My Doctor Is an Expert

Published on June 15, 2017

5324 views

He knows there may be other, better and much more likely explanations for my hair loss, my low body temperature, my inability to lose weight, low blood pressure, skin problems, mood swings, low T3/high rT3, iodine deficiency, brittle nails, memory loss, migraines, excessive ear wax, fatigue, carpal tunnel, allergies, lichen sclerosis, elevated LDL, low ferritin, insomnia, DHEA deficiency, erratic cortisol, PMDD, estrogen dominance, PCOS, obesity, vision problems, vertigo, tinnitus, moles, hemorrhoids, constant nausea, menorrhagia, loss of libido, coital pain, inability to labor, long gestation, high birth weight, baby with developmental delays, kidney cysts, cervical cancer, hypoglycemia etc. etc. etc. than a malfunctioning thyroid. He knows this, because he is an expert.

Yes, he is an expert in explaining why all these clinical signs and symptoms are present – and actually normal! According to him, one single cause cannot be at the root of them all. Even if there was a single cause, the thyroid hormone deficiency that I insist I have cannot – CANNOT – be it! Not even with my significantly iodine deficient status now, always and in utero. No. That doesn’t explain a thing.

“Is there anything you DON’T attribute to iodine deficiency???!” he asked with little effort to hide his expertise.

He suggests I am depressed and prescribes antidepressants. Yes, of course, why didn’t I think of that? I need antidepressants.

Antidepressants will cure it all. Even, I suppose, the iodine deficiency? And antidepressants will make my body hair grow back right? – I’ll not shave!

When I lost all my body hair, my doctor suggested this was an advantage, as many women would be delighted to be spared having to shave or wax. Yes, of course, I did a little (imaginary) happy dance around his office when he pointed out my bit of luck. In fact, I was so overcome with gratitude, I plain forgot that having hair might help me keep warm, as I am always frightfully cold.

The Brain Blind Spot – Where Hysteria Rules

I have come to the conclusion that modern medicine must be based on a theory of a Brain Blind Spot. This is the spot in your brain where your Imagined Symptoms and Inexplicable Clinical and Biochemical Signs that Will Not be Diagnosed originate. Since these symptoms affect mainly women, it is likely that the Blind Spot is governed by Hysteria – you know – Greek for Womb Related.

The Brain Blind Spot is 100% unaffected by what goes on in the body, otherwise, blood tests would pick up on it. Basically, the Brain Blind Spot produces pain, fatigue, depression and other spurious ails by itself and for no discernible reason. Luckily, there is one magic pill option; the one medicine, that can enter into the Brain Blind Spot and work its magic. It’s called an antidepressant. Antidepressants are apparently the only medication to reach the Brain Blind Spot.

TSH aka Truly She’s Hysteric

So, when the TSH (aka Truly She’s Hysteric) test falls within range, it is a sure sign that antidepressants are the path to take. Perhaps also weight loss and exercise, which are the other two tools in the expert doctor’s tool box. And these must be insisted upon even if the patient claims she “eats healthily and exercised regularly until crippled by her condition” – because we ALL know, we ALL sin. Until that last bit of chocolate is eliminated from our diets, we cannot claim to be truly healthy.

As an example, I shall again use myself. My doctor, who is an expert, suggested I eat less and exercise more. He’s right, of course. No one weighs more than their calorie intake allows. I just didn’t realize it was considered “normal” as he said, to weigh 84 kg (that’s 185 pounds for you Westerners) on a strict 1200 calorie a day diet. A diet, which is of course low GI, sugar free, organic, gluten free and generally really antisocial and – well – hysteric in the eyes of most people I know

He has two theories, which he has shared with me. First, he suggested that I was lying. This is, of course, the most plausible theory. Because if it were true that I am sustaining obesity on 1200 calories a day, it would suggest there was something awry with my metabolism, which according to the doctor there is not. However, rather crazily, I have actually kept a diary on sparkpeople.com of everything I have eaten since January 2009. I have weighed every morsel and ounce on my trusty kitchen scales and meticulously input it on the computer every day. I can document an average daily calorie intake of 1200. I told him that. I even offered him a printout of the entire 1762 days so he could see exactly what I’d been eating. He declined, and instead, offered another expert opinion: The 84 kilo is a normal weight for someone eating 1200 calories because how much we can eat depends largely on our activity level. So he concluded I must just be really, really inactive.

I should perhaps mention here that I actually walked from my car and to the doctor’s office myself. He didn’t come to my house. I am not bed bound. I still work, have three children, a husband, a home and a pretty normal daily life

In fact, reading on the side of pretty much every packaged food product I have in my house, a “normal” woman should be able to eat 2000 calories a day. Food manufacturers, gyms and government officials that stipulate guidelines are not experts and guidelines are just guidelines. Not facts based on expertise. This is evident. Because according to their calculations, I should be half the weight I am if I were to maintain my weight on 1200 calories.

Did I mention I’m also breastfeeding?

No?

Don’t get me wrong. Although it would be nice to be slimmer, I am not vain. This is not vanity. I simply resent the assumption I meet from the broad public that I must be eating more than the 2000 calories that packaging and national guidelines propose is maintenance sustenance for me at my age, body weight and activity level. Otherwise, I would be slim. That’s the rule. You eat more than “normal” therefore you are overweight. Well, I don’t. And I am.

