A grass-roots campaign has been started by thyroid patients after the glorious AACE comment that “the TSH is best in most cases”. From ThyroidChange:
THYROID FRIENDS, TELL THE PROMOTERS OF TSH TESTING AND LEVOTHYROXINE (T4) TREATMENT WHAT YOU THINK!!!
PLEASE tell the ATA and AACE how YOU feel about their treatment guidelines that encourage TSH only testing and treatment with Levothyroxine (T4) only.
WE NEED CHANGE NOW!
Please write something that explains how their emphasis on the TSH test and Levothyroxine (T4) only treatment has impacted your life and health. Write as LITTLE or AS MUCH as you want. JUST WRITE!
Tell these organizations the consequences of their guidelines.
The way to do this is to post your comment on the first link and then copy & paste it on the other 3 links:
ATA FB post regarding their 2012 guidelines:https://www.facebook.com/ThyroidAssociation/posts/228435853958522
ATA main wall:
https://www.facebook.com/ThyroidAssociation
AACE FB post regarding TSH supremacy:
https://www.facebook.com/TheAACE/posts/757086797712215?comment_id=2587944¬if_t=like
AACE main wall:
https://www.facebook.com/TheAACE
POST THE COMMENT YOU MADE ON ANY OF THE ABOVE…also as a comment below. Let’s share what we are posting.
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SEND A VISUAL MESSAGE THAT YOU WANT THIS THYROID TREATMENT MADNESS TO STOP!!
See the new campaign here: flatsttm.com Just have a photo taken of you in front of some kind of landmark where you live, holding your STOP THE THYROID MADNESS sign!
You can also add under the STTM name: THE TSH LAB TEST FAILS US! Or T4-ONLY IS NOT THE BEST TREATMENT!! Or I SUFFERED BECAUSE OF THE TSH LAB TEST AND T4-ONLY. etc
Important notes: All the information on this website is copyrighted. STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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11 Responses to “Speak your truth to the American Association of Clinical Endocrinology (AACE)!”
Anthony Castiglia
What effect does thyroid antibodies have on Free T3 reverse T3 ratio ?
Jo Mesh
DeAnn,
I too am a nurse and live in the Midwest I had thyrodectomy in Oct 2013 due to huge tumors. I worked many hours in recovery and never thought that I would have any complications post surgery.
My body is going through something bad I am basically on bed rest and the Docs tell me oh your Ca and TSH numbers are fine this is all in your head. I would love to talk to you about the Endo that you have I don’t mind driving down there to visit her.
Thank you very much,
Jo
DeAnna
I’m an RN in Texas. I am 35 y/o. Sadly, working as a first asst when I was 22 right out of school in gen surgery, I assisted in tons of thyroidectomies – it was my fave surgery because of the anatomy. I now feel so bad for those patients & pray they have found help outside of that “lifetime 1 tiny pill” lie. I switched to plastic surgery after 2 yrs and then left after 10 to pursue my own business. I have fired 3 Endos in my lifetime for sounding about as smart as a tree stump. My fave line was given by TWO different ones – “yes but even after removing the thyroid, there are invisible CELLS left over to convert T4 to T3…” HUH? I feel Endos should really stick to what they advertise only – Diabetes. I was born with a goiter (strong maternal hx/o thyroid cancers dating back to my great great grandmother. Of course the small town surgeon removed my entire thyroid for a GOITER when I was a baby. Seriously! What I would give to even have a rabbit’s thyroid. 🙂 Hey they can transplant an entire limb or FACE but not a tiny butterfly gland. My mother still feels guilty but she was so terrified I would end up with thyroid cancer too – back then that was the treatment – removal for a benign tumor – ugh makes absolutely NO sense. Majority of my family – mom, gm, great gm etc have all had partial thyroidectomies with the exception of my mom who also was unlucky to receive radiation (which sadly she was later told by MD Anderson was most likely what caused her first breast cancer – she’s had 3 cancers total and last year’s Her-2Neu was the most aggressive & now I’m finding out most likely caused by the very rx MDA gave her for 5 yrs & she’s only 62). Anyways, I was put on Synthcrap for 25+ years. I felt miserable but my symptoms were too “vague” and general & my weight only fluctuated about 10 lbs off and on which was prob fluid but that worthless TSH was always NORMAL. I am NOT a lab number. But yet this very Endo Society has even changed their range more times than I can count since they “invented” the TSH in 1973. Growing up, I felt fine until my hormones hit early at 11 – I was put on every anti-depressant during my teen years and during nursing school for anxiety and insomnia “because those can be symptoms of depression”. I started researching more natural medicine when my internist put me on adult ADD meds. Ironic docs preach to patients that increasing any thyroid med and/or using NT can kill you from a heart attack but they think nothing of handing out very dangerous ADD rx’s (highest dose eventually) like candy & that made me feel like I was having a heart attack for real but I sure did get my house and office organized. I remember when I first received Janie’s first book in the mail. I read the entire book that first night and cried the entire time. I felt I had finally found someone who understood ME. After yrs of traveling for holistic care, I’ve finally found an internist by my house (ref from a friend’s rec on the yahoo blog) to LISTEN and he faithfully follows Janie’s blog – he even directed me to stay updated on the blog! I have found amazing friends from the yahoo group even though I have never physically met them – everyone willingly listens and helps you & vice versa. Prayers work and we need to all work together to make a change. Janie has made this very reason her LIFE and she has helped so many people I’m sure it’s astounding to recall. Power in numbers!! xoxo
