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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!

A hopeful new article proposing that adding T3 to thyroid treatment is the way to go!

Screen Shot 2014-03-19 at 5.48.52 PM(This post was updated in 2015. Enjoy!)

In a recent article by thyroid patient Mary Shomon, there was mention of an interesting article by Dr. Wilmar Wiersinga that came out this year in the journal Nature Reviews Endocrinology titled “Paradigm shifts in thyroid hormone replacement therapies for hypothyroidism.” And I find this article fascinating.

I’m going to break it down a bit and add more important observations that I’ve not seen expressed elsewhere and which are important, because the truth stands out about T4-only and decades of patient experiences.

In the abstract summary of his article, he states:

Evidence is mounting that levothyroxine monotherapy cannot assure a euthyroid state in all tissues simultaneously, and that normal serum TSH levels in patients receiving levothyroxine reflect pituitary euthyroidism alone.

Informed thyroid patients can only shout Hallelujah!!

But actually, the evidence has been there all along…and the medical profession has not been listening!

For over 50 years since T4-only was pushed upon thyroid patients in the early 1960’s (not the 1970’s mentioned in the actual article), we haven’t done well on levothyroxine. But when we came into our doctors offices and complained of those pesky symptoms of continued hypothyroidism while on levothyroxine, the replies from our doctors have ranged from “You need to exercise more and eat less”, to “it’s just your age”, to “It’s part of being a busy mother” to  “Here’s a prescription for an anti-depressant/statin/BP med”….on and on.

My own mother was the classic example. She as put on Synthroid in the early 1960s in her forties. And from that time on until she died in her early eighties still on Synthroid, she paid continual and growing problems: chronic depression, rising cholesterol, heart problems, weight gain, body stiffness, inability to stand for long periods, poor stamina, dry hair and skin, and problems with her cognitive abilities. And today, informed patients know that all those symptoms are classic symptoms of continued hypothyroidism—all common in far too many patients on T4-only in their own degree and kind…sooner or later.

Stop the Thyroid Madness is the direct result of thyroid patients gathering in groups on the internet by the turn of the 21st century and proclaiming T4-only has only served to make them sicker!

Dr. Wiersinga also states in his abstract:

Levothyroxine plus liothyronine combination therapy is gaining in popularity; although the evidence suggests it is generally not superior to levothyroxine monotherapy, in some of the 14 published trials this combination was definitely preferred by patients and associated with improved metabolic profiles. Disappointing results with combination therapy could be related to use of inappropriate levothyroxine and liothyronine doses, resulting in abnormal serum free T4:free T3 ratios. 

That is a bit confusing to say “evidence suggests it is generally not superior to levothyroxine monotherapy”. What about the clinical presentation of patients shown every day in the offices of doctors over the past 50+ years?  Why have so many thyroid patients on levothyroxine for example, been put on anti-depressants, statins, BP meds, pain meds and more?

The Medical Dictionary defines “clinical presentation” this way: The constellation of physical signs or symptoms associated with a particular morbid process, the interpretation of which leads to a specific diagnosis.

Why has there been such a gap between what a doctor learns in medical school /continuing education vs. the clear clinical presentation by millions that underscores how poorly T4-only really has been?

As far as those “disappointing results” which Dr. Wiersinga mentions, informed thyroid patients have the answer: low iron and cortisol issues–both issues which all-too-many levothyroxine patients acquire due to being a poor treatment, and which either T3 or natural desiccated thyroid will reveal. Or, the patient is held hostage to the TSH lab test, leaving them underdosed, and again, many acquire either low iron and/or a cortisol problem.

Dr. Wiersinga concludes in his abstract:

However, in selected patients, new guidelines suggest that experimental combination therapy might be considered.

We agree and bravo!!

But Informed thyroid patients have a strong reply: why limit a better treatment to only “selected patients”?? Why continue to put each and every thyroid patient on one of five thyroid hormones, which more than 50 years have revealed has been an abject failure in too many, sooner or later?

Why not put the majority of your thyroid patients, not a “selected few”, on a medication which gives back the exact same hormones that one’s thyroid would be making in the first place, aka Natural Desiccated Thyroid Hormones? “Selected patients” should only refer to those who may need T3-only since they could have a conversion problem. 

The full article also describes three paradigm shifts, plus a proposed fourth one:

1)   1891, when the real gland (sheep at the time) was first used to treat hypothyroidism. bottle1

2)   1960 — 1988, when desiccated thyroid use declined and levothyroxine use increased

3)   the 1990s, when it was reported that T3 was needed after thyroid removal (but wasn’t pursued)

(See Chapters 1 and 2  in the revised STTM book for more excellent information)

And the 4th paradigm shift might occur, he explains, when those of us with poorly functioning thyroids could see regeneration from embryonic stem cells, as outlined in a 2012 study. Pretty exciting!