Luckily, my doctor now agrees. The guidelines are wrong. Calorie needs are individual, he reassures me. My inability to lose weight signifies nothing. He is, after all, the expert. Yet again, he manages to reassure me: There’s nothing abnormal in my weight versus calorie intake.

Of Dragon Tales and Beauty Products

Nor is there anything wrong with my resting pulse of 34. Or my dragon scaled legs. My son actually believed me when I claimed I had come out of a dragon’s egg. Okay, he’s nearly six years old now and has stopped believing it, but I did go through a phase of extreme temper outbursts, so with the coarse, wiry hair and the scaly legs, I couldn’t really blame him.

My doctor says I need better beauty products. You know, shampoo and moisturizers. My mum tells me she was told the same when I was a baby with scaly legs. No baby soft skin on me, so perhaps I did come from a dragon’s egg after all – a dragon that never bothered investing in some really good beauty products.

And What Do the Signs Say?

When I first presented my symptoms to my doctor, I thought the 1200 calorie a day diet, the hair loss, the pulse, the scaly legs and so much else on my list were actually “clinical signs”. My doctor says they’re not. It’s only a clinical sign if it can be verified by him, the expert.

It took me a while, actually, to realize the difference – in doctor speak – between clinical signs, biochemical signs and symptoms.

A clinical sign is one that the doctor can subjectively determine. You know, like a goiter. A biochemical sign is blood, urine, saliva, poo and other bodily excretions tested against laboratory standards, like the Truly She’s Hysteric test (Gold Standard, I hear). The symptoms are how you feel. The debilitating reality of your life that the doctor can’t see, the blood doesn’t tell and which can therefore be brushed aside, ridiculed and given spurious labels and diagnosis depending on the level of expertise of your doctor. Of course, my doctor must prioritize signs over symptoms. It is, after all, more important what he sees, than how I feel. My Brain Blind Spot is playing tricks on me again. I understand that now.

Anyway, enough about me and my symptoms. I’m just so relieved it’s not my thyroid. I hear that thing is a bitch to get right, so it’s nice my symptoms are not thyroid related and can be sorted with antidepressants.

YAY for antidepressants! Three cheers for the cure-all! Hurray for my expert doctor!

Did I mention, antidepressants cause weight gain? Maybe, he forgot about that.

This article was published originally on Hormones Matter in November 2013.

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Hormones Matter Top 100 Articles of 2015

by Chandler Marrs, PhD

Published on January 4, 2016

3223 views

Happy New Year, everyone. We have another remarkable year under our belts. Hormones Matter continues to grow month after month. This year, despite the site being down for a month in September, we had over 815,000 visitors, most staying quite a while to read our articles.

Since inception, we’ve published close to 900 articles, many are read by thousands of readers every month. The hysterectomy and endometriosis articles continue to draw large crowds, demonstrating the great need for information in these areas of women’s health.

Our success is thanks to a fantastic crew of volunteer writers who spend countless hours researching complex medical topics, making connections, identifying unconventional therapeutic opportunities, and bringing to light, what are often, invisible illnesses. Without these incredibly talented and compassionate individuals, Hormones Matter would not exist.

Before we begin the new year in earnest, let us take a moment to thank all of the writers of Hormones Matter.

Thank You Hormones Matter Writers!

Below are the articles and authors who made the top 100 list for 2015. If you haven’t read these articles, it’s time to do so. If you like them, share them and share our site so we can continue to grow. If you were helped by any of our articles, take a moment and send the writer a thank you note.

This year, we thought we’d do something a little different and include the 25 all-time favorite articles on Hormones Matter. Be sure to scroll down to the second table and take a look. The numbers are quite impressive.

Since we are run by volunteers and unfunded, feel free contribute a few dollars to cover the costs of maintaining operations. Crowdfund Hormones Matter. Every dollar helps.

If you’d like to share your health story or join our team of writers: Write for Us.

