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Important information about Cytomel, Dr. Skinner in the UK, and Missy Elliott

ARE YOU ON CYTOMEL? If you haven’t gotten a refill of your Cytomel lately (a synthetic T3-only medication), it’s important that you know that the former makers, King Pharmaceuticals, was bought out by Pfizer Canada, Inc last October 2010. Why is this important? Because as thyroid patient Mare found out the hard way recently, your local pharmacy may think it’s not made anymore, and scare the pants off of you by saying so.

In reality, your local pharmacy needs to contact Pfizer Canada about getting re-stocked.  Says Mare, “The pharmacy’s inaccurate data caused me a great deal of angst this weekend as I was now totally out of the only thing (Cytomel) that’s even remotely made a bit of difference and now they were telling me I couldn’t get it anymore (do we patients always have to do everything ourselves??!!!)”

***Have you had any problems filling your T3? Comment on this blog post and tell us your experience.

WHY WOULD ANYONE BE ON T3-ONLY?? Did you know that if you have too high or too low cortisol levels, and/or low ferritin/low iron, there’s a good chance you may need to be on T3-only for awhile?  Yes, when you have ongoing chronic issues as a thyroid patient, your body will respond by converting the T4 you have to excess Reverse T3.  And excess RT3 will hog-and-clog the very cell receptors that would be receiving T3. Thus, you become hypo all over again.  You can read more about it here. But if you want even more good detail about T3, how this active thyroid hormone helps you,  the causes of RT3, and how to dose T3-only meds, get the Revised STTM book. It’s VERY worth it.

***What brands of T3 you have tried,  what works for you, and what hasn’t worked as well?? Comment on this blog post.

THE CONTINUING SAGA OF DR. SKINNER IN THE UK: If you aren’t aware of the incredibly shocking story of beloved Dr. Gordon Skinner in the UK—a man who dared to prescribe thyroid treatment in lieu of a “normal” TSH lab result (which is a lab test that informed thyroid patient worldwide know is completely bogus)—you can read my 2006 blog post about him here, followed by the 2007 post here.  Also, Sheila of TPA-UK gives detailed information here.

And everyone should know that his General Medical Council (GMC) hearing is coming up:  July 28th and 29th, plus August 1st, 2nd and 3rd.  This is to assess whether further action is needed after his 3 years of conditional practice are now up (as of late last year).  Says a strong supporter of Dr. Skinner (and there are MANY): “Please  let people know that their support is extremely valuable. Dr Skinner has asked for the hearing to be public and the GMC should accommodate everyone.”

***Are you in the UK? Keep us informed by commenting below.

HIP HOP MISSY ELLIOTT HAD RAI FOR HER GRAVES DISEASE: How many informed thyroid patients groan when they hear news like this concerning the use of RAI (radioactive iodine)! Thyroid patients worldwide bemoan the use of Radioactive Iodine treatment because of its potential for immense side effects. And all over the net, we read that’s just what was done to Missy Elliott in her battle with Graves disease aka hyperthyroidism.  See the People Magazine article here.

Says the Atomic Women website:

Rheumatoid arthritis is also an autoimmune disease. But, fortunately, limbs are not being amputated nor radiated.

Diabetes mellitus is also an autoimmune disease. And, fortunately, the pancreas is not being removed or radiated.

What is the point of irradiating and killing thyroid glands, which are fundamental for life?

We, as thyroid patients worldwide, wish the best for Missy. And we hope that if she is like many who eventually become hypothyroid, she will discover and learn from Stop the Thyroid Madness!

***What was your experience with RAI? Post side effects? Let us know by commenting on this blog post!

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Finally! The 2011 REVISED SECOND EDITION of the Stop the Thyroid Madness book!

YEEHAW!!

Three years ago this month, the book Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment came out with quiet fanfare–a complete patient-to-patient book chock full of information based on the successful experience of thyroid patients worldwide.  As the messenger of that information, I had a strong purpose: to create INFORMED patients who can then demand change in their doctors offices. Pro-active patients!  Educated patients!

