hypothyroidism tags

As a hypothyroid patient, think you are fine drinking that purely fine mineral water from a plastic bottle? Think that fluoride and chlorine are the only substances we need to worry about when it comes to our thyroid health?? Think again.

Thyroid patient Amy McMullen, who has contributed before on STTM’s blog as a GUEST POSTER (Confessions of a Undercover Thyroid Advocate) and has a passion about human rights, has written another important article below which should be of keen interest to all of you.

BPA—A POWERFUL ENDOCRINE DISRUPTER THAT AFFECTS YOUR THYROID

Perhaps you have read recently about how the chemical Bisphenol A (BPA) is found to be prevalent in our food and water. As a hypothyroid patient, I was surprised to see that not all articles about this harmful substance adequately describe the connection between thyroid function and BPA. This is an oversight that should be addressed since hypothyroidism is estimated to affect over ten million people in the US and this number is growing. It makes perfect sense to look to environmental toxins as a likely culprit in this serious health epidemic.

BPA is a synthetic estrogen and an endocrine disrupter that causes multiple health problems. There are over 200 studies linking it to breast cancer, obesity, attention deficit disorder, early puberty in girls, genital abnormalities in boys and girls alike, polycystic ovary disease and infertility in women and prostate cancer in men. Studies indicate that up to 92% of Americans have BPA in their urine. Also BPA doesn’t leave the body quickly; fasting adults still had BPA levels in their bodies after 24 hours.

BPA comes from many plastic sources. It’s used as a hardener in plastic manufacturing. Many tin cans have plastic linings that contain BPA including soup and tomatoes, and it’s also in plastic water bottles, some infant formulas and canned juices. BPA is also found in PVC water supply piping.

How does BPA relate to thyroid disease? According to a several good studies, BPA is a thyroid receptor antagonist. This means that BPA will interfere with the binding of the thyroid hormone T3 with cell receptor sites. This will cause hypothyroidism, not only with people with under-functioning thyroids but also for those who are currently taking medications for hypothyroidism or even those who have normally functioning thyroids. BPA was found to accumulate in many organs when injected into rats including the lung, kidneys, thyroid, stomach, heart, spleen, testes, liver, and brain. In this way, BPA has the potential to interfere with thyroid hormones in each organ that has accumulated the substance. A study also indicates that the levels of BPA that are considered safe (upper limit of emission is set to 2.5 ppm [µg/liter], which is more than 90 µM) are high enough to inhibit thyroid hormone receptors. Yet another study shows that BPA appears to accumulate in rat fetuses in significantly high levels and disrupts thyroid function in baby rats.

There’s also evidence that BPA may influence the metabolism of endogenous steroids, which may be a factor in adrenal fatigue and its treatment, as well as and its treatment, as well as dysautonomia stemming from adrenal problems. Many with hypothyroidism also suffer from co-morbid adrenal fatigue and BPA may be a contributing factor in this.

What this means for everyone, but especially for thyroid patients, is every effort should be made to remove BPA from food and water supplies. For those who are not able to get properly optimized on their thyroid meds or who are finding they are suffering from hypothyroid symptoms despite normal levels of TSH, free T3 and free T4, consider BPA as a possible source of the problem.

Steps you can take to minimize you exposure include:

• Avoid all canned foods with plastic liners and avoid bottled water. Buy your canned tomatoes in glass jars, not metal cans or stick to using fresh ingredients. Most other canned foods use BPA as well, especially green beans (Here is a list of BPA-free canned foods).
• Drink water out of glass or stainless steel containers (and make sure there’s no plastic liner or lids that have BPA) or BPA-free plastic. Low density polyethylene bike bottles contain BPA.
• Do not microwave foods in plastics or use plastic wraps when microwaving. Avoid polycarbonate (“PC” or #7 and #3) plastic food containers altogether.
• Since most municipal water piping is PVC and some houses have it as water supply lines, consider installing a reverse osmosis system for your drinking water. This will also remove fluoride and chlorine (other thyroid disrupters) and many other harmful substances from drinking water.

Most importantly we need to make our voices heard that BPA is not an acceptable substance and that its use in our food and water supply must cease. Recently Senator Feinstein introduced a ban on BPA to the Food Safety Modernization Act but this was modified to remove the ban due to pressure by industry groups. Senator Feinstein still has an effort underway to ban BPA from child drink bottles and toys and several states have enacted such bans but this does not go far enough.

