Patients Archives - Page 2 of 4 - Stop The Thyroid Madness Skip to content

Tag: Patients

UK’s Royal College of Physicians continues to be deaf, blind and royally dumb.

throwingup1

Funny how things work. I had been wondering what the heck was going on with thyroid patients in the UK after the Royal College of Physicians (RCP) came out with their February 6th guideline stating that 1) thyroxine was the only medication needed for hypothyroidism, 2) “natural” medications were dangerous and 3) the only labs needed are the TSH and T4.

All the above goes totally against the life-changing experience of a growing body of patients.

Equally a part of this B-grade horror movie is the stand taken by the British Thyroid Association (BTA).  Read it. And UK-TPA thyroid patient advocate Sheila Turner began to go through her own hell when her Armour was taken away, which you can read about in the February 20th blog post here.

And suddenly, I get an email from Sheila, informing me that the RCP stand is as bad as it was three months ago for her and other thyroid patients.

Sheila states: This is absolutely unbelievable that out of the hundreds of references we sent to the Royal College of Physicians to show their guideline to be flawed, they have taken no account of one single one of them. They are publishing their previous guidance without one since change. The world has gone mad.

Dear Sheila, Further to my email of 6 April, the comments and materials received by the College have been reviewed. This position statement or guidance (not a guideline) was produced on behalf of the Royal College of Physicians, in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology and Diabetes; the Association for Clinical Biochemistry; the Society for Endocrinology; the British Thyroid Association; the British Thyroid Foundation Patient Support Group and the British Society of Paediatric Endocrinology and Diabetes and is endorsed by The Royal College of General Practitioners. The President has asked me to let you know that this review has not resulted in any changes to that statement.  It should be noted that it is about the treatment of primary hypothyroidism and does not preclude other treatments for exceptional cases by specialist endocrinologists who can make clear to patients any associated risks. References supporting the statement are listed below. Yours sincerely, Catharine Perry Administrator -   Diagnosis and treatment of primary hypothyroidism. BMJ 2009;338:b725 -   Vaidya B, Pearce S. A Clinical Review of the management of hypothyroidism in adults. BMJ 2008;337:a801. This contains references for 35 articles and states that Armour thyroid is of no proved additional benefit to levothyroxine. – The Lancet Volume 363, Issue 9411, Pages 793 – 803, 6 March 2004.  This covers the history, epidemiology, pathophysiology, and clinical diagnosis and management of hypothyroidism and is written by Caroline GP Roberts and Paul Ladenson of Johns Hopkins University School of Medicine, Baltimore, USA.  This review, which references 164 clinical articles, states that the treatment of choice for hypothyroidism is levothyroxine sodium (thyroxine) and does not refer to Armour thyroid. -  Baloch Z, Carayon P, Conte-Devolx B, et al. Laboratory medicine practice guidelines. Laboratory support for the diagnosis and monitoring of thyroid disease.Thyroid 2003;13:3-126. -  Association of Clinical Biochemists BTA, British Thyroid Foundation. UK Guidelines for the use of thyroid function tests. http://acb.org.uk/docs/tftguidelinefinal.pdf -  Surks MI. Ortiz E, Daniels GH, et al. Subclinical thyroid disease: scientific review and guidelines for diagnosis and management. 2004;291:228-238.

And as your peruse the six references above which they use to defend their tunnel-visioned, moronic position, you realize that you, your words, and your positive-outcome experience on desiccated thyroid, as well as the use of far better labs, is about as important within the UK’s latest medical pronouncement as is dirt on the bottom of a rusted bucket in the middle of an empty field in nowhere. Yup.

Or as Harold Shipman stated about the RCP’s guidelines: What a brilliant wheeze.

******************************************

See below on the potential importance of potassium in your health and well-being. And on the May 7th post about the party being over with Forest Pharmaceuticals, comments continue to come in about experiences with the “new” Armour.

