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Category: Patients

An Endocrinologist peeks through, RAI disaster, and why synthetic T4 is only a mirror image

The clueless Cuckoo’s Nest of Endocrinology just goes on and on, according to repeated negative comments by thyroid patients in groups after they have visited with an Endocrinologist. i.e. you will be put on T4-only and dosed by the TSH, then told you are just fine and only need an antidepressant or statin or BP med.

But in a recent issue of the Clinical Thyroidology For Patients (A Publication of the American Thyroid Association), Volume 5, Issue, 5, 2012, there comes the question: Should patients with no functional thyroid gland be treated with both thyroxine (T4) and triiodothyronine (T3)?

Of course, the question is like asking “Should those starving be given food? ” The article starts out stupid, stating (in bold):

  1. “…the absence of T3 production by the thyroid can be overcome by maintaining higher circulating T4 levels, resulting in normal circulating levels of T3. This is why T4 in the form of levothyroxine is the main treatment for hypothyroid patients”. Patients all too well know how ludicrous this is.
  2. “Recent studies have generally found that there is no clinical advantage in adding T3 to the usual T4 replacement regimen.” What about this study which reveals that there can be inadequacy of peripheral deiodination of T4 to T3 in some, or this study which found no support for the hypothesis that people with symptoms of hypothyroidism but thyroid function tests within the reference range benefit from treatment with 100 µg thyroxine daily, or this study which found that triiodothyronine added to thyroxine improved mood and neuropsychological function, and more.

But then comes the little peek from the door by the MD author after mentioning the 2011 study titled “Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients.” The concluding paragraph has this in it:

The present study identifies a subgroup of hypothyroid patients, namely those whose thyroid was surgically removed who do not have normal FT4 and F3 levels despite normal TSH levels on T4 alone. What is not shown by this study is whether or not combination therapy (T4 plus T3) is beneficial in these patients. Further studies are needed to sort this out.

Further studies are needed?? They are already out there! Besides, if 99% of Endocrinologists would use the proverbial toothpick to open up the eyelids of their minds, they just might notice all the continuing hypothyroid symptoms their patients have while on T4-only meds whether STUDIES prove anything or not. WAKE UP!!

MAN-MADE SYNTHETICS ARE ONLY A MIRROR IMAGE OF THE REAL THING

Scientists have always been able to synthetically duplicate substances by creating the same mix of molecules, aka a synthetic copy of the original compound. That’s what levothyroxine (l-Thyroxine) is a man-made copy of T4 (Thyroxine). Synthroid is an example. But it’s a mix of the left handed nature-made combination of molecules, aka L-(Laevorotary), along with the synthetic, man-made right handed version, aka D-(Dextrorotary), i.e. the latter is a mirror-image, not a direct image, according to this article.

The author feels it doesn’t act like a hormone. So though your blood will show you have an increased level of levothyroxine, it’s not the same as having an increased level of the natural t4. And of course, we as thyroid patients also know that the body is NOT meant to live on a storage hormone alone, even if it was pure. We also need direct T3 added to that T4. Even natural desiccated thyroid provides direct T3. So with natural desiccated thyroid, we get T4, T3, T2, T1 and calcitonin.

REFLECTION ON WHY RAI WAS THE WORST THING SHE EVER DID

Read thyroid patient Robyn Thompson’s story on why she so regrets doing RAI (Radioactive Iodine), and how her Graves TSI antibodies are now worse than ever before, here: https://stopthethyroidmadness.com/robyns-experience-with-rai-graves/

HOW TO PROTECT YOUR ADRENALS IN THE FACE OF STRESS

I loved what thyroid patient Joy McHargue said to someone on the STTM Facebook group when asked what to do about high stress. Her answer: Pray, salt, magnesium, rest, adaptogens of your choice, Vitamin C, talk about the stress to a calming person, take time away from the stress doing something fun regularly, epsom salt baths, fresh air?

THE STOP THE THYROID MADNESS BOOK IS NOW EVEN MORE REVISED!

I added info about the T3 Circadian Method for Adrenal fatigue, refined information throughout, and cleaned up misspellings. You can order the book at the bottom of any page on STTM, or via the tiny photo.

JANIE’S LATEST INTERVIEW: http://podroom.a2zen.fm/podcasts/krystalya-marie-energy-healing/stop-the-thyroid-madness-with-janie-bowthorpe-on-e

P.S. If you are receiving this via the Email Notification, DO NOT reply to the email to comment on this post. Click on the title of this, which will take you to the actual blog post, and Comment there!

3 replies

Change is slow: the everlasting frustration of thyroid patients, and this one in particular

In the daily emails I get from folks, some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

Her email today was titled OMG, THANK YOU!!!!!!

She explains that for twenty years, she has been sick, fired doctors, had them fire her for being “uncooperative in my treatment”, and more. And today, after finding STTM, she wants to cry, laugh and “talk out loud to all those charlatans who call themselves doctors”.

And I completely identified with her. I remember those 20 years myself where I went from doctor to doctor to doctor, enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful–all in the attempt to find out WHAT WAS WRONG WITH ME.

Today, after finding STTM, she exclaims: “the relief of finally being vindicated after all those years!”

She continued: “Most of the time they didn’t even have enough integrity to admit they didn’t know…they would just look at the paperwork and say,”well, the lab work looks fine.” Then would come the implication that it was all in my head.”

She spent hours and hours of online research (boy does that sound familiar) and her breakthrough after too many years of poor doctors came with a single old school family doctor who ordered the cortisol test. And finding the patient-to-patient STTM was the final victory.

