# Dr said not to treat unless TSH > 10



## sjde (May 6, 2010)

I saw an endocrinologist 2 years ago who said he wouldn't put me on meds for hypothyroidism (Hashimotos) until my TSH was 10, as long as I wasn't having symptoms. I wasn't. (My TSH was ranging from 3 to 5.5.) That was fine with me since I have osteoporosis and I know that if you get too much thyroid hormone it thins your bones.
Fast forward two years. A new endocrinologist discovers a small nodule on ultrasound, biopsies it and tells me I need a thyroidectomy because Hurthle cells were found. Hurthle cell cancer is a variant of Follicular thyroid cancer and ufortunately, the only way to know if it's benign or malignant is to remove it and send it to pathology.
The surgeon I'm seeing said he disagreed with what the endocrinologist told me 2 years ago. He thinks you need to be treated if the TSH is high (generally that's 5 or 6, but I think he said 3) and no symptoms, because there is inflammation there and over years time that can or will cause cell changes, not a good situation.

Sue


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## Andros (Aug 26, 2009)

sjde said:


> I saw an endocrinologist 2 years ago who said he wouldn't put me on meds for hypothyroidism (Hashimotos) until my TSH was 10, as long as I wasn't having symptoms. I wasn't. (My TSH was ranging from 3 to 5.5.) That was fine with me since I have osteoporosis and I know that if you get too much thyroid hormone it thins your bones.
> Fast forward two years. A new endocrinologist discovers a small nodule on ultrasound, biopsies it and tells me I need a thyroidectomy because Hurthle cells were found. Hurthle cell cancer is a variant of Follicular thyroid cancer and ufortunately, the only way to know if it's benign or malignant is to remove it and send it to pathology.
> The surgeon I'm seeing said he disagreed with what the endocrinologist told me 2 years ago. He thinks you need to be treated if the TSH is high (generally that's 5 or 6, but I think he said 3) and no symptoms, because there is inflammation there and over years time that can or will cause cell changes, not a good situation.
> 
> Sue


I feel that is correct. Most of us feel best w/TSH @ 1 or less provided the FT3 and FT4 are where they should be.

Also, you are in as much danger bone-wise, if not more, if you are not on an adequate amount of thyroxine replacement. Your old doctor listens to old wive's tales too much. A thump on the head to him.

When are you scheduled for the surgery?


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## GD Women (Mar 5, 2007)

Hypos have a different metabolism than hypers, so hypos will feel better at a different level than hypers. One shoe does not fit all, likewise levels. Where one feels best another may not. Where hypers feel best hypos may not. There is not a gold level. That is why there are Lab ranges with a wide scale.

Studies, data and dialogue needed to determine TSH range Endocrine Today Jun 10, 2008 The gold standard for thyroid dysfunction screening remains debatable http://www.endocrinetoday.com/view.aspx?rid=28716

*AACE Re - Hypothyroidism:*
"We believe that treatment is indicated in patients with TSH levels >10 uIU/mL. or in patients with TSH levels between 5 and 10 uIU/mL in conjunction with goiter or positive antti-thyroid peroxidase antibodies.

"The target level should be between 0.3 and 3.0 uIU/mL."

AACE thyroid guidelines. Endocr Pract. 2002;8:457-469.
ENDOCRINE PRACTICE Vol 8 No. 6 November/December 2002 457
www.aace.com/pub/pdf/guidelines/hypo_hyper.pdf

*AACE Re - Hyperthyroidism*
AACE Medical Guidelines for Clinical Practice for Evaluation - 2002'
No consensus exist about management of subclinical hyperthyroidism. 
....TSH 0.1 uIU/mL....
In patients receiving levothyroxine for replacement therapy, the dose should be adjusted to serum TSH values range from 0.3 to 3.0 uIU/mL. 
www.aace.com/pub/pdf/guidelines/hypo_hyper.pdf

Most endocrinologists agree that if the serum TSH level is above 10 mlU/L, thyroxine therapy is indicated. For lower values of serum TSH, thyroxine therapy depends on the presence or absence of antithyroid antibodies and the associated clinical condition. 
http://www.springerlink.com/content/w82061702v4u6v72/

Highlights of the 74th Annual Meeting of the ATA: Subclinical Hypothyroidism
A patient with normal free and total T4/T3 may have signs and symptoms typical of hypothyroidism and, therefore, the disorder is not "subclinical." In addition, the signs and symptoms of subclinical and even overt hypothyroidism are relatively vague, and their presence or absence does not prove there is thyroid disease but is merely supportive of the diagnosis. Treatment with levothyroxine may or may not help ameliorate these symptoms
http://www.medscape.com/viewarticle/447587_3

*Studies, data and dialogue needed to determine TSH range June 10, 2008*The decision is one that puts endocrinologists and practicing physicians in a quandary over the conflicting opinions and evidence surrounding the upper limit of the TSH reference range. Age-specific ranges and screening pregnant women are among topics of debate.

As a result of inconsistent data and various studies published about the upper limit of the reference range, experts are at a disconnect in terms of what the limit should be, how the limit should be established and which population the limit - or limits - should apply to. http://www.endocrinetoday.com/view.aspx?rid=28716

The study found that patients with very high or suppressed (≤0.03mU/l) TSH levels more frequently suffered from heart disease, abnormal heartbeat patterns and bone fractures compared to patients whose TSH levels are in the normal range. These results show for the first time that it may be safe for patients taking long-term thyroxine replacement therapy to have a low but not suppressed TSH level
http://www.sciencedaily.com/releases/2010/03/100315230910.htm

Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration. http://jcem.endojournals.org/cgi/content/abstract/95/1/186


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## sjde (May 6, 2010)

GD Women--

You stated-"We believe that treatment is indicated in patients with TSH levels >10 uIU/mL. or in patients with TSH levels between 5 and 10 uIU/mL in conjunction with goiter or positive antti-thyroid peroxidase antibodies. "

I have a goiter and had positive anti-thyroid antibodies.