1 reply

Getting the facts straight about Dr. Sydney Wolfe, and what YOU can do.

armourbottleWith the recent blog post by health writer Mary Shomon concerning Dr. Sidney Wolfe’s new 4-year term with the FDA’s Drug Safety and Risk Management Advisory Committee, there has been much brooha and fear-mongering on thyroid patient groups.

Why? Well look at it this way. This is a man of stature. He is an MD, an Adjunct Professor of Medicine, the director of Public Citizen’s health research group which promotes drug safety and public health, and editor of the newsletter Worst Pills, Best Pills, and since August of  ’08, a member of the Drug Safety Committee.  He also has a resume a mile long.

Yet in spite of his seemingly caring activism for our health and well-being, and his immense experience and education, he is clearly and completely off-base about Armour and other desiccated thyroid prescription drugs.

For example, as as editor of the Worst Pills, Best Pills newsletter,  Wolfe declared Armour desiccated thyroid as a “Do Not Use” product because it is not adequately guaranteed to provide appropriate blood levels of thyroid hormone and reliable alternatives are available”. (Gee, funny how our experiences are completely otherwise….)

Then in the May 2003 issue (of which you have to have a paid prescription to read), he wrote an article titled  “Do Not Use! Natural or Desiccated Thyroid (ARMOUR THYROID) For Thyroid Hormone Replacement Therapy.” In that article, the clueless Wolfe stated that he supported The American Thyroid Association’s statement “There is no evidence that desiccated thyroid, a biological preparation, has any advantage over synthetic thyroxine.” (I guess millions of us and our improved heartrate, stamina, cholesterol, depression and more…aren’t evidence?)

He then proposes that Armour is mostly prescribed for weight loss, is a niche market for the unscrupulous, and concludes with “if you are offered natural thyroid hormone replacement treatment for any reason, this is a red flag and you should get a second opinion.” In a letter to consumers, Wolfe and Public Citizen state that that T3 is only needed from conversion and is predictably found from conversion, that the T2 and T1 also found in desiccated thyroid has essentially no activity, that desiccated thyroid is an unpredictable mixture, that is has no predictable biological activity…plus so many more complete and total inaccuracies based on “intellectual head chatter” not on observation and experience.

Thud.

Mary Shomon, in 2003, did a bang-up job trying to communicate with Wolfe, Worst Pills, Best Pills, and Public Citizen about the inaccuracies of their beliefs and statements…basically to no avail. The TRUTH is here, and in more detail in Chapters 1 and 2 in the STTM book which are enlightening those reading it all!

So we are left wondering, six years later, what his four-year appointment to this committee will mean. But let’s make a few things quite clear to contrast some of the fears going on and expressed on thyroid groups:

1) Armour is not being banned.
2) Wolfe is one of a current 9 members of this committee. Wolfe is not “the committee”.
3) Wolfe and seven others currently have voting rights. He is the only “Consumer Representative”.
4) There are still six more vacancies.
5) The committee is NOT the power. They simply make recommendations. And historically, the FDA can be slow to act on their recommendations, or doesn’t follow them at all (which is a GOOD thing when it comes to a SAFE and EFFECTIVE medication like desiccated thyroid).

So what can you do? I challenge you to follow and act on the below, which puts our energies into communication, not feeding the ego and power of a misguided man with our overtly expressed fears as if they have actually come to pass :

1) Remember 1-5 above. Armour is fully available. Keep the facts straight, and fear-mongering down.

2) STTM has a powerful and growing page of testimonies of those who switched to desiccated thyroid.  Are you in there? If not, you need to be. This website currently has a huge audience. It’s noticed by doctors all over the world, as is the STTM book, which is YOUR book of YOUR experiences,  which is also being ordered by doctors. Use the Contact Me form at the bottom of that page.

