[annelb]

Last night I attended a thyroid seminar that was put on by the University Hospital of Little Rock. Although the 3 docs could not figure how to get the A/V equipment working, it was a good program.

Two doctors talked. The first one addressed hypothyroidism and the second one spoke about thyroid surgery. The third was the host.

Here are my notes. I will throw in the disclaimer that I took the best notes as I could but won’t guarantee they are perfect.

Hashimoto’s is the most common cause of hypothyroidism. He recommended that everyone by the age of 50 get screened for thyroid disease. Of course if there are risk factors, screening should start earlier. He did not say how often one should be screened if negative. He says the optimal TSH is .5 to 1. but the "normal" range is higher. Apparently lab tests vary - not standardized? (sounds familiar )

Hashimoto’s causes destruction of the thyroid for 10-20 years before diagnosis. He feels this is a syndrome that involves the entire body. It can cause infertility. Atrophic gastritis/pernicious anemia is found in 40-50% of those with Hashimoto’s. There is no research looking at Hashimoto’s being anything more than the thyroid. ( Gee, this sounds like another disease I know. ) He suggested that “powerful antidepressants” be used for depression related to Hashimoto’s – sometimes two antidepressants will be necessary.

T4 is Synthroid, Levoxyl, levothyroxine and it has an 8 day ½ life. That means if you miss a dose, the level of T4 will remain fairly constant.

T3 is Cytomel and has a short ½ life – he did not say how short but mentioned that it can cause a “buzz” when first taken and then let a person “crash” by the end of the day. He did say that he has some people on T3 but they take it 5-7 times a day to keep the blood level as constant as possible. There is no sustained release T3 – pharmaceutical companies don’t seem interested in developing this. He would like to have a sustained release T3.

Combination T4, T3 – says this has not been proven to be better.

Armour – “There is nothing natural about Armour”. It is dried out animal thyroids. He prefers the bioidentical drugs.

One person asked about getting medications through a compounding pharmacy. He was concerned about the quality and consistency of these formulas.

He warned not to let TSH fall below .5 – below .5 is associated with osteoporosis, atrial fibrillation and muscle weakness.

A rare cause of hypothyroidism is an Iodine overload. The iodine dyes used for diagnostic procedures can shut down the thyroid.

One person asked what she should do because she has symptoms of hypothyroidism but her thyroid tests are normal. He recommended getting thyroid antibody tests but did not say what he would do if they were positive.

He mentioned Wilson’s syndrome http://www.wilsonssyndrome.com/ This syndrome is early undetected thyroid disease that should be treated. So far there are no studies on Wilson’s syndrome. The American Thyroid Association finds has found no scientific evidence supporting the existence of "Wilson's syndrome. (hmmmm – this sounds awfully familiar )

Of course I got in a question about celiac disease. He is testing for celiac disease but only those showing symptoms …you know, in the bathroom all the time. He said they were easy to pick out . I will be writing him soon .

Are you ready for more? The next speaker was a surgeon.

A goiter is a mass of thyroid origin. It can be a cancer or a benign mass. When a mass is found, a fine needle aspirate (FNA) is done. This is using a needle to take a small sample of cells from the thyroid mass to determine if it is cancer. But FNA does not always give a definitive answer. Then it is recommend that a large biopsy be done. He says that modern surgeons do not do subtotal thyroidectomies – that is a thyroidectomy removing all but about 5-10% of the gland. If they are not sure if cancer is involved, a hemithyroidectomy is done – removal of ½ of the thyroid. If there is cancer, then a total thyroidectomy is the operation of choice.

Papillary cancer is the most common thyroid cancer. http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum Increased Risk of Papillary Thyroid Cancer in Celiac Disease

Complications from surgery include injury to the vocal cord nerve, injury to the laryngeal nerve, hypocalcemia from removal of the parathyroids and bleeding. Vocal cord injury can cause decrease in stamina as airflow through the larynx is diminished. Laryngeal nerve injury can result in aspiration problems. It is not in my notes but I think he said that hypoparathyrodism can be difficult to treat.

Medications after surgery may include thyroid replacement and calcium.

If a biopsy or a well done FNA is benign, it is benign for life – these lesions do not turn into cancer later in life.


It was a good seminar. They said they will be doing more. I suggested they cover graves disease, osteoporosis and adrenal problems.

Wish you could have been there.

