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The Gray Areas of Reported Patient Experiences

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Did you know that years of reported patient experiences, which the Stop the Thyroid Madness website and books are about, has gray areas and has NEVER represented…

stern black and white rules.

narrowly defined methods.

…beliefs over experiences.

Additionally, Stop the Thyroid Madness has…

…never been about making something up based on strong opinion of a group’s owners.

…never, ever been about negativity towards you the patient for daring to think outside the box. It’s that daring that resulted in the very solid information based on our experiences that has been compiled on STTM!

Instead, Stop the Thyroid Madness is a compiled site and books of information about “here’s what patients have reported repeatedly over the years which worked and why that got them well” which is ultimately for you to become your own best advocate as you work with your doctor.

Here are a variety of examples of those Gray Areas of Patient Experiences (with a few Givens) below:

Related to hypothyroidism:

SYMPTOMS of HYPOTHYROIDISM: It varies! For example, while most may see weight gain or difficulty losing, a small minority can’t gain weight at all. Or while many have energy issues, others are fine yet have rising cholesterol or rising blood pressure. On and on. See all possible reported symptoms here.

OPTIMAL AMOUNT OF NATURAL DESICCATED THYROID (NDT): It varies! It is RARE to be optimal below 2 grains. Others (and more than the latter) start being optimal in the 2-3 grain area. And others are optimal in the 3-4 grain area. (Janie is at 3 3/4 grains, as just one example) Some are optimal in the 4-5 grain area and up. On and on. The given: in spite of the different amounts, optimal nearly always seems to put the free T3 towards the top part of the range (notice the word “part”–it’s never an exact number), and the free T4 around mid-range for the vast majority (and this occurs with optimal cortisol aldosterone–you can’t get optimal without having problems if cortisol and aldosterone aren’t optimal, too. Read about optimal!

OPTIMAL AMOUNTS OF T3-only: For those on straight T3, and with the right amounts of iron and cortisol, patients report feeling their best, without any negative results, when their free T3 is at the top of the range, and some report even slightly over. That was huge information. But the gray area was always how much T3 meds achieved that complete removal of symptoms, and which didn’t backfire later due to being on too little. Some see it at 50 mcg; others at 60 mcg, or 70 mcg, or 80 mcg…and some have to get into the 100’s of mcg of T3 to finally get rid of all their symptoms and maintain that. Read about optimal

T4-ONLY USE: A strong gray area we noticed: “some” who started on T4-only like Synthroid or Levo did better; others never did well from the beginning. But one given that patients on T4 were admitting to–symptoms creep up the longer they force their bodies to live for conversion alone. T4 is not the active hormone: T3 is. And there are too many variable that will eventually inhibit the conversion of T4 to T3. And a healthy thyroid gives some direct T3.

Related to lab work

WHEN TO DO THYROID LAB WORK IF ON NDT or T3: No, it’s not about a specific set of hours. For several years now, we learned it’s about taking our meds one day as usual (which is often two times a day for NDT, and three for T3, but there are variations—those gray areas), then doing labs first thing the next morning. Why? After taking either NDT or T3, our free T3 levels are going to peak anywhere from 2-4 hours according to a variety of literature and observations…and then a slow fall for up to 12 hours–also in a variety of literature. We want to see what we are holding onto and doing it the next morning has worked well. The only exception to taking our NDT or T3 the day before labs is that we “may” want to bring an evening dose to the afternoon, just in case. Not set it stone, but we do lean that direction to move the evening dose to the afternoon the day before we do labs. Bottom line: it’s not about a rigid range of hours before doing labs the next morning.

THE TSH LAB TEST: Now it’s a given that using the TSH to diagnose by can leave millions with clear hypothyroidism undiagnosed. Why? It doesn’t rise at first when one is very hypo! Patients have seen that repeatedly over the years. And when an optimal amount of T3 and NDT, it’s a given that for a high percentage, it will be below the range…but the gray area of being below range is where below range it will end up for each individual. P.S. we found it’s never about dosing by the TSH anyway. It’s about the free T3 and free T4, plus removal of symptoms, a good heartrate and blood pressure, etc.

