# What are the latest recommendations for TSH level five years after PTC ?



## Want2FeelGood (Sep 17, 2011)

It's been five years since my PTC was removed by total thyroidectomy followed by RAI therapy. Was considered high risk because of age and positive lymph nodes. Now there's no definite evidence of disease.

For awhile my TSH was 0.01 to 0.1, but by slowly reducing oral thyroid the TSH is now 1.0 . Thyroglobin undetectable.

Seems I should keep my TSH suppressed at 0.1 to 0.5, not at 1.0 .

What are the current and best recommendations for TSH level?


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## joplin1975 (Jul 21, 2011)

http://www.thyca.org/pap-fol/more/tsh-suppression/

Were you symptomatic when your TSH was lower?


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## jenny v (May 6, 2012)

Are they also checking your Free T3 and Free T4, and not just TSH?


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## Want2FeelGood (Sep 17, 2011)

joplin1975 said:


> http://www.thyca.org/pap-fol/more/tsh-suppression/
> 
> Were you symptomatic when your TSH was lower?


Thanks for the link. No symptoms at the lower TSH, and no symptoms now. Feel fine.


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## Want2FeelGood (Sep 17, 2011)

jenny v said:


> Are they also checking your Free T3 and Free T4, and not just TSH?


Yes, but on Synthroid the FT3 and FT4 are not nearly as useful, according to my doctor. He relies on TSH.

Please explain the usefulness of FT3 and FT4?


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## Lovlkn (Dec 20, 2009)

> Yes, but on Synthroid the FT3 and FT4 are not nearly as useful, according to my doctor. He relies on TSH.
> 
> Please explain the usefulness of FT3 and FT4?


If those are your doctors opinions - it will be hard to change his mind and you may do better by switching doctors - showing up with your last lab which includes both FT-4 and FT-3 and tell them you want it run at every lab. It's a game we need to play, unfortunately. You can order the Free labs online yourself

TSH is a "screen" run for thyroid - it is actually released by the pituitary. It will be affected by antibodies both stimulating and blocking. TSH only is often used for cancer patients to show supression but it can be suppressed due to high FT-4 or high FT-3. The best way to suppress ( to help you feel your best) is a combination of mid to 3/4 range FT-4 and FT-3.

The FT-4 and FT-3 show the free and unbound thyroid hormone in your system at time of draw.


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## joplin1975 (Jul 21, 2011)

Want2FeelGood said:


> Thanks for the link. No symptoms at the lower TSH, and no symptoms now. Feel fine.


The approach my doctors and I have always taken is to keep the TSH as low as possible as long as I don't have any symptoms. I'm technically low-risk, but I did have lymph node invasion, so we figure why not. If I had symptoms, it would be a different story...


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## Want2FeelGood (Sep 17, 2011)

Lovlkn said:


> If those are your doctors opinions - it will be hard to change his mind and you may do better by switching doctors - showing up with your last lab which includes both FT-4 and FT-3 and tell them you want it run at every lab. It's a game we need to play, unfortunately. You can order the Free labs online yourself
> 
> TSH is a "screen" run for thyroid - it is actually released by the pituitary. It will be affected by antibodies both stimulating and blocking. TSH only is often used for cancer patients to show supression but it can be suppressed due to high FT-4 or high FT-3. The best way to suppress ( to help you feel your best) is a combination of mid to 3/4 range FT-4 and FT-3.
> 
> The FT-4 and FT-3 show the free and unbound thyroid hormone in your system at time of draw.


I've seen four Endocrinologists and they all said the same thing. The bottom line is TSH suppression, and not the T3 and T4 levels. The antibodies are checked only to be sure the lab test can be trusted.

Please please explain, if my TSH level were say 0.4, why the T4 and/or T3 is important? My T4 has always been normal, just at the upper range of normal. The T4 level has never played a role in my dosage adjustment. My body decides the T4 to T3 conversion from the available oral T4.

How does one order free labs on line? Which determinations? Where to get blood drawn? Is the lab reliable? Fees? Will insurance cover it?


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## Want2FeelGood (Sep 17, 2011)

joplin1975 said:


> The approach my doctors and I have always taken is to keep the TSH as low as possible as long as I don't have any symptoms. I'm technically low-risk, but I did have lymph node invasion, so we figure why not. If I had symptoms, it would be a different story...


Joplin, at what level are you keeping your TSH? Isn't the risk of atrial fibrillation greater the more TSH is suppressed? Seems my TSH should be kept at 0.1 to 0.5 . Do you agree?


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## joplin1975 (Jul 21, 2011)

See my signature. My latest was 0.21, which was lower than normal -- its been hovering around the 0.3-ish mark for some time now.

You can feel Afib so you'll know you are having it. What I've been told is that if I feel it and it seems consistent or at least something that happens more than once in a blue moon, I'm to call the doctor and we'll make adjustments as needed.