But the reaction to it wasn’t quiet!

Thyroid patients have reported it was changing their lives.  To date, the STTM book has been sent, and in multiple copies, to Antiqua/ Barbuda, Austria, Australia, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Iceland, Ireland, Israel, Malaysia, New Zealand, Netherlands,  Norway, Singapore, South Africa, Spain, Sweden, Switzerland, Thailand, and the UK. That doesn’t include the high volume amount of copies sent to US patients, doctors, and individuals in all 50 states and Puerto Rico.

Amazingly, yet not surprisingly, patients were discovering new information even a few months after the First Edition was published three years ago.  As a result, Laughing Grape Publishing LLC had to add, and continually update, a bookmark of updated information into all its books ordered directly from the publishing company.

Today, in the REVISED SECOND EDITION, all that extra patient information has been added, plus a LOT more.

  • 36 more pages, by and for patients, plus changes & additions in every single chapter
  • Much more detail on adrenal and HPA dysfunction and how to treat it
  • Recognizing and dealing with Reverse T3
  • Identifying and treating gluten issues as related to Hashimotos disease
  • Iodine-use information in relation to hypothyroid, breast disease, Hashimotos, adrenal dysfunction, etc.
  • More details on labwork preparation, plus what to look for in your results
  • Why you need more than ferritin testing, and details on iron testing
  • Updated information on brands of desiccated thyroid throughout the world, T3-only products, hydrocortisone, and more
  • A completely NEW CHAPTER on supplements & foods which thyroid patients appreciate and use!

And, the price has been kept exactly the same.  Our loss; your gain, in the name of an important movement of needed education and change!

This was NOT an easy book to revise!  I had to go through it with a fine-toothed comb, removing some information, correcting other information, adding a lot more…besides working on making it more readable. I am not a writer by profession. Sometimes I felt like a “cuckoo’s nest mental case”  trying to balance the work on the Revised edition with my other activist responsibilities and a busy private life.  Is it perfect?  Nope.  But as I stated in the First, some information is right on target, some is at least close to the bulls-eye, and other info will fall into place as we continue to learn. That’s why you need to see it as “guide” of patient experience, and to use it to become PROACTIVE in your relationship with your doctor and the entire medical profession.

Today, you can order either copy. As of today, the First Edition has been lowered to 14.95 until supplies run out, which will be soon. The Revised Second Edition is taking pre-orders, and it looks like books will start being sent out in about 7-10 days.

You can go here to see a stand-alone website about the book, as well as here to be among the first to pre-order your copy.

THE STTM BOOK IN OTHER LANGUAGES

Yes, you will eventually be seeing the Revised Second Edition in various languages. That’s in the works right now, and no, I don’t yet know the dates. I’ll announce that here, so be sure and be signed up for this BLOG NOTIFICATION to the left under the links.

KINDLE and E-BOOKS

With no projected dates other than much later this year, you will first see an E-book. Later, we’ll be looking at Kindle. Again, announcements will be made, and you’ll have to be patient.  In the meantime, ordering the book is your best choice right now. Besides, having this book in your lap in the doctor’s office is powerful to many of them, since doctors can have silly thoughts about “internet” information.

And more is coming which will be announced as they occur. 🙂

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The dark ages in the United Kingdom–don’t think it might not happen where YOU live!

I have lived in the United States my entire life.

And there are other countries I have felt were similar to my own as far as being modern, forward-thinking, and intelligent. The United Kingdom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treatment of all forms and degrees of hypothyroidism.

Because of the British Thyroid Association (BTA) and the Royal College of Physicians (RCP) ‘guidance’ on the Diagnosis and Management of Primary Hypothyroidism, most UK doctors refuse to prescribe any form of  T3, whether adding synthetic T3 to one’s T4, or using natural desiccated thyroid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism, and we do not recommend the prescribing of additional Triiodothyronine (T3) in any presently available formulation, including natural thyroid extract, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful”.

Anybody puking yet??