Anne

[NancyM]

I tried T3 and found it was pretty hard to take. Made me too hyper. I actually think a lot of my problems with thyroid replacement hormones was I had brain fog and fatique from my food intolerances, it wasn't thyroid like I thought it was. Once I got off wheat and dairy that went away.

Although my free T3 levels are always a notch below the range.

[Leslieand]

There is a debate going on whether to treat subclinical hypothyroidism with an AACE report in 2003 finding that above 3.04 was an abnormal TSH based on the levels found in the general population. There has been research on diseases associated with hypothyroidism and the connection to subclinical hypothyroidism as well. The following year the AACE reversed it's recommendation to consider treating subclinical hypothyroidism with various groups continuing to debate the issue. Here is more:

[QUOTE]

Debate Over Subclinical Thyroid Disease Continues
by Mary Shomon

There is an ongoing debate over whether to treat subclinical thyroid hypothyroidism (where TSH is more than 4.5, but less than 10, and levels of free thyroxine (FT4) and triiodothyronine (T3) are within the reference range).

The debate continues with an article by Dr. Martin Surks and his colleagues in a recent article in the Journal of the American Medical Association. For the article, a panel of endocrinologists, as well as experts in lipid disorders, cardiology, women's health, evidenced-based medicine and screening, convened to determine whether subclinical hypothyroidism should be treated.

According to the researchers, there is little data that connects subclinical thyroid disease with symptoms or adverse clinical outcomes.

The researchers declare that there are minimal consquences of subclinical thyroid disease, and they we recommend against routine treatment of subclinically hypothyroid patients. The only circumstance in which they recommend more routine screening for or treatment in pregnant women, women older than 60 years, and others at high risk for thyroid dysfunction.

According to the American Thyroid Association, these results should "stimulate support for large prospective randomized trials of treatment of subclinical thyroid disease. The emphasis for clinicians should continue to be on testing those who are symptomatic or at high risk for thyroid disease, including those with a family history of thyroid disease, other autoimmune disorders including Type I diabetes, vitiligo, and premature menopause. Finally, the ultimate treatment decision must involve the clinician considering multiple factors; their clinical evaluation and judgment, patient preference, clinical outcome studies, potential risks of overtreatment with levothyroxine, and new bodies of evidence from well-designed studies that are logical and grounded in well-established principles of pathophysiology."

Source: Surks, et. al. "Subclinical Thyroid Disease: Scientific Review and Guidelines for Diagnosis and Management," JAMA, Jan 2004; 291: 228 - 238.

Mary's Comments

This research is another example of short-sighted, shoddy work by the nation's endocrinologists. I don't know what body of research these fellows were looking at, but obviously, they missed some recent articles that found that:
• Subclinical hypothyroidism treatment can reduce cholesterol levels and the risk of death from heart disease (Source: "TSH-controlled L-thyroxine therapy reduces cholesterol levels and clinical symptoms in subclinical hypothyroidism: a double blind, placebo-controlled trial (Basel Thyroid Study)," Journal of Clinical Endocrinology and Metabolism, 2001 Oct;86(10):4860-6)
• Treatment of subclinical hypothyroidism reduces the risk of athersclerosis (hardening of the arteries.) (Source: May, 2003 American Association of Clinical Endocrinologists 12th Annual Meeting and Clinical Congress)
• Even when TSH levels are normal, if a patient tests positive for thyroid antibodies, treatment with thyroid hormone replacement may prevent full-blown hypothyroidism (Source: Thyroid, 2001 Mar;11(3):249-55, "One-year prophylactic treatment of euthyroid Hashimoto's thyroiditis patients with levothyroxine: is there a benefit?"
http://thyroid.about.com/cs/hashimot...ubclinical.htm

Preventive Services Task Force (USPSTF) concludes the evidence is insufficient to recommend for or against routine screening for thyroid disease in adults. I recommendation The U.S..
The USPSTF found fair evidence that the thyroid stimulating hormone (TSH) test can detect subclinical Summary of Recommendation
thyroid disease in people without symptoms of thyroid dysfunction, but poor evidence that treatment improves clinically important outcomes in adults with screen-detected thyroid disease. Although the yield of screening is greater in certain high-risk groups (eg, postpartum women, people with Down syndrome, and the elderly), the USPSTF found poor evidence that screening these groups leads to clinically important benefits. There is the potential for harm caused by false positive screening tests; however, the magnitude of harm is not known. There is good evidence that over-treatment with levothyroxine occurs in a substantial proportion of patients, but the long-term harmful effects of over-treatment are not known. As a result, the USPSTF could not determine the balance of benefits and harms of screening asymptomatic adults for thyroid disease.
http://www.aafp.org/afp/20040515/usx.html

