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Mary Shomon

The American Association of Clinical Endocrinologists 2013 "Thyroid Top Ten" Reworked to Reflect the Patient Reality

By January 9, 2013

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For Thyroid Awareness Month, the American Association of Clinical Endocrinologists (AACE) has put out their "Thyroid Top Ten" list. AACE is never known for being on the cutting-edge, sticking out their necks for patients, thinking outside the box, or making decisions in a timely fashion -- for example, they've spent the last 10+ years trying to figure out whether to adopt the recommended narrower normal reference range for TSH, and are still dithering around about it now, a decade later.

So, you put together the supposedly top minds in endocrinology, and what do they come up with as their "top ten" points?

1. As many as 30 million Americans may be affected by thyroid disorders, although more than half remain undiagnosed.
2. Thyroid disorders are more common amongst women.
3. Thyroid disorders tend to run in families.
4. Fatigue is a common complaint for under and overactive thyroid conditions.
5. TSH testing is the most useful test for thyroid screening.
6. Regular check-ups are the key to successfully managing a malfunctioning thyroid gland.
7. Changing formulations and dosage that affect thyroid hormone levels should be followed by retesting.
8. Do not change your dose of thyroid medication without guidance from your physician.
9. Thyroid conditions in pregnancy warrant close attention.
10. Thyroid cancer is one of the fastest growing cancers in America and one of the most curable.

How about we rework these "Thyroid Top Ten" -- so that they actually reflect the thyroid patient reality?

1. As many as 30 million Americans (60 million, if you use the narrower TSH range that AACE has dithered about for a decade) may be affected by thyroid disorders, although more than half remain undiagnosed. WHY do they remain undiagnosed? Because doctors refuse tests, or because doctors only test TSH and miss out of range Free T4/Free T3, and because doctors refuse to test antibodies to pick up Graves' and Hashimoto's disease, and because doctors tell patients they're stressed, depressed, or need to stop eating and get more exercise, and hand out antidepressants and cholesterol lowering medications instead of doing thyroid tests.

2. Thyroid disorders are more common amongst women. Yes they are. So then why, when a woman complains of fatigue, weight gain, depression, hair loss, or any one of a number of other symptoms, is she more often sent off with a prescription for an antidepressant -- or told it's stress, depression, PMS, or menopause -- than had her thyroid fully investigated by a doctor?

3. Thyroid disorders tend to run in families. Yes they do. Which is why doctors should routinely test the family members of thyroid patients for thyroid disease, and include thyroid history on medical history charts. But they don't.

4. Fatigue is a common complaint for under and overactive thyroid conditions. Yes it is. So is depression. And weight changes. But patients who complain about fatigue are told to get more sleep far more often than they are given a full thyroid evaluation.

5. TSH testing is the most useful test for thyroid screening. This is a dogmatic myth that prevails in endocrinology, but the fact is, the TSH test is fallible, and it does not measure the actual circulating thyroid hormones -- the hormones that do the actual work-- in the body. It also does not detect autoimmune thyroid disease -- an antibody test does. A TRUE thyroid screen includes TSH, Free T4, Free T3 and TSI and/or TPO antibodies.

6. Regular check-ups are the key to successfully managing a malfunctioning thyroid gland. Yes, but it's the quality of those check-ups, and the knowledge of the practitioner that are key. Proper medication, nutrition, lifestyle -- and having a doctor who knows the range of treatment options, how to prescribe them, and how to monitor them -- are the keys to successfully managing a malfunctioning thyroid gland.

7. Changing formulations and dosage that affect thyroid hormone levels should be followed by retesting. Yes. And doctors should provide a lab slip to have that done, and communicate the results to patients by phone with a hard copy of the results by fax or mail. It should not routinely require a visit to come in to the office just to have bloodwork done, and then yet ANOTHER visit to come in to get the results.