And, says thyroid patient advocate Sheila Turner of TPA-UK, “never has the RCP, BTA  produced any of the ‘overwhelming evidence’ they claim as supporting the use of T4-only, even though they have been asked to do so on numerous occasions. Overwhelming evidence supports the use of synthetic T4/T3 and natural thyroid extract.”

And don’t think it won’t happen where YOU live. Stupidity can abound.

What to do about it?? Answer a short questionnaire, created by Sheila and TPA-UK, which is for those with symptoms of hypothyroidism when treated with T4-only, who then tried a T3 thyroid hormone product with success. “The results of this questionnaire will enable us to create the first ‘World-wide Register of Counterexamples to Levothyroxine (T4) – only therapy'”, underscores Sheila. “The objective is to draw attention to the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.”

Don’t wait until stupidity and narrow-mindedness comes to where you live, as it also has in the country of Columbia, where Cynomel (T3) was retired more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thyroid Register.

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The STTM patient-to-patient website needs your help! I had to move the website to a far larger server in order to handle the immense amount of visits this site gets. And a larger server means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beetles and my husband won’t tell me what his Swiss Bank Account number is. So your donations can help keep Stop the Thyroid Madness up and running for yourself and other patients just like you! If you appreciate STTM, please go here to make a donation to the hosting fees. I do not get it! The hosting company does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

The Contact Me page on STTM hasn’t been working for weeks. And I didn’t know it. 🙁  But it’s fixed now.  Remember: it’s not to ask questions about your personal treatment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, bookmarked. I can’t promise how your doctor will respond, but it’s been positive for most when a book is referred to right in front of the doc. I hope it helps you, too.  P.S. Only books ordered directly from the publishing company get a bookmark of updated info. That’s also true if you have a book sent to a relative or friend.


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Is there a genetic reason many of us do lousy on T4?

deiodinase2Last May, a very interesting article appeared in the May 2009 issue of the Journal of Clinical Endocrinology and Metabolism, titled For Some, L-Thyroxine Replacement Might Not Be Enough: A Genetic Rationale and presented by Endocrinologists in Bristol in the UK. It’s accompanied with an editorial by Endocrinologists Brian W. Kim and Antonio C. Bianco.

This is the same article referred to by Endocrinologist Dr. Gary Pepper on the last Thyroid Patient Community Call on Talkshoe.

Basically, the article states that a genetic variation in the enzyme that converts T4 to T3, deiodinase D2 (also called Type 2 Deiodinase, or 5′-Deiodinase), may be responsible for why so many thyroid patients don’t do well on Synthroid, Levoxyl, levothyroxine, etc, and in turn, do so much better on natural desiccated thyroid like Naturethroid, Erfa’s Thyroid, or the combined synthetic T4 and synthetic T3 (Cytomel).

In other words, where some may have a strongly functioning deiodinase D2 enzyme which converts T4 to the active T3 well, others may have a modified deiodinase D2 enzyme, causing less optimal conversion.

In the Editorial, the two Endos Kim and Bianco explain the reality of “polymorphism”–a condition in nature in which changes or variations occur, and in one patient from another, a change in the DNA.  As related to conversion of T4 to T3,  some thyroid patients have a less effective deiodinase D2 enzyme in the conversion of T4 to T3.  Specifically, there is a common variant of the gene, threonine (Thr) 92 alanine (Ala), and it results in decreased D2 enzymatic activity.

The study proposes that this alteration from polymorphism occurs in 16% of those studied, and concludes that the majority don’t have this problem, and thus, “most do fine on T4-only medications”. But 16% do have this problem and need the combined therapy of T4 with T3.

Bristol was also mentioning this reality in 2004 here, even if they thought it was as low as 5%.

As Dr. Pepper hinted, this study could do wonders to open the eyes of Endocrinologists about the use of desiccated thyroid, or at the very least, about combined hypothyroid treatment with synthetic T3 added to synthetic T4.  And I’m glad for that when so many patients have found Endocrinologists to be narrow-mindedly stuck on Synthroid or other T4-only thyroxine products.