3) Tell your experience with Synthroid or other thyroxine medications at the following websites:  www.rateadrug.com,  www.drugs.com,  www.askapatient.com They don’t include any of the desiccated thyroid meds yet, but you can tell of the negative experiences with all the T4-only drugs, including adrenal fatigue if you fell into that, and all your lingering thyroid symptoms.  The above links will take you to their Synthroid page–you can search for the other T4 meds.  Remember to mention Armour or other desiccated thyroid meds and how they have helped you!! Update: thyroid patient Gina found the drugs.com Armour page: http://www.drugs.com/comments/thyroid-desiccated/armour-thyroid.html

4) Report your T4-only experience to MedWatch, the FDA’s  program for reporting problems.  You will see an Online Reporting Form to download. Don’t fail to mention which problems were removed or greatly improved when you switched to Armour, or the fact that you now have to deal with adrenal fatigue thanks to the inadequacy of T4-only treatment. You can also call 1-800-FDA-1088, but remember: your call is not to draw attention to Wolfe’s opinions! It’s to draw attention to how lousy a treatment T4 is as compared to how much better Armour has been.

5) Go to my article titled Synthroid Sucks: the Rallying Cry of Thyroid Patients vs. Clueless Doctors and comment on this article, including mentioning what Armour, Naturethroid or other desiccated thyroid did for you. Rate it as well. Both keep this article in the media and in the eyes of others.

6) Go to www.medications.com where patients ask questions and YOU can answer, mentioning YOUR experience and how much better desiccated thyroid has been. Clicking on that will take you to the Synthroid patient questions. Answer them. Be careful with links–they may not catch them at first, but will remove them if they do.  You can mention website names, tho, like Stop the Thyroid Madness.

7) Send people here to follow all these steps. Power is in numbers!

8 ) Use the following website to email or write your senators and representatives: http://www.visi.com/juan/congress/ THEY DO READ THEM. And they will remember this!  Here’s a template letter you can use:  www.stopthethyroidmadness.com/template-letter-to-your-senator-or-representive/

If you have other ideas and places to write or call, add your comment to this post. Remember,  put your power in communication! LOTS of communication.

P.S. Did you know that the American Thyroid Association, in cooperation with the American Association of Endocrinologists, together support January as “Thyroid Awareness Month”…which is supported through an unrestricted grant from Abbott Laboratories, the makers of Synthroid?? Major UGH.


2 replies

Thyroid Tidbit: sign the petition for MEDICAL JUSTICE in the UK

petition

Just when we, as thyroid patients, are not only proving the superiority of desiccated thyroid treatment by our changed lives, but are making good tiny steps in educating our doctors, comes a complete nation taking Armour away. Yup, the medical-Brit-authorities-that-be, in all their brilliant ludicrous wisdom, did just that last month, explained here.

And then it was experienced personally by a thyroid patient in the UK on Feb. 20th when her Armour was in fact, taken away.

Below is the heading to the petition, and don’t ya love the final sentence. GOOD FOR TPA-UK!

To:  UK Government Office of Fair Trading We the undersigned petition the Government’s Office of Fair Trading and the European Commission for medical justice in the diagnosis and treatment of patients suffering from the symptoms of hypothyroidism, in spite of current medical practices. The petition is supported by the fact that medical science shows that through a proper application of modern medical and scientific knowledge those responsible for our well-being should be capable of restoring us back to optimal health.

Because of substantial confusion in the endocrinology specialty, patients continue to suffer, and the following lament by Doctors Anthony Toft and Geoffrey Beckett must, once and for all, be put to rest.

It is extraordinary that more than 100 years since the first description of the treatment of hypothyroidism and the current availability of refined diagnostic tests, debate is continuing about its diagnosis and management.

http://www.petitiononline.com/tpauk123/petition.html

**Want to be informed of these blog posts when they appear? Curious what’s on Janie’s mind in her activism for better thyroid treatment? Just go to the Notification on the left and at the bottom of the links.

2 replies

Have you tested your B12? It’s a deficiency thyroid patients need to catch.

Screen Shot 2015-09-14 at 6.23.24 PM(This blog post has been updated to today’s date and time. Enjoy!)

