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“A Little” natural desiccated thyroid if you’re “a Little” Hypothyroid? Don’t Make the Same Mistake We Did!

photo Moriah with butterfliesThe following Guest Blog Post is written by Jill, who has a B.S. in Combined Sciences and is the mother six, including 22-month-old Moriah, a thyroid and adrenal patient who has Down syndrome.

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I had gone to several doctors to investigate thyroid treatment for our infant daughter Moriah, who was born with Down syndrome (Ds). From my research, I knew thyroid issues to be quite common in those with Ds, but also frequently overlooked since many of the characteristics associated with Ds are the same as those seen in congenital hypothyroidism.

Also, because many doctors do not order all the appropriate labwork but rely too heavily on the TSH, many of these children remain untreated.

I was determined not to fail my girl on thyroid, so imagine my joy to finally find a doctor willing to prescribe NDT. I happily filled our prescription for 15 mg/day of natural desiccated thyroid and scheduled a follow-up appointment for 6 weeks. What I did not know at the time is that one cannot remain on a low dose of natural desiccated thyroid. (Patient Mistake #1)

The solution to being “a little” hypothyroid is not to take “a little” NDT. As I learned from a new friend and confirmed on the STTM website, that will cause you to become even more hypothyroid than you were to begin with due to the suppression of the feedback loop.

And that is exactly what happened to Moriah.

My friend clued me in, and I felt sick to my stomach, realizing this doctor must not be aware of that since she had not mentioned anything about ever raising Moriah’s dose. Long story short, even with labwork showing a big drop in the free T3, along with multiple new-onset hypothyroid symptoms, the doctor wanted to keep Moriah on just 15 mg/day. Why? Because, she stated “The TSH is by far the most important of the thyroid levels, and her TSH is really good!”

Ugh!

Sadly, the mistaken notion about how to dose NDT is all too common, even among caring, integrative doctors such as the one I had. I read many stories of doctors prescribing “low dose” NDT or adding “just a little” to be “on the safe side” and treat “borderline” hypothyroidism. But this is not how it works with NDT! This “treatment” only makes things worse! There is even pediatric dosing information on the NDT websites, but it is meaningless to a doctor who doses according to the TSH.

What a tragedy that these caring doctors are actually making their young patients even sicker!

Thankfully, we are now working with a new doctor who understands the necessity of evaluating symptoms and all the labwork and understands that, like adults, children cannot be left on “low dose” NDT. I wish there were more doctors like her.

The STTM website has been a Godsend, and I refer everyone to it, especially to check out “Mistakes Patients Make“” so they do not make the same one I did.

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– See why going by the TSH is the WORST way to diagnose or treat hypothyroidism, here.

– For adults, here’s what we have learned about using Natural Desiccated Thyroid.

– Having what seem like bad reactions to NDT? Learn why. It’s not about NDT, but what it’s revealing!

– Have you Liked the STTM Facebook page?? Come on over for daily inspiration and information based on shared patient experiences!

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New chemical analysis showing important difference between NDT and T4-only!

I found this fascinating…and I think you will, too.

I got an email from Peter Guagliano, the owner of the website thyroid-s.com. And he directed me his latest post titled “Natural Desiccated Thyroid and Synthetic are NOT the same”. 

But this wasn’t the basic information that we all know i.e. comparing a single synthetic hormone to all five natural desiccated thyroid, which makes the latter wonderful.

Instead, it was about a bio-analytical chemist who decided to test synthetic T3 (Cynomel and Cynoplus) as well as the Thailand-made Natural Desiccated Thyroid (NDT) called Thyroid-S, by extracting each tablet with methanol, then diluting and injecting them on an LC/MS system–a sensitive instrument used to detect and identify compounds and molecules in a substance.

And what he discovered and reported is that the thyroid hormones of NDT are tightly bound with thyroglobulin, a large iodine-containing protein….whereas synthetics are bound by nothing. i.e. synthetic hormones are exposed; NDT hormones are protected (until they are released by your digestion).   The diagram on this blog post gives you a powerful visual of this reality, but specifically in comparing natural desiccated thyroid with synthetic T4-only. You will see the large mass of thyroglobulin on the left, each containing either T4, T3, T2, T1 or calcitonin within. Then the tiny synthetic hormone on the right, alone.

But is that bad NOT be bound by thyroglobulin??  Possibly yes in the opinion of Peter. As Peter explained:  “The [exposed] synthetics might be affected by stomach acids in different ways in different people.  Low acid, high acid, various digestive and pancreatic enzymes in varying amounts, bacteria/flora in the stomach and small intestine, all kinds of possibilities here which would vary by the person.”  And, he says, that can mean instability!

Peter continues:  “Perhaps the thyroglobulin in NDT (and completely missing in the synthetics) is absorbed, or necessary, or utilized, or forms other products during digestion that could affect blood levels of various substances, numerous carrier proteins for example, thereby affecting the results obtained.”  And he concludes:  “The NDT hormones are bound to thyroglobulin and not available for reaction or breakdown until after they first digested (from Janie: which saliva begins, by the way, even in your mouth).  This would be a more stable compound.”  His original post is here.