Of course, informed thyroid patients know this is only a baby step in the right direction, even if a good one! So we’ll rejoice for this study, and watch for more progress from the medical community and Endocrinology in general. For example, saying that “most do fine on T4” simply because they have may a non-variation might be proven wrong as physicians take the time to really look at those “fine” patients, especially as they age and symptoms of an inferior treatment do pop up. And though the combination of synthetic T3 with synthetic T4 definitely gives better results, thyroid patients who then moved to desiccated thyroid with it’s T4, T3, T2, T1 and calcitonin report even better results and clinical presentation!  We’ve also learned that the TSH lab test absolutely sucks when it comes to diagnosis and treatment.  Read TSH Why It’s Useless, or see even more detail in Chapter Four of the STTM book, titled Thyroid Stimulating Hooey.

And finally: do thyroid patients really believe that problems with T4-only treatment is simply due to a genetic abnormality or variation? Maybe. But isn’t it funny that a healthy human thyroid does NOT depend solely on conversion, but also gives direct T3. hmmmmmm

P.S.  Patients also know that the use of the supplement Selenium helps with conversion, by the way, but has never stopped our first-hand knowledge that desiccated thyroid rocks!

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Thyroid Patients sending a big KISS to this British Doctor!

kiss2

I recently discovered a very humorous and appropo medical blog on the net, written by a United Kingdom General Practitioner who wisely stays incognito. His blog is called The Jobbing Doctor.

And his most recent and humorously brilliant post is titled Hairy legs are better than blood tests! He describes his occasional confusion when blood tests don’t agree with the patients symptoms.

Says the UK doc: “The textbooks teach that the level of circulating thyroid hormones (which are called T3 and T4) are inversely related to the Thyroid Stimulating Hormone (TSH). If your T3 and T4 are low, your TSH will be high: this suggests an underactive thyroid gland. If the T3 and T4 are high and the TSH is low, then you have an overactive thyroid gland. That’s easy, huh!”

But his confusion sprang forth when a patient’s labs showed “a highish TSH, T4, and a normal T3.” Yet apparently her symptoms didn’t imply there was any problem, so he chose to do nothing as far as changing her treatment.

A month later at her next appointment, this patient expressed her approval that he didn’t change anything…because her leg hair and eyebrows were coming back.

And his conclusion?  “Pah! Who needs blood tests!”

Jobbing Doctor, you are discovering what thyroid patients have been learning over and over for years: it’s SYMPTOMS (or lack up) which need to pull the cart, NOT labwork. Sure, we love our labwork. They can give clues to areas where our bodies are screaming for help.  But they definitely do NOT tell the whole story.

Look at the ignoramus TSH lab test. Countless patients have walked into their doctors offices with clear and obvious hypothyroid symptoms–and desperate for a diagnosis–yet the ink spot on the office piece of paper called the TSH lab result proclaims they are “normal”. And that dubious “normal” diagnosis can go on for years before it rises high enough to reveal what was already there by SYMPTOMS.

Or, while on thyroid medication, patients will have a lamebrain “normal” TSH lab result, yet will continue to have their own brand and degree of continuing hypothyroid symptoms which the clueless doctor dismisses as an hysteric female interpretation, motherhood, stress, a need for psychological help….or just “something else”. Uh huh.

In fact, Jobber Doctor, patients have learned that when they are optimal (on desiccated thyroid), along with optimal ferritin and cortisol), they will generally have a free T3 in the upper part of the range, and a SUPPRESSED TSH, with no symptoms of hyperthyroidism.  That is general, and there can be some exceptions, but overall, it has spoken volumes to patients on how inadequate thyroid lab tests can be.  i.e. being in the “normal” range—anywhere in the normal range–can be mean squat.

Thanks for a great post,  UK Jobber Doc. And P.S.  Desiccated thyroid is an even better treatment than thyroxine. 🙂

*Want to be informed of these blog posts? Curious what’s on my mind? Just use the Notifications at the bottom left of the links.

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