synthroid tags

As mentioned in my previous blog post of November 10th, I frequently get emails from doctors all over the world who appreciate the message of patient experience as expressed on Stop the Thyroid Madness, both the revised book and website.  Here is just one more that absolutely blew my mind, as this MD, unlike his ostrich colleagues, keeps his head out of the sand and tells it LIKE IT IS.  Again, I will not be mentioning his name.  The below is exactly as he wrote it to me. Get ready to be both awed and disgusted!

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In the year 1847, a young Hungarian physician named Ignaz Philipp Semmelweis had a practice of Obstetrics which began to grow by leaps and bounds.  Even the Royalty of Hungary began to go to his practice. Why?  Because he had the best outcomes.

When he tried to show his collegues his techniques, they simply made fun of him. As his practice continued to flourish,  his peers brought him before the medical society and censured him for not adhering to the current practice guidelines. 

His crime? Washing his hands before delivering babies.  Physicians were offended to think they should wash their hands, and were especially incensed when he could offer no scientific explanation for his intuitive action.  Yet, this very simple antiseptic procedure meant that his OB patients did not contact puerpeal fever and die. Puerperal fever was common in mid-1800′s and often fatal.

The censureship did him in with depression and his practice ended when he was only 47 years old….not because he couldn’t practice,  but because he literally grieved himself to death watching so many women dying unnecessarily for the sake of  current practice guidelines.

It was not until the 1890′s that his methods were fully recognized,  even though Oliver Wendell Holmes of Boston, Mass. USA had confirmed the contagiousness of peurperal fever, and Louis Pasteur confirmed the theory about germs.

And today, established scientific and medical opinions continue the same ridiculous travesty. 

TSH levels have been set at 0.3-5.1 as normal. Therefore, if your physician screens for thyroid disease and you fall within that range, you are considered normal.  Yet, Gay, JC et. al.,  in the Arch Intern Med 2000: 160: 526-534,  showed that the TSH range was 0.45-2.5 for 95% of general population.

In the J Clin Endrocrino Metab Feb 2002 87:(2)489-499 “Serum TSH,T4, and Thyroid Antibodies”,  Hollowee JG et.al. found that a normal TSH was 0.05-3.0 and was different for Whites, Hispanics, and Blacks.The NHASANES lll study showed the normal TSH to be 0.3-2.5 (95% of normal reference subjects).

As a doctor, I wrote to my pathologist at the lab I use and asked why his lab had not changed the ‘normal’ values. I will give you his reply:

“I am aware of this idea to lower the reference range for TSH.  But there are mixed feelings about this in the medical community, especially with endocrinologists. If, for example,we lowered our reference range for TSH from its current 5.1 to 3.0,  we would go reporting about 7% of TSH results being too high to 30%. The last time I looked into this, which was about two years ago (note: this was written in June 24, 2005,  which puts the date of last looking in 2003), most endocrinologists that I spoke with were concerned that suddenly having many more patients would be considered “abnormal” and it would be difficult to manage. They felt it would be best to wait until the word spread in the general medical commmunity and literature so that most physicians would be prepared for the inevitable questions from patients and know how to deal with patients suddenly having high TSH’s. On an individual basis, we certainly could give a lower reference range for the TSH, but you should know that this is not the standard practice in the commnity at this time. It may become standard, but right now, it is not.

Thanks, and good luck,
xxx

So there is the problem. Even if TSH alone was used for screening,  the answer will be wrong. Many hypothyroid patients misdiagnosed as ‘normal’  are being done so because if the right change were made, the ‘medical establishment’ would be embarassed. This says to me that the ‘medical establishment’ does not care about the patient as much as they do themselves.

Recap: TSH levels were known to be wrong by 2000. Reconfirmed in 2006. Waited at least 5 years to make change and no change made. Something is wrong with the system. Review Ignaz Philipp Semmelweis story. Nothing has changed in approx. 160 years.

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From Janie:  ABSOLUTELY BRILLIANT!  And of course, informed thyroid patients also know another inane current practice guideline–the use of  Synthroid and other T4-only meds as the “gold standard” of thyroid treatment…in spite of the fact that a huge body of thyroid patients in internet groups ALL OVER THE WORLD report POOR outcomes when on T4-only meds, besides with the TSH, and do much better on natural desiccated thyroid, or even T3, and dosing by symptoms and the free T3.

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FIND THE ABOVE APPALLING??? FIGHT BACK!!!  A publicist has been hired to represent  Stop the Thyroid Madness in getting to the word out to millions who still linger on T4-only meds, or who are considered “normal” thanks to the lousy TSH lab test. But it can’t go on long without your help!! Read about it here.