A side note about thyroglobulin and iodine:   The protein Thyroglobulin takes up a lot of space in your thyroid with the purpose of taking ahold of iodine and storing it to produce thyroid hormones. That purpose alone tells you how important it is to have healthy levels of the nutrient iodine. And each molecule of thyroglobulin has just over 100 sites where the iodine can take ahold along with the assistance of thyroid peroxidase (TPO) and hydrogen peroxide. When you are iodine deficient, it’s been noted that your thyroglobulin will increase, which is why you can see a bulge in front of your neck–also called a goiter. (Even taking too much iodine supplementation can cause this increase, which can block thyroid hormone production).

**Enjoy more scientifically technical information about thyroglobulin? Go here. 

**To read about the process of making porcine-derived NDT via thyroglobulin, go here. 

**To know more details about Natural Desiccated Thyroid–its history, the breakdown of the hormones, and how patients dose it, see Chapter 3 in the revised STTM book, here. 

**To read how T4-only is only a reverse mirror image of the real thing, read my blog post from May 10, 2012. 

Whether these findings are completely correct or not, patients simply know from ten years of experience that NDT has been giving them far better results than T4-only…and even those on T3-only who moved to NDT reported they liked the results even more. It’s all important patient-to-patient information.

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Hypothyroidism, Insulin resistance and Metformin: read this brilliant information!

This interesting page has been updated to the present day and time. Enjoy!

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The following insightful post was written by UK hypothyroid patient Sarah Wilson. 

My daughter (25) has epilepsy. What’s that got to do with being hypothyroid and Natural Thyroid Hormones (NTH. also known as Natural Desiccated Thyroid or NDT)? Quite a lot, by the look of things.

My daughter’s epilepsy is triggered by unstable blood sugars. And since taking Metformin (medication to improve blood sugar control), she has significantly reduced the number of seizures. Being a good hypothyroid Tiger-mother, I have been doing mega amounts of research and we got to the Metformin approach through reading hundreds of academic medical journals. What I found along the way got me thinking about NTH and Hypothyroidism.

I have a strong hunch, backed up by some meaty academic evidence, that when patients develop hypothyroid symptoms, they are actually becoming insulin resistant. There are many symptoms in common between women with PCOS and hypothyroidism–the hair loss, the weight gain, et al. http://insulinhub.hubpages.com/hub/PCOS-and-Hypothyroidism A hypothyroid person’s body thinks it is going into starvation mode and so, to preserve resources and prolong life, the metabolism changes. If hypothyroid is prolonged or pronounced, then it is entirely feasible that even with the reintroduction of thyroid hormones, that chemical preservation mode becomes permanent. To get back to normal, they need a super “jump-start” to kick the metabolism back into action. The super-kick start is effected through something called AMPK, which is known as the “master metabolic regulating enzyme.”  http://en.wikipedia.org/wiki/AMP-activated_protein_kinase

Guess what? This is exactly what happens to Diabetes patients when Metformin is introduced. http://en.wikipedia.org/wiki/Metformin

If you are technically minded then you might want to read these articles. http://www.springerlink.com/content/r81606gl3r603167/ and http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2265.2011.04029.x/pdf

They are a bit tough-going on the science but worth ploughing through. Why?  Note the following comments/partial statements:  “Hypothyroidism is characterized by decreased insulin responsiveness”; “the pivotal regulatory role of T3 in major metabolic pathways”; “The effect of thyroid hormone on basal metabolic rate was recognized more than a century ago”

The community knows that T3/NTH makes hypothyroid patients feel better – but the medical establishment is scared of T3/NTH – probably because they don’t understand how it really works. The medical establishment might find an alternative line of argument about impaired metabolism more palatable if we can show them this real proof that the old desiccated thryoid treatment **was/is** having the right result – the i.e. the T3 is jump-starting the metabolism by re-activating AMPK. If Metformin (or one of the other anti-diabetic meds) could actually also do the same thing for hypothyroidism without the “dangers” of NTH, they they should be jumping at the opportunity.

The great news is that Metformin is very cheap, stable and has very few serious side effects (and certainly none on the heart). To use the car engine metaphor, if glucose is our petrol, AMPK is the spark plug and both T3 and Metformin are both ignition switches. Sometimes if you have flat batteries in the car, it doesn’t matter how much you turn the ignition switch or pump the petrol pedal, all it does is flatten the battery and flood the engine. Dr. Skinner in the UK has been treating “pre-hypothyroidism” the way that some doctors treat “pre-diabetes”. Those hypothyroid patients who get treated early (before the wretched blood numbers get into the magical range) probably haven’t had their AMPK pathways altered and the T4-T3 conversion still works. The use of drugs as prophylactics is well understood by the medical establishment (e.g. baby aspirin for hearts), so there is no reason therefore why thyroid hormone replacement therapy shouldn’t logically be given to ward off a greater problem down the line.

