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Feel better on T4 than you did on Natural Desiccated Thyroid?

Occasionally, hypothyroid patients will exclaim with conviction and truth that they outright feel better on Synthroid or Levothyroxine (T4-only meds) than they did when they tried Natural Desiccated Thyroid (NDT) or even T3-only.  And we believe them.

But…there is an explainable reason which does not mean T4-only is better for you. It really isn’t. Bear with me and read on…

Years ago, as many of us were starting on NDT after being on T4, we were seeing our lives change in a huge way, far more than T4 did! It was like a miracle! Those five hormones really made a difference.

But some others were having problems when raising something so miraculous for others. Huh?? We didn’t get that.

It took awhile longer to finally see why and to answer the “huh?” i.e. we began to see that there were three strong and correctible reasons why someone was not seeing the miracle of NDT as others were, and instead, were blaming the NDT (or T3) and moving back to T4-only…

The three main and correctible reasons why NDT, which gives all five thyroid hormones, seems to fail…

1) NOT BEING “OPTIMAL” WITH YOUR NDT DOSE (it’s NOT about just being in range and not about being held hostage to the TSH)

We all have had a tendency to believe that our doctors know what they are doing with NDT or T3. But, the majority do not. They tend to leave you on too-low doses, and/or pay attention to the lousy TSH. Thus, due to the natural suppression of the feedback loop (hypothalamus to pituitary to thyroid), you will get worse on those lower doses, sooner or later. i.e. you will get more hypo, and/or have rising adrenaline, cortisol, anxiety or other. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only.  But NDT, with all five thyroid hormones, could have worked well IF you had known to be more optimal. Optimal puts the free T3 towards the top of the range and the free T4 mid-range, and puts the TSH below range…all three…and removes all symptoms. What amount does that is very individual—some start to achieve that in mid-2 grains, others are in the 3-5 grain area, others may be higher.

What if you tried to raise to be optimal, but had worsening problems? Read #2 and #3 below.

2) NOT BEING OPTIMAL WITH YOUR IRON LEVELS (it’s not about just being in range)

When this is brought up to patients who once tried NDT and failed, they will exclaim with all sincerity “But my iron levels were great”. We know that a very small percentage may have had good iron. But what is common with the majority is they did NOT have good levels “Falling in the normal range” does not equal a good level of iron. It’s WHERE one falls that tells the story.

For example, with two types of ranges for serum iron (NOT ferritin):

a) When the range is approx. 40?155: women who have optimal serum iron tend to be close to 110, or 109, or 108, etc. They are NOT in the 90’s and definitely not lower when optimal. Men tend to be in the upper 130’s.
b)  When the range is approx. 7-27: women are optimal around 23ish; men are towards the top.

If they are lower than the latter examples, it messes up the ability to raise NDT and feel great without issue. Why? Inadequate iron levels tend to raise the reverse T3 (RT3) as one is raising their NDT.  As the RT3 goes up due to inadequate iron, you will feel worse. And because of that, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had had optimal iron, NDT WOULD have worked…as long as they also had optimal cortisol (See #3 below) and were working to find their optimal dose of NDT (see #1)

See more details about iron here: http://stopthethyroidmadness.com/ferritin

3) NOT BEING OPTIMAL WITH YOUR CORTISOL LEVELS (it’s not about just being in range, and it’s NOT about blood cortisol)

We noted years ago that at least 50% of those with hypothyroidism had a cortisol issue as revealed by saliva, not blood. What does a cortisol issue mean? Either their cortisol was too high (due to the stress of being undiagnosed, poorly treated, or being on T4) or was too low (due to the stress of being undiagnosed, poorly treated, or being on T4), or had both high and low (due to the stress of being undiagnosed, poorly treated, or being on T4).

And what happens with a cortisol issue when you are trying to work with NDT? Either RT3 will go too high (the inactive hormone), or one’s T3 will pool in the blood and not make it to the cells, or both…and you won’t feel well or have bad reactions like excess adrenaline, anxiety, shakiness, feel-bads.

And because of having a cortisol issue, some exclaim “NDT didn’t work for me!” and they rush back to T4-only…but if they had…

a) done the 4-point saliva test, not blood
b) compared the saliva results it to the lab-values page (it’s not about that normal range)
c) CORRECTLY treated it (see this page, plus Chapter 6 in the updated revision STTM book if saliva is VERY low, which also applies to Adrenal Cortex),

….they would have soared on NDT…along with good iron and being OPTIMAL on NDT (or T3)

Note: it’s always about the results of a saliva test, NOT blood cortisol.