But I think a 4th paradigm shift has already occurred! A growing body of doctors have changed the way they treat hypothyroidism, and it’s by prescribing natural desiccated thyroid. As a southerner would say “Bless their little souls!!”

Until the possibility of stem cell treatment of our hypothyroidism becomes a reality, which may not be soon enough, we all hope to see better understanding by our physicians about what treatment really hasn’t worked well, and what treatment really does.

i.e. doctors need to return to the observation of “clinical presentation” 

Adding T3 to our treatment, and especially with natural desiccated thyroid, has changed lives. And we can at least shout “Bravo” to  Dr. Wiersinga for positively proposing that Endocrinologists consider the fact that perhaps, T4-only is NOT the way to go and adding T3 just might be for very good reasons. And by the way, thyroid patients also know that the TSH lab test is as much a failure as T4-only.  

Seize the Wisdom!

Yours truly,

Janie A. Bowthorpe

Post Script: The full article can’t be found in most places yet, but here is one place where the charge is less than others if you want to see it: http://www.readcube.com/articles/10.1038%2Fnrendo.2013.258

 

 

 

 

Dr. Melnick discusses alarming article from Harvard about the use of the TSH and thyroid treatment!

(Note: if you are reading this via email notification, do NOT reply to the email if you want to comment. Click on the title of the blog post, which will take you directly to the blog post. Scroll down to comment there.)

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P4089852Dear STTM Blog readers, I am so fortunate to talk to many wonderful individuals because of Stop the Thyroid Madness. And recently, I had a conversion with the very insightful Dr. Hugh Melnick of New York City.

Dr. Melnick brought my attention to a very disturbing article titled “For borderline underactive thyroid, drug therapy isn’t always necessary” that came from the Harvard Health Letters in October 2013, You can see it here: http://www.health.harvard.edu/blog/for-borderline-underactive-thyroid-drug-therapy-isnt-always-necessary-201310096740.

This conversation between Dr. Melnick and I may be of great interest to STTM readers, besides alarming once you see what is being stated in this article and suggested as treatment guidelines. It’s simply Thyroid Treatment Dark Ages!

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JANIE: Hello Dr. Melnick. I’m so glad to chat with you! Can you tell our readers a little about yourself?

DR. MELNICK: I am a reproductive endocrinologist who has been in medical practice since 1976. As the medical director of Advanced Fertility Services In Vitro Fertilization Center in New York City, I have always been impressed by the large number of  infertile women that I have seen over the years, who are symptomatically hypothyroid, and who conceive after treatment with thyroid medication.

Although I did my medical training at a point in time when the TSH test and Synthroid were just being introduced into clinical practice, I was trained by one of the most widely respected endocrinologists of that era, Herbert Kupperman, MD, Ph.D. to diagnose and  treat patients with potential thyroid issues according to their symptoms, rather than solely by their blood test results.  His vast clinical experience, and subsequently mine, as well, is that treatment with Natural Desiccated Thyroid (NDT) gives far superior symptomatic improvement for the vast majority of patients. Furthermore, the dosage of thyroid medication should always be based upon a patient’s clinical symptoms and not the TSH level.

JANIE: That greatly impresses me when I learn of doctors like yourself who understand the efficacy of Natural Desiccated Thyroid as well as the problems with using the TSH lab test.  You recently brought my attention to what was written just a few months ago by Heidi Godman, the Executive Editor of Harvard Health Letter (see introduction above). Can you expound on what Ms Godman meant by “borderline underactive thyroid”? 

DR. MELNICK: Actually, Ms. Godman is mistakenly defining hypothyroidism by TSH levels, rather than by a patient’s clinical symptoms. It is obvious that there are many symptomatic and genuinely hypothyroid individuals, who have normal TSH levels, and who experience relief when given a proper dose of the appropriate thyroid medication. The TSH level only diagnoses a type of hypothyroidism that is due to failure of the thyroid gland itself, or a failure of the pituitary gland.

In my experience, the most common form of hypothyroidism is called subclinical because the TSH levels are in the “normal range.” It is a genetic condition, usually passed through the mother and manifests itself later in adulthood. In subclinical hypothyroidism, the individual’s cells need more active thyroid hormone–T3–than their bodies are able to produce in order to function properly. Therefore, supplementation with a thyroid medication containing T3, in the proper dose, will relieve the troubling symptoms and allow the cells to function optimally.

Again, basing the dosage of thyroid medication on TSH levels is incorrect. When treating hypothyroidism, we are not treating a condition like diabetes, in which the insulin dose is based upon the patients’ blood sugar levels. Although they are both endocrine disorders, they are vastly different conditions and cannot be treated in the same fashion, although many endocrinologists still insist on doing so!

JANIE: In the article, Godman quotes that prescriptions for levothyroxine have increased from 50 million in 2006 to about 70 million in 2010, and a similar increase has occurred in England and Wales. She then calls this increase in treatment “pretty risky business”, citing irregular heart rhythms, insomnia, and loss of bone density”. What is she implying there?

DR. MELNICK: I think that the observed increase in the use of the thyroid medication Synthroid is due to the fact that hypothyroidism is a very common condition, affecting at least 35% of the female and 10% male population.  Considering the population estimates for 2013 is 317 million people in the U.S.A. and the population of the United Kingdom is estimated to be 70 million, 28% of the population in the U.S.  and 23% of the population in England, (assuming one prescription per year per individual patient) are being treated for hypothyroidism. This is actually a bit less than the estimated incidence of hypothyroidism in this country. I also believe that more cases of hypothyroidism are being found because people, in general, are more informed about the symptoms of hypothyroidism and seek treatment.

In my opinion, Ms. Godman erroneously categorizes treatment of hypothyroidism a “pretty risky risky business”. The risks of not treating hypothyroidism is, in fact, more potentially injurious to a patient’s health! 

For example, the increased risk of heart disease in untreated hypothyroid individuals is a solid example of why hypothyroidism needs to be treated. The examples that she cites, namely, irregular heart rhythms and insomnia, are found in many people with hypothyroidism before treatment and are cured by adequate thyroid treatment. The symptoms that she mentioned are not exclusively associated with hyperthyroidism. The loss of bone density claim comes from studies of hyperthyroid individuals, who because of their hyperthyroidism and excessively high metabolic rate, may develop osteoporosis.

JANIE: The next part of this article is alarming. It refers to a particular “clinical practice guidelines” authored by Endocrinologist Dr. Jeffrey Garber, an associate professor of medicine at Harvard Medical School. These guidelines come from a task force representing the American Thyroid Association and the American Association of Clinical Endocrinologists. The first guideline is as follows, and goes completely against what informed thyroid patients know to be wise. Can you comment? 

1) The best way to check for hypothyroidism is to look at the level of thyroid stimulating hormone (TSH) in the blood, and when the TSH level is above 10 mIU/L, there’s uniform agreement that treatment with levothyroxine is appropriate. 

DR. MELNICK: Firstly, clinical practice guidelines are merely suggestions that have been developed to help physicians with limited experience diagnose and treat medical issues. Clinical guidelines are like a cook book, which describes a recipe that makes a simple meal, but not necessarily a complex and elaborate feast. That said, it is quite obvious that the way in which I diagnose and treat hypothyroidism is quite different than that which is suggested by the above referenced societies.

Although I do perform a complete battery of blood tests, including antithyroid antibodies, iron, vitamin B12 and vitamin D levels, I believe that a clinical approach – listening to a patient’s symptoms and treating a patient accordingly – is, in some ways, more important in diagnosing and properly treating patients suffering with the symptoms of hypothyroidism. If a physician only looks at a patient’s blood tests, without listening to the patient’s symptoms and asking them appropriate questions, many people who legitimately need thyroid medication will be denied proper treatment. That is precisely the reason that so many people come to me suffering with all the classical symptoms of hypothyroidism and tell me that their doctors have tested their thyroid and found them to be “within normal limits”.

It is not surprising when these very same patients experience symptomatic improvement when treated with adequate doses of NDT. I rarely treat patients initially with Synthroid. The primary reason is that Synthroid, being a synthetic T4 (a weak thyroid hormone- not chemically identical to human T4), must be converted into T3, the potent form of the hormone that enters every cell in the body and makes the cells of the body function normally. Unfortunately, many individuals are unable to successfully convert T4 into T3, so the patients’ symptoms remain, yet the TSH level is normal.

Natural desiccated thyroid (NDT) is made from the thyroid glands of pigs, which produce thyroid hormones chemically similar to that found in humans and does contain T3. Porcine (pig) thyroid gland also contains other thyroid hormones and proteins, which, in my experience are much more effective in relieving the symptoms of hypothyroidism than synthetic T4.  Who can argue that a natural treatment, if availble, is to be preferred over a synthetic one.