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## GD Women (Mar 5, 2007)

I didn't say that. I was quoting AACE and listed the URL. You posted that your TSH was "(My TSH was ranging from 3 to 5.5.)"

AACE - "or in patients with TSH levels between 5 and 10 uIU/mL in conjunction with goiter or positive antti-thyroid peroxidase antibodies."

You might want to copy AACE and refer it to your doctor. It might influence the doctor to treatment.

I know of several hypos with TSH of 7 and are perfectly fine. My sister was one of them. However, we are not all alike.

I would suggest discussing treatment a little further with your doctor and hand him AACE to read. But do it as though it is his idea or he'll probably come off arrogant and insulting. You have to handle these guys with kit gloves - know what I mean.


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## sjde (May 6, 2010)

Since I'm having my thyroid removed to check for malignancy, the TSH level for thyroid hormone treatment doesn't really matter at this point.


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## Andros (Aug 26, 2009)

sjde said:


> Since I'm having my thyroid removed to check for malignancy, the TSH level for thyroid hormone treatment doesn't really matter at this point.


It will matter a lot once you have your thyroid removed. And once again, when is your surgery scheduled please?


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## sjde (May 6, 2010)

Once it's removed I think they suppress it with hormones--keep the TSH really low. If it's found to be malignant anyway. If not, then I am not sure what they do.

I'm scheduled for end of November.


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## Andros (Aug 26, 2009)

sjde said:


> Once it's removed I think they suppress it with hormones--keep the TSH really low. If it's found to be malignant anyway. If not, then I am not sure what they do.
> 
> I'm scheduled for end of November.


That is correct; the TSH must be suppressed in all thyroid cancer patients.

Wow!! Surgery is around the corner! Good for you! Wonder if your doctor will put you on Lugol's Solution prior to suppress vascularity? Did surgeon say anything to that effect?

How do you feel? Are you receiving adequate moral support from family and friends?


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## sjde (May 6, 2010)

The dr said nothing about Lugol's, though I will ask. I'm assuming since he didn't bring it up, either he doesn't believe in it or doesn't think it would be helpful/appropriate in my case. He's a head and neck cancer surgeon (originally an ENT I think).
I am fortunate to have a lot of support.

How am I feeling? Worried. I know it does no good to worry but the 12 week wait(from biopsy result) is not easy. I just try to keep remembering what my endo told me--that studies have shown people do as well whether their surgery is immediately after diagnosis or up to a year after. The patient coordinator for another endo told me that even when they know ahead of surgery that you have cancer, you can safely wait 2-3 months. Though she also said Hurthle cells are more worrisome. because it can be more aggressive.


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## Andros (Aug 26, 2009)

sjde said:


> The dr said nothing about Lugol's, though I will ask. I'm assuming since he didn't bring it up, either he doesn't believe in it or doesn't think it would be helpful/appropriate in my case. He's a head and neck cancer surgeon (originally an ENT I think).
> I am fortunate to have a lot of support.
> 
> How am I feeling? Worried. I know it does no good to worry but the 12 week wait(from biopsy result) is not easy. I just try to keep remembering what my endo told me--that studies have shown people do as well whether their surgery is immediately after diagnosis or up to a year after. The patient coordinator for another endo told me that even when they know ahead of surgery that you have cancer, you can safely wait 2-3 months. Though she also said Hurthle cells are more worrisome. because it can be more aggressive.


I have been around the forums a very very long time and may I assure you that, yes........................you will be inconvenienced and yes, you will hurt for a while and yes, you might have to have RAI but you ultimately will come out smelling like a rose!

We are here for you if only for a hug.










I don't blame you for being worried. Any of of would be and many of us have.


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## GD Women (Mar 5, 2007)

sjde said:


> Since I'm having my thyroid removed to check for malignancy, the TSH level for thyroid hormone treatment doesn't really matter at this point.


I missed understood. I thought you were complaining about not being treated because doctor "said he wouldn't put me on meds for hypothyroidism (Hashimotos) until my TSH was 10".

Some doctors have the biopsy done while a patient is on the surgery table and if it isn't cancer they close up and send the patient off with a thyroid. If cancer than it is taken out right then and there. Saves a need for second surgery and hopefully a good thyroid.

Sorry for the misunderstanding. Good luck with surgery.


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## sjde (May 6, 2010)

I was actually saying I agreed with this doctor when he told me that 2 years ago. But now after seeing a different endocrinologist and having a consult with the surgeon and hearing his views, I think I probably should have been treated back then.

They plan to take the entire thyroid out right from the start. In my case, I'm not sure why. I think this is one of the main differences of opinion among thyroid surgeons--how much to take out.

I was told the frozen sections that pathology does during surgery aren't very accurate for identifying cancer.


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## Andros (Aug 26, 2009)

sjde said:


> I was actually saying I agreed with this doctor when he told me that 2 years ago. But now after seeing a different endocrinologist and having a consult with the surgeon and hearing his views, I think I probably should have been treated back then.
> 
> They plan to take the entire thyroid out right from the start. In my case, I'm not sure why. I think this is one of the main differences of opinion among thyroid surgeons--how much to take out.
> 
> I was told the frozen sections that pathology does during surgery aren't very accurate for identifying cancer.


You see, if they leave and tissue behind, the thyroid grows back. Believe that or not! That is not good when cancer is involved.

Also, if they leave some of the gland behind, it is just impossible to titrate your thyroxine replacement and this is a disaster. For you. One day you are hypo, the next day hyper. Talk about a roller coaster ride. OMG!!


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