Contact your representatives today and let them know that a national ban on BPA must be enacted. If they don’t listen then I suggest you make yourself heard at the ballot box this November.

************************************************

• Have you cut down on your exposure to Fluoride? Buy non-fluoridated toothpaste as a first step.
• Cut down on more chemicals by using baking soda under your arms rather than commercially-made underarm deodorants. Note that the baking soda may at first cause redness, but it will go away within days and is a great way to kill odors.
• Have a pounding heartrate that you can’t explain? You may be making too much RT3.
• Check out typical Questions and Answers about thyroid treatment and related issues.
• Want to write a GUEST BLOG POST on STTM? Go here.

I have lived in the United States my entire life.

And there are other countries I have felt were similar to my own as far as being modern, forward-thinking, and intelligent. The United Kingdom is one.

But there is one area in the UK that is as close to the Dark Ages as it gets: the treatment of all forms and degrees of hypothyroidism.

Because of the British Thyroid Association (BTA) and the Royal College of Physicians (RCP) ‘guidance’ on the Diagnosis and Management of Primary Hypothyroidism, most UK doctors refuse to prescribe any form of  T3, whether adding synthetic T3 to one’s T4, or using natural desiccated thyroid, either because they have fallen in line like ducks in a row, or they fear for their job.

Why? Because “overwhelming evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism, and we do not recommend the prescribing of additional Triiodothyronine (T3) in any presently available formulation, including natural thyroid extract, as it is inconsistent with normal physiology, has not been scientifically proven to be of any benefit to patients, and may be harmful”.

Anybody puking yet??

And, says thyroid patient advocate Sheila Turner of TPA-UK, “never has the RCP, BTA  produced any of the ‘overwhelming evidence’ they claim as supporting the use of T4-only, even though they have been asked to do so on numerous occasions. Overwhelming evidence supports the use of synthetic T4/T3 and natural thyroid extract.”

And don’t think it won’t happen where YOU live. Stupidity can abound.

What to do about it?? Answer a short questionnaire, created by Sheila and TPA-UK, which is for those with symptoms of hypothyroidism when treated with T4-only, who then tried a T3 thyroid hormone product with success. “The results of this questionnaire will enable us to create the first ‘World-wide Register of Counterexamples to Levothyroxine (T4) – only therapy’”, underscores Sheila. “The objective is to draw attention to the dire need for an urgent re-examination of the existing protocol for the diagnosis and management of the symptoms of hypothyroidism.”

Don’t wait until stupidity and narrow-mindedness comes to where you live, as it also has in the country of Columbia, where Cynomel (T3) was retired more than 10 years now.  Give this a voice NOW to head it off at the pass.

P.S. While you are at it, sign up with Dr. Skinner’s World Thyroid Register.

*****************************************

The STTM patient-to-patient website needs your help! I had to move the website to a far larger server in order to handle the immense amount of visits this site gets. And a larger server means higher yearly costs to host it. I can’t do it alone, as my money tree was killed by pine beetles and my husband won’t tell me what his Swiss Bank Account number is. So your donations can help keep Stop the Thyroid Madness up and running for yourself and other patients just like you! If you appreciate STTM, please go here to make a donation to the hosting fees. I do not get it! The hosting company does.

The large size STTM t-shirts are now gone. If you can wear an X-large or XX-large and want to spread the word to others, go here. And the bumper stickers REALLY catch attention!! I am stopped in parking lots because of mine. YOU could change someone’s life!

The Contact Me page on STTM hasn’t been working for weeks. And I didn’t know it.  But it’s fixed now.  Remember: it’s not to ask questions about your personal treatment. Those need to go here.

The STTM book helps in your doctor’s office. Have brain fog? Many patients are telling me they take the book right in the office, bookmarked. I can’t promise how your doctor will respond, but it’s been positive for most when a book is referred to right in front of the doc. I hope it helps you, too.  P.S. Only books ordered directly from the publishing company get a bookmark of updated info. That’s also true if you have a book sent to a relative or friend.

I always know that when I get an email from Dr. John C. Lowe, it’s going to contain excellent information. And he didn’t let me down.

Dr. Lowe is Editor-in-Chief of Thyroid Science, an “open-access journal for truth in thyroid science and and thyroid clinical practice”.  And in the recent issue, there is a remarkable and precise TSH (Thyroid Stimulating Hormone) hypothesis by none other than a brilliant UK  electrical and electronics engineer, Mr. Peter Warmingham.  In fact, his hypothesis about the TSH lab result when treating one’s hypothyroidism exactly corresponds to the successful experience of thyroid patients all over the world.