Hormones Matter Top 100 Articles of 2015

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	50,814
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	47,910
3. Sexual Function after Hysterectomy – WS	28,898
4. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	25,326
5. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	25,048
7. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	22, 868
8. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	11,701
9. Endometriosis: A Husband’s Perspective – Jeremy Bridge Cook	11,626
10. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	11,024
11. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	10,580
12. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	8,494
13. Pill Bleeds are not Periods – Lara Briden	8,440
14. Silent Death – Serotonin Syndrome – Angela Stanton	8,408
15. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	8,374
16. Wide Awake: A Hysterectomy Story – Robin Karr	7,733
17. How Hair Loss Changed My Life – Suki Eleuterio
18. The High Cost of Endometriosis – Philippa Bridge-Cook	7,170
19. Skin Disorders post Gardasil – Chandler Marrs	6,891
20. Essure Sterilization: The Good, the Bad and the Ugly – Margaret Aranda	6,820
21. Love Hurts – Sex with Endometriosis – Rachel Cohen	6,779
22. Dehydration and Salt Deficiency Migraines – Angela Stanton	6,638
23. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	6,445
24. Stop the Metformin Madness – Chandler Marrs	6,400
25. Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions – Chandler Marrs	6,110
26. Endometriosis after Hysterectomy – Rosemary Finnegan	6,093
27. The Reality of Endometriosis in the ER – Rachel Cohen	5,962
28. Mittelschmerz – what should you know – Sergei Avdiushko	5,780
29. Red Raspberry Leaf Tea to Relieve Menstrual Pain – Lisbeth Prifogle	5,586
30. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	5,437
31. Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses – Dorothy Harpley-Garcia	5,414
32. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	5,413
33. Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection? – JMR	5, 228
34. Adenomyosis – Philippa Bridge-Cook	5,022
35. Gardasil: The Controversy Continues – Lisbeth Prifogle	4,809
36. Hyperemesis Gravidarum – Severe Morning Sickness: Are Mitochondria Involved? – Chandler Marrs	4,801
37. Oral Contraceptives, Epigenetics, and Autism – Kim Elizabeth Strifert	4,452
38. High Blood Pressure in Women: Could Progesterone be to Blame? – Chandler Marrs	4,446
39. My Battle with Endometriosis: Hysterectomy at 23 – Samantha Bowick	4,288
40. Thiamine Deficiency Testing: Understanding the Labs – Derrick Lonsdale	4,045
41. My Battle with Endometriosis and Migraines – Angela Kawakami	3,839
42. Tampons with Glyphosate: Underpinnings of Modern Period Problems? – Chandler Marrs	3,835
43. Cipro, Levaquin and Avelox are Chemo Drugs – Lisa Bloomquist	3,792
44. Hysterectomy or Not – Angela’s Endometriosis Update – Angela Kawakami	3,750
45. Warning to Floxies: Beware of New Med for Psoriatic Arthritis – Debra Anderson	3,691
46. DES – The Drug to Prevent Miscarriage Ruins Lives of Millions – DES Daughter	3,655
47. Sphincter of Oddi Dysfunction (SOD) – Brooke Keefer	3,540
48. Progesterone for Peripheral Neuropathy – Chandler Marrs	3,278
49. The Fluoroquinolone Time Bomb – Answers in the Mitochondria – Lisa Bloomquist	3,251
50. Why is PCOS so Common? – Lara Briden	3,211
51. Pregnancy Toes – What Sugar does to Feet – Angela Stanton	2,971
52. Five Half-truths of Hormonal Contraceptives – The Pill, Patch and Ring – Joe Malone	2,834
53. Five Years After Gardasil – Ashley Adair	2,831
54. Bleeding Disorders Overlooked in Women with Heavy Periods – Philippa Bridge Cook	2,826
55. Is Gardasil Mandated in Your State? – Lisbeth Prifogle	2,814
56. Is Prenatal Dexamethasone Safe: The Baby Makers’ Hubris – Chandler Marrs	2,808
57. Porn Brain – A Leading Cause of Erectile Dysfunction – Chandler Marrs	2,792
58. Lupron and Endometriosis – Jordan Davidson	2,752
59. Endometriosis, Adhesions and Physical Therapy – Philippa Bridge-Cook	2,746
60. Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About – Debra Anderson	2,703
61. Are You Vitamin B12 Deficient? – Chandler Marrs	2,635
62. Topamax: The Drug with 9 Lives – Angela Stanton	2,635
63. Cyclic Vomiting Syndrome – Philippa Bridge-Cook	2,622
64. The Endo Diet: Part 1 – Kelsey Chin	2,614
65. Endometriosis and Adhesions – Angela Kawakami	2,544
66. Thyroid Disease Plus Migraines – Nancy Bonk	2,530
67. Is it Endometriosis? – Rosalie Miletich	2,414
68. Hysterectomy, Hormones, and Suicide – Robin Karr	2,412
69. Why I am Backing the Sweetening the Pill Documentary – Laura Wershler	2,321
70. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	2,271
71. How Can Something As Simple As Thiamine Cause So Many Problems? – Derrick Lonsdale	2,456
72. Thyroid Dysfunction with Medication or Vaccine Induced Demyelinating Diseases – Chandler Marrs	2,034
73. Angela’s Endometriosis Post Operative Update – Angela Kawakami	2,017
74. Fluoroquinolone Antibiotics Damage Mitochondria – FDA Does Little – Lisa Bloomquist	1,993
75. Endometriosis and Pregnancy at a Glance – Center for Endometriosis Care	1,969
76. Don’t Take Cipro, Levaquin or Avelox If…. – Lisa Bloomquist	1,960
77. Gardasil Injured – Dollie Duckworth	1,898
78. Fear of Childbirth Prolongs Labor – Elena Perez	1,888
79. Fluoroquinolone Poisoning: A Tale from the Twilight Zone – Kristen Weber	1,883
80. Personal Story: Thyroid Cancer – Myrna Wooders	1,880
81. Recurrent Miscarriage – Philippa Bridge-Cook	1,873
82. Recovering from the Gardasil Vaccine: A Long and Complicated Process – Charlotte Nielsen	1,842
83. Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain – Belinda Wurn	1,818
84. Hormones, Hysterectomy and the Hippocampus – Chandler Marrs	1,777
85. Why Fatigue Matters in Thyroid Disease – Chandler Marrs	1,718
86. How Do You Deal with the Lasting Effects of Endometriosis? – Samantha Bowick	1,697
87. Depression with Endometriosis – Samantha Bowick	1,678
88. Easing Endometriosis Pain and Inflammation with Nutrition – Erin Luyendyk	1,648
89. Anti-NMDAR Encephalitis and Ovarian Teratomas – Chandler Marrs	1,634
90. Autoinflammatory Syndromes Induced by Adjuvants: A Case for PFAPA – Sarah Flynn	1,595
91. Endometriosis Awareness Month: A Wish Noted – Philippa Bridge-Cook	1,513
92. The Role of Androgens in Postmenopausal Women – Sergei Avdiushko	1,477
93. It Wasn’t by Choice: Dysautonomia – Margaret Aranda	1,454
94. Fluoroquinolone Antibiotics Associated with Nervous System Damage – Lisa Bloomquist	1,453
95. Vitamin D3 and Thyroid Health – Susan Rex Ryan	1,439
96. Dealing with Doctors When You Have Undiagnosed Endometriosis -Angela Kawakami	1,439
97. Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health – Luke Fox	1,436
98. Cyclic Vomiting Syndrome and Mitochondrial Dysfunction: Research and Treatments – Philippa Bridge-Cook	1,430
99. Living with Ehlers Danlos is Hell – Debra Anderson	1,420
100. What is Fluoroquinolone Toxicity? – Lisa Bloomquist	1,415