8. Do not change your dose of thyroid medication without guidance from your physician. Yes. But doctors should not make patients wait for months for an appointment. And they should not prevent patients from getting well by maintaining a slavish devotion to the TSH reference range, while ignoring Free T4, Free T3, thyroid antibodies, and the concept of optimal treatment, instead of just "normal" levels.

9. Thyroid conditions in pregnancy warrant close attention. Why is it then, that most obstetricians do not know how to manage thyroid disease in pregnancy, and many AACE member endocrinologists don't know how to deal with pregnancy in their thyroid patients?

10. Thyroid cancer is one of the fastest growing cancers in America and one of the most curable. Yes. But it's also preventable in some cases and to some extent, if Hashimoto's patients receive preventative treatment when antibodies begin to rise, and subclinical hypothyroidism is treated -- both of which are controversies to AACE members.

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January 9, 2013 at 6:05 pm
(1) Kierstyn McGregor says:

When I was diagnosed with hypothyroidism the PA that I saw played it off like it wasn’t serious. But it is serious! This is ruining my life. I have no energy. I have gained a ton of weight. I am frustrated, because no one seems to take it seriously. So who do I see? What do I do?

Lucky for me I work in the nutraceutical field I have had some luck with a supplements like GF Thyroid and TMI Thyoid Metabolism + Iodine.. My chiropractor suggested them to help my thyroid. My symptoms are much better. More energy and I am actually losing weight with effort. it used to be it didn’t matter how much effort I put into losing weight it never helped. Although the effects are still there it has made a huge difference. As most thyroid patients know any change in symptom, big or small, is change!

January 15, 2013 at 7:56 am
(2) Lulu says:

When I got pregnant with my first child in 1987, I began to loose weight rapidly. I was skin and bones and all the obstetrician said was, “are you eating?”. When I fell pregnant with my other three children, the same thing happened. I lost weight instead of putting weight on when pregnant and no one ever thought to check my thyroid. I continuously complained of tiredness and was told that it was normal for a mother with small children to be tired all the time. Years went by and in 2005 was diagnosed as having hyperthyroiditis and a 5cm nodule was found on my thyroid. I had an operation but was left with half of my thyroid and last year a cancerous nodule was found on my remaining lobe (1cm) and now have no thyroid and a host of issues to deal with due to being extremely hyper for decades. I’m 47 years old and hope that one day I will feel well but have felt unwell for so long that I don’t remember what it feels like to be well and full of energy. I am 44kg and measure 158cm. People constantly tell me how lucky I am to be thin but they don’t realise why I am thin or how sick I am.

January 15, 2013 at 7:59 am
(3) Paul Patten says:

While the majority of Hashimoto’s occur in women it can also occur in men, and not only older men. If I had not developed a goiter at 22 yrs of age I might still be untreated, because there would be no reason to check for hypothyroidism. It was more than 20 years past my partial thyroidectomy that I was diagnosed as hypothyroid by a P.A. (they do not always miss a correct diagnosis).

January 15, 2013 at 8:05 am
(4) Carol says:

Hello Mary
I would like to reference: if Hashimoto’s patients receive preventative treatment when antibodies begin to rise,
What is this “treatment”? I would like to share it with my Doctor, and of course I would have to thoroughly research/ prove the point, or he will not do it!
Also wondering if you have heard of (or read) “The Marshall Protocol”, that claim to be able to cure any autoimmune disease. I have shared it with my Doctor, who feels there is not enough research that he could find to confirm that did not come back to the site itself. ” (It’s basically a couple of low dose long term meds: An anti hypertensive drug and an antibiotic.
Thank you for all you do for us under heard people with “Autoimmune’s”
Actually one other thing… Shingles! I have just turned 51 and am a grandmother to a beautiful boy who is almost a year old, I am concerned about Shingles, wonder if you have researched this? I am told it’s not covered in Canada untill I believe after age 60 and the waiting list is long and the cost is fairly high. I still want to get it and am trying to push for it as I know personally of a family memeber that suffers every day from contacting shingles (she didn’t have the vaccine ) Thanks again, C.Prindiville