(Reading this via email notification?  Remember to leave a comment RIGHT on the blog post by clicking on the title of this blog post in your email.)

As thyroid patients, we are continually seeking doctors who understand successful patient experience. It’s not always easy.  So when we do find a good doctor, we’re ecstatic. But little do we know the challenges a good doctor faces!  The following was sent to me by a progressive, open-minded MD, of whose name I have removed to protect him from his own medical board. Be appalled and amazed. I was.

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Janie, it is not infrequent that we are sent messages like this from Pharmacy Benefits Managers. Here is a typical letter with my reply.

Considerations for Your Review

1. Drug Safety Consideration: ARMOUR THYROID Use in Seniors  Our claims record suggests that your older patient is receiving ARMOUR THYROID. Thyroid hormones should be dosed cautiously in seniors due to a potential risk of cardiac effects. Desiccated thyroid products contain variable amounts of T3. T4 and other iodothyronine compounds. Because older patients have a high prevalence of occult
cardiac disease, the Beers criteria generally recommend transition to a safer alternative (e.g.. agents like levothyroxine with more standardized hormone content). Please consider the potential risks versus benefits of therapy for your patient.

Reference(s):
1. Thyroid Agents. In: McEvoy GK, ed. AHFS: Drug Information. Bethesda, MD: American Society of Health-System Pharmacists; 2008:Sec 68:36.04.
2. Pick DM et al. Updating the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults. Archives of Internal Medicine. 2003; 163:2716-2724.
3. Semla TP et al. Geriatric Dosage Handbook. 13th ed. Hudson, OH: Lexi-Comp; 2007.

(And this brilliant doctor’s reply:)

Dear  xxxxxxx

Re: Armour Thyroid Products

I invite your attention to the P.I. (product information) in the PDR on levothyroxine (Synthroid). I quote:  PRECAUTIONS “Patients with underlying cardiovascular disease—Exercise caution when administering levothyroxine to patients with cardiovascular disorders and to the elderly in whom there is an increased risk of occult cardiac disease.”

DOSAGE AND ADMINISTRATION

“Caution should be exercised when administering SYNTHROID to patients with underlying cardiovascular disease, to the elderly, and to those with concomitant adrenal insufficiency (see PRECAUTIONS).”

I read your statement that says, “Desiccated thyroid products contain variable amounts of T3 and T4 and other idothyronine compounds.”  Forest Pharmaceuticals has stated their product is standardized as published in the PDR: “ One (1) grain or 60 mg of Armour contains by assay 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3).” I do not ever remember Armour Thyroid ever being recalled for stability or lack of standardization.

However, Synthroid and the other forms of levothyroxine have had significant problems.

SYNTHROID AND OTHER T4 PRODUCTS were subject to FDA NOTICE in the FEDERAL REGISTER: AUGUST 14, 1997 (VOL 62, NUMBER 157). These were the drugs that were not well standardized and were not stable. I quote from the report: “Some of the problems reported were the result of switching brands. However, other adverse events occurred when patients received a refill of a product on which they had been previously stable, indicating a lack of consistency in stability, potency, and bioavailability between different lots of tablets from the same manufacturer.”

Thank you for caring for the health of the patients receiving medications from your company. I request that you check your facts fully before issuing such flyers.

Respectfully,

xxxxxxxxx, M.D.

Cc: FOREST PHARMACEUTICALS

BRAVO TO THIS DOCTOR in the face of complete ignorance!!

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STTM HAS HIRED A PUBLICIST and YOUR HELP IS NEEDED!

Do you value what Stop the Thyroid Madness has given you??  Something has to be done to reach millions of individuals still lingering without a diagnosis due to the TSH, or suffering due to being on T4-only meds! You and I run into them DAILY and don’t even know it!  Or we have many family members in the TSH/T4 category. And the media does NOTHING about this scandal.  STTM has hired a publicist, and you can read about it here. But I can’t do this alone. If you value Stop the Thyroid Madness, please considering helping.

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TPA (Thyroid Patient Advocacy) STILL NEEDS YOU TO REGISTER 

Have you registered for the Counterexamples to T4-only?  So far, 1437 have, and Sheila Turner is determined to get that number to over 2000 at least. There were 900 participants on those flawed studies showing that T4/T3 combination worked no better than T4-only, and we have got to prove our point that this is wrong.  All you have to do is answer 3 very short questions.  http://www.tpa-uk.org.uk/register_of_counterexamples.php

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HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.