It’s my belief that there is clear and abundant academic evidence that the AMPK/Metformin research should branch out to also look at thyroid disease.

As a supplementary on the history. I have PCOS; my female relatives have PCOS; my mother has just developed breast cancer which we are certain is related to the oestrogen dominance/insulin resistance. My daughter also has had Coeliac Disease since weaning (and oh boy, that was a fight to get a diagnosis but we got there). My daughter was showing lots of PCOS symptoms (some of which are of course hypothyroid symptoms) alongside the Estrogen, but because there were no cysts…no diagnosis, which is not correct by the Amsterdam criteria, but there we have it. So we moved “off topic” in PCOS terms, did a 9 month experiment of adding and subtracting one thing at a time to get to a (more) stable outcome. We never got the PCOS diagnosis but we did end up with T2DM Type 2 Diabetes) by the backdoor and the Metformin. We had two stupid consultants who reduced her to tears – their logic was unbelievably crass and at odds with long standing proof: “there isn’t a tap in your neck which stops the sugar getting to your brain you know” grrrrr. I have since found the links between people with T1DM (Type 1 Diabetes) who inject insulin and hypothyroidism too.

So my idea is that we need to talk to the medical profession in a language they relate to. They think Natural Desiccated Thyroid is voodoo, so they switch off. YET the NDT is doing something very, very scientific: the direct T3 is kicking the closed -own metabolic process back into life, just like Metformin does for insulin resistance. Who says there isn’t more widespread T4 resistance? There is serotonin resistance!  http://www.ncbi.nlm.nih.gov/pubmed/17250776

http://web.archive.org/web/20130426233947/http://www.hotthyroidology.com/editorial_79.html Take a look at page 63.

Disclaimer: I, Sarah, am not medically trained and I haven’t even got a University degree. My business, however, is researching complex financial data and since leaving school, I have probably graduated with a PhD in the University of Life. My daughter has two degrees and my husband is in IT so I’ve learned a lot about logic over the past 30 years. I think that to take this debate forward, we need someone with the credibility to do a piece of academic research and get it put into one of the highly ranked journals – even doing a relatively straightforward meta-analysis of all the published works on AMPK/T3 /metabolism would be a start. I know everyone feels desperately miserable about not being treated properly, and it is probably very sexist that us bunch of moaning women are not taken seriously. BUT perception is reality and we have to deal with that reality as best we can. And I think that our sisters in the chronic fatigue/ME camp should have reason to join us on our quest too. I wouldn’t know where to start to find out how to sponsor a university researcher but maybe we should think about that as our “big thing”.

Let’s talk.

119 replies

What does the production of a new generic desiccated thyroid by Acella mean??

Even tho I saw this mentioned by a patient here or there on patient groups, and later saw it mentioned elsewhere on the net, I have been very hesitant to talk about it on this very widely-read website called Stop the Thyroid Madness.

Namely, there is a new US-made natural desiccated thyroid product out there. It’s considered generic, and is being actively substituted for Armour when patients go to pick up their Armour at the pharmacy.  It’s made by Acella Pharmaceuticals LLC in Alpharetta, Georgia, which was formerly Brookstone Pharmaceuticals. And I just found out that the inactive ingredients are listed as calcium stearate, dextrose monohydrate, maltodextrin and mineral oil.  Anybody see cellulose in there?? Neither do I. Very nice.

It also contains the same T4/T3 amounts we are used to in the 60 mg, one grain tablet: 38/9. Oh, and it’s still called an “unapproved drug”.

Now before you get all ticked off at me for NOT wanting to talk about it here as it has been done elsewhere, understand this: last year, we saw the FDA shut down ALL generic production of desiccated thyroid. The implication was that ONLY ones around since the 1930’s (Armour and Naturethroid) were allowed to exist, being an unapproved drug.  So…I worried that by mentioning it, we might give TOO much attention to a new one and see THIS ONE shut down.

But right now, I am seeing information about it on certain medicine website, including this one connected to our government.

Don’t ya just love the way things happen with a medication that turns lives around and we know NOTHING as to whythey are happening or when from the FDA?? Pitiful, typical…and sad.

***If you want to talk about this new generic version, which some patients are accepting in place of Armour and trying, go to the NTH (Natural Thyroid Hormones) yahoo group here.  It’s so new that there’s not a lot of feedback yet from folks, but I suspect we’ll start to see more and more.

P.S. If you have been through any long-term stress, you need to know that your cortisol will go high to help you cope, and in turn, it can drive your potassium and magnesium levels low. That happened to me this year as I went through prolonged stress from the economy.  So be sure and get those tested, and specifically the RBC (red blood cell) rather than serum. The RBC tests will show what your cells have.

HAPPY NEW YEAR, 2011!

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As we enter another wonderful year, the Stop the Thyroid Madness website couldn’t exist without your donations to the hosting fees, which have grown substantially due to the popularity of this patient-to-patient informational website. If you have benefitted from STTM, please consider donating to the fees here.  And thank you, since your donation assures that other will benefit as you have.

47 replies