Hormones Matter All-Time Top 25 Articles

Article Title and Author	Reads
1. Post Hysterectomy Skeletal and Anatomical Changes -WS	105,336
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs	99,098
3. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS	70,999
4. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman	40,299
5. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle	39,821
7. Sexual Function after Hysterectomy – WS	35,188
8. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko	31,193
9. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care	24,691
10. Endometriosis: A Husband’s Perspective – Jeremy Bridge-Cook	23,251
11. Skin Disorders post Gardasil – Chandler Marrs	18,105
12. Gardasil: The Controversy Continues – Lisbeth Prifogle	14,174
13. Wide Awake: A Hysterectomy Story – Robin Karr	14,134
14. Endometriosis and Risk of Suicide – Philippa Bridge-Cook	13,836
15. Love Hurts – Sex with Endometriosis – Rachel Cohen	13,782
16. Endometriosis after Hysterectomy – Rosemary Finnegan	13,294
17. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS	13,056
18. Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs	12,901
19. How Hair Loss Changed My Life – Suki Eleuterio	12,835
20. Mittelschmerz – what should you know – Sergei Avdiushko	11,919
21. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield	11,521
22. An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook	10,821
23. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs	10,591
24. Adenomyosis – Philippa Bridge-Cook	10,249
25. I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen	9,826

A Call for Improved Thyroid Treatment Options

by Thyroid Change

Published on February 11, 2014

3478 views

Did you know that there is a controversy regarding the treatment of thyroid disease? Harvard Health estimates that more than 12 million Americans have thyroid disease, many of whom don’t even realize it. Thyroid patients insist that current treatment standards leave too many patients suffering from a lack of diagnosis or ineffective treatment. Both patient populations are left with a diminished quality of life, yet there are few doctors willing to step outside of the current guidelines. In an effort to change this situation a team of patients created ThyroidChange, a nonprofit organization dedicated to improving the treatment of thyroid disease.

What is Thyroid Dysfunction?

The thyroid is a gland in your body which is located at the base of your neck. Go ahead, touch it! Just above your collar bone and just below your “Adam’s apple.” This gland is shaped like a butterfly with two lobes which stretch around your trachea – hence its nickname the butterfly gland. This gland is key to your body’s metabolism. The hormones it secretes kick-start the energy in every cell of your body like a spark plug in your engine or flint to a match. Without appropriate amounts of thyroid hormones, whether too high or too low, the function of your body is greatly impacted. There are over 300 symptoms of insufficient thyroid hormone and they represent dysfunction in every major organ. Thyroid dysfunction is so common that you or someone you know is probably impacted or will be in the future.

Thyroid hormone is a broad term. The thyroid secretes many hormones, but the two most important for this conversation are thyroxine (T4) and triiodothyronine (T3). The pituitary gland located in your brain senses the level of hormones in that area of your brain, and sends out thyroid stimulating hormone (TSH) which excites your thyroid and causes it to release hormones. T3 is used immediately by various cells and T4 is called the storage hormone because it cannot be used by the cells. It is stored to later be converted to the useable and valuable T3. When a patient does not have sufficient levels of T3 in their blood stream, physicians expect a patient’s TSH level to increase, demonstrating the demand for more hormone by the pituitary gland. If a patient’s thyroid is producing too many hormones, the TSH lab value should decrease to tell it to “decelerate” its production.

An individual whose thyroid gland makes too much thyroid hormone is hyperthyroid. Some patients are rendered hyperthyroid due to an autoimmune disease called Graves’. One can also have cancer of the thyroid gland. Treatments for these can vary, but inevitably it leads to a lifetime of hypothyroidism.

One who has insufficient T3 available to their cells is called hypothyroid. The leading cause of insufficient thyroid hormone is the autoimmune disease, Hashimoto’s Thyroiditis. This disease causes one’s own body attacks their thyroid gland making it inefficient.

What is the Current Treatment standard? Why is it Flawed?

The flawed TSH test is used to diagnose and treat individuals. A physician will run the TSH and if the value is above a particular threshold, the physician will declare a patient hypothyroid. The physician will usually prescribe levothyroxine which is synthetic T4. The dosage will be determined by the TSH lab value. Once it hits a number determined by the physician, the patient will be determined as “euthyroid” or “good as new.”

How many disorders are you aware of that have one lab test and one prescribed treatment? Even though there is research demonstrating that the TSH lab test is flawed and that there are alternative treatments to effectively treat thyroid disease, thyroid patients have difficulty accessing these research-proven methods. We have not even begun to discuss that a majority of hypothyroidism is caused by an autoimmune disease that is seen as insignificant and is not necessarily tested for when a patient is being treated for the resulting hormone imbalance.

What is the Change Being Sought by Thyroid Patients?