Amanda
I had to self medicate also,after 10+ years of losing my life to the point of being 31 and having to use a walker and have less mobility than my 94 year old grand mother. The background: Not only have I had a overnight sleep study saying I have clinical insomnia from a physical illness. During that time I had bells palsy and I didn’t have hep or shingles causing it. I then was diagnosed with rotator cuff tendonitis after spending 2-3 year in bed? Another misdiagnosis which leaves thyroid as often tendonitis is misdiagnosed instead of the underlying thyroid disorder. I had been diagnosed with SAD in the past and had to use light therapy, but it stooped working and its now very well known to be a result of a underlying and untreated hypothyroid disorder. It only stopped working because Insomnia that lasted 3 years set in. Its really amazing to go from sleeping all the time to not sleeping at all, and getting diagnosed with clinical insomnia by a mayo clinic doctor, teaching here in Stoon. He was furious my thyroid hadn’t be titrated as he was aware TSH isn’t the end all be all. Which the Guyton and Hall Textbook of medical physiology sites: After 4-6 years of a thyroid disorder going untreated an insomnia will set in and get worse and will not go away and will not respond to sleep medications until the thyroid disorder is titrated properly. I started buying the medication online and within 2 months never had either of these problems with sleep or sad ever again. That was 2 years ago. I lived with it for almost 10. Thank god for finding this site. After bring my medical texts to my doc, he realized his mistakes. 100mg Synthroid only took me so far and when my doc switched me to Natural Dessicated Thyroid it helped much more plus its actually gluten free. I now just take cytomel as per a hormone specialists request and I have my life back, I feel like i did before I got sick. In under 2 years went from to sick to stand without fainting and throwing up, to functioning like a person whose 31. In the 12+ years of this battle because my tsh was ALWAYS normal except 1 time. I lost my home, my friends, & years of school down the drain but have the student loan to keep paying on. lost both my degrees, I was only a 1/2 year from finishing both, but to long of a sick leave and I would have to start almost form 2nd year again. I gained over 100lbs of fat and i lost all my lean muscle from body building and gained 100+ pounds. My face is permanently scared from the acne and I modeled before I was ill, it took that from me too. I had most every symptom imaginable but normal TSH. How does an endo lose a 24hour urine sample? After months waiting for the results they left our province, only to be told I must not have provided the sample or I would have been referred to another endo to take it from there. At which time i was gonna have to do the two year wait again. Then another brain dead doctor figured i bumped my head in a car accident hurting my neck and it must be damage from that causing all of that, so i didn’t need a new referral. Seriously? Even after my neurologist said that wasn’t possible. 8 years I wait while I’m told i must be depressed, even tho i never felt depressed but frustrated in how stupid medical practitioners could be. I did the saliva testing from Rocky Mountain labs, great company if your in Canada. my cortisol was .27 all my steroid hormones were low, low iron, low, iodine, and that muscle pain I’m my back wasn’t muscle pain it was my adrenals dying. To bad your TSH tests dont actually show how the thyroid and pituitary and adrenals are actually functioning. knowing my R3T values were by far some of the best way of helping correct this mess along with the use of naltrexone. Once I started feeling better i was sent to a hormone specialist who gave me the steroid hormones that my thyroid disorder depleted, that was the finishing touch after getting my iron and iodine deficiency fixed. I’m finishing writing my book about this ridiculousness so others too can get help here in Canada. Saliva testing was the best way for me to figure out I had a pituitary disorder, it was invaluable to make the connections I needed to. I had little to NO medical support until I had started myself on thyroid meds and was gaining ground the whole time my tsh stayed normal. My doc was fearful and gave me a standing order to make sure i didn’t do damage.
Adrienne
I was on synthroid both brand name or levo for 10 years my labs were always normal but I still felt all the hypo side effects. I switched docs until the last doc said to me on first visit after hearing my voice not reading my labs said well let’s try you on something different. He put me on Armour. It has been 5 months I felt better within the first week. I still feel better. The change was amazing! My thinking is clearer, my fatigue is 80% better, so many people I know on levo tell me they are unhappy with it even though the lab tests say normal.
cyndi phillips
If I went by the guidelines I’d not be on any medication at all. Tsh is a bad test and misses many people who have an underactive thyroid. I tried levothyroxin and it made me very sick. I put myself on natural dessicated thyroid and I’m much better. My current endo won’t give me enough of it so I have to supplement with extra on my own. He goes by numbers, uses useless tests like the TSH and total T4. You all need to wake up and look at our symptoms and not test results. And now my mother is suffering, hair falling out and so tired. Her docs say her thyroid is fine when it’s not and she won’t do what I did and self medicate. It was the best thing I could ever have done for myself. I missed out on many decades of life because of this!