To quote Dr. Lowe in his introduction about Warmingham’s paper (FYI: “exogenous” refers to the thyroid hormone you give yourself;  ”endogenous” refers to what happens naturally in your body):

Mr. Warmingham’s hypothesis is straightforward: When a hypothyroid patient (whose circulating pool of thyroid hormone is too low) begins taking exogenous thyroid hormone, a negative feedback system reduces the pituitary gland’s output of TSH. This decreases the thyroid gland’s output of endogenous thyroid hormone, and despite the patient’s exogenous thyroid hormone’s contribution to his or her total circulating thyroid pool, that pool does not increase—not until the TSH is suppressed and the thyroid gland is contributing no more thyroid hormone to the total circulating pool. At that point, adding more exogenous thyroid hormone will finally increase the circulating pool of thyroid hormone. The increase must occur for thyroid hormone therapy to be effective. The patient’s suppressed TSH, then, does not indicate that the patient is over-treated with thyroid hormone; instead, it indicates that the patient’s low total thyroid hormone pool will finally rise to potentially adequate levels.

In other words, when your doctor says no to an increase in your desiccated thyroid simply because your TSH lab result is, or would become, below the so-called normal range (and in the presence of continuing symptoms or a low temperature), he will usually end up keeping you hypothyroid! i.e. making an ink spot on a piece of paper more important than clinical presentation is just one reason why the current thyroid patient revolution represented by Stop the Thyroid Madness exists!

You can read Warmington’s entire paper here on Dr. Lowe’s site. For further information on the fallacy of the TSH lab test, go here or read Chapter 4, aka Thyroid Stimulating Hooey, in your copy of the STTM book for more detail.

P.S. Dr. Lowe is probably right on when he says he expects criticism to flow for the fact that Warmington is not an Endocrinologist and “how in the world can anybody but an Endo make a logical hypothesis about the TSH lab test”. Read more on Lowe’s thoughts about this here.   But enlightened thyroid patients around the world are collectively shouting “GOD BLESS AN ELECTRICAL ENGINEER!”

I had a fun interview by the vivacious and interesting Jimmy Moore of the Livin’ La Vida Low Carb Show. If you haven’t yet heard it, you can listen to Jimmy and I by clicking right here.

Jimmy Moore is a living success story about the benefits of a low carb diet–losing 180+ pounds in 2004 and regaining his health and vitality.  As I do about far better thyroid treatment,  Jimmy has been on a one-man mission to tell the whole world what livin’ la vida low-carb can do for them.

Eating low carb can be a very important strategy for those with hypothyroidism, especially while on desiccated thyroid and seeking to reverse the damage of being on T4 meds like Synthroid, et al.

And for those of you with adrenal fatigue, following Jimmy’s low carb life style can be very beneficial when you need to be on cortisol, which can cause weight gain for some, but is an important treatment for your low cortisol situation.

Have a great day!

(Note: this is a long post, but will be worth every penny if you read it all!)

When STTM first put out its shingle in December of 2005 (with most of what you see today going up in ’06 and ’07 with continual additions),  my goal with this site was simple: to educate thyroid patients.

And as I saw it, by educating patients on what we had been learning, patients could in turn, take that information into their doctors offices and push for change. And it’s been working, slowly. We now have more doctors than ever before who know about desiccated thyroid and are willing to prescribe it, even if they are the minority. STTM has a page on how to try finding one of those good docs.

But as I wrote about this fact in my previous post, certain patients can still find themselves frustrated, angry and sick because of doctors. It’s not a pretty picture for some.

I am lucky, as I’ve always managed to have a fair doctor to work with, without complicated issues. But a lot of patients aren’t as lucky.  They either can’t find a doctor to treat them correctly after trying repeatedly, or they simply can’t afford to keep driving to find a good doc (with no promises that they will get the good doc they desperately need anyway). As a result, many thyroid patients report being forced to self-treat.

Even though STTM was never created as a self-treatment site, I am aware that some patients use it that way.  And I can never condemn them. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low ferritin or low cortisol. But it’s a choice they seem to make out of desperation.