One can plainly see that current treatments are solely based on T4 substitution and the ability of an individual’s body to convert the prescribed hormone to the active hormone T3. Patient experience shows that if a patient continues to complain about lingering symptoms, physicians focus on current guidelines which promote the flawed TSH lab value instead of drawing additional labs. This further testing may well demonstrate that a patient is lacking the necessary T3 to function properly, but as so few physicians are willing to perform this, many patients continue to suffer.

In a person with low Free T3, raising T4 doses will not alleviate symptoms. These patients are often prescribed drugs such as antidepressants and cholesterol-lowering drugs to mask the symptoms of insufficient T3. (If you are on one of these medications, have you had your thyroid tested? If you are on thyroid medication, have you had your Free T3 tested?). Adding medications increases side effects and does not restore balance to the patient’s hormones. Simple blood tests can demonstrate to a physician why symptoms persist after the employment of current treatment guidelines. Tests such as Free T4 and Free T3 can indicate how much Free and useable T4 and T3 are in a person’s bloodstream. These tests in combination with antibody testing can help to shed light on a patient’s persistent symptoms.

As per the current guidelines in the treatment of hypothyroidism, based on TSH testing most patients are sufficiently relieved of their symptoms by T4-only treatment. Those who are not in the majority are left to struggle for a doctor willing to listen and run extended lab tests. Complicating this further, many doctors and patients are not only unaware of additional lab work, but also of the many treatment options that one can use to treat thyroid disease.

Levothyroxine or synthetic T4 will restore health in some patients. There are also various T3-containing treatment options such as natural thyroid extract and synthetic T3 which can be used to supplement or substitute T4 treatment. Each patient is unique. We need to make sure that each patient has access to the treatment approach to best restore his or her health. ThyroidChange is about patients advocating for other patients.

Who is ThyroidChange?

ThyroidChange is a nonprofit organization advocating for the use of extended lab testing (Free T4, Free T3, TSH, Reverse T3 and thyroid antibodies) and access to various treatment options to suit the individual patient. We host a petition to appeal for such changes and this has garnered more than 16,000 signatures worldwide, demonstrating that there is indeed a genuine need for change in thyroid treatment. Our community unites patient advocacy groups in an effort to gain better care for thyroid patients and to raise awareness of this widespread problem. ThyroidChange also aims to work with medical oversight agencies in order to create a unified standard of care for thyroid patients to increase patient access to effective, modern treatment.

Please help this effort by visiting www.ThyroidChange.org to sign the petition and unite for better thyroid care, or contact ThyroidChange to discuss how you can support this initiative.

Gardasil and Thyroid Cancer: A Personal Account

by Danielle Nicosia

Published on January 17, 2013

7151 views

One reads about misdiagnoses in the medical world but no one truly talks of the frustration, relief and anger that follows after a patient finds out they have been misdiagnosed for years. I, for one, understand that feeling and everything that comes with it –this is my story.

I am 27 years old and have been sick for seven years. When I was 20 years-old I blamed my illness on the HPV Gardasil vaccine, which sent me to the hospital after two days of taking the shot. Following that incident, I was in and out of hospitals for years as they tried to find out what I had. The doctors were baffled and didn’t understand why I was having non-epileptic seizures; I experienced sensitivity to light, syncope, sudden loss of consciousness as many as 2 to 3 times an hour, followed by confusion, heart palpitations, extreme fatigue and pain and weakness in my legs. Although doctors did every test in the book, none of them knew what was wrong with me.

In 2008 I met with a neurologist at Winthrop University Hospital. He immediately admitted me for an MRI and CAT scan of my brain. After several weeks in the hospital the neurologist sent me to Long Island Jewish Hospital in New York, where I was admitted for two weeks for monitoring. After weeks spent in multiple hospitals, the doctors explained they couldn’t find the problem and had no concrete diagnosis. I was confused and frustrated; I knew there was something wrong.

The pain continued to increase; I felt pins and needles throughout my entire body and soon I couldn’t feel my feet or be able to stand. If I tried to stand for a few seconds, I would fall. I tried more doctors, but many of them didn’t feel comfortable treating me. Needless to say, I started to give up. I quickly went from walking perfectly fine, to needing a walker, and then being confined to a motorized wheelchair. In such a short amount of time for a young woman, this experience was horrifying. I couldn’t hold a job or go to college since the pain in my legs and feet was excruciating.

After more tests – EMG, CAT scans, MRI’s, and CTA’s – my lumbar puncture test showed I had fluid in my brain. How could this be I wondered.

In 2010 I went to a rheumatologist and he discovered that I had Fibromyalgia and Peripheral Neuropathy. To confirm the diagnosis several excruciating nerve tests were done. It turned out that this disease caused my immobility for many grueling months. The test results concluded I had nerve damage in my legs, which was preventing me to walk.

After years of tests, scans, blood work, and thousands of dollars in hospital bills, this rheumatologist finally understood my diagnosis. Unfortunately, the seizure-like symptoms were still occurring. My entire family and I were ready to give up in the summer of 2010, when I decided to go to Winthrop University Hospital in Mineola, New York to do Hyperbaric treatment. The doctors gave me Hyperbaric Oxygen Therapy, which was a life-changing therapy. The seizure activity lessened as the weeks passed and I finally returned to college. I was feeling better for the first time in many years.

