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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!

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. 🙂

The story of one little bumper sticker about depression and a life potentially changed!

Reading and responding to my daily emails is a huge job that takes a lot of time. My 92 year old mother-in-law thinks I’m obsessed with my computer. ha!  If only she knew.  But some of those emails stand out in my mind.

As a recent example, one gal wrote to tell me she had suffered from depression for so many years due to her poorly diagnosed and inadequately treated thyroid condition. And because her use of desiccated thyroid had hugely improved her mood, she was inspired by and had purchased the STTM bumper sticker about depression. You can see it here.

And unbeknown to her innocent husband, the bumper sticker went on HIS car.

And just two days later, she explains what happened:  My husband was coming from his cardiac rehab exercises to the shopping center locally, and when he got out of his car,  another car pulled behind him, blocking the lane.

Turns out that the other driver, a man, jumped out and wanted to know what the bumper sticker means.

She continued: My husband figured the guy meant his Marine Corps stickers but no, he meant the thyroid sticker. So my husband says, bewildered ‘What Thyroid sticker’?

After realizing it was there, the other man explains how his wife has been diagnosed with thyroid disease and her dr. wants her on antidepressants.

She said: “My poor hubby only knew that I feel so much better on Natural hormones and I am not as depressed as I was before. All he could tell him was “she got it off the internet”.

I’ll bet he saw the URL on the sticker, and his wife is going to get some life-changing information from Stop the Thyroid Madness.  So we can never underestimate how little things we say, or show, or do are going to make a difference in someone’s life.

I hope each and every one of you are being “thyroid patient advocates” and spreading the word to others. If you like using bumper stickers or t-shirts, go here.

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ABOUT PROBLEMS WITH THE STTM SITE: There have been numerous problems with folks getting on STTM the last few weeks. The first problem was due to a software installed by my web designer to prevent attacks by spam bots. That was fixed. But if you visited during that time and use IE, just clear your caches. Others may need to use a different browser.  You then may be able to go back to your original browser.

But since then, more problems have creeped up. It’s called GROWING PAINS. i.e. STTM has become so popular that more problems pop up. And since we have limited resources, we just have to deal with them, one at a time. So please announce on all your groups that STTM has not gone away, that we are working to fix problems related to growing pains,  and to try again if they at first can’t get on. If you want to contribute to the hosting fees, go here:  http://www.dreamhost.com/donate.cgi?id=8074

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TWO SITES YOU NEED TO REGISTER WITH:

1)  http://www.tpa-uk.org.uk/register_of_counterexamples.php A Register of Counterexamples to levothyroxine-only-therapy, set up by Sheila of TPA-UK.  “Counterexamples” means all those symptoms which proved that T4-only meds do NOT work.  She will be using this to get the attention of doctors and authorities in order to re-examine the use of T4-only for all forms and degrees of hypothyroidism.

PLEASE NOTE: This questionnaire is only for those prescribed levothyroxine (T4-only) and who failed to get relief for the elimination of their symptoms, and who then started using a T3 containing hormone (either synthetic or natural). It’s also for those who were denied a diagnosis and treatment, and tried a T3 hormone containing product and found your symptoms became less.

2) http://www.worldthyroidregister.com/ A site established by Dr Gorder Skinner to gather as many signatures as possible to establish a Worldwide standard treatment for thyroid sufferers.

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.


The shackling and gagging of Dr. Sarah Myhill of the UK

(4-30: Paula has informed me that you can download Dr. Myhill’s complete website to your computer via this zip file: www.drmyhill.co.uk.zip – Windows Live )

Today, it has been announced by the GMC (General Medical Council) of the UK that Dr. Sarah Myhill is now straitjacketed. She is forbidden to prescribe medications, is bound by other medical practice restrictions (see the details on the Support Dr. Myhill Facebook page), and most egregiously, has been ordered to remove parts of her website (thanks to Lethal Lee for pointing this out), some of which you will not see two weeks after I have posted this.

Why remove parts of her website? Because by daring to educate the public, especially if that education goes against “standard medical practice”, it seems to be deemed “harmful”. In other words, you as a patient are not allowed to discover, or are too “vulnerable to get it,  that there just might be a TOTALLY different story to the medical practice you are subjected to.

For example, here is part of a page on Dr. Myhill’s website which is completely correct, informative, and wise, and I want to see her words stay sharp and viewable, especially for thyroid patients. It fits our experience. The page is titled “Test results and what they mean”. If you want to be informed, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often people come to me with tests results which have not been properly interpreted. The reasons why this happens are as follows:

  • Test results are flagged up and considered to be abnormal if they are outside the reference range, but one’s individual normal range is not the same as the population reference range. This is a particular problem in the interpretation of thyroid tests.
  • Reference ranges for tests change. Reference ranges are based on random bloods from the population. The trouble is anyone following a Western lifestyle is not evolutionarily correct and many not normal! So labs change their reference ranges to adjust for this. So, for example, the normal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is induced by alcohol and prescription drugs and because so many people drink alcohol it is considered normal to run a high gamma GT! The lab I use has a normal reference range for thyroid hormone T4 of 12-22pmol/l but some labs give ranges of 5.6-17pmol/l!
  • Tests are often incomplete. So someone with a thyroid stimulating hormone (TSH) within reference range will be told they have no thyroid problem, when in fact one also needs a free T4 and a free T3 together with a clinical history to assess if there is a thyroid problem.
  • Drug companies influence normal ranges. The normal range for cholesterol has come down steadily since statins have been such big money earners for Big Pharma.
  • Incorrect breakdown of test results. Many people are prescribed statins on the basis of a single cholesterol level. This is faulty for many reas ons – firstly one needs a breakdown of good (HDL) and bad (LDL) cholesterol to get the ratio. If the ratio is not favourable then this is likely to be a symptom of arterial disease. Cholesterol lowering drugs are often irrelevant. See Cholesterol – the common causes of raised levels
  • Results close to the limits of normal may be abnormal for that person. For example, a high normal bilirubin may mean Gilbert’s syndrome – this means someone is a poor detoxifier. A high mean corpuscular volume (MCV) could point to hypothyroidism, B12 or folic acid deficiency.
  • Normal tests do not mean no pathology. A normal ECG at rest does not mean there is no heart disease, yet many people are told this is the case.
  • Tests may ask the wrong question. So many people come to me with severe fatigue syndromes having been told nothing is wrong because all the tests are normal! But ask the right question and do Mitochondrial Function Profile and you find gross abnormalities with respect to energy supply at the cellular level.
  • Tests for poisonings are particularly misleading. For years doctors have promoted levels of cholinesterase as a good test for organophosphate poisoning. It is a rotten test and misses the majority of cases! Much better would be Fat biopsy for pesticides or Volatile Organic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thyroid patients, struggling to fight the inane thyroid treatment protocols, have a strong feeling that though this progressive doctor may be restricted as a physician, we’re going to hear a lot more good information from the courageous and wise Sarah Myhill.