are all
completed.)Still have my thyroid. Started levothyroxine 11/2017. Up to 100mcg alternating with 88mcg since 12/2019.
Labs 12/19 FT3 2.1 (1.7-3.7); FT4 .9 (.7-1.5);TSH fluctuates but I feel best with it below 1.0 (last lab .4)

#10 Lovlkn

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Posted 03 March 2020 - 04:07 PM

 

 

In my simple brain, the low TSH simply means that I have enough thyroid hormone, and we don't need to scream for more. I mean, if I have enough hormone, why would I have TSH? Or, antibody results that are "negative" aren't the same as "0", and maybe there are just more blocking antibodies that keep my TSH low. My TSH was undetectable for a looong time before moving into hypo-range.

I totally agree - not having TSH should indeed point to you being in perfect range.  More likely - you have stimulating antibodies such as TBII.  I have TBII and do not have TSH when in 1/2-3/4 ranges for both FT-4 and FT-3. I shut one MD up when I told them  this a long time ago and insisted they run TBII - which of course I was above range in.

 

 

T3, FREE 3.1 N 2.3-4.2 pg/ml T4,((3.25-3.715)) FREE 1.40 N 0.89-1.76 ng/dl ((1.325-1.54)) TSH 0.063 L 0.550-4.780 uIU/ml

I edited in ((bold)) the 1/2-3/4 of the Free ranges.  Free T-4 is perfect.  Free T-3 is still below mid range.

 

How do you feel?  If you feel good then these labs with your low range TSH are fine. For me running this low a TSH has had absolutely zero impact negatively on my bones. If your doc freaks about the TSH then ask for the TBII test.  I bet $1 its elevated.


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.

#11 Scanders

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Posted 04 March 2020 - 03:54 AM

I think I feel all right. Could I feel even better? Maybe. But I can't point out enough symptoms just now to justify asking for an increase. And while FT3 might be a smidge low, this is probably the closest it's been to mid-range in a couple of years.  I had a bone scan a few years ago and it was good.  I've reported the labs--haven't heard back. But I think I'm ok letting things ride for now, and I hope my PCP is fine with it, as well. Thanks Lovkin!


  • Lovlkn likes this
8/29/13 Diagnosed with Graves, and shortly after that TED. TED became severe when overtreated into hypo.(Hopefully corrective surgeries are all
completed.)Still have my thyroid. Started levothyroxine 11/2017. Up to 100mcg alternating with 88mcg since 12/2019.
Labs 12/19 FT3 2.1 (1.7-3.7); FT4 .9 (.7-1.5);TSH fluctuates but I feel best with it below 1.0 (last lab .4)




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