In the summer of 2012 I began to have severe pain in my neck. At this time I didn’t have a regular physician so I found one and discussed my entire health history with him. The physician was extremely concerned so he sent me to see an oncologist right away. The oncologist reviewed my blood work and sent me to an endocrinologist because of the results. I waited several weeks to see the best chief endocrinologist in the area, when finally I felt some hope. I explained all my symptoms to the doctor including the pain in my neck, my weight gain, and my severe fatigue. He diagnosed me with Hypothyroidism. The doctor put me on a low dose of medication (Levothyroxine) and said, “see you in six months.” Hypothyroidism, I found out, is a thyroid disease in which your thyroid gland does not make enough of the thyroid hormone. Weeks later I found out not only did I have Hypothyroidism, I also have Hashimoto’s Thyroiditis which is an autoimmune disease that attacks your thyroid.

Weeks after this diagnosis, I began to have more pain in my neck and was starting to have problems swallowing food and water. At first I thought it was a cold coming on, but as weeks went by it didn’t subside. I returned to the endocrinologist and expressed my concerns but I was told that nothing was wrong and that I was suffering from a cold. I knew that I didn’t have a cold because I had just seen my regular physician who claimed I was healthy. The endocrinologist wouldn’t issue me a sonogram for my neck, so I called my oncologist who wrote me a script that same day.

In July 2012, I had a complete sonogram done of my neck at the Woman’s Breast Imaging Center located in Garden City, New York. That day turned into a four hour appointment, which was uncomfortable to say the least, especially since following my sonogram I had to be issued a biopsy. Hearing biopsy for the first time in my life was yet another horrifying experience. I remember sitting up on the examination table, crying as my cousin and mother tried to calm me down.

Several days later I received a call from the doctor in the imaging center. I knew right then and there, something had to be wrong. The doctor said my name, then paused. My heart skipped a beat as I waited for the news. “Danielle, you have Thyroid Cancer,” he said. “You need to be seen immediately at a cancer center to treat the two tumors in your body.” Tears streamed down my face. I couldn’t comprehend the words that were just said to me—I have cancer?

I realized then that the endocrinologist not only misdiagnosed me but didn’t pay attention to me when I was in pain. He brushed my symptoms and my concerns off as if I didn’t matter. Needless to say, I was livid.

Two days later I got a formal apology from the endocrinologist. I was shocked and impressed that he called. He apologized for misdiagnosing me and told me that if there was anything he could do to let him know. “I assume you do not want to come back to our office, but if you need anything I will be happy to help,” he said. I told him that the one thing he could learn from this is to listen to his patients. He took this advice with an embarrassed silence.

It took me four days to figure out where I should be treated. I was overwhelmed by the words, ‘you have cancer” and understood these three words would change my life completely. After thorough research, I decided to get treated at Memorial Sloan Kettering Cancer Center located in New York City. I had an amazing surgeon who did a total thyroidectomy and removed several lymph nodes that were cancerous. In December 2012, I started my treatment, which included Radioactive Iodine because of the spread. I had to be put in isolation for a few days because I was radioactive. While the experience was scary and unnerving, I owe a big thank you to my amazing surgeon and to my wonderful doctors at Memorial Sloan Kettering for saving my life. It was a relief knowing that my doctors had my best interest in mind.

Knowing something was wrong with my body when the world kept telling me otherwise was a lonely and frustrating–especially for seven years. Although the time was tough, it also taught me that I had to become an advocate for myself. Not only did the diagnosis of Papillary Carcinoma Thyroid Cancer change my life, but the journey itself did as well. I learned to trust my instincts, and that I am stronger mentally, physically and psychologically than I ever thought possible.

PLEASE GET YOUR NECK CHECKED!!

Below are resources that help those suffering of Thyroid Cancer:

1. Thyroid Cancer Survivors Association- http://thyca.org

2. Light of Life Foundation – http://www.checkyourneck.com

3. Follow Danielle’s Journey: http://findinghopewiththyca.blogspot.com

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From Chrysalis to Butterfly: My Thyroid Journey

by Sarah Downing

Published on September 20, 2012

2703 views

Change is something that we fear
And yet we’re happy when it’s here
It may rob you of all that’s dear
But is often more positive than it may appear

Progress is another game
That’s just change by another name
If we open up our heart and mind
We’ll know treasures of a different kind

The word change is often something that people tend to shy away from, partly because it carries an air of uncertainty, but also because it is associated with a great deal of hard work! Sometimes we know that change has to come and that we have to proactively change something and in such cases we may feel as if we hold the reins, but there are also times when change is thrust upon us and it is up to us what we make of it.

We may struggle to accept the fact that we are capable of adapting to many different situations because, as I wrote above, change scares us. But sometimes it can help us to reap unexpected rewards. In the case of many of the people reading this (myself included), change was thrust upon us in the form of a chronic illness: thyroid disease. Many of us were uncertain what we were dealing with upon our diagnosis and once we were finally diagnosed we were angry and resisted this change – Why me? This isn’t fair! What now?

But when we get sick we have to go through a period of acceptance and realize that we have been presented with a challenge to overcome, whether we like it or not. While faced with these uncertainties and fears, it is okay to mourn the passing of our good health and it is also alright to be emotional and angry – in fact, letting out our emotions and possibly talking to others in the same situation can help us to move on and proactively tackle the life cards we have been dealt. Chronic illness is definitely about acceptance and it’s all about redefining what “getting better” means to you because sometimes it is about the acceptance of realizing that when you are better you may still be changed and different, but learning to live with this and love yourself regardless.

