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09-29-2006, 08:43 PM | #1 | ||
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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 |
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09-30-2006, 11:57 AM | #2 | ||
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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. |
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09-30-2006, 01:10 PM | #3 | |||
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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:
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09-30-2006, 04:10 PM | #4 | ||
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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 |
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09-30-2006, 05:03 PM | #5 | ||
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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.
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09-30-2006, 05:09 PM | #6 | ||
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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 |
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10-02-2006, 09:21 AM | #7 | ||
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Junior Member
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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 |
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10-04-2006, 08:02 PM | #8 | ||
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I just read a book that states the standard screening for thyroid function is not very accurate for most people - essentially many people are screened and are "normal" yet actually do have some form of thyroid dysfunction.
The book is The Diet Cure by Julia Ross (might be Julie). It also goes into a bit more detail in that Hashimoto's is an autoimmune disorder where the body is attacking the thyroid! And just like CD, it's is missed by docs b/c they do not do the entire Thyroid panel, just the one Thyroid function test, if you have the thyroid hormone that stimulates the products of the other necessary hormones -- your fine -- but truly you might not be. My mw thinks I need to have my thyroid checked, I've had the basic one done that states it's fine -- now I'm reading, hey, just like CD an entire panel tell the entire picture and is necessary. I'm deciding now if I'm going to try a supplement approach first before I go see a doc, right now I'm taking L-tyrosine which is produced by the thyroid (if memory severs me correctly), anyway, there is a complementary supplement to L-tyrosine that might help with my fatigue and weight by supporting my Thyroid. Since thyroid drugs are safe in pregnancy the supplement should be too. I'm just started researching that one today. |
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10-05-2006, 06:33 PM | #9 | ||
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a possible reason for the epidmic of thyroid problems -koz
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11-17-2007, 09:13 PM | #10 | ||
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Helloall, all summer long I suffered with coldness down to the bone. I wore a coat all summer long and still was cold. I consulted with 5 doctors all saying that my labs were fine. I lost my hair twice from May to September, dry skin, nails, depression, muscle weakness the works. I have been a nurse for 37 years, I know what the symptoms are of thyroid disease. I have all the signs. Well Friday November 9th, I went to see doctor #6 he took one look at me and told me that I was a sick womyn. He said that I have been sick for a long while. He said that I have Wilson's Syndrome. He asked that I take my temp three-four times a day. My temp is 96.8-97.8 My insides are freezing to death. I will have to go on a compounded T3 extended release. I am happy that I have a diagnoses now....... the search is over.
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