Related to adrenals

WHO GETS AN ADRENAL PROBLEM: The gray area is that not everyone gets a cortisol problem while being poorly treated on T4, or being underdosed on T3 or NDT. But subjective observation reveals that a LOT do. Here’s a few ways people find out…also check out Chapter 5 in the updated revised STTM book.

WHEN THE FIRST SALIVA SPIT IS DONE IN THE MORNING: No, it is NOT a specific time like “30 minutes after waking”. It has always been somewhere “right after waking up” in the morning. That could be literally after you wake up naturally for the day, or five minutes later, or ten minutes later, etc. Not specific but the given is soon after waking up for the day.

SUPPLEMENTS TO LOWER HIGH CORTISOL: No, it’s not taking a massive amount of known cortisol-lower supplements, like five of this along with five of that along with five of another. 15 pills?? No! What a great way to stress your liver. A high % of those trying to lower high cortisol report success doing it on just one particular supplement where the high is occurring. One example is Holy Basil, and as reported for many, just two capsules does the trick for a particular high, or three capsules does the trick. A much less percentage report needing four or so. Some report combining supplements, like one holy basil and one Relora, or two each…etc. It just varies and they all work if enough is taken, is appears Here’s a page about this and there’s even more in the revised STTM book

LENGTH OF TIME TO LOWER HIGH CORTISOL: Lowering high cortisol is typically NOT about taking supplements for months and months (Gray area: high ongoing stress like lyme, poorly managed autoimmune, infections, etc. may required extended treatment). High cortisol can often come down in a matter of a week to a few weeks. We also treat the cause while lowering it.

OPTIMAL AMOUNTS OF CORTISOL SUPPLEMENTATION: Gray areas! With HC (prescription hydrocortisone given via your doctor) and women, it appears the majority end up at 30 mg (after doing DATS aka Daily Average Temps as we learned from Dr. Rind). But some find their optimal amount at 27.5, for example, and perhaps a smaller bunch right at 25 mg. Some even end up 32.5…all the latter after doing those Daily Average Temps to find their correct physiologic amount. It’s not as common, we’ve noticed, for a woman to need 35 mg, but we figure it could happen. Note that for what appears to be many, if they are going up that high, it’s because they have inadequate aldosterone that needs discovery and treatment.

Related to iron

OPTIMAL AMOUNT OF IRON: Over the years, it appeared to female patients who reported back that optimal for their serum iron seemed to be “close to” 110 in those kind or ranges, or “around” 23-24 or so in those ranges which only go up to the upper 30’s. Note the qualifications with quotes–those gray areas. For example, with the first range, some were just fine at 107, or 106, or 105, and etc. Gray areas for iron.

Related to symptoms

HAVING HYPER-LIKE SYMPTOMS: this seemed to be an area that had different causes–those gray areas. For some, hyper-like symptoms were due to having low cortisol, causing a release of adrenaline. Some, though not all, felt them with high cortisol. Another cause of hyper-like symptoms: just being hypothyroid due to being undiagnosed, or being on T4, or being underdosed on NDT or T3, releasing excess adrenaline. And another gray area was how people experienced the high adrenaline. Some state anxiety feelings; some state palps; some state high heartrate; some state shakiness; some notice little. Please, if you ever had concerns about your heart, we hope you will work closely with your doctor.

Related to Hashimoto’s

HASHIMOTO’s: Here contains a little gray area…Namely, though the vast majority will have antibodies to prove they have Hashi’s (both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them–a given), there’s this small body such as 5% who have none! The latter has to prove it via an Ultrasound!

HASHIMOTO’S AND IODINE: though some overreact to the detox from iodine and see their antibodies go up, another body has stated that it was iodine alone that brought their antibodies down! Gray areas! The bottom line: many have to prepare for the detox better–see this. And some have to go low and slow. Read iodine information from experts like Dr. David Brownstein, Dr. Guy E. Abraham, Dr. Jorge D. Flechas..

HASHIMOTO’s AND GLUTEN: Yes, though it has always appeared that the vast majority need to be off gluten, as it makes the antibodies worse as well as inflammation, there have always been a small minority who had no negative issues whatsoever with gluten and haven’t for a long while. Gray areas! As always, there are strong opinions, but it doesn’t take away the facts that some do fine. But everyone should decide for themselves.

Related to Lyme disease

LYME DISEASE: One given is that for all too many with “active” Lyme, patients noticed their RT3 went up and up from either T4-only or the T4 in NDT. That only makes one more hypothyroid since RT3 is an inactive hormone. So many have stated they lowered their NDT or T4 to a small amount and made it up with the majority being T3. Some are on T3 alone. And the gray area?? A small body of Lyme patients on T3 seemed to report needing that free T3 slightly above range, even if others state they were doing okay with it slightly below but “towards the top”.

The above is just a partial list of the gray areas in patient experiences. It’s not all black and white, rigid, or rule-bound as it can often be reported in some groups. Hope that helps! Use STTM to work better with your doctors!

  • A list of pages on Stop the Thyroid Madness is here–to help you counter potentially bad information. If you already have the STTM books, the same will help.
  • Why T4-only has caused millions of people problems, sooner or later. It’s up to you.
  • How patients learned to read their labwork.

GET THE UPDATED STTM BOOK HERE: https://laughinggrapepublishing.com/

 

20 Ways that Hypothyroid or Hashimoto’s Patients are Gaslighted

It would make an incredible horror movie. THE PLOT: stunningly convince hundreds of millions of individuals worldwide that what isn’t a good thing, really is. That what appears to be so, isn’t.

Or that leaves only look green because of alien filters in your eyes. That ripe apples fall because invisible evil hands pull them down. That fire doesn’t burn your skin–it’s only your imagination, so ignore the fake pain and blisters.

That giving you only one of five thyroid hormones…a storage hormone called T4 with the name of Synthroid, Levothyroxine, Eltroxin, Oroxine, etc…is all you need to adequately treat your hypothyroid state.

Because if those in authority say so, it must be so…right?

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The gaslighting of hypothyroid patients for decades

If you have never heard of the term “gaslighting”, it describes a form of manipulation by an individual or enterprise. The result is to cause you to doubt your own intuition, intelligence, perceptions and natural wisdom.

Here’s what gaslighting does:

  • implies a person in authority knows what he or she is talking about or doing, over your own inner wisdom and observations.
  • makes you question your own self
  • makes you second guess what is going on and your own perceptions
  • spins a false interpretation of reality.
  • tries to put the blame on you
  • makes you feel crazy
  • is a way to benefit the person or enterprise pushing the delusion for their own aims.

20 ways that Hypothyroid or Hashimoto’s patients are gaslighted–which ones are you?

  1. Authoritatively putting you on only one of five thyroid hormones as if it’s an adequate treatment, as if relying solely on “conversion” to get T3 is all you need (Yet all along, there was a proven treatment that contains all five thyroid hormones, including some direct T3, called Natural Desiccated Thyroid. But of course, you aren’t told, or it’s efficacy is grossly misrepresented)
  2. Telling you that Synthroid or Levo etc is the gold standard of hypothyroid treatment i.e. adequate, easy to dose, reliable, then sending you off into the world (Yet for all too many, sooner or later, T4-only meds have been problematic for millions, in their own degree and kind, for over five decades, as reported by patients worldwide about themselves, relatives, friends, etc)
  3. Implying the TSH lab test, aka Thyroid Stimulating Hormone, is a reliable way to diagnose or dose by. (The TSH is a pituitary hormone, not a thyroid hormone, with a lousy “normal” range, and with a history of lagging behind for years and thus preventing diagnosis, and more)
  4. Implying that those continued symptoms, whether at the beginning or the longer you stay on T4-only, are somehow your fault, about your life situation, or in your imagination (examples in #5, #6, #7, for example. See the best list of symptoms on the net)
  5. Telling you that you need to “eat less” or “exercise more” (as if easy weight gain is totally your fault or in your control, instead of the fault of a poor treatment with T4, or the use of the TSH)
  6. Sending you to a therapist (as if your hypothyroid-caused depression isn’t related to your T4-only treatment…when it definitely can be… or can be due to the lack of a diagnosis)
  7. Saying your afternoon fatigue is due to “being a mother” or “part of getting older” (yet we see that need for a nap go away for the majority once optimal on NDT or T3 with optimal iron and cortisol)
  8. Implying that you have “separate” conditions which now need more medications only (like rising cholesterol, higher blood pressure, depression, fibromyalgia, and more…all which can be clearly related to a poor treatment and which either go away or improve, say many patients, once they have T3 or NDT in optimal amounts)
  9. Stating that Natural Desiccated Thyroid (with all five hormones) is outdated and thus a reason to avoid it (Hmmm. Then I guess so is listening to the radio, talking to people live on the phone instead of on Facebook, or sending a real birthday card instead of an internet one…should be avoided since they are outdated.)
  10. Saying you’ll get heart or bone issues if your TSH goes below range while optimal on NDT or T3 (Patients have noted that it’s not only normal for the TSH to go that low when optimal, but they see improved bone and heart health! A low TSH on NDT is NOT the same as a low TSH with Graves disease!)
  11. Stating that it’s rare for anyone to be above 2 grains, aka one grain is 60 or 65 mg depending on brand, so your continued symptoms aren’t related (Yet there are many patients who aren’t optimal until the mid-or-upper 2’s, or in the 3-5 grain range. It’s individual where optimal falls.)
  12. Implying that continued hypo symptoms while on NDT or T3 proves they aren’t needed (There are understandable and correctible reasons.)
  13. Stating that Natural Desiccated Thyroid is not for Hashimoto’s patients (which is contrary to the majority of Hashi’s patients on NDT who have reported great gains once they get up to their optimal amount)
  14. Stating that iodine is the worst thing for every and all Hashimoto’s patients (in spite of those with Hashi’s who discovered that iodine lowered their antibodies if they used it correctly with supporting nutrients. It’s individual and each Hashi’s patient has to find out for themselves).
  15. Saying that NDT or T3 for those over 60 is dangerous (yet many patients this age range report huge improvements from using it safely and wisely, such as starting low, building in small doses, watching labs, learning how to read labwork, etc)
  16. Implying there’s no such thing as adrenal fatigue/hypocortisolism (yet many get low cortisol, as proven by saliva testing, due to the inadequate treatment of Synthroid or Levothyroxine, and suffer from it.)
  17. Stating that the use of hydrocortisone (Cortef) in the presence of extremely low cortisol three or more times (as proven by saliva testing) is dangerous or should be kept low (in spite of how patients have successfully learned how to use HC safely and wisely as outlined in chapter 6 of the revised STTM book)
  18. Underscoring that if you are “in range” with your lab result, you are doing great (We learned that it’s where we fall that has meaning, not just being in range.)
  19. Stating that you should not go by what is said on the internet, such as on Stop the Thyroid Madness (STTM) or the books (in spite of the fact that it’s all based on 15 years of repeated, solid, patient reports and wisdom; can include studies to back it up on several pages; has the support of many other practitioners….etc)
  20. Implying you are a “difficult patient” because you dare to state what you have learned that is contrary to what the doctor says (See Things we have learned)

So you see, the horror movie plot has been a reality for hypothyroid patients.

Like a few years ago. A couple saw the STTM book in my vehicle and struck up a conversation with me. She was on Synthroid; he was on Levoxyl–both T4. They had each been on their T4-only treatment for 12 and 14 years respectively. They felt their hypo was perfectly treated and they believe in their doctors. So the other problems they dealt with were separate: his rising cholesterol, her depression, his fatigue, and her weight gain. But of course, they felt those have nothing to do with their T4-only treated hypothyroid, as some of it was their own fault, and their doctors are right…leaves aren’t really green, invisible hands make ripe apples fall, and fire doesn’t really burn. Gaslighting.

Sad.

  • Check out the best list of hypothyroid symptoms on the net, totally based on reported patient experiences, reliable, and not culled from other cold lists to bulk it up. They can even occur on Synthroid or Levothyroxine, report patients over the years.
  • Have you Liked the STTM Facebook page? One of the most helpful thyroid Facebook page on the internet and based on reported patient experiences and the wisdom gained.
  • See research that can back up what patients have learned (and there is more on individual pages)

P.S. The photo is an actor portraying a zombie. It’s simply to represent a horror show.

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!

*****

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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Touching message from a near-91 year old New Zealand resident who feels his government is keeping him sick…

Screen Shot 2015-08-10 at 10.38.26 AM(Though this post was originally written in 2012, it is still appropriate even today! Enjoy!)

I am impressed if ANYONE over 70 years old is active on their computers, especially because they didn’t grow up with one, nor did their own children. So when I get a message via Facebook from a near 91-year-old man in New Zealand who clearly knows his stuff, I am doubly impressed.

But this story is poignant, aggravating, and the very reason Stop the Thyroid Madness exists–to educate YOU in the face of medical and government leaders who are completely clueless! Do we have to wait for our current crop of government officials to be forced or voted out of office before we see this thyroid diagnosis and treatment travesty stop???

Dear Janie, I am 90 years and 10 months old, and have a TSH of 3.5 . My doctor, using the range of 0.4 to 4, declared me OK and not hypothyroid. This margin is used by the New Zealand Governments Ministry of Health (M.O.H). My letters to the M.O.H. of New Zealand to read the article written by the AACE in America of January 2003 (to bring down the margin to 0.3 to 3.04) were not taken into consideration.

I am a permanent resident in New Zealand. Because of my repeated requests, they even blocked my letters to them, and in the meantime, leaving me suffering. Have been suffering about 3 years with “Chronic Fatigue Syndrome”. Found your articles on the Internet and bought your book Stop The Thyroid Madness.

My doctor gave me Synthroid and when it didn’t work, wanted to raise the dosage. Fortunately I was in possession of the book Overcoming Thyroid Disorders by David Brownstein M.D. and refused. Indeed, I share all the “Common Experiences We All Share” as written in your book . My doctor has even referred me to a Psychiatrist—unbelievable! Of course I told the Psychiatrist who works for the N.Z. Public Health Department straight away that I will have nothing to do with him. Just to do something, he wrote me a prescription for a drug used for people who are lunatic. Gave the prescription to the doctor to throw it in his rubbish bin!

Am now looking for a knowledgeable N.D. but have not succeeded yet . They are either not knowledgeable enough about thyroid disorders or too expensive for my pensioner income. Have obtained dessicated thyroid from a compounding pharmacist, but don’t dare to take it without guidance. In the meantime, I have to eat frequent small meals just to prevent awful anxiety attacks or to feel reasonably well ..and the doctor calls me euthyroid?

Well Janie, that is my story. Am so glad that you have written your book, thanks, and that I just today received it by mail order on the Internet. With my best regards – ****

P.S. Of course you can publicise my letter to you. Hope that it will help a bit in our struggle to get proper treatment and that people all over the world will know how indifferent governments can be.

THINK THIS PROBLEM IS ONLY WITH NEW ZEALAND? PATIENTS AROUND THE WORLD SHARE THE SAME STRUGGLES!

Sheila Turner, a Thyroid Patient Advocate in the UK and creator of TPA-UK, has worked tirelessly to change the DARK AGE medical treatment protocols that UK thyroid patients have to endure. Here is a letter she wrote July 2012 to the President of the Royal College of Physicians in one of many attempts to change the inane poor practices: http://www.tpa-uk.org.uk/Report_RCP_et_al.pdf

DR. JOHN C. LOWE’S WEBSITE “THYROID SCIENCE” BACK UP!

http://www.thyroidscience.com/

JanieSignature SEIZE THE WISDOM

New to this?

* Read why the TSH lab test can be a huge failure.
* See why Synthroid or any other T4-only med can be a problem, sooner or later.
* To read what happens when your brain doesn’t get enough of the thyroid hormone T3, go here.

* To have the Stop the Thyroid Madness revised book in reach for reference, go here.

* To get more tips, inspiration and information, Like the STTM Facebook page.

Electrolytes, Stress, A1C and diabetes, FDA, Las Vegas and more!

I’m amazed at lingering problems since being on T4: Though I’ve been on desiccated thyroid for 8 years, and do quite well since correcting low ferritin twice thanks to the lousy T4-only treatment, I discovered that my RBC magnesium is low, as I suspect my RBC potassium is, as well–all probably down due to chronic economic stress from this lousy economy. But it underscores that we all have to be vigilant and not hesitate to periodically get minerals and electrolytes tested, especially RBC (Red Blood Cells), as well as anything else your doctor recommends, or you read about. Labs you can do yourself are here, then share with your doc. You can read about potassium issues here.

Under stress with the economy or the holidays? When stressed, I love and use the herb Ashwagandha. It’s been used for thousands of years in Ayurvedic healing, helping your immune system and stress response. High dose B-vitamins are said to help counter anxiety and depression. Vitamin C is huge for your adrenals like the B’s, and has been known for years to counter the effects of stress. In fact, stress depletes it, so they state you are wise to raise it when under stress. (Is Vit. C why I never got adrenal fatigue when I deserved to get it? I always took a lot.) Also recommended include the herbs Valerian Root, Marshmallow, Lemon Balm, Chamomile tea, Passionflower, and more. But first do research on any herbs and talk to your doc.

Hypothyroidism can falsely raise your A1C, implying you have diabetes even with normal blood glucose. Just got word from thyroid/adrenal patient Jackie about this study concerning the A1C test, here. In turn, those on thyroid treatment saw their A1C fall. We don’t know what the thyroid meds used were, but imagine even better results if on desiccated thyroid, which many patients report does a much better job than T4, especially in the presence of optimal ferritin/iron and adrenal function.

Don’t be complacent: register yourself: Sheila of TPA-UK is working to create a register of patients who have had continuing hypothyroid symptoms while on T4. After she creates this register of patients, which right now only involves a couple of questions, she will create the a Worldwide Register of Counterexamples to Levothyroxine (T4)-Only Therapy for. Register yourself here. This will also run alongside Dr. Gordon Skinner’s Worldwide Register, which you can also be a part of here.

Listen to a new video produced by the FDA about drug shortages here. I wonder what our own 2009 shortages with Armour and Naturethroid played a role in this video? Wonder if the FDA will ever admit that they were partly to blame for this shortage by shutting down the 2009 generics? Has anything been left out of this video?

No, Las Vegas Review-Journal. Hypo get undiagnosed because of the lousy TSH, not “subtle” symptoms. Yes, this journal did a recent article, quoting AACE as stating half of thyroid patients remain undiagnosed. The article then states it’s probably due to symptoms being very “subtle” or “very similar to other health problems such as anemia, fatigue, depression, slow metabolism and a wide array of other diseases.” GROAN. It would be nice if these articles on hypo got it straight: hypo remains undiagnosed because of the lousy TSH lab test, which too many Endocrinologists worship, and because they fail to noticed the obvious symptoms of a hypothyroid state, which include anemia, fatigue, depression, slow metabolism and a wide array of other diseases. i.e. those ARE the symptoms of hypo, not “other health problems”. When oh when will reporters DARE to state what patients have learned?? (Oh, and guess who included a link to this article in their email Thyroid Weekly? The Endocrinologist-loving, TSH-loving American Thyroid Association.)

Have a great holiday season!!

Janie

P.S. HO! HO! HO! The publishing company will send a book for you to a friend or loved one for a Christmas present. Go here.