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What this site is: what this site is not

Off and on, I hear about a particular individual who has criticized this site for being a “self-treatment” site. I can only chuckle in dismay at that kind of hollow criticism and misinformation. So I want to explain what this site is, and what it is not.

This site is here to tell the world that patients have figured out that T4-only treatment does NOT work (anymore than an elevator in a 50 story building, which only rises to the 5th floor, “works’), and neither does dosing by the TSH. It is here to tell hypothyroid patients that they are not crazy for feeling awful on thyroxine treatment–that their depression, lack of stamina compared to others, constipation, dry skin and hair, high cholesterol….and SO many other symptoms, is due to a lousy medication and a poor adherance to a bad lab called the TSH and total T4.

Additionally, this site is here to tell patients, and hopefully doctors who are willing to listen, what we have learned! We are passing along INFORMATION, which I would say is the MAIN emphasis of this site.

This site also makes it clear that patients here are only expressing opinions, and the information presented is NOT intended to replace the relationship and personal medical advice between the patient and his/her doctor. It is meant to counter BAD information out there, and to provide YOU the patient with information to bring to your doctor so you can receive BETTER care.

Additionally, this site continually refers to the page called HOW TO FIND A GOOD DOC. We want you to find a good doc!

And here’s what we are NOT: we are not a “self-treatment site”. Does that mean that folks who choose to self-treat can’t get good information here? Nope. They can. Because this is a site of information to empower thyroid patients. But this is not a site that pushes patients to self-treat. If anyone uses this information to self-treat, that is THEIR choice, and is at their OWN risk.

And I will state that I totally understand why some patients turn to self-treatment. They do it because they can’t find a doctor who will put them on Armour; or, they can’t find a doctor who will pay attention to their screaming symptoms when labs are “normal”; they can’t find a doctor who will stop dosing them by the TSH alone: they can’t find a doctor who will pay attention to the free T3; they can’t find a doctor who understands about sluggish adrenals………and so on. Thyroid patients are sick and tired of being sick and tired at the hands of particular doctors who haven’t, and don’t understand what is going on!! And I CANNOT, and WILL NOT, criticize that. This site will support those who want to find a doctor, and will support those who make the personal choice to self treat!

So, we are doing our best here to spread the word about a MUCH better medication and a better treatment for doctors to use with their patients, to help patients be MUCH better informed when they enter the door of their doctors, and to help patients find a MUCH better doctor through the page mentioned above. Here’s raising my glass to PATIENTS, and to DOCTORS willing to listen, because we have walked a path to a much better life..and we are hoping you are LISTENING.

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Patient EXPERIENCE is the evidence. Are doctors listening? Nope.

“The majority of people with hypothyroidism taking thyroxine are satisfied that it works. This is a simple matter of fact, not my opinion or bias.”

Cough. The above comment came directly from the keyboard of a doctor. He was conversing with someone in the discussion behind an online dictionary entry on desiccated thyroid. And as you read the entire conversation, you clearly see that this doctor firmly believes that “thyroxine works well for most people with hypothyroidism.” He also adds “Whether you like it or not, it is the simple truth, supported by many types of evidence.”

And guess what the “evidence” was!! Ready?? Here goes: “Published trials, experience of doctors, and sales figures.” Wait. I need to highlight that: “Published trials, experience of doctors, and sales figures.” 😆 😆 😆

Yessiree, doctors certainly have their eyes open.

Frankly, if it wasn’t so sad, it would be hilarious. And the reply by the other person: “Since when is evidence ONLY found in trials, doctors and sales figures, and not also in the experience of patients??? ….it really does besmirch the intelligence and experiential accounts of a growing body of patients out there who are spreading the word of their experience. It reminds me of the patient who comes in saying they have a stomach ache after eating four Milky Ways, and the doctor saying there are no “trial, observations, or sales figures” to support the claim of a stomach ache, so the stomach is dismissed while the patient walks out in agony with her sample anti-depressants in hand.”

Couldn’t have said it better. Because there is profound evidence right in front of the noses of every single doctor that T4-only treatment does NOT work, and desiccated thyroid IS working. Us!

But the insult continues. In a recent article in the Baltimore Sun about natural vs. synthetic products, it was stated: ” There is no evidence, however, that the animal extracts have any advantage over the synthetic versions, according to the American Thyroid Association.”

Yikes. Does any of the above tell you why patients have lost SO much respect for doctors, the American Thyroid Association, or the American Association of Endocrinologists…to name a few?

WE ARE THE EVIDENCE. Open your eyes.

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Adding T4 to NDT…and more mistakes we had to learn from!

STTM 2006 to 2015Update: The blog post below was originally written in 2006, when I, Janie, was learning just like the rest of you!

But there are five key points that I, and all of you as fellow thyroid patients, had to learn that go against what I originally said below.

Those points involved iron labs like ferritin, your FT4 lab result, adding T4 to NDT, and what menopause can do to your optimal amount of Natural Desiccated Thyroid (NDT.)