Recommendations of Other Groups
The American Thyroid Association recommends measuring thyroid function in all adults beginning at age 35 years and every 5 years thereafter, noting that more frequent screening may be appropriate in high-risk or symptomatic individuals.20 The Canadian Task Force on the Periodic Health Examination recommends maintaining a high index of clinical suspicion for nonspecific symptoms consistent with hypothyroidism when examining perimenopausal and postmenopausal women.21 The American College of Physicians recommends screening women older than age 50 with 1 or more general symptoms that could be caused by thyroid disease.22 The American Association of Clinical Endocrinologists recommends TSH measurement in women of childbearing age before pregnancy or during the first trimester.23 The American College of Obstetricians and Gynecologists recommends that physicians be aware of the symptoms and risk factors for postpartum thyroid dysfunction and evaluate patients when indicated.24 The American Academy of Family Physicians recommends against routine thyroid screening in asymptomatic patients younger than age 60.25
http://www.ahrq.gov/clinic/3rduspstf...ecommendations

Sticking Out Our Necks | Issue #65 -- January/February 2003
"We're Patients...Not Lab Values!
________________________________________
from Mary J. Shomon, Author of Living Well With Hypothyroidism, Living Well With Autoimmune Disease, and The Thyroid Diet Success Guide
_
http://thyroid.about.com.

________________________________________
ENDOCRINOLOGISTS SAY TSH NORMAL RANGE IS NOW 0.3 TO 3
MILLIONS MORE HAVE THYROID PROBLEMS UNDER NEW GUIDELINES
________________________________________

According to the American Association of Clinical Endocrinologists (AACE), 1 in 10 Americans - more than the number of Americans with diabetes and cancer combined - suffer from thyroid disease, yet as many as half remain undiagnosed. In order to counteract this lack of awareness and educate the public about the prevalence of thyroid disease, diagnosis, and treatment, in January, AACE continued its annual thyroid awareness campaign. The 2003 campaign, Hiding in Plain Sight: Thyroid Undercover, launched as part of the January 2003 Thyroid Awareness Month.

According to the AACE, until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. The new guidelines narrow the range for acceptable thyroid function, and AACE is now encouraging doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now. AACE estimates that the new guidelines double the number of people who have abnormal thyroid function, bringing the total to 27 million.

AACE made the decision to narrow the range because of data suggesting many people may have low-level thyroid problems that could be improved with treatment and a narrower TSH range will give doctors reason to more carefully consider those patients.

"The prevalence of undiagnosed thyroid disease in the United States is shockingly high - particularly since it is a condition that is easy to diagnose and treat," said Hossein Gharib, MD, FACE, and president of AACE. "The new TSH range from the AACE guidelines gives physicians the information they need to diagnose mild thyroid disease before it can lead to more serious effects on a patient's health - such as elevated cholesterol, heart disease, osteoporosis, infertility, and depression."

COMMENTARY FROM MARY

While it is a dramatic improvement in the awareness of endocrinologists that they are now realizing that the high end of the normal range was not, in fact, normal for most of the population, it's clear they still have a way to go when you read the words of Dr. Gharib, an endocrinologist and president of AACE. Dr. Gharib parrots the official endocrinologist party line when he states that thyroid disease, "is a condition that is easy to diagnose and treat."
This pronouncement contradicts Dr. Gharib's own statement. Until November of 2002, people who had clear symptoms of thyroid disease, but were in the .1 to .3, or 3 to 6 range on the TSH scale, were considered "euthyroid" or normal by almost all endocrinologists and practitioners, and were NOT diagnosed at all, much less easily diagnosed. People who had family histories of thyroid disease, symptoms (including enlarged thyroid, goiter, nodules, etc.) but whose TSH tests were in the low or high end of normal who were testing in these levels were routinely denied treatment, or told that their problems were the result of depression and given antidepressants. This has gone on for decades, as conventional medicine has relied on the TSH test -- often to the exclusion of clinical evidence, symptoms and medical observation -- to make a diagnosis. I would not consider this evidence of "easy to diagnose" -- particularly from the perspective of the millions of patients who have suffered with undiagnosed thyroid disease, not to mention the suffering that resulted from being misdiagnosed with a host of mental or physical ailments by their doctors, and prescribed various drugs, hormones, and other inappropriate treatments.