As you will know, the thyroid resembles the shape of a butterfly and, like a chrysalis chronic illness, forces us to go through a transformation. Make no mistake: There will be roadblocks along the way. There will be times when you stumble and fall and feel like you are never going to get up again, but you will and you will probably be wiser and stronger for it, as well as better able to deal with the next roadblock that comes along, even if at times those roadblocks start to look awfully familiar!

In my poem above, I doubt that any of us would agree with the second line – nobody is going to welcome chronic illness with open arms. We’d prefer to tell it to “piss off!”, but down the line some of us will look back and be happy that we have come this far. Many have commented that their diagnosis has improved their life by making them more aware of their health, making them more empathic towards others and allowing them to make a whole host of wonderful friends. Indeed, these points resonate with me, particularly the last one. We moved back to the US in December of 2011 and since that time we’ve been taking the opportunity to meet up with many of my online thyroid friends – it’s been a blast and has meant that we’ve felt a lot less alone than we would have otherwise. Pre thyroid diagnosis I knew little to nothing about health and medicine and now I feel much more in control of my own body, even if it doesn’t always cooperate!

Change is a very emotive word that can come about in a variety of ways. Many people argue that without change there would be no progress and yet others are afraid of the word and avoid it as much as possible. Some people however don’t have this choice and find that change is thrust upon them – through a change in lifestyle due to a necessary move; by splitting up with or losing a loved one; by losing a job and being forced to change careers; by falling ill and having to take time out to recuperate and ultimately re-evalute our life and what we want from it; by discovering an unexpected gift and feeling the need to develop this; by welcoming a new member to our family …

I personally have experienced all these situations and more and the one lesson I have learned time and again is this: it is not about the change itself; it is about one’s attitude to said change and how you deal with it. Positivity and optimism (even when it might seem difficult) can go a long way to turning even the most negative of changes into something positive, albeit at first glance these changes might make us feel as if we are doomed.

Moving, as scary and trepidating as it might seem, particularly if the move is not a voluntary one, can be seen as an opportunity to explore a new place and broaden our horizons. My husband and I lived in Germany for many years, a country where we rarely felt at home, but looking back I believe that the majority of expats (us included) would say that they don’t regret living abroad because it truly broadens your horizons and your intercultural skills.

I can remember splitting up with past partners as I recall the deep pain I experienced by severing that bond, but I personally believe that if a relationship is meant to be both parties will either mutually make the effort to work it out, e.g. through marital counseling, taking a time out and then resuming the relationship or, alternatively, if it is not meant to be, you will move on to a new and more harmonious beginning. When I broke up with one of my exes M, it was an extremely painful time, but looking back it was also liberating because I was forced to come to the painful realization that we were not right together and I was finally liberated to be myself rather than someone he thought he could mold me into. I was ultimately free to go ahead and live my life and eventually meet my husband Corey who truly accepts me for who I am.

When it comes to jobs, about 10 years ago I did an internship in PR and marketing and was unfairly bullied and consequently ended up prematurely quitting my position. I was in a panic as to what would come next and how on earth I was going to drum up enough money to pay my rent in a foreign country. But within just a short time, what seemed a curse had turned into a blessing. During my internship, I had realized that I was a talented translator and so after I left that company that is the career I ended up pursuing and was soon earning many times more than I had been at the poorly paid, exploitative internship and felt much more appreciated and fulfilled.

A few years after that, thyroid disease forced me to slow down and smell the daisies. Since I was a little girl, I’ve had a passion for writing, but in recent years have had trouble coming up with inspiration for things to write about. I realized a long time ago that I like helping others, but how to go about it? When I fell ill, I was given the answer. I was given the opportunity to turn a negative experience into a positive one by sharing my experiences with others in my situation and putting pen to paper was a cathartic and therapeutic experience that taught me about how I was feeling and also enabled me to mentally heal and get past certain blocks that had previously hindered my path.

These are just a few examples of how something that is initially perceived as a negative change can in fact be turned into a positive change and how we have the power in our own hands to do this! It requires us to believe in ourselves and realize that sometimes we have to expect the unexpected. As human beings, we are very skilled at adaptation and transformation – like Andersen’s ugly ducking (who was modeled on himself, by the way), we do have the power to become a shining swan; like Hank Morgan, Mark Twain’s Connecticut Yankee in King Arthur’s Court, we can adapt to the craziest of situations and as a chrysalis we can turn into a butterfly – a thyroid butterfly in all its gorgeous colors! ThyroidChange itself is a prime example of how a few people have the power to inspire others by taking a dream and making it happen. As weak as each of us may feel at times, together we are a powerful resource and support for each other. There is no need for us to accept the status quo because, as others before us have proven, we have the power to change it if we only try.

About the author: A long-time writer and blogger, Sarah was diagnosed with Hashimoto’s thyroiditis in August 2009. This inspired her to use her writing skills to help and encourage others in similar situations. She writes regularly for ThyroidChange.

This article was posted previously on ThyroidChange and re-posted with permission.

The Thyroid-Fluoride Connection

by Magdalena Wszelaki

Published on September 15, 2012

2647 views

The Thyroid Pandemic

Are you one of the 27 million Americans suffering from a thyroid condition? Have you been told that you will have to be on medication for the rest of your life or get treated with a radioactive therapy to destroy your thyroid gland?

There is an increasing amount of disturbing evidence that one of the factors that could be causing the thyroid pandemic is the presence of fluoride in our drinking water. It’s not the only one but it certainly is one of them.