But if there are no symptoms and you (that's a general you, not you specifically  ) feel well, there's not too much risk in keeping your TSH low.

I do think you want to make sure your frees are in a good spot because without those being OK, chasing a TSH number is sort of like spinning you wheels. With that qualification, I don't see any harm in keeping your TSH in the 0.1-0.5 range.


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## Want2FeelGood (Sep 17, 2011)

joplin1975 said:


> See my signature. My latest was 0.21, which was lower than normal -- its been hovering around the 0.3-ish mark for some time now.
> 
> You can feel Afib so you'll know you are having it. What I've been told is that if I feel it and it seems consistent or at least something that happens more than once in a blue moon, I'm to call the doctor and we'll make adjustments as needed.
> 
> ...


One of the reasons the T4 is nearly useless (for me) on Synthroid is that for five plus years it has always been in the normal range, hence the TSH level has always been the gold standard. I get the TSH checked every 2-3 months.

My cardiologist tells me that once AFib starts, lower the oral thyroid dose doesn't guaranty AFib will go away. Then again, AFib is increasingly common as we get older, whether or not we take oral thyroid, so one will never know if oral thyroid was causative or contributory or played no role.


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## joplin1975 (Jul 21, 2011)

Well, there's "in normal range" and then there's optimal. Also, if you free t4 is in normal range but is too high, you'll get Afib. Same with free t3. So that's how you manage a low TSH without getting into Afib territory and that's why you have to look at the


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## Want2FeelGood (Sep 17, 2011)

joplin1975 said:


> Well, there's "in normal range" and then there's optimal. Also, if you free t4 is in normal range but is too high, you'll get Afib. Same with free t3. So that's how you manage a low TSH without getting into Afib territory and that's why you have to look at the


I'll ask my Endo. My cardiologist seems to think everyone will eventually develop AFib, and if a person with TSH 0.5 develops AFib, one will never know if it's age, bad luck, or thyroid supplementation. Do you have a reference for checking T3? None of the Endos I have seen ever mentioned checking T3 for people on l-thyroxine.


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## Lovlkn (Dec 20, 2009)

How do you "feel"?

Suppressing TSH is important to suppress post thyroid cancer for sure -

As I stated - TSH suppression can happen in different ways. I never asked an endo about adding Cytomel due to not converting because I could not get them to look at anything other than TSH.

For me - my TSH was always under 1 post TT. I had classic hypo symptoms. It took me several doctors before finding one to prescribe T3 hormone.

So if I had only been tested for TSH, the doctors would have never seen that my conversion of levothyroxine to FT-3 was not sufficient. Once I added T3 hormone alot of my hypo symptoms resolver - I just feel better overall. My TSH now is .008, my doctor ignores my TSH due to my FT-4 and FT-3 being within range.

In your case your FT-4 is above range - WOW, I am amazed you feel well. My experience with an above range FT-4 was feeling horrible, mostly hyper symptoms.


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## Want2FeelGood (Sep 17, 2011)

My FT4 has never been outside the normal range. It's always been about 1-20% BELOW the upper range of normal. I feel fantastic. I am only on Synthroid and trying to decide if my TSH should be slightly under 1.0 or slightly under 0.5 . I'm more than five years post-op.

Within two weeks I'll see the Endo and ask about what Super Moderator has so kindly typed.


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## Lovlkn (Dec 20, 2009)

My TSH is always suppressed - no matter - hypo or hyper or normal ( meaning 3/4 range) labs.

I felt horrible on T4 only , so glad to hear you feel well.



> For awhile my TSH was 0.01 to 0.1, but by slowly reducing oral thyroid the TSH is now 1.0 .


If you felt well prior to the reduction - please let us know how you feel a few months after your reduction.

Taken from the Synthroid package insert



> TSH Suppression in Well-differentiated Thyroid Cancer and Thyroid Nodules The target level for TSH suppression in these conditions has not been established with controlled studies. In addition, the efficacy of TSH suppression for benign nodular disease is controversial. Therefore, the dose of SYNTHROID used for TSH suppression should be individualized based on the specific disease and the patient being treated. In the treatment of well-differentiated (papillary and follicular) thyroid cancer, levothyroxine is used as an adjunct to surgery and radioiodine therapy. Generally, TSH is suppressed to < 0.1 mU/L, and this usually requires a levothyroxine sodium dose of greater than 2 mcg/kg/day. However, in patients with high-risk tumors, the target level for TSH suppression may be < 0.01 mU/L. In the treatment of benign nodules and nontoxic multinodular goiter, TSH is generally suppressed to a higher target (e.g., 0.1 to either 0.5 or 1.0 mU/L) than that used for the treatment of thyroid cancer.


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