Bottom line, it’s not as simple as “feeling better on T4”. It’s more about that you are NOT experiencing the side effects that you did on NDT from any of the above three problems, which were all correctible. That is different.

“That all sounds like too much trouble–I’m staying on T4-only!”, you may be exclaiming….

There is a big problem with that reasoning that I hope you will be open to….Namely, T4-only outright…

  • CAUSES low iron
  • CAUSES a cortisol problem
  • CAUSES many other issues like lowered B12, lowered Vitamin D, rising blood pressure, rising cholesterol, depression, anxiety, heart issues, bone thinning, chronic pain….and more. The individuality is in who gets which…but T4 users do get problems of their own kind, sooner or later.

Please note that the above is not an empty strong opinion. It’s based on years of reported patient experiences from many who were on T4! i.e. most of the following hypothyroid symptoms were experienced by T4 users!! They were still hypo!

Now you may state “But I know people on T4 who do not have those problems!”.

First, some outright DO have some of those problems, but don’t realize it or they deny it (while others see it in them). Adrenal issues, even those denied, can make certain people awash with defensiveness, argumentativeness, denial, anger, paranoia towards others observations, low patience, moodiness, etc.

Yes, some on T4 do, in fact, do better than others. But you know what we have observed? The longer they stay on T4-only, the more problems WILL, in fact, raise their ugly heads eventually…like either adrenal issues, or low iron, or low B12, or depression, or rising cholesterol, or rising blood pressure, or heart problems, or dry skin and hair, or chronic pain, or bone loss, or rising illnesses…..on and on. Forcing the body to live for conversion alone backfires….sooner or later.

Summary: A working Natural Desiccated Thyroid, or adding T3 to that T4 as a second choice and getting those frees optimal, is a much better way to go than being on nothing but T4, according to years of worldwide patient experiences

A working NDT gives you all five thyroid hormones, and does NOT force you to live for conversion of T4 to T3 alone, i.e. some of NDT is direct T3. Additionally with T4-only, some people have genetic mutations which hinder the conversion of T4 to T3 and may not realize it.

There is a good reason that millions of patients found out that T4-only is not the way to go for many reasons, and NDT is the way to go if you correct the reasons you did NOT to do well...or even adding T3 to your T4 in an OPTIMAL amount. But you will still need optimal iron and cortisol!

P.S. The above three reasons are the most common for not doing well on NDT (or T3) and should be considered first. A 4th less common reason: chronic inflammation of any cause. Read about inflammation. If this is true for you, the sad part is that T4-only will also backfire, as it raises RT3.

Mold exposure can also effect conversion.

Click on the graphic to order an excellent saliva cortisol test.

101 replies

15 Things which Thyroid Patients should teach their Doctors

Screen Shot 2015-08-07 at 4.28.31 PMMany thyroid patients will tell you they have, or have had, doctors they love! I, Janie, have had many of them.

But it doesn’t take away from the fact that those in a medical profession have been sorely lacking for decades about correct knowledge on how to diagnose and treat hypothyroidism or Hashimotos, besides have inappropriate familiarity about all the issues related to being hypothyroid. Even their knowledge on how to correctly read labwork has been lazy.

Because of that poverty of correct knowledge, patients were forced to take the bull by the horns and figure things out for themselves! Stop the Thyroid Madness, the flagship of “patient experiences and wisdom”, represents all that wisdom!

Here are 15 things that any thyroid patient not only has to learn, but needs to teach any medical practitioner the best way they know how:

1) My fatigue and weight gain is not simply because I need to exercise more and eat less.

Granted, we know that exercise and how we eat is important! But being undiagnosed hypothyroid, or poorly treated due to Synthroid or any other T4-only medication, or being held to the TSH, keeps many of us with a low metabolism. The latter results in very easy weight gain, or the failure to do the kind of exercise which would help us!

2) Depression is strongly related to continued hypothyroidism!

We know there can be a variety of reasons for depression, but for most thyroid patients, our depression is a sure sign that we are either undiagnosed due to the lousy TSH lab test, or undertreated due to being on only one of five thyroid hormones like T4-only, or being held hostage to the TSH, a pituitary hormone.

3) The TSH lab test has been a failure for too many years.  

Yes, though a seriously low TSH can detect if we have hypopituitary, for most of us, we’ve had a “normal” TSH yet obvious hypothyroid symptoms. Additionally, when we are optimally treated on Natural Desiccated Thyroid, T4/T3 or T3-only, our TSH lab test is always below range without one hint of bone loss or heart problems. We want to go by the free T3 and free T4, plus symptom removal and a good heartrate and blood pressure instead. //www.stopthethyroidmadness.com/tsh-why-its-useless

4) To figure out if I have Hashimotos,  BOTH antibodies labs need to be tested, not just one. 