Below this blog post, you will see my original July 25th post about the potentially harmful thyroid article that appeared in Good Housekeeping magazine’s August issue.

And sadly, though thyroid patients can appreciate even getting a reply by the Editors of Good Housekeeping (which is certainly better than the dead silence thyroid patients got from Oprah Winfrey when they emailed numerous times about this horrific thyroid treatment scandal), we certainly are saddened by the continued poor understanding and false suppositions contained in the reply:

We have read your postings and letters with great interest and are moved by the depth of feeling that underlies them. It is obvious that many of you write out of frustration with your own unresolved symptoms, and we are sympathetic to your ongoing difficulties.

Good Housekeeping’s August 2011 article on thyroid disease describes one woman’s quest to understand her own ambiguous diagnosis. As described in the article, there is a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders — among mainstream physicians as well as those with a more complementary or integrative orientation. We recognize that much of the information on the Internet serves to support patients who haven’t been heard or understood by their own doctors — a terribly disheartening and frustrating experience for anyone. But it is often difficult to discern what’s been scientifically tested and proven versus what is still being explored. That is why this article, like all health articles in GH, drew on research and advice that is evidence-based; typically, such information comes from credentialed doctors working at leading medical and academic centers. A careful reader of our story will see that doctors we consulted acknowledged that low thyroid levels might be treated if a patient has other problems like infertility or depression or if she has Hashimoto antibodies and other factors.

It is our hope that better understanding of the disease will lead to more effective treatment for all. That’s really the goal and the motivation behind all of Good Housekeeping’s health coverage.

We thank you for your valuable feedback and encourage you to continue to send us your thoughts. You can reach us at ghletters@goodhousekeeping.com.

And here is my reply to the Editors of Good Housekeeping:

We, as thyroid patients around the world, do appreciate that you took the time to reply. We have been the recipients of dead silence all too often in our quest to inspire and educate the media about this near 60-year thyroid treatment problem. Thank you.

But there are incorrect observations and assumptions in your reply that need clarification and intelligent re-thinking:

1. This patient-to-patient movement is far more than ‘frustrations with our own unresolved symptoms’.  This is about  hundreds of millions of us worldwide who have been subjected to a brainwashed bias by medical professionals in the use of  T4-only medications and the TSH lab test (both which have left us with lingering hypothyroid symptoms and denied as such by our physicians).
2. What you refer to as “a great deal of controversy surrounding the diagnosis and treatment of low thyroid disorders”  is, in our experience and observation, only within the boundaries of a dogmatically-trained medical profession comprised of those who seem to have lost the art of paying attention to CLEAR symptoms of hypothyroidism with a so-called “normal” TSH lab test or with the use of the laughable “gold standard” of thyroid treatment–T4-only.
3. This is far more than what is “scientifically tested and proven.” Do you REALLY believe that all scientific testing is unbiased and correct??  Do you not understand that much science has been done quite badly, and the results are often in conjunction to whoever or whatever FUNDED the research? Instead, this is about real live and multiple patient experience and outcome–patient experience where lives are changed due to not going by the TSH but by symptoms; where labwork is used as the cart pulled by the horse of symptoms; where desiccated thyroid has been proven to be far more beneficial in the removal of our symptoms than thyroxine ever was or will be…and more. (And here is science that actually underscores our experience).
4. You state that the article “drew on research and advice that is evidence-based.”  And what about the evidence of millions of thyroid patients who have endured multiple and clear hypothyroid symptoms for years before the TSH lab test rose high enough to reveal their obvious hypothyroid state? What about all of us who have suffered for years in our own kind and degree while on T4-only meds like Synthroid, levothyroxine, etc? What about the irrefutable evidence of those whose lives have turned completely around thanks to desiccated thyroid and/or T3, especially after they treated the extreme side effects of being undiagnosed or undertreated all these years thanks to a clueless medical profession?
5. You refer to “credentialed doctors working at leading medical and academic centers” as your source of information: would it shock you to hear that MANY credentialed doctors are the very ones who have kept us completely sick for nearly sixty years??  Ask thyroid patients about all those doctors they saw over the years who were “credentialed”, and your eyes and ears will burn. And what about all the growing body of “credentialed doctors” who now have the courage to state that the TSH lab test is lousy (except for diagnosing hypopituitary), just as is T4-only treatment? They are many!
6. And finally, if your “goal and the motivation behind all of Good Housekeeping’s health coverage” is to find more effective treatment for all, do a follow-up article in an upcoming issue about the scandal of T4-only treatment, the poor use of the TSH lab test (which is measuring a pituitary hormone, not cellular levels of thyroid hormones), the experience of patients worldwide on T4, the experience of patients who lives made a complete turn-around thanks to desiccated thyroid or T3, the experience of patients with “credentialed doctors” who have been nothing more than condescending, ignorant, biased and dogmatically close-minded to our experience and wisdom in our own bodies!