Here are five corrections to my original 2006 blog based on a myriad of patient experiences and wisdom since then:

1) You can never just go by Ferritin alone

Ferritin is your iron storage hormone. Yes, it can be low along with low serum iron. But we’ve discovered it can also be low from having HIGH iron (aka hemochromatosis), or having high heavy metals from the MTHFR mutation. And you wouldn’t know if you have either of the latter if you ONLY went by you Ferritin lab result. You’ll see all the iron labs we found were important on the Recommended Labwork page.

2) It’s not a good idea to get your free T4 towards the top of the range (along with that free T3)

This was a huge discovery based on many of our experiences, including mine! i.e. the higher in the upper part of the range we got our Free T4, the more likely our bodies were going to start converting that T4 to Reverse T3 (RT3) to clear it out. RT3 is an inactive hormone. So as your body starts making that RT3, you will find yourself more hypo and/or with hyper symptoms. For me, upon getting my FT4 higher, my BP started rising!

3) Conversely, it has NOT been a great idea for most of us to add synthetic T4 to our Natural Desiccated Thyroid

Instead, we found it important to simply raise NDT high enough to get rid of our hypothyroid symptoms, and it has worked great for the vast majority just by itself. NDT is 80% T4 anyway! There may be individual cases where adding T4 to NDT has worked, but one has to be very careful, since you you risk having the T4 turn to RT3, the inactive hormone.

4) Ladies: The amount of NDT that worked for you before menopause may not work afterwards

I’m a good example. I was at 4 grains before full menopause (and even experimented with 4 1/8 grains) in 2006 and did fine. But that’s because I was severely estrogen dominant at that time (which binds some of those thyroid hormones). When I ceased to be estrogen dominant after meno, 4 grains was too high for me, and even caused a buildup of RT3. I did much better at 3 1/2 grains.

5) There are many great brands of NDT besides Armour to consider (it was the most popular in 2006, but there are now many great brands to look at).

All those brands are listed here. Besides, in 2015, Armour tripled in price and some patients also reported it had changed since their symptoms were coming back. See this blog post about the 2015 problems with Armour.

And here are key points I wrote about below in 2006 which are STILL TRUE today:

1) An optimal amount of NDT puts the TSH below the range (and we don’t experience bone loss or heart problems, as some clueless doctors will proclaim)

2) An optimal dose of NDT seems to put our free T3 towards the top of the range and our free T4 around mid-range, and it works great for most.

3) Going through peri-menopause can confuse things.

4) Most patients report it worked well for them to completely drop their Synthroid/T4 medication when starting on NDT…or to drop it fairly soon after starting NDT.

JanieSignature SEIZE THE WISDOM

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P.S. Here’s my original 2006 post below. What you see in RED represents information that our experiences and wisdom corrected, which is above.

When I switched from Levoxyl to Armour on one day in July of 2002, the difference in my well-being was so stunning that I never looked back. In fact, I was so stunned that I started an internet talk group about natural thyroid hormones in August of 2002. I went from someone who couldn’t even sand a small wood project without being debilitated (Yes. Really. With a “normal” TSH and on Levoxyl)…….to someone who could eventually own her own store and stand ALL day. I am now on 4 grains, multi-dosed and sublingually, plus 1/8 grain at night. I have a free T3 at the top of the range, and a suppressed TSH.

Along the way, I’ve had to correct low Ferritin. Additionally, I’ve had to deal with some serious peri-meno issues caused by a plummeting progesterone level with a still high estrogen level.

All in all, my thyroid treatment with Armour alone has been a HUGE success story! I can work on my feet all day and wake up refreshed the next. And I haven’t needed a nap in years.

But…there has been one phenomena that has made be ponder. Namely, if I do several back-to-back days of busy activity, or, if I do something of high physical intensity in one day, I don’t recover as “speedily” as my friends who do the same with me. In other words, they will wake up refreshed, and I may need another day to do so.

And the above has made me ponder. Is it due to cellular damage from being on the lousy T4-only treatment for 17 years? Is it due to a need for adding a bit more Armour when I do excessively physical activity? Is it due to my body’s poor reaction to entering the meno-phase of my life? Or, is it due to my mid-range free T4?? I do remember that Dr. Dommisse of Arizona would seek to optimize BOTH free’s in his patients. And, I’ve heard that a doctor in California is doing the same. And I’ve wondered: does the higher free T4 provide what is needed due to conversion for recovery purposes??

So…I have decided to try an experiment…adding a small amount of T4 to my 4 1/8 grains of Armour. Remember: Armour as pig thyroid is approx. 80% T4/20% T3 (as compared to the human thyroid 93/7), and several patients on Armour tend to only get their free T4 to mid-range…even with an optimal high-range free T3…and I’m one.

I’ve been on 25 mg. thyroxine for over 6 weeks now. After 4 weeks, I “thought” I’d noticed a difference. But alas, I am also dealing with the effects of my stressful entry into menopause. So, it’s hard for me to tell what’s going on with adding T4! I also haven’t done labs yet to SEE where I’ve gotten my free T4, but will be seeing my doc soon.

