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Mary Shomon

Doctors Debate Definition of Low Thyroid While Millions of Hypothyroid Americans Go Undiagnosed

By May 10, 2011

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For years, I've been trying to get the message out to as many people as possible that being told "your thyroid tests were normal" does not mean that you don't have a thyroid problem.

So I'd really like to say kudos and congratulations to writer Marni Jameson for covering such a crucial issue for the thyroid patient community, in an syndicated article that has been picked up by the Los Angeles Times, the Sun Sentinel, and other media outlets!

As Dr. Wartofsky accurately points out in the piece, the controversy over how to diagnose low thyroid / hypothyroidism is not seen as "very serious" by the medical community. But as we thyroid patients are well aware, it has been a hot topic for years, because OUR health and wellbeing are at stake!

As Ms. Jameson points out, the current "standards" for what is considered normal for the thyroid stimulating hormone (TSH) test establish a cut-off of around 4.5 -- and if you are told your thyroid test results are "normal" it will usually be because the results of this particular test came back under that number.

However, many experts agree that levels about 2.5 - 3.0 are indicative of low thyroid or hypothyroidism / an underactive thyroid condition. Still, many people in the debated range are never told of the controversy, even though mild or borderline hypothyroidism can cause weight gain, infertility, fatigue, depression, hair loss, high cholesterol, and a host of other symptoms and health concerns.

More Information

For more information about this controversy, read:

And share your own story in The 0.3 to 3.0 Range or Outdated .5 to 5.0 Range: What's Your Doctor/Lab Using?

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Comments
May 13, 2011 at 7:03 am
(1) Ducklady says:

I nearly died from undiagnosed hypothyroidism. My thyroid test results haven’t changed much since I was in my late twenties, but I was never treated until a physician’s assistant noticed three years ago that, according to the new standards, I am hypothyroid. I didn’t tell her I was planning on killing myself because I could no longer endure the debilitating depression, fatigue and other symptoms that had plagued me for 30 years. Being treated was like rising from the dead.

In that 30 years I had a laundry list of hypothyroid symptoms that were ignored and scoffed at every time I brought them up. I had been diagnosed with the “disease” of major depression and that was that. I was crazy and not to be listened to.

I have been on disability for over 20 years, thanks to this misdiagnosis. Medicare and private insurance has spent hundreds of thousands of dollars on hospitalizations, useless and dangerous drugs, hours and hours of damaging psychotherapy when all that was needed was ten dollars worth of thyroid hormone.

I lost the career for which I spent much time and money in university training and which I loved. I have spent close to a year of my life in mental hospitals with my every thought, word and deed being scrutinized and found wanting. I narrowly escaped having my brains fried with ECT. I have attempted suicide 7 or 8 times, nearly succeeded the last time. Decades of lost income have put my husband and I behind financially and we are entering retirement at a serious economic disadvantage. Thanks to the wonders of digital medical records I am now permanently stigmatized with a mental illness diagnosis which causes some doctors to become quite nasty once they read it.

All because doctors know best, can’t be bothered to listen to their patients and refuse to learn. Thank god for my PA and that ten bucks worth of generic synthroid. I now avoid doctors at all costs and I will never again sit in the same room with a psychiatrist.

May 13, 2011 at 10:18 am
(2) Kay Hettich says:

You might also consider Armour Thyroid, which works noticeably better for some patients. Armour is chemically not the same as Synthroid. It is a natural product made from desiccated pig thyroid. If you contact me through my web site (Recorder and Piano World), I can send you a copy of an article I wrote about the transformation I experienced in switching to Armour. Basically, I am allergic to Synthroid. However, under doctor’s “care,” my continued symptoms were ignored and denied as not endocrinology-related for three and a half years. Mary Shomone’s web site also provided a link to a study published in 1999 in the New England Journal of Medicine. Natural thyroid (T3, T4) excelled and was preferred over a synthetic product (T4 only). Doctors ignore this study.

May 13, 2011 at 2:13 pm
(3) esme says:

give me all info possible thank you

May 18, 2011 at 11:04 am
(4) Marķa Leonor Sarria says:

I have been for 4 months on Syntroid. All syntoms are gone but I think I am allergic to Synthroid because I am begining to have red spots on my skin. I am interested on your article.