The following  post is by  Guest Blog poster and UK’s thyroid patient advocate Sheila Turner of TPA-UK.  These are her courageous thoughts concerning self-treatment, and her angst against anyone who tells patients not to do so.  Overall, UK patients have a very tough situation in the UK with doctors, but so do the vast majority of patients around the world, as well as US patients. See what you think…

*********************************************

It’s not uncommon to be told as a suffering and debilitated thyroid patient to never self-diagnose, never self-treat, never self-monitor.

And in an ideal world, we could take those admonitions on. But we are not living in an ideal world.

You might as well tell everybody with ill health to put up with whatever they are suffering and leave their health in the safe hands of our ‘wonderful’ doctors whom we can trust implicitly.  Sadly, many doctors have little (or no) education in the workings of the thyroid system.

Or, you might just try touring the country until you find one who will help. Well, if you have the energy and the money to do that, it could take a heck of a long time before finding such a good doctor – indeed, IF you ever find such a doctor.

I run a very successful Internet Thyroid Support group, plus web site for thyroid disease, and I have seen at first hand (and experienced it myself) the nightmare of having to put up with the terrible suffering caused by Doctors.

In the UK, for example, it is organizations such as the Royal College of Physicians and the British Thyroid Association who have terrified NHS doctors so much that they now no longer prescribe any T3 hormone containing products, neither natural nor synthetic, for fear of being reported to the GMC  regulatory body with the threat of losing their career and livelihood.

One comment I hear from those who condemn self-treatment is the problem of over-medicating. In reality, it is the reckless prohibition of all T3-containing drugs that causes cardiac arrhythmia and risk of  sudden death -  which would amount to at least manslaughter, and might even constitute murder if the outcome is strictly foreseeable - which it is. It is NOT patients who should be criticized. They have been driven to buying prescription medicines for thyroid and adrenal insufficiency. Criticizing self-treatment is an outrageous claim and one that the medical regulators would no doubt be delighted to hear. Seems that not only are doctors becoming sorely afraid of the Regulators, those who condemn self-treatment are also falling into the same trap.

The “basic premise” that underlies my own purpose and advocacy is to help those being left to suffer because the medical regulators and government are refusing to give a proper diagnosis – and for those who do get a diagnosis, giving them levothyroxine sodium-only as a thyroid hormone replacement.

Whenever a new member comes to TPA, we encourage them to read, read and read again and to look at the information in our FILES section which is there for all to see. We tell them about the associated conditions that go along with being hypothyroid such as low adrenal reserve, systemic candidiasis, mercury poisoning and ask them to request blood tests from their doctor to see if their levels are low in the reference range for ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. We have information on the reasons they need to check these and if any of these are a problem, make sure they are aware of just how essential it is that they eliminate these conditions, one by one, before starting thyroid hormone replacement – such conditions are NOT automatically checked by NHS doctors – and they put their patients at great risk by automatically prescribing levothyroxine.

We all know of the serious ramifications for those patients who are not being given a correct diagnosis or treatment. However, it is the endocrinologists and medical regulators who are guilty of causing much of the unnecessary suffering, not those patients who are driven to self diagnose, self treat and self monitor, as those who criticize self-treatment would have us believe.

Mainstream doctors do not appear to be even aware of the many common and often undiagnosed symptoms and dangerous consequences of low thyroid. These include: serious mental problems, seizures, heart disease, diabetes including misdiagnosis and complications, constipation resulting in colon cancer, all female problems (due to high amounts of dangerous forms of oestrogen), including: tumours, fibroids, ovarian cysts, PMS, endometriosis, breast cancer, miscarriage, heavy periods and cramps, bladder problems leading to infections, anaemia, elevated CPK, elevated creatinine, elevated transaminases, hypercapnia, hyperlipidemia, hypoglycemia, hyponatremia, hypoxia, leukopenia, respiratory acidosis and others….

If sufferers of the symptoms are NOT getting a proper diagnosis and the thyroid hormone replacement that would give them back their life and health through mainstream doctors, how on earth would you recommend they do this, apart from scouring the country to find a doctor elsewhere who would help them, or recommending they get enough money together to see a private thyroid specialist. Do you REALLY have such complete faith in the medical profession to know that we should ALL leave our thyroid health in their hands, sit back and do nothing – and probably just wait to die? How can you recommend that they do NOT buy prescription medications and should not self-medicate, self treat or self monitor when there is NO other option left open to them.