To detect if we have the autoimmune version of thyroid problems, patients saw right away that one antibody could be high, but the other one not.  So we need both the anti-peroxidase AND the anti-thyroglobulin lab tests. And by the way, many Hashi’s patients soar on Natural Desiccated Thyroid if they raise it correctly. See #5.

5) Natural Desiccated Thyroid (NDT) has been changing patient lives for years now, just as it did for decades before Synthroid hit the market. 

Though some patients do better on T4-only meds than others…at first..there is simply too many reported experiences by patients for 15+ years that it’s not the way to go. And those same reports show that being on the five hormones that NDT gives makes much more sense.  Even adding synthetic T3 to synthetic T4 has produced better results.

6) I can’t wait six weeks before having a raise!

Thyroid patients found out the hard way that if they stay on a starting dose of NDT (which is usually one grain) longer than a few weeks, the feedback loop causes hypothyroidism to come back with a vengeance in some way or another. So we raise every two weeks and start slowing those raises in the two grain area or close to three to start finding our optimal dose. //www.stopthethyroidmadness.com/natural-thyroid-101

7) My lab results are not about being in the “normal” range.

This was a huge discovery by informed thyroid patients as they kept observing each others lab results for years: it’s about “where” the lab result falls that tells the story…not just because it falls in a suspicious “normal” range based on the testing participants the lab facility chose. //www.stopthethyroidmadness.com/lab-values

8) If I react poorly to NDT, it’s not because NDT isn’t right for me. 

Patients who have had problems with NDT found out that there are five correctible reasons for most of them:  a) being kept on lower doses far too long b) not raising high enough because of being held to the TSH range c) having low iron d) having a cortisol problem 5) having Lyme. This page explains: //www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

9) Yes, there really is such a thing as adrenal fatigue/adrenal insufficiency/hypocortisolism.

Easily more than 50% of thyroid patients end up with a cortisol problem, either due to being undiagnosed for years thanks to the use of the faulty TSH lab test, or being put on only one of five thyroid hormones–T4. And to learn more about it, one of your doctor’s own colleagues has written a brilliant chapter as to biologically why we get low cortisol, found in the Stop the Thyroid Madness II book, chapter 15. And this:  //www.stopthethyroidmadness.com/adrenal-info

10) Saliva testing for cortisol is far more accurate than blood testing

Saliva is said to be testing one’s cellular levels of cortisol, plus it does so at four key times during a 24-hour period, which is important to know. And patients found that the results (from reputable companies) fit their symptoms! Whereas blood cortisol testing is measuring both bound and unbound cortisol, and most of the time does NOT fit the symptoms, showing high cortisol when we are really low, or vice versa. //www.stopthethyroidmadness.com/adrenal-info

11) If some or most of my saliva cortisol results are low, there are safe and effective ways to treat it. 

The adrenal area is one which thyroid patients took great time and care to learn, based on what we read from experts, plus our repeated experiences and wisdom. This is where our doctor, need to be open-minded enough to learn from Stop the Thyroid Madness, both on the website and in the revised STTM book, chapters 5 and 6.

12) If I have acid reflux or stomach problems, it’s usually due to low stomach acid caused by our hypothyroid state, not the need for Prilosec (Omeprazole). And some of us need to be off gluten, especially if we have Hashimotos.

i.e. what we need is to restore a better level of acid in our stomachs, which our hypothyroid state lowers–the latter which causes problems in absorbing vitamins and minerals. That’s why we need to put lemon juice or apple cider vinegar in the liquids we use to swallow our meds and supplements. And a large body of us with Hashimotos need to be off gluten.

13) I’m not stupid just because I didn’t go to medical school, plus I live in my own body. So I need you to see us as a team. 

Because of what Stop the Thyroid Madness gives me, both the website and the books, it’s important to me that you see us as a team–BOTH my knowledge and your own.

14) No, thyroid cancer is not the easy cancer.

Thyroid cancer patients hate their cancer as much as anyone does…plus it’s worrisome, surgery nor RAI is not a picnic, and recurrence is on our minds. //www.stopthethyroidmadness.com/2015/01/31/thyroid-cancer-easy-cancer-thyroid-cancer-patients-appalled/

15) My thyroid labwork should be done before I take my thyroid meds for the day. 