JANIE: I loved the analogy above to a cook book, Dr. Melnick! Garber’s second most-emphasized guideline is the following, and I would love for you to comment on this as well, as informed thyroid patients would find this very disturbing, as well: 

2) If the TSH level is between 4mIU/L and 10mIU/L, treatment may still be warranted in various situations:  

  • if the levels of actual thyroid hormones in the blood–known as thyroxine (T4) and triiodothyronine (T3)–are abnormal
  • if the bloodstream contains anti-thyroid antibodies that attack the thyroid. These antibodies would indicate a hypothyroid condition called Hashimoto’s disease, in which the immune system mistakenly attacks the thyroid.
  • if there is evidence of heart disease or risk for it. 

Garber is next quoted as saying “Use thyroid hormone for a brief period of time.”  and “If you feel better, you can continue with treatment. If not, then stop.”  That recommendation is quite alarming as well, as it fails to understand that it may not be about stopping thyroid medication, but moving over to a far better treatment with natural desiccated thyroid, which informed thyroid patients know should have been the first treatment of choice anyway. Can you comment? 

DR. MELNICK: In my clinical experience, 99% of patients with TSH levels over 4.0 are quite symptomatic, if questioned about their symptoms properly. Therefore, treatment is absolutely mandatory, both to relieve “quality of life symptoms” as well as to prevent heart disease, lower blood pressure, normalize blood sugar and cholesterol levels, if they are found to be elevated.

Dr. Garber’s recommendations about using thyroid medicine for a short period of time and continuing it if improvement is noted omits two essential factors. The first is that since he treats his patients only with Synthroid, a significant percentage will show no improvement because their symptoms are not relieved because they cannot convert T4 into T3. The second factor is that by following TSH levels in the blood, a patient may not actually be taking a high enough dose of thyroid medication, yet  will show low TSH levels in the blood. The level of thyroid hormones circulating in the blood-whether they are bound or free- only indicate absorption of the medication and give no indication as to the amount of T3 entering the cells. When an individual gets enough T3 into their cells, their symptoms will improve.

The only way to measure the correct dose of thyroid medication, in addition to noting improvement in symptoms, is by measuring the Basal Body Temperature and by the measurement of nerve conduction velocity (Thyroflex Test). This is a noninvasive test  which gives a good indication of dosage adequacy. The slower the patient’s nerve conduction velocity, the higher the dose of thyroid medication that is required.

One main point that must be noted is that thyroid medicine may take up to twelve weeks in order to experience some degree of symptomatic relief. The other is that the patients’ dosage should be increased gradually and in divided daily doses until symptomatic relief is  experienced. The dose should be reduced if the patient experiences rapid or irregular heartbeat, shakiness or anxiety. These symptoms will resolve in several hours and are not harmful.

Hashimoto’s or autoimmune thyroiditis is a much more complex clinical condition, in that symptoms in many individuals may vary, from hypo to hyper from time to time. Treatment with thyroid hormone is usually needed, but some patients, in the early stages of thyroid autoimmunity, may be fairly asymptomatic.  As the condition progresses, symptoms will eventually be experienced. The levels of antithyroid antibodies do not correlate with the severity of a person’s symptoms.  Antithyroid antibodies never disappear and will always be detectable in the blood.  There may also be gluten sensitivity in some instances, so dietary factors may be important. When an infertility patient is found to have antithyroid antibodies, whether they are symptomatic or not, I always treat them with NDT since it does help them to conceive and seems to reduce the incidence of miscarriages.

JANIE: Heidi Godman then states the following about individualized treatment for hypothyroidism, which informed thyroid patients know by years of experience is a recipe for disaster: That requires measuring TSH four to eight weeks after starting treatment or changing a dose, another TSH test after six months, then every 12 months.”  

DR. MELNICK: I respectfully disagree with both Ms. Godman’s  formula as stated above, as well as with Dr. Garber’s method for diagnosing and treating hypothyroidism. Although the Harvard Medical School is a very prestigious institution, and that the information that they published cited the work of a physician of professorial rank, it is quite contrary to my own clinical experience and that of the many untreated or inadequately treated individuals who suffer with the many debilitating and disturbing symptoms arising from thyroid hormone deficiency.

I say this in jest, but if a patient follows the treatment protocol advocated by Ms. Godwon, they are more like to die of old age before their symptoms of hypothyroidism begin to show signs of clinical improvement .

JANIE: Your last sentence was excellent, Dr. Melnick. Your sage observations and wisdom jive with over a decade of successful patient experiences and wisdom! And we must push AGAINST the guidelines suggested by Dr. Jeffrey Garber. Informed thyroid patients know how disastrous they can be!

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