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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!

More on Acella desiccated thyroid….plus RT3 ratio calculator fine tuned!

 

Screen Shot 2015-11-09 at 12.21.12 PM(This post has been updated to the present day and time. Enjoy!)

In 2011, I had a friendly and informative conversation with Philip Vogt, the President of Acella Pharmaceuticals, and Ellen Gettenberg, Director of Marketing. Acella is the company which brought out what is often termed a generic form of desiccated thyroid, but appears to be simply another great brand name of NDT. It first caught the eye of thyroid patients in November, 2010. And I want to pass onto you what I learned:

Acella is different

Acella Pharmaceutical of Georgia, USA, is not like the gigantic pharmaceuticals we often hear about. Instead, they attempt to target the under-served markets, producing medications for particular niches of treatment, or those which are low-profile medications. They also seek to produce lower-priced competitive versions of certain medications while keeping the quality. Thyroid patients appreciate that, especially after seeing the 2015 horrible rise in price for Armour desiccated thyroid after Forest Labs was bought out by Activias–often triple the original price–besides the fact that patients began to report a return of symptoms.

How they make their version of desiccated thyroid

When it specifically comes to its desiccated thyroid, they go by older version “recipes” – using more dextrose (sugar) and less methylcellulose, which we love But in their case, the tablets are stated to contain NO cellulose. That is actually good. Their tablets are also not as hard-pressed as Armour seems to be now. That means patients who like doing their NDT sublingually can make the Acella version work.

The ingredients

Acella started out with a 65 mg tablet to represent a grain, but by 2011, became a 60 mg tablet for its “grain”. They also make a 30 mg tablet (1/2 grain) and a 90 mg tablet (1 1/2 grain). The desiccated thyroid is speculated to come from the same manufactured source as do other brands.

Says the website:

The tablets contain both tetraiodothyronine sodium (T4 levothyroxine) and triiodothyronine sodium (T3 liothyronine) providing 38 mcg levothyroxine (T4) and 9 mcg liothyronine (T3) per grain of thyroid (or per 60 mg of the labeled amount of thyroid). The inactive ingredients are calcium stearate, dextrose (agglomerated) and mineral oil.

Note that like all manufacturers, they use the “synthetic” names for T4 and T3, but desiccated thyroid is NOT synthetic.

Reports by patients

They love it. It’s rare to hear anything negative about it. (If you do have a bad reaction to even Acella’s NP Thyroid, here’s your reason: https://stopthethyroidmadness.com/ndt-doesnt-work-for-me). So we say “Keep up the good work, Acella!

JanieSignature SEIZE THE WISDOM

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HAVE YOU LIKED THE STOP THE THYROID MADNESS Facebook page? It gives you daily inspiration, information, and discussion on certain topics.

ABOUT THE RT3 ONLINE CALCULATOR on STTM: My brainy techs have added three more combinations to the calculator, so it is now ready-to-go to help you figure out your ratio: https://stopthethyroidmadness.com/rt3-ratio So far, the feedback is very positive and we have seemed to remove “most” kinks. REMEMBER: you need to put your Free T3/total T3 in first, then all the measurements will appear for the RT3.

WHEN TESTING YOUR THYROID LEVELS: remember NOT to take your desiccated thyroid, or your T3-only, before labs, we learned the hard way. The T3 rises consistently after you take it, giving you false-high reading and freaking your clueless doctor out. **Picture doctor, eyes bugged out like a giant wasp, looking at lab result** With desiccated thyroid, the T3 will peak in approx. 2 hours, then a slow fall; with T3-only, it can take approximately 4 hours to peak. Recommend labwork found here.

NEED A GOOD PATIENT GROUP? Go here. Of course, the groups are free and can be very helpful. Or, you can choose a paid consultation with Janie, which seems to be extremely helpful for those who want more immediate feedback and help.

TYPICAL QUESTIONS AND ANSWERS about thyroid, treatment, more issues: www.stopthethyroidmadness.com/common-questions-answers

Reverse T3–do you have this problem in excess? Let’s talk!

Screen Shot 2015-12-04 at 5.53.48 PM

This blog post has been updated to the current day and time. Enjoy!

Most thyroid patients have heard about T4…the thyroid storage hormone, also called a pro-hormone. You’ll see it in literature as “thyroxine” or “l-thyroxine”–the latter as the name for a man-made T4.

And many know about T3…the active thyroid hormone which rids us of hypothyroid symptoms.

And as patients become more informed, they learn that the body not only converts T4 to T3 through what is called deodination, it also provides some of that T3 directly. That is an important distinction! The latter fact can be why thyroid patients report getting far better results with natural desiccated thyroid (NDT) like Naturethroid, NP Thyroid or other brands.

Patients might also learn that there are actually five thyroid hormones made in your body, which is also what’s found in NDT: T4, T3, T2, T1 and calcitonin.

Reverse T3

But in every individual, whether a thyroid patient or not, a thyroid can also convert T4 to the inactive RT3 (reverse T3). RT3 is an inactive thyroid hormone, as compared to T3 as the active thyroid hormone. And converting to RT3 is a natural and necessary process, even if there are consequences.(1) The body might convert T4 to RT3 as a way to clear out excess T4, or as a way to reduce your metabolic rate. It can happen if you go through any of the following:

  • surgery
  • a major physical accident
  • certain heart problems
  • intense chronic stress
  • restrictive low carbohydrate diets (2)
  • chronic inflammation

When Reverse T3 is a problem

Unfortunately, many thyroid patients make far too much RT3, as well, and patients with their open-minded doctors have been making cutting edge discoveries about this fact. Many patients have seen that their high levels of RT3 can be found with the following conditions:

  • high cortisol
  • low cortisol
  • low iron levels
  • possibly low B12
  • lyme disease
  • gluten intolerance or Celiac
  • other undiscovered and untreated underlying issues that can go hand-in-hand with being hypothyroid.

Why is a high level of RT3 is problem? That excess RT3 is making itself lazily comfortable on your thyroid cell receptor sites, preventing the active T3 thyroid hormone from doing its job on that same receptor to get you out of your hypothyroid state. It becomes akin to a clogged up drain to your organs and cells. So you stay hypo and symptomatic, in spite of seemingly “normal” other labwork.

The solution

Informed patients discovered they needed to discover and treat all the reasons contributing to their body converting to excess RT3.

Want to read more? All the below is based on patient experiences and wisdom to share and work with your doctor:

For those with the revised Stop the Thyroid Madness book, there is also more good detail in Chapter 12 called T3 is the Star of the Show, page 155, to continue your education. This is all good information to take into your doctor’s office.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

 

(1) http://press.endocrine.org/doi/abs/10.1210/jcem-41-6-1043

(2) http://press.endocrine.org/doi/abs/10.1210/jcem-42-1-197

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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.