Michelle
I have been on Synthroid since my early 20’s (58 now) and I have to say that my quality of life has steadily decreased on this medication. But because the TSH test was always “normal” no further action was taken by the many doctors I’ve seen over the years. I continued to suffer with weight gain, low energy, dry itchy skin, constipation and many other symptoms. But I was “normal.” It’s too bad the doctors are so deep in the pharmaceutical pockets and no longer treat the patient. Instead of discovering the reason for the problem they just want to give you a pill to mask it. I have found a doctor that would prescribe NDT for me but he’s not familiar with it and now wants me to see an endocrinologist. On NDT I am finally beginning to feel somewhat myself but still suffer with issues. I suspect fatigued glands from the years of Synthroid. PLEASE Doctors, listen to your patients. Noone knows their body better than the patient. Not even YOU.
Jaime Spurlock Cegielski
The TSH and its “normal” ranges I strongly believe now more than ever before has robbed me of many years of any enjoyment and happiness in my life, I believe I had the beginning of Hashimoto’s disease long before any symptoms surfaced that were strong enough to affect my quality of life. If I had been tested for thyroglobulin antibodies beginning when I was 30 ( I test I had never even heard of until 2005 and from a nurse practitioner ob/ gyn, YES a nurse practitioner , NOT an endocrinologist ) I more than likely would have tested positive and treatment would’ve been started. But , nope, in the name of $$$$$$$$$$$$$$$ the TSH has to rule, but at the expense of how many lives we don’t even know where to start. And you mainstream doctors, endocrinologists in particular, claim the internet is dangerous for researching medical advice and you tell us not to take advice from it? Let me tell you something, it took the power of the internet for me to be where I am today, happy and living my life again. The TSH lab should be outlawed and you should hang your heads in SHAME!!
Janie
Janie’s second comment on AACE:
From Janie Bowthorpe, whose website http://www.stopthethyroidmadness.com comes from an “angry place” (the latter as stated by another Endocrinologist):
For twenty years, I lead a miserably compromised life thanks to one Endocrinologist after another who declared I was normal simply because an ink spot on a piece of paper said so.
I had muscle biopsy I never needed. I participated in painful tests I never needed. I wore a heart monitor I never needed. I took various medications which I never needed. I was put on a anti-depressant which not only made me worse, but I never needed. I was finally forced to begin the process of Social Security Disability…of which I never needed.
I went through emotional and physical AGONY which I never needed.
And all the above was due to a “normal” TSH and a medication which never worked: Synthroid and later Levoxyl.
And though we have different stories, millions of patients have endured their own degree and kind of agony/maltreatment/needless suffering/lowered quality of life/nightmare thanks to the dark ages belief that a pituitary hormone lab test is “the best in most cases”, or that only one of five hormones is somehow going to magically equal what five could be doing.
LISTEN TO PATIENTS. https://stopthethyroidmadness.com/give-me-a-break
Janie
Janie’s first comment on AACE: May I introduce just five of NUMEROUS similarly-stated comments made by medical school trained colleagues about the the inane thought that the TSH “is the best in most cases”:
1) In response to Dr. Weetman, David Derry M.D., Ph.D., a thyroid expert and researcher, based in Victoria, British Columbia, responded, saying:
“Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions.”
2) Paraphrased by Dr. Richard Shames, author of the book ‘Thyroid Power’: Patients are tyrannized by this one test, and doctors who rely upon it often withhold effective medication.
3) From Dr. Steven Hotze in Houston: “Many AACE members are guilty of ruining the lives of millions of women whose hypothyroid conditions they leave untreated.”
4) “We submit these ideas hoping that others will join us in re-evaluating thyroid treatment when maladaptive hypothyroidism occurs during weight loss attempts. Clinicians must use clinical skills and patient-centered concerns in the optimum evaluation and treatment of their patients and not succumb to blindly following an arbitrary system of defined normal lab values in making therapeutic decisions that greatly affect the well-being of their patients.” Carol Rowsemitt, PhD, RN, FNP and Thomas Najarian, MD
5) June 2010 International Journal of Clinical Practice by Dr. O’Reilly: “The use of the TSH measurement to assess thyroid status in patients on thyroxine (Synthroid) replacement could be considered a classic example of the misapplication of a laboratory test.”
Peter Sandblad
“Six years after their consensus decision (to measure TSH) Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions.”
Before desiccated natural thyroid come in use neurasthenia was a common diagnosis fore similar conditions. Something to closer investigate?
(From Janie: I have no doubt that both the Fibro and CFS designations were made by doctors who were clueless about the problems with T4-only meds and the creation of the TSH lab test.)