January 15, 2013 at 11:06 am
(5) Sandra says:

I predict that thyroid disease, as with so many ills, will become a craze and then down the road people will begin to realize the real way back to health. The rising phenomenon is the stress of the age – toxic water/air/soil, toxic food, toxic bodies, disruption of normal body processes, pharmaceutical over-intervention with resulting side effects leading to other diseases (since endocrinology is a relatively new field & subject to incomplete understanding of any hormone). Add toxic mental and emotional states into the mix. There is quite a bit of information online about holistic approaches to avoid being on hormone replacement for life which may require major lifestyle, dietary and other changes that most people are not willing to make. Of course, all should be done with the guidance of a physician who is willing to work with you on holistic, natural means of healing. Just one info source: http://www.drlwilson.com/articles/thyroid.htm

January 15, 2013 at 12:57 pm
(6) Sara Ann Brooks says:

I have had hypothyroidism for about 8 years. My swings of energy levels have been astounding. Weight gain was terrible and is STILL my nemesis. I have found one thing that I want to share. WHEN to take that darned pill. In A.M. – I love coffee, so I was fighting the pill by drinking the coffee. I also like to eat breakfast early. So, I started taking it at nite. I slept badly, frequently woke up exhausted (for 18 months). Dr. thought I had sleep apnea. I thought so, too. Never pursued it, money issue at the time, and no insurance. Finally, it dawned on me to stop taking pill at nite. OMG, I started sleeping, with one bathroom break. Unreal. Now, I take the pill during my 3:30 a.m. bathroom break. It sits by my bed. It doesn’t seem to hurt my sleeping until 5. My weight is slowly receding and my energy is SOOO much better. I figure that the pill is finally being fully absorbed!

January 15, 2013 at 7:08 pm
(7) CJ Berg says:

Is there any documentation that supports the statement just made, that Coffee consumption interferes with thyroid medication’s ability to absorb into your system? I would like to read the research. I take my Armour Thyroid early 6:00 a.m. but I also enjoy a cup of coffee delivered to me daily by my sweet hubby. Is that really an issue? New one on me…

January 15, 2013 at 7:32 pm
(8) sue smith says:

I AM SOOOOO angry about the disputed accepted levels for treatment of thyroid disease. I went to a major HMO and started thyroid meds over three years ago when my level was about 4 and my doctor said the meds were raising my blood pressure so she took me off of meds. After treatment for the last five months, I realize, first of all, when my thyroid level is elevated, so is my BLOOD pressure which is actually normal. Also, my next doctor, although I said I was tired and in alot of pain, never put me on thyroid meds till my level was over 6 (treatment should begin when levels are above 1 although blood tests say normal is 3-5.5). I AM SO angry. I got to the point of being crippled. Long story short, after severe vitamin deficiencies and now osterosporisis, my thyroid is finally getting normalized. It was 2 and went back up to 4 and I could NOT keep my eyes open. I had to be my own doctor on all of this. American doctors in their 40′s seem to treat level 1 and above, 3 if there are no symptoms. Wake up America. Same is true with accepted levels for vitamin d deficiencies.

January 16, 2013 at 4:44 pm
(9) M J Spaulding says:

I would just like to say that conditions of the Thyroid need a lot more attention. I have .006 TSH but when I take 120 mg of Armour Thyroid my Free T3 and Free T4 are in the low normal range. We need to hollar loud and clear the need for more research.

Both of my daughters have trouble with their weight but their doctors tell them that their thyroid are okay and I think that they are not.

January 18, 2013 at 1:10 pm
(10) Barb Cavin says:

My Hashimoto’s was triggered when I was 9 years old and now in my early 60′s my antibodies are in the mid 400′s. This has been a life long struggle. I can tell you, Hashimoto’s covers more than just how your thyroid works. I would like to recommend the following book, because it really explains my family. The book is available on Amazon and is “Hypothrodism- Type 2″ by Dr. Mark Starr. Dr. Starr’s theory is that the body can produce adquate thyroid hormone, but the body does not use it correctly. To me this sounds similar to Type 2 Diabetes, ie. where the body produces insulin, but insulin resistance prevents it to be used correctly. I would so like to see this theory addresed by Mary S.