In 2009, I wrote an article titled Ten Reasons You May Still Feel Bad, which is still just as applicable today as you are reading this!  Nearly every hypothyroid patient can have some of those ten problems, and if so, they need to be discovered and corrected.

And one of those issues was low B12.

B12, also called cobalamin, is a water-soluble vitamin which has a key role in cell metabolism of your entire body, giving you energy, sharpness in your brain, and healthy nervous system functioning.

No one is capable of producing enough B12 on their own. You have to get it in your diet, or supplements.  In food, it’s found in most red meats as well as fish and poultry. Liver is especially high! You’ll also find it in eggs and milk products, though it’s less absorbable if the latter has been heated.

And unfortunately, a certain percentage of hypothyroid patients have low levels of this important vitamin.

One main reason that thyroid patients get low is due to the low stomach acid we get from either being undiagnosed or underdosed due to the TSH lab test, or undertreated with T4-only products like Synthroid or levothyroxine.

Hashimotos patients may have inadequate levels due to gluten and the destruction it can cause on the stomach–another reason the majority get off of gluten!

Symptoms of low B12 can vary from person to person, but can include numbness and tingling in your hands or feet,  tremors, poor reflexes, tongue soreness, leg pain, or difficulty walking with balance.   Psychologically, you may have memory issues, confusion, or depression. Young women may have difficulty getting pregnant due to low B12.

When doing lab work, we saw it needed to be in the upper end of the range.

In other words, several of us with mid-range B12 still saw symptoms related to inadequate levels of B12. Getting it up in the upper quarter took those symptoms away.

To correct inadequate levels of B12 in working with our doctors, we used high oral B12 in pill or liquid versions (methylcobalamin is the recommended form of B12 for most; others use the hydroxy version), or B12 cream, or injections by your doctor (especially if you have pernicious anemia). It’s also recommended to increase your consumption of meat and dairy products, which can be rich in B12.

I highly recommend the book Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, R.N. and Jeffrey Stuart, D.O., who are spearheading B12 awareness.

Have high B12? That can be related to the MTHFR mutation

Turns out that a high percentage of folks can have a mutation of the MTHFR gene, which makes it hard to break down B12. To learn more, read the MTHFR page on STTM.

To read more, go here: //www.stopthethyroidmadness.com/b12

JanieSignature SEIZE THE WISDOM

Have you found yourself with low B12? Tell us your symptoms, how you treated it, and how long it took to stop the symptoms.

Want to be notified of these blog posts? Curious what Janie is ranting about this time? Use the Notification on the bottom of this page. 

48 replies

Can you believe what this Endocrinologist said in 1931??

Ever heard of Henry R. Harrower?

He came to the US from England in 1903 at age 20, and with great fortitude and drive, became an MD and Endocrinologist. He had influence in the creation of today’s  professional Endocrine Society.   He also believed (to the consternation of many of his colleagues) in the use of organs to treat conditions, such as Armour desiccated thyroid.

And in 1931, he made the following incredible statement:

“A good laboratory report is cold comfort to a patient whose symptoms remain unchanged, and the doctor can repeat such reports until he is blue in the face, but they will not help his patient much if unaccompanied by controlled symptoms and changed feelings.”

He also stated:

“Are not the feelings of the patients often as clinically valuable as the other findings? In no case can we wholly discount them.”

BRILLIANT!!  BRAVO!! “Cold comfort” couldn’t describe our reaction better when a slew of your modern colleagues have habitually discounted thyroid patient symptoms for decades in favor of ink spots on a piece of paper called “lab results” with dubious “normal ranges”. And we give the same “Bravo” to a growing body of doctors who are making a courageous change in their relationship with patients the last few years by LISTENING to the patient first and foremost.

p.s. Thanks to Stephanie Buist, working to become a naturopath, who posted the first quote above to the Facebook of a mutual friend of ours. You can read more about Harrower here.

How do you feel about what Dr. Harrower said over 100 years ago? How would you rate the Endocrinologists you’ve seen the past few decades as compared to Harrower? Have you had no more than “cold comfort”?

11 replies