Thanks

May 23, 2011 at 7:48 pm
(5) morgan reddan says:

I AM ON SYNTHROID FOR A FEW YEARS & HAVE ACID REFLUX JUST WONDERING IF THIS COULD BE A SIDE EFFECT

May 13, 2011 at 2:12 pm
(6) esme says:

i could totally understand you how are you doing know

May 13, 2011 at 3:08 pm
(7) Yvonne Ardith says:

I have had all those symptoms whenever my tests were done by an endocrinologist relying on TSH level. Guess what??? I have secondary hypothyroid in which the mechanism in the floor of the brain (hypothalamus & pituitary) malfunctions, thereby failing to produce TSH unless thyroid activity is radically depressed. And YES, I’ve been told I “needed a psychiatrist” in spite of already having an excellent one.

If your furnace was not pumping heat last winter, did you just buy a new furnace, or did you consider that the thermostat might be broken? Most doctors today just sell the ‘furnace,’ and ignore the thermostat.

Secondary hypothyroidism is rare and is denied by most endocrinologists. The frequency is about 3% of thyroid patients; 97% is about the frequency of patient results in research publications indicating the problem does NOT exist! The 3% ‘error rate’ is explained away as statistical margin of error, but is more likely the secondary issue.

This denial came about recently with the popularity of “Evidenced-Based Research.” While the name is convincing, it gives false results when test groups are not selected with a homgenous disease. Different causes of hypothyroid are rarely considered when researchers set up their test groups.

Get a doctor who treats your symptoms, not an inappropriate test! They’re out there, but are as rare as secondary hypothyroidism.

May 13, 2011 at 6:34 pm
(8) Denise says:

I suspect the same thing has happened to me. Unfortunately you cant prove it. I wonder how many other people this applies to.

I do not know that thyroid problems were endemic in my family and I wasn’t diagnosed until we had lost everything. I had been trying for years to deal with fatigue, depression and weight problems.

I have found out that that mothers with thyroid problems also have sons with learning difficulties. All I can do is try and make sure future generations of my family are aware of their inheritance.

May 14, 2011 at 12:03 am
(9) Joyce says:

I am so sorry you had to endure this. I also ‘got some of the same treatment’ but had the guts to stand my ground, stop my feet and arm myself with knowledgeble medical professional friends. They supported my, guided me, helped me sort information. I have fibromyaliga/chronic fatigue as well–all my life. So I as used to the ‘all in her head’ theory. Because of the friends, I never got to the severe depression stage. And my Lord was beside me the whole way.
This little stinking throid controls SOOOO much of our minds and bodies–even yet, after decades of knowing, it can pick a day in which to be an issue. I get levels done every 3-4 months. I alter doses every other day–I can tell within about 2 days of a change happening. My voice disappears or comes back.
I also stopped my statins for cholesterol. These altered my levels as well. Experiementing over the last 2 decades makes me trust myself, my pharmacist and then my doctor gets in line. Don’t be afraid to challenge and ask why. With being wacky so much, I ended up seeing an endrochonolgist who said I was doing well there, followed up with tests. BUT all this expense would be NAUGHT if I had not had statins changing things at the same time.

May 18, 2011 at 2:26 pm
(10) Nancy says:

Ducklady! I could have written your entire post, except I did endure 11 ECT treatments in 2009 because I was so depressed and wanted to die. Well, that only scrambled my brain and my short-term memory is never the same. Since 2004 when I had neck/jaw surgery and excruitiating pain for over 2 months, then emergency surgery, I have been so exhausted, horribly depressed, gained a ton of weight, cannot think straight, can hardly keep a train of thought when talking to someone, and on and on. I just read through the symptoms of hypo, but already I cannot remember them.