I wish I had had something like STTM, once upon a time. But so be it. The kind of long term suffering I endured, as well as many others, is the reason STTM was compiled and created, and patiently sits there, waiting for each and all who are STILL in the same boat to find it.

She ended her email with “Thank you! Thank you! Thank you!” And all of us who have been there, and have finally found our sweet spot thanks to PATIENT WISDOM as outlined on STTM, say “You’re welcome”.

24 replies

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.

15 replies

Should thyroid patients avoid self-treatment at all costs??

STTM Self-treat(This post has been updated to the current date and time. Enjoy!)

When STTM first put out its shingle in December of 2005, my goal with this site was simple: to educate thyroid patients based on the experience and wisdom of thyroid patients worldwide. Since then and today, STTM has always been the Mothership of those experiences and wisdom from which all other sites borrow their information. lol.

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 some are willing to prescribe it. Or even adding T3 to T4. Or being on T3 alone. 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 report feeling frustrated, angry and sick because of doctors. Progress is slow.

I am lucky, as I’ve always managed to have an open-minded 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 or criticize them. If a patient’s doctor refuses to connect the dots, refuses to understand the importance of T3 in one’s treatment…or if a patient can’t afford one who will prescribe correctly, it’s understandable In fact, I will not support other advocates who criticize patients who feel forced to self-treat, as I remember one in particular has done repeatedly. Granted, a few who make their own choice to self-treat can run into problems, most especially from undiscovered or undiagnosed low iron or a cortisol problem. But it’s a choice they seem to make out of desperation.

The following post is by a 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…

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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/

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

** Come on over to Like the Stop the Thyroid Madness Facebook page for daily wisdom, information and camaraderie!

50 replies

Glad to see some reason creeping in with thyroid patient discussion!

IMG_2564If you have been keeping up with my posts, you’ll know that thyroid patients have been facing a shortage of desiccated thyroid for many weeks, probably due to sharp increased demand i.e. thyroid patients have been finding out how lousy T4-only treatment like Synthroid has been for them, and how much better desiccated thyroid is.

That demand became especially true after a reformulation of Armour by Forest Labs in 2009 drove patients to RLC’s Naturethroid and Westhroid. The “new” Armour caused a return of hypo symptoms plus new maddening ones, including palpitations and sleep problems never seen before. As Julia Roberts said in the 1990 movie Pretty Woman: Big mistake, Big, Huge.

In addition, it didn’t help when Time Cap Labs, a pharmaceutical which made plenty of desiccated thyroid for other pharmaceuticals, stopped production after being contacted by the FDA. This action was probably in line with their aims to make long-term unapproved drugs become approved, even if the timing was incredibly stupid.

As all the above was happening, panic ensued!

We’ve heard all varieties of negative presumptions from thyroid patients about what caused the shortage, including an FDA conspiracy and an overt belief that desiccated thyroid is about to be removed. Patients have threatened law suits, blamed pharmaceuticals, and/or sent numerous letters to FDA pleading to keep desiccated thyroid as if it was to be gone tomorrow. Even I, at first, fell in line wondering about the FDA.

But it started to dawn on me, as it has others, than we have been jumping the gun, not giving enough emphasis to facts and reason.

And finally, facts and reason are starting to appear on blogs and groups:

1) Yes, Forest Labs, the makers of Armour, and RLC, the makers of Naturethroid and Westhroid, state they have not been contacted by the FDA. We have no reason to disbelieve them!

2) Yes, RLC is working hard to catch up, as is American Laboratories, both state. We also have no reason to disbelieve them!

3) Yes, thyroid patients who know the superiority of desiccated thyroid have always been there to support them. Glad to see that recognition in blog and group postings.

4) Yes, as health writer Mary Shomon has stated, information-gathering, brainstorming, and communicating with our doctors is a good thing to be doing. That is contrary to making panicky negative predictions about desiccated thyroid, rallying for law suits, and feeding ideas to the FDA that may not be there in the first place.

5) Yes, we need to put energy in letting the world know about the superiority of desiccated thyroid treatment in our lives. That is where our power lies in the face of clueless Endocrinologists and their equally-clueless medical boards like AACE.

6) Yes, we need to listen to and support the pharmaceuticals and laboratories which give us the desiccated thyroid we need. It’s they who have to walk the line with the FDA. Let’s listen to their cautions and support them.

Strangely, there are still misconceptions being reported by patient blogs and posts:

1) That we don’t know what caused the shortage. But we do! Demand is as logical as it gets. All of us have succeeded in getting the word out! That is exactly why I created STTM in the first place! And by emails I get every week, it’s clear that it’s been working.

2) That groups like the Coalition for Desiccated Thyroid (CDT) have a wait-and-see attitude. That is as silly as saying STTM wants to ban T4 or encourages self-treatment. There are simply some thyroid patients who don’t agree with the extreme panic and negative presumptions that have been going on, and want more reason in our pro-activity! Patients have been encouraged to spread the word in any way possible about the superiority of desiccated thyroid and how it’s changed lives, NOT to feed dire negative predictions which only end up giving ideas we don’t want to give! You are most welcome to join the Coalition above in addition to other groups.

Good for patients and advocates alike for putting more reason and fact in this situation.

I’m also glad to see some strategic, pro-active behind-the-scenes work going on as a just-in-case line of activism. That is the way it should have always been–a plan for action “just in case”, not dire predictions and fear mongering as if it all WAS going to happen.

We’ll get through this, folks. Here are options for thyroid treatment in the meantime. And if you want to talk to other patients, join our thyroid patient Community Call this Friday. Details are found in the September 7th blog post.

37 replies