Good Housekeeping do a PATIENT EXPERIENCE article!  Let your readers use their own wisdom about the “mass experience of patients worldwide” vs the “dogmatic, pharmaceutically-brainwashed “opinion” of a several misguided and credentialed medical professionals.”

As informed thyroid patients, we’ve all been talking about it in patient groups, blog posts, and amongst each other.  About.com’s Mary Shomon did a good write up in her blog post, and you can see one of several different Facebook group conversations here as well as the article and our comments after it, here.

And if you haven’t caught up with it all yet, here is a summary of the extremely sad misinformation and implications contained in an article of the latest issue in the Good Housekeeping magazine:

1. that the first step to diagnosing your potential hypothyroid problem is the use of the thyroid-stimulating hormone (TSH) lab test  (a test which informed patients worldwide exclaim has left them either undiagnosed for years or undertreated! http://www.stopthethyroidmadness.com/tsh-why-its-useless)
2. that your TSH may only point to hypothyroidism if it comes back at 10 or higher (Hogwash!! say informed thyroid patients, who have been hypothyroid with a TSH in the two’s! See above.)
3. that the only other tests you may need are the T4 and antibodies  (which informed patients have found is only PART of what you need, which needs to include the very important  free T3!  http://www.stopthethyroidmadness.com/recommended-labwork)
4. that it’s worthy to quote a Dr. Daniels who states ”There’s no compelling evidence that medication helps patients whose TSH is in the 5.0 to 10.0 range,”  (exactly the kind of doctor which nearly all informed thyroid patients state has kept them repeatly sick for years!  http://www.stopthethyroidmadness.com/give-me-a-break )
5. that if you have “other problems”, such as infertility or depression, your doctor might suggest medication (when, oh when, are doctors going to GET IT that depression and infertility are key symptoms of ongoing hypothyroidism!! http://www.stopthethyroidmadness.com/long-and-pathetic )
6. that T4 meds like Synthroid are T4 hormone are the go-to medication (and are the very medications which have kept patients sick, disabled, or with problematic hypothyroid symptoms  for  over 50 years! http://www.stopthethyroidmadness.com/t4-only-meds-dont-work )
7. that the “potency can vary” for desiccated thyroid…as if that’s a good reason to be concerned about its use  (potency is set in a predictable range and is made according to the strict guidance of  the United States Pharmacopeia , say the makers of desiccated thyroid, and desiccated thyroid has been changing lives ten fold for decades!  http://www.stopthethyroidmadness.com/natural-thyroid-101)
8. And last but not least…that you need to be on-guard about online patient information (yet wise and repeated “patient experience” has changed not only patient lives, but the way open-minded doctors are practicing in their own offices!! http://www.stopthethyroidmadness.com/things-we-have-learned 

All the above, appearing in what we all thought would be considered a long-standing good magazine, only underscores the irresponsibility and ignorance of the media about REAL LIFE!! Who wants to subscribe to any magazine, or listen in seriousness to any news program, talk show, or internet website that allows this kind of DARK AGES BALONEY on its pages??  I don’t.

P.S. One particularly personal tragedy is the author of this article, Susan Carlton. She is clearly hypothyroid, yet completely duped by the pharmaceutically-brainwashed medical field which clings blindly to a poor medication and inadequate labwork.  She is ALL OF US LOOKING AT OURSELVES all those years when we believed in the doctors we went to and emptied our pocketbooks to try and find out why we had depression, infertility, rising cholesterol and blood pressure, linger aches and pains, poor stamina and fatigue, weight gain, hair loss, anxiety…and so many more symptoms of undiagnosed or undertreated hypothyroidism. 

And sadly, how many of us also thought that actions similar to “drinking more java (for energy)”, or “honing crossword skills (for focus)” or attending a “spinning class”  (for our weight gain) was going to help us!  They didn’t help at all. They just sent us closer to adrenal dysfunction and disability.

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If you could speak to the author, Susan Carlton, in kindness and wisdom, what would you say to help her get past the brainwashing she is a victim to, as you were??

If you could speak to Good Housekeeping and all media like Oprah, CNN, MSNBC, ABC, FOX, what would you say about the repeated misinformation?