I am desperate for a dr to find what is wrong with me. I think this thryoid stuff just may be it. Just a few weeks ago I was in to the DR and the PA went over bloodwork. My TSH was 2.39 and she said it was in the normal range, but I tried to bring up what I read on this website and told her I had all the symptoms. She asked me what the symptoms were and I could not remember. So, next time I go in I need to take some paperwork or print outs of articles on this website to back up what I am saying. Throughout the last 7 years I have been through so many tests, procedures, surgeries, and horrible stress from employers and dr’s, nurses, and other dr office staff. I cannot stand them anymore. I hate going to dr appts now and often cancel and reschedule them because I detest them that much. For the last several years I’ve been on 14 medications a day for my various mental illnesses – depression, anxiety, panic attack w/ agoraphobia, ADHD – and my physical illnesses – fibromyalgia, osteoarthritis, inflammatory arthritis, etc.

Lastly, I have no idea how to make friends now when I’m so depressed all the time because of how I feel all the time.

Anyone have any words of advice for me? Thank you for reading this far! God Bless!

August 1, 2011 at 3:18 am
(11) Gracie says:

My story is similar to yours. See my post. I am glad that they found your problem. I understand your frustration.
I never tried suicide but was at that point on several occasions with horrible depression.
Feel free to contact me.

May 13, 2011 at 10:08 am
(12) Cindy Loftus says:

For two years, I experienced fatigue, weight gain, and depression. My thyroid tests were “normal” and I finally had to beg my doctor to send me to an endocrinologist. She performed blood tests and an ultrasound and very shortly, I was diagnosed with stage four follicular variant papillary cancer. Two surgeries and radioiodine later, I am still trying to cope with the idea of a lifetime of screening and bouts of hypothyroidism.

May 13, 2011 at 2:22 pm
(13) Barb says:

I too have suffered from being undermedicated because of the TSH. I got past the first hurdle and got Armour prescribed, but then my dose was cut, and cut again because of the TSH, till I was cold, with brain fog, thin hair, etc. I’ve written a section (click on my name), backed with medical journal references, that patients should be able to share with their doctors about WHY the TSH does not work, so they can hopefully get the treatment they need.

May 15, 2011 at 8:52 am
(14) Tarsha says:

I have had a thyroid problem for 7 yrs. And have been on synthyroid haven’t felt any better since the day i went on it. terrible simptoms very irritable anrgy depressed sad foggy, confuzed can’t concentrait memory problems cold feet hands, hot flashes. Started taking armour thyroid this morning praying it helps I am so sick of feeling this way. Just want to feel good again please help with some feedback

May 18, 2011 at 3:33 am
(15) Jill says:

Hi there, I would really like to know if armour makes you feel better — I’m considering doing the same. regards jill

July 4, 2011 at 3:17 pm
(16) Tarsha says:

Hi I was on two months ago and now i just figured out howto get to this link. If anyone knows anything about armour please let me know i’ve been on it for about month in a half and got checked and was low 7.8 so the dr. said to double up on it so i went from 60 to 120 daily for about a week i started feeling anxious and heart palpatations at night got scared dropped down to one an a half feeling better. I want to do well on this didn’t do well on synthoid please offer some advice.

May 17, 2011 at 12:50 am
(17) jane says:

My story is the same as alot of the ones I’ve just read here; and endured for as many years.
Iam 56.
Why, do so many doctors insist on keeping this many people so ill for so many years refusing to give us better treatment for our thyroid problem when the difference in a brighter and healthier life is just a matter of compassion,diagnosis,correct medication.
I feel like my llife is over’ and I will never be allowed to feel better. I go to a free clinic in Arkansas, so nope of things changing there. I just wish we all had somewhere else to turn
..

August 1, 2011 at 3:15 am
(18) Gracie says:

I had surgery in 1980 due to a nodule on my thyroid. They left me a very tiny piece of my thyroid. For the past 30 years I have suffered depression, hypertension, hairloss, weight gain, memory fog, inabitility to concentrate and many more symptoms. I have been to doctor after doctor telling them that I know it is my low thyroid with zero results.
Now I have Epstein Barr Mono. I almost died in Feb from an allergic reaction to a medication.
I have finally found a doctor who has told me that I have secondary hypothyroidism. I will begin treatment soon.
My hormones were totally messed up and some of my other blood work showed the damages.
I could cry when I realize that I was right all these years and at one point suicidal. Why don’t doctors get it?

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