January 21, 2013 at 6:16 pm
(11) LsaMry says:

“OMG” I Cannot Believe Sandra’s comment about Thyroid illnesses becoming a Craze !! I was diagnosed as having bipolar disorder nearly 6yrs ago. After I suffered another meltdown to the point of being hosptalised. As I was so depressed, constantly tired, foggy & dizzy head. Along with all the other symptoms that accompany this “CRAZE” Illness…
Untill the winter of 2010, I thaught someone had invaded my body & mind. I had gained about 4+ stone, Along with swolen legs+feet due to water retention. I was suicidal & put on. Suicide watch in Hospital…
It got so bad that I had to return to my home Town after living away for 8yrs. Now back home I went to my new G.P. was able to diagnose me as being “ABNORMALLY HYPOTHYROIDISM” that I am able to start to understand & read up on what this illness is all about. So Excuse me if I dont buy into a “CRAZE” that nearly ended my life.

January 22, 2013 at 11:25 am
(12) GINA says:

After I had a hysterectomy I was going to the doctor often complaining of migraines. While there I would ask about the lump on my neck/throat. Repeatedly I was told that it appears I have gained a lot of weight recently its probably just fat. I was told this by three different doctors. It wasn’t until I went to the fourth doctor complaining of choking that I actually got a diagnoses. She could see the lump by this time! My thyroid has been removed. I still suffer from migraines on almost a daily basis and believe it is hormonal. Recently I feel like there is something there in my throat again. The choking is back. And i am loosing my hair in handfuls again. So we will see.

January 22, 2013 at 4:26 pm
(13) Clowng says:

Admin you need to remove that highly offensive comment that hypothyroidism is a health “craze”. I went to the doctor because of extreme fatigue. Freezing cold all the time. Cracked heels. Hair falling out. He told me I was depressed. I later went to a 9 News health fair and TSH level was 10. Then the doctor paid attention. My suffering was not enough.

March 15, 2013 at 1:27 pm
(14) Hazel says:

I struggled for 20 years (as did my deceased mother) to get help for the chronic fatigue, cold intolerance, etc. etc. My low tsh prevented treatment, but naturopaths treated me for adrenal and thyroid and it helped. Finally I found a doctor who pays attention to naturopathic literature, and she treated me – also the change in ‘normal’ levels helped. Three endocrinologists, with varying opinions, but the third had the courage to say he was ‘baffled’ about my low tsh, T4 and T3 despite being treated with synthroid and cytomel. He did say carry on with those dosages. Still, they were inconsistent. I convinced my doctor, with my compounding pharmacist guiding her, to try thyroid extract. After several months, my T4 and T3 levels are balancing out, although both still in the lower range of ‘normal’ and strangely the tsh is gradually going up. Another bonus is that the extract is a lot cheaper and results in only one dispensing fee. I’ll stay the course, adjusting as needed with the pharmacist being very helpful and encouraging. I am now 63 and the episodes of extreme fatigue began in my late 30s. Post polio syndrome has been suggested by some doctors, related to other symptoms as well, and I wonder if polio affects the endocrine system. It is so complex, no wonder there is so much disagreement. Anyway, I encourage others to press on and find a compounding pharamacist with knowledge of naturopathic and glandular therapy. Thanks for your information, Mary!

May 4, 2013 at 9:19 pm
(15) Klawilk says:

I have very bad Hashimotos for years my antibodies are over 3000 & the other is over 1000. CNP I see is baffled by high antibody numbers & I feel awful! Hair loss, fatigue, irritable, constipated, dry skin, cold feet, & cant lose weight, the list goes on. Am on Synthroid & Liothyronine but not doing much. Anyone have any suggestions please!

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