Bottom line: though I am reporting my experiment to the readers of this blog, I honestly can’t discern yet with clarity what positive effects it’s having because of my peri-meno issues. But that is not taking away of the possible benefits of getting BOTH your free’s towards the top of the range. Dommisse of Arizona states the following:

“The brain seems to need to receive thyroid hormone in the form of T4 as well as T3, and then converts T4 to T3 INSIDE the brain cells. e.g., Patients on the so-called Wilson’s T3-only approach get good relief of physical symptoms but retain their brain fog, memory loss, concentration problems, etc.. The other reason it is a good idea to have your “reserve” of the T4 thyroid hormone as high as possible (as long as that is without any adverse effects)- so that, if you miss a dose of T3-containing preparation, you can possibly convert T4 more readily to T3 than if the T4 level is not as optimal.”

NOTE: if you are new to using Armour, please note that I am NOT advocating that you pressure your doc to add ANYTHING to your Armour…yet. That can only complicate your goal to find your optimal dose. If you still have problems on Armour, it’s a strong sign you simply aren’t on enough, or have low cortisol or low Ferritin. Remember: I feel GREAT on Armour–need NO naps, have excellent energy, no weight gain issues, etc.

I have also noticed that some STAY on their T4 when starting Armour. That may not be a bad idea since it would help you bridge over, but it can also end up confusing the issue of where your optimal dose is down the line!! As a thyroid patient advocate, I have noted that those that use their T4 one day, and get on Armour the next WITHOUT the T4, generally have an easier time finding their optimal dose down the line without confusion. And do know that some on Armour alone obtain that high-in-the-range free T4. I am just not one of them.

 

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Let me say it clearly–the TSH does not work

Sing with me:

A-B-C-D-E-F-GGGGG
The TSH and symptoms do NOT AGREE
Q-R-S
T-U-V
How long will it take doctors to SEE
Now we’ve said our ABC’s
How many doctors do we have to FLEE???

Yup, sometimes even something as simple as a reworked nursery rhyme song says it all. Because as long as doctors look at the TSH as a reliable marker of thyroid function, patients continue to suffer. Why? Because the TSH lab is FLAWED, and the proof is in the pudding.

I work with numerous thyroid patients, both here and other sites, as do several other thyroid patient advocates who run the forums here. And I can’t begin to count the OVERWHELMING number of patients who come to us in desperation because they have a “normal” TSH, yet screaming hypothyroid symptoms, and a doctor who refuses to treat them because he has the myopic view that the TSH is a reliable window into the function of the thyroid.

The TSH is a reliable window into the function of the thyroid as much as a stomach ache is a reliable indication that it’s about to rain.

No one said it more aptly that Dr. David Derry in an interview by Mary Shoman: “Why are we following a test which has no correlation with clinical presentation? The thyroidologists by consensus have decided that this test is the most useful for following treatment when in fact it is unrelated to how the patient feels. The consequences of this have been horrendous. Six years after their consensus decision Chronic fatigue and Fibromyalgia appeared. These are both hypothyroid conditions. But because their TSH was normal they have not been treated. The TSH needs to be scrapped and medical students taught again how to clinically recognize low thyroid conditions.”

It’s called clinical evidence by the recognition of symptoms, not clinical evidence because of ink marks on a piece of paper!!

No wonder thyroid patients have lost so much respect for doctors! Most doctors have become akin to pilotless aircrafts operated by the mindless remote control of their medical school training and the pharmaceutical reps who tinker with their engines.

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Long ago doctors remember the 70’s with sadness

I have now heard the words of two different doctors in two different countries state the same thought: they remember the 70’s with sadness.

It was the 70’s when the TSH lab first came out–Thyroid Stimulating Hormone. It was hailed as a sensitive measure to determine either thyroid over-activity (hyper) and thyroid under-activity (hypo). Before that test was established, doctors made a diagnosis by symptoms alone. So now, doctors had a modern and sensitive test to accurately determine a thyroid problem.

Bull.

Doctor #1 stated that he was at first dubious, but decided to fall right in with the excitement of other physicians about this new test. He used the TSH test. But, over just a few years, it became clear to him that even when the TSH test was NOT showing the patient to be hypothyroid (i.e. their number was in range), the SYMPTOMS of these very patients WERE showing hypothyroid. He was not amused.

And Doctor #2 had a memory of the 70’s as the decade of the synthetics. Wistfully, he remembers not understanding why it was created when desiccated thyroid was doing the job so well. He watched desiccated thyroid treatment “just fade away”, and the synthetic T4’s take over.

And we, too, are wistful. Why, oh why wasn’t there a doctor out there who questioned this new TSH test? Why wasn’t there a doctor out there who questioned the use of synthetic T4-only treatments? Why did doctors become so dull-brained…….soaking up all that information as if it was the holy grail, and failing to ask questions when patients came in REEKING of symptoms in spite of a “normal” TSH, or in spite of being on T4 medications?

It is the MILLIONS of us who have suffered who also look at the 70’s and subsequent years with sadness.

P.S. Below this entry is a previous post titled HAHAHA. I hope everyone has read the comments.

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