If those who criticize self-treatment have personally heard from “DOZENS” of people who have followed the “increase my own dose of natural thyroid” self medication approach, then yes, something is seriously wrong with the `teachings’ or advocacy of such groups. Education should be encouraged by all, and if members do not understand the reasons why they need to take great care, such explanations should be given in such a way that they understand.

I rarely hear of members ending up in Emergency Rooms battling potentially fatal heart arrhythmia’s, atrial fibrillation, and/or ending up in worse health than before, including long-term and permanent heart damage through self-treatment. I have heard of many NHS patients being admitted to A and E, who had been treated (or not) by mainstream doctors who refused them the correct therapy their symptoms needed.

In good conscience, I do recommend that thyroid patients self-diagnose, self-medicate and self-treat if they are being left to suffer, because organizations such as the RCP, BTA TSH reference range is so huge that they will never go outside of it. This reference range is 0.5 to 10.0 in the UK – probably the widest in the world. Then, we have to put up with the fact that the only thyroid function test that will be done is the TSH – and doctors will not test Free T4 in a lot of cases, never mind free T3 level. Also, NHS Pathology labs refuse to test free T3 even if the doctor has specifically requested it. So, many of us will NEVER get a proper diagnosis – being left to suffer their unnecessary symptoms for years and become wheelchair/bed bound in many cases, having to leave paid employment.

Such patients are told they have a `functional somatoform disorder’ when their TFT’s are normal, when they continue to complain of symptoms – or – those who are lucky enough to get a diagnosis, who are treated with levothyroxine only yet still complain of debilitating symptoms are told also “you have a functional somatoform disorder” or “your symptoms are non-specific” .

What mainstream doctors do not recognize is that thyroid function tests ONLY test the amount of thyroid hormone being secreted by the thyroid gland.  TFT’s (more correctly should be called Thyroid GLAND function tests”, do not test to show whether there is peripheral resistance to the thyroid hormones at the cellular level. This is not due to a lack of thyroid hormones secreted by the gland. Blood tests do NOT detect Type 2 hypothyroidism. Type 2 is usually inherited. However, environmental toxins may also cause or exacerbate the problem. The pervasiveness of Type 2 has yet to be recognized by mainstream medicine, but already is in epidemic proportions. I think many sufferers of the symptoms of hypothyroidism know very much more than their medical practitioners. I do know which road I would like to follow – that is to find an excellent doctor I could trust implicitly, but sadly, the ONLY road many of us have to follow to get back normal health is the one where we have to self medicate.

Please do NOT blame patients who are driven to self diagnose and medicate as being the reason why the US government, or any other government for that matter, are now eliminating the availability of natural thyroid and synthetic T3. You are being sucked into believing what they want you to believe.

Levothyroxine is a synthetic medication that can be patented, and has made billions of pounds for the Big Pharma and for the regulators of hypothyroid guidelines. Natural thyroid products cannot be patented. Should doctors prescribe either synthetic or natural T3, the majority of sufferers of the symptoms of hypothyroidism would regain their normal health – Big Pharma would suffer.

You should perhaps read the book “Dirty Medicine” by Martin J Walker if you have not already read it. Those who criticize self-treatment appear to be accusing all those suffering symptoms of hypothyroidism who have been driven to buying medications without prescription and self treating as making it worse for the rest of those suffering. It is NOT them who are abusing T3. If a T3 hormone containing product was properly prescribed, there would be NO NEED FOR PATIENTS TO BE SELF MEDICATING.

Self medicating, whatever drug we are taking, whether using a T3 hormone containing product or not, is always risky and patients must be fully educated in its use. However, self medicating with any drug runs risks, but I would rather self medicate with the chance of getting my health back than leaving my health in the hands of totally incompetent doctors – incompetent because the teachers in our medical schools are incompetent.

For those who are being left to die, without the treatment that will make them well, do-it-yourself medication is the only option left open to them. Would you really deny them this?  Leaving patients without the thyroid hormone they need is appalling and one of the reasons TPA is campaigning to bring about changes in the diagnosing and treatment of the symptoms of hypothyroidism.

It can be appreciated to say to work with the right doctor, but what do you recommend if patients cannot find the `right’ doctor?? Perhaps you should all come over here to the UK and help those sufferers in finding the right solution and offer to help them help to find a “good doctor”.

Sadly, there are never any solutions given or alternative to self diagnosing, self-treating or self-monitoring, other than to “find a good doctor”. This does not help Internet thyroid support forum members.

Sheila
http://www.tpa-uk.org.uk/