This should not be surprising. According to a 2006 report by the National Research Council of the National Academies, fluoride is “an endocrine disruptor in the broad sense of altering normal endocrine function.” You might have guessed it; the thyroid is part of the endocrine system.
What The Thyroid Does

The thyroid gland produces thyroid hormones, which are needed by every cell in our body. A shortage or excess of thyroid hormones throw us out of whack causing symptoms like interrupted metabolism (weight issues, fatigue), memory loss, depression, anxiety, hair loss, infertility, high blood pressure, constant joint pains and many more.

The thyroid gland binds with iodine to produce one of the thyroid hormones, called T4, also known as an inactive hormones (as it does not do much for us). T4 is then transported to the intestine and the liver where it gets converted to T3, the active hormone that our body is actually using to function properly.

Fluoride’s Interference With Iodine

We are now finding out that fluoride inhibits iodine’s ability to bind with the thyroid gland. This means if we drink water with high amounts of fluoride, our thyroid is interrupted and cannot produce enough T4. Insufficient T4 means insufficient T3. It is also believed that fluoride slows down the conversion of T4 to T3 hormone which could explain why in spite of being on medication like Synthroid many people feel far from well. Again, this could be just one reason amongst many others (such as toxic load of the person, poor diet, chronic stress, etc).

In the case of people with hyperthyroidism (excessive thyroid hormone production) you might think this is a desired outcome to see your thyroid function reduced. Well, not really. People with hyperthyroid are known to have a high level of toxicity from water, food, stress, heavy metals, as well as nutritional deficiency and imbalances. Ingestion of fluoride will make the toxicity and imbalances even worse, it’s therefore key to address the quality of drinking water too.

Even the Government Is Backing Off Fluoride Now

The fact that the U.S. Department of Health and Human Services (DHHS) has announced plans to lower the recommended level of fluoride in drinking water is showing us that the government is finally making the connection between our health, our thyroid and the water we are drinking.
Would I Get Tooth Decay?

Think of it this way: most countries in the world do not add fluoride to their drinking water and they don’t have tooth decay any more larger than we do. In fact, most of the European countries declared addition of fluoride to any food and liquid substances outright illegal. The United States is one of 8 countries in the world that still adds fluoride to its drinking water.
So, What Can I Do?

The truth is: removing fluoride from water is very difficult and expensive as the only commercially available filtration system is reverse osmosis. My recommendation therefore is: do what you can and get a water filter that reduces the amount of fluoride in your drinking water.

This article was contributed by: Magdalena Wszelaki, a Thyroid Diet Coach. Magdalena is a former Hashimoto’s patient, in remission now for a few years. She attributes much of her own, and her clients’ healing to detoxification of the body. She’s currently offering a series of free information about detox and thyroid health on www.ThyroidDetox.com.

Blind Faith, No Longer Blinded: Tales of Thyroid Illness

by Michelle T. Bickford

Published on July 22, 2012

2826 views

At 11-years-old, you hardly understand the complexities of life and the implication of any diagnosis. My doctor told me I had Hashimoto’s Thyroiditis, and that it was insignificant… a pill, every day, and blood tests, every 6 months. Simple. My mother, a pediatric nurse, brought me to the best pediatric endocrinologist in the NYC area. With blind faith, I went about life veiled by ignorance about thyroid disease.

I professed my Hashimoto’s at every medical visit. Yet, it was never considered in any treatments. I was told I was depressed and prescribed anti-depressants. I had irregular periods and was prescribed birth control pills. I had dry hair and told it was from processing and products. My skin was like that of a crocodile. Must be genetics, as I shared so many similar behavioral, mood and medical similarities to my father. I accepted my genetic fate, but never once made the connection to our shared diagnosis of Hashimoto’s. That is, until the Hashimoto’s emerged and demanded recognition.

My doctors called it postpartum depression. I could not seem to manage my moods and anxiety, but I was not depressed. This was my third child and the baby weight was not coming off. Something was wrong, I could feel it in my soul. I was driven to research my disease. Soon, I realized all of my idiosyncrasies were symptoms of my “insignificant” disease and my hormone imbalance was distorting my reality.

In the 24 years since my diagnosis, the field of Endocrinology has improved the treatments of Hashimoto’s and other thyroid conditions, yet my treatment remained the same. I encountered countless others who also had their lives forever shifted due to these “insignificant” disorders, but I also discovered treatment options that alleviated those symptoms. My blind faith that my physician knew best dissolved. My doctor transformed into a human with flawed knowledge of a rapidly changing field, and from the once naive patient emerged a woman who refused to accept this was acceptable.

This shared experience with innumerable thyroid dysfunction patients also suffering from symptoms of a disease, yet labeled with minimizing terms such as depressed, mentally unstable and hypochondriacs. This motivated me to action. If we demonstrate and express our experience, if we grab the ear of our physicians who dedicate their lives to healing us – then I have faith we can change our future and heal the next generation. This new found faith inspired me to write, “Endocrinologists: Patients with Thyroid Dysfunction Demand Better Treatment.”

This international petition amassed over 3600 signatures from over 65 countries. It inspired, Denise Rodriguez, an amazing woman with a different, yet similar, thyroid journey, to shape and mold my raw petition into the amazing movement it is today (a little less than 3 months later). We just launched ThyroidChange™, a web-based initiative, to unite the voice of thyroid patients worldwide.

Hormones matter! I have faith that our voices, when strengthened with worldwide support, can change the future of thyroid care. Please join us on our journey.

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