Patients discovered that the T3 is NDT will peak about two hours after meds are taken, then a slow fall. If patients are on T3-only, it’s a 4-hour peak. We want to measure what still lingers in us, not the peak or rise.

What else do you think our doctors need to learn?

JanieSignature SEIZE THE WISDOM

* Join the STTM Facebook page for daily information, tips and inspiration!
* Get your STTM books here and become INFORMED: //www.laughinggrapepublishing.com You can also consider buying them for your favorite doctor (and perhaps get reimbursed when you check out of his or her office after a visit.)

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One more kooky & hilarious video! Plus more about bipolar, pregnancy, mistakes patients make.

HUMOROUS VIDEO ABOUT ADRENAL FATIGUE:   In my blog post last February 15th, 2011, I sent you in the direction of a kooky, creative and hilarious You Tube video titled “Our Holy Miracle of the Infallible TSH Test”.

Well, creator and thyroid patient Brian Foreman has brilliantly done it again, but this time, it’s about adrenal fatigue and titled “Why Isn’t My Thyroid Medication Working?”  Have fun watching it, and get ready for a good laugh here and there.

Want to know more about adrenal dysfunction? Go here to find out about the problem, and do the Discovery Tests tests to see if you might have it.  Note that it’s critical, if the self-tests seem to point to an adrenal issue, to do a 24-hour adrenal saliva test to see what is going on at four key times during a 24-hour period.  Here is a compilation of what patients have learned in how to treat low cortisol, and this page is important to share with your doctor. If you want even more detail, it is strongly recommended by thyroid patients to order the REVISED STTM BOOK, and see Chapters 5 and 6. This can be carried right into your doctor appointment with key areas highlighted and bookmarked.

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BIPOLAR, DEPRESSION and HYPOTHYROID: A thyroid patient emailed me with just one more article on the connection between having a bipolar disorder and one’s thyroid, including the fact that there is “a strikingly high rate of autoimmune-caused thyroid problems in people with bipolar disorder”, aka Hashimotos disease.

And even if depression is your main problem, the article mentions “gently pushing your thyroid status over toward the “hyperthyroid” end of normal, if you happen now to be toward the hypothyroid end of normal”, in order to adequately reverse the depression problem. I constantly think back about my own mother who suffered from depression, succumbed to having shock therapy, and ended up on anti-depressants the rest of her life because of her use of Synthroid.  So we know that treating hypothyroidism with direct T3, such as is found in desiccated thyroid, is far better. 

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IS THERE A BABY KNOCKING IN YOUR BELLY?  I often see pregnant women in forums wondering how their babies are doing and how the thyroid works in helping their babies, or hurting them if the mother is pregnant and hypothyroid.  Here is an article sent to me that can help inform as to changes in your thyroid function when pregnant, how thyroid hormones affect the brain of the fetus, and the role of iodine.  It can underscore how important proper treatment is while pregnant.

What about adrenal fatigue which so many thyroid patients find themselves with, and pregnancy? A gal named Anne has written about this issue here. She has Addisons disease, which is more about a disease process and can be autoimmune, but her comments can be very applicable for those of you with sluggish adrenal function. Share all of this with your doctor. Need to find a good one?? Go here.

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TWO COMMON MISTAKES  MADE BY PATIENTS:  In patient groups, here are two common mistakes I see patients make:

  1. Not doing the 24 hour adrenal saliva test if adrenal dysfunction is suspected:  I can’t stress this enough:  patients have learned repeatedly they shouldn’t have rushed into cortisol treatment if they or their doctor’s “suspect” an adrenal problem. Yes, STTM has outlined several self-tests, called Discovery Steps, that you can do in your own home to see if anything is suspicious. There is also a checklist of symptoms related to adrenal problems. But the problem is two-fold:  symptoms of high and low cortisol can be exactly the same, and ‘where you are low’ and ‘where you are not’ can dictate how your treatment should be.  Some only need to lower high cortisol, some may do well on simply adaptogens like Ashwagandha or Rhodiola, some do well on Isocort or OTC adrenal cortex, and some outright need to be on prescription hydrocortisone. Teach this to your doctor. Here is where you can order your own saliva tests, and then take them into your doctor’s office.
  2. Not getting copies of labwork: Contrary to how your doctor says it, you have a right to have copies of your own labwork. And you should! Patients often come on groups seeking feedback from other patients, and yet, have no idea what their labwork was, or the ranges. Getting copies of labwork is just one step of many in being a pro-active patient. Here is how to read labwork according to the experience of thyