tsh tags

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!”

(4-30: Paula has informed me that you can download Dr. Myhill’s complete website to your computer via this zip file: www.drmyhill.co.uk.zip – Windows Live )

Today, it has been announced by the GMC (General Medical Council) of the UK that Dr. Sarah Myhill is now straitjacketed. She is forbidden to prescribe medications, is bound by other medical practice restrictions (see the details on the Support Dr. Myhill Facebook page), and most egregiously, has been ordered to remove parts of her website (thanks to Lethal Lee for pointing this out), some of which you will not see two weeks after I have posted this.

Why remove parts of her website? Because by daring to educate the public, especially if that education goes against “standard medical practice”, it seems to be deemed “harmful”. In other words, you as a patient are not allowed to discover, or are too “vulnerable to get it,  that there just might be a TOTALLY different story to the medical practice you are subjected to.

For example, here is part of a page on Dr. Myhill’s website which is completely correct, informative, and wise, and I want to see her words stay sharp and viewable, especially for thyroid patients. It fits our experience. The page is titled “Test results and what they mean”. If you want to be informed, read all the below.

http://www.drmyhill.co.uk/wiki/Category:Test_results_and_what_they_mean

Only too often people come to me with tests results which have not been properly interpreted. The reasons why this happens are as follows:

• Test results are flagged up and considered to be abnormal if they are outside the reference range, but one’s individual normal range is not the same as the population reference range. This is a particular problem in the interpretation of thyroid tests.
• Reference ranges for tests change. Reference ranges are based on random bloods from the population. The trouble is anyone following a Western lifestyle is not evolutionarily correct and many not normal! So labs change their reference ranges to adjust for this. So, for example, the normal range of a gamma GT used to be up to 36, it is now up to 70. This enzyme is induced by alcohol and prescription drugs and because so many people drink alcohol it is considered normal to run a high gamma GT! The lab I use has a normal reference range for thyroid hormone T4 of 12-22pmol/l but some labs give ranges of 5.6-17pmol/l!
• Tests are often incomplete. So someone with a thyroid stimulating hormone (TSH) within reference range will be told they have no thyroid problem, when in fact one also needs a free T4 and a free T3 together with a clinical history to assess if there is a thyroid problem.
• Drug companies influence normal ranges. The normal range for cholesterol has come down steadily since statins have been such big money earners for Big Pharma.
• Incorrect breakdown of test results. Many people are prescribed statins on the basis of a single cholesterol level. This is faulty for many reas ons – firstly one needs a breakdown of good (HDL) and bad (LDL) cholesterol to get the ratio. If the ratio is not favourable then this is likely to be a symptom of arterial disease. Cholesterol lowering drugs are often irrelevant. See Cholesterol – the common causes of raised levels
• Results close to the limits of normal may be abnormal for that person. For example, a high normal bilirubin may mean Gilbert’s syndrome – this means someone is a poor detoxifier. A high mean corpuscular volume (MCV) could point to hypothyroidism, B12 or folic acid deficiency.
• Normal tests do not mean no pathology. A normal ECG at rest does not mean there is no heart disease, yet many people are told this is the case.
• Tests may ask the wrong question. So many people come to me with severe fatigue syndromes having been told nothing is wrong because all the tests are normal! But ask the right question and do Mitochondrial Function Profile and you find gross abnormalities with respect to energy supply at the cellular level.
• Tests for poisonings are particularly misleading. For years doctors have promoted levels of cholinesterase as a good test for organophosphate poisoning. It is a rotten test and misses the majority of cases! Much better would be Fat biopsy for pesticides or Volatile Organic Compounds

GOOD FOR YOU, Dr. Sarah Myhill!

I and many other thyroid patients, struggling to fight the inane thyroid treatment protocols, have a strong feeling that though this progressive doctor may be restricted as a physician, we’re going to hear a lot more good information from the courageous and wise Sarah Myhill.

I am pleased to note that Mary Shomon of about.com,  who in her blog post on Thursday, April 22, 2010, has not only softened her wording about self-treatment by hypothyroid patients, but has also written expressively concerning surrounding issues. These are also issues which I presented in two blog posts earlier this week concerning the immense problem with doctors as expressed by patients, and self-treatment.

Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize,  self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

• Is self-treatment one  of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
• Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors.  The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more.  It’s not a pretty picture.
• Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less  than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
• Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms.  This is a risk for self-treatment.
• Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation.  It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice.  But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
• Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent  points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
• Has one negative journal article about someone who self-treated “resulted in desiccated thyroid  getting greater scrutiny by the FDA?” The answer can easily be:  no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
• Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it.  STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
2. a new debilitating condition like adrenal fatigue,
3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional,  negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere.

It’s been about a year since Armour desiccated thyroid, a very popular prescription natural thyroid product on the market for decades, was reformulated. Forest Labs stated there were two changes: the raising of cellulose, and the lowering of sucrose.

Why did they do this? It could be strongly related to the fact that in late 2007 through 2008, patients who used the 3 grain tablets reported they were suddenly and entirely ineffective. So, many of us surmise that Forest was attempting to “improve” (cough) their product.

Says one of those patients:  I had switched to the 3 grain tablet months before to save money and I used my pill cutter to cut it in half.  Then around November, my work pants were getting tight and I would come home tired, achy and weak. It didn’t take me long to figure out that Armour in the 3 grain was now like a sugar pill!

In the meantime, Forest brought out the newly formulated Armour, & patients who finished their old batch started the new batch. And since then, it appears a large body of patients have run as fast as they could to Naturethroid, or compounded, or T4/T3 or Erfa. The reason: a return of former hypo symptoms on the “new” Armour.

I have completed an informal survey with 24 individuals responding, and asked the following questions. After each question, I give a summary of the answers.