As for the "easy to treat" component, a survey I just conducted, reported on in this issue, found that more than 50% of respondents reported that they are not satisfied with their thyroid treatment. A Thyroid Foundation of America survey found that more than two-thirds of Graves' disease patients continued to suffer debilitating symptoms after treatment and while "euthyroid." A study published in the February, 2002 issue of the Journal of Clinical Endocrinology and Metabolism found that nearly five percent of Americans suffer from often undiagnosed thyroid disease. And those projections were based on the earlier .5 to 5-6 TSH "normal range." If thyroid disease is so easy to diagnose, why are millions of people undiagnosed?

Perhaps more telling were the results of the groundbreaking Colorado Thyroid Prevalence Study, reported on in the February 2000 issue of the Archives of Internal Medicine, the study found that among patients taking thyroid medication, only 60% were within the normal range of TSH (and again, that was according to the .1 to 5-6 TSH range). The fact that forty percent of patients, a number that translates to millions of Americans, are already taking thyroid hormone and being treated by a doctor but are still not in TSH range indicates that proper treatment is not as easy as Dr. Gharib suggests.

The inadequacy of treatment's ability to relieve symptoms was also addressed in February of 1999 when the February 11, 1999 New England Journal of Medicine published a landmark T3 thyroid drug study that found that the majority of patients studied felt better on a combination of two drugs, including levothyroxine (T4) and T3, and NOT solely levothyroxine/T4 (i.e., Synthroid, Unithroid, or Levoxyl) alone. Levothyroxine alone is the standard treatment.

The AACE has finally moved into the 21st century in terms of its awareness that the outdated TSH reference range needed revisiting, but it's just a first step among many much-needed revisions to the diagnosis and treatment of thyroid disease.
http://www.thyroid-info.com/news/janfeb2003.htm

Leslie

[annelb]

At the seminar a person asked if his TSH of 6.5 should be treated and the doctor said yes. I don't know how low he will treat. He did say that he treated those with normal thyroid panel but elevated antibodies.

Since he looks beyond the TSH for thyroid disease, I hope I can convince him to look beyond CD for gltuen sensitivity.

Nancy, how often were you taking the T3? He mentioned taking T3 5-7 times a day to keep an even level. Compounding pharmacies can make a sustained release forula of T3. This doctor was concerned about consistency of compounded medications.

Thanks for the great references Leslie.
Anne

[NancyM]

I tried 3 doses a day. Beyond that and my reliability at remembering doses is just not that great. I've heard of custom compounding too, for T3. But I just found I didn't really like the way I felt. My doctor even gave me a lot of latitude to experiment.

[canoe]

Hi Anne,

I am taking a compounded T3, Sustained Release, 7.5 mcg, 2 x a day. While I have been treated with T4 medication for > 10 years, I continued to have symptoms, cold, constipation, dry skin, etc. While I definitely improved on the GF diet, all of the symptoms did not go away. Now that
I am on the T3, my energy level has improved and I am feeling warmer. I will be having repeat bloodwork next week, since I have only been on the T3 for 6 weeks. My free T3 level was low (226 pg/dl - nl 230-420pg/dl), even though I was taking medication as directed and staying away from foods which could interfere with absorption, eg. nothing containing calcium within 4 hours of taking medication, taking medication on empty stomach with plenty of water. According to pharmaceutical company's prescribing information, T4 medication is absorbed in the small intestine which leads me to surmise that damage from GS could lead to less than optimal absorption of T4 medication.

T4 medications include Synthroid, Levoxyl, Unithroid, Levothroid - not sure if I have included all of them.

I am really pleased that I have not had any problems with the T3, ie. not excessive sweating, no palpitations, no anxiety, or other symptoms which might be signs of overmedication. I do have Hashimoto's (autoimmune) thyroiditis with a TPO antibody level of ? 1000 (nl <35), and years ago when an antimicrosomal antibody test was done my level was > 25,000, with that normal range being <100. I wonder if all my years of gluten ingestion was a contributing factor.

Marilyn

Leslie, Thanks for the great thyroid information. I have learned a great deal from Mary Shomon's site.

Marilyn

[JudyLV]

I also take a compounded slow release T-3. I can only tolerate 2.5 mcg 3X/day. It does make a difference though. Hopefully as my adrenals continue to heal I will be able to increase this slightly. I also take a T-4 medication. Luckily I have a doctor who has been working with me to fine tune the doses.
--Judy