1. How long of doing well occurred on the newly reformulated Armour before you started to notice that you weren’t doing well?

Most answers are in the area of 2-3 months, with three saying a month, one 4 months, and three stating a few weeks. And comparing this to comments we’ve been seeing for the past year on patient groups, it’s common to feel good at first, but to crash within that 2-3 months.

2. What clued you in that you weren’t doing well on the new Armour?

The answers are all over the map: fatigue and exhaustion, hair loss, brain fog, weight gain, sleeping problems, constipation, achiness, depression, hormonal problems, moodiness, dry skin/elbows/thumbs and cracking skin, flaking fingernails, heart irregularity, forgetfulness. Five report skin breakouts similar to poison ivy.  Fatigue and hair loss were the most common answers.

3. Did you try raising it? What were the results?

The majority tried raising it, and results were: no results; barely made any difference: more energy but skin was a mess. The majority said nothing happened. Two doubled it with no significant results.  Two developed fast heart rate with no improvements elsewhere. One had to lower it because of a very low TSH. One stated she raised it to get her labs back up to where they were before…with little improvements.  And one said it made her too hot to continue raising it.

4. Did you try adding T3 to it? What were the results?

All said no. One said she tested here RT3 ratio and it was 11, which is bad.  One stated she asked her doctor for T3; he said no. I’d sure like to find someone who did add T3 who could tell us the results.

5. Did you do anything else to try and make the reformulated Armour work, and did it help?

All reported nothing helped enough.  Many stated their doctors tested for other problems, ranging from heavy metals, low iodine, B12–the latter helped one gal’s tingling. One stated her doc put her on Aprotocol for the digestive tract which helped the constipation but nothing else changed. One added compounded desiccated thyroid to her Armour—it didn’t help. One gal tried Thyro-care, which helped. But she and two others report getting a poison-ivy like skin rash on the new Armour.

Currently, we see newly diagnosed patients put on the new Armour, and veterans can’t help but wonder what will happen to them.

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On my April 17th blog post, read 10 reasons thyroid patients are still frustrated, angry and sick. That is followed by the April 19th blog post Should thyroid patients avoid self-treatment at all costs, with an interesting and strong Guest Post by Sheila Turner of TPA-UK and a good followup to the former 10 reasons post.

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It’s a continuing travesty, and you see it in patient groups.

i.e. many patients still find themselves sick and disabled, stumbling miserably from one uninformed doctor to another…in spite of the wonders of natural desiccated thyroid, the testimony of changed lives, the education of patients thanks to the STTM website & book, and a small but growing body of wise doctors who seem to be “getting it”,

So what’s the problem?? It lays with our doctors and the entire medical profession.

1. Heavy-handed control over your medication: You go to pick up your prescription, and find your medication has been lowered by your doctor without your agreement or knowledge, as happened to Terry here (scroll down to find her post).
2. Ignorance about adrenal fatigue and treatment: You clearly have an adrenal problem, and one doctor dismisses its existence, another doctor poo-poos the saliva test, another doctor tells you cortisol supplementation is dangerous, another doctor thrusts all his herbal supplements at you, another doctor thinks that 5 or 10 mg cortisol is enough…and on and on and on.
3. Dismissing the Ferritin test: You want to know what your ferritin is, but the doctor’s nurse underscores that they’ve already checked your iron levels, so there’s no need for more testing.
4. Dismissing you: You are wise thanks to reading, researching and living in your own body, yet your doctor calls you a problematic patient on your charts, dismisses you, or gets angry.
5. RT3 huh? You have strong suspicions that your Reverse T3 is too high thanks to adrenal fatigue, low ferritin, undiagnosed gluten issues, or other reasons, yet this doctor refuses to test you, that doctor says an RT3 excess is rare.
6. Look at me! Look at me! You make an appointment with that great doc who has a fabulous website/book and who shouts that he uses desiccated thyroid with a big smile…yet any or all of the above and below occurs with him/her or his “trained” associates.
7. Continued worship of the TSH lab test:  Too many doctors still think the TSH lab test is from God Almighty. So when you finally start to feel well on desiccated thyroid with a TSH at zero or below…WHAM…you must lower your meds because you are somehow “hyper” in spite of no symptoms to match.
8. Pharmaceutical addicts: You mention your lingering hypothyroid symptoms, and you are bandaided with anti-depressants, anti-anxietal meds, statins, BP pills, pain tablets, acid reflux pills, calcium for your thinning bones…instead of understand that these are ALL side effects of poor treatment or undiscovered issues.
9. The country you live in: The desperation of UK thyroid patients is deep thanks to a thyroid association and a College of Physicians which tightens the screws if a doctor dares to prescribe a life changing medication with T3 in it.  Or just as frustrating, having a government which forbids desiccated thyroid to arrive to you in the mail.
10. Reformulations and Big Pharma apathy: Forest Labs turned one of the most popular and effective desiccated thyroid brand, Armour, into a pill with too much cellulose and too little sucrose , causing a massive return of symptoms in many, sooner or later. RLC also reformulated their Naturethroid, and though some patients still do well on it, others do miserably, and we are left wondering WHAT to take. (Thank God for Erfa’s Canadian “Thyroid”, but will we be able to continue with this fabulous desiccated thyroid product?)

And there are more reasons you might want to bring up in the Comments part of this post.

So you see, it’s no wonder so MANY patients feel forced to self-treat, yet they are also condemned for doing so. I refuse to condemn them for exactly the reasons above.  Petty. All I ask is that we all try to find a good doc, but it may be quite hard when you consider all the above.

All-in-all, we still have  a way to go, baby, and especially with the doctors we try so hard to get help from…but can’t.

P.S. Are you brave? Walk into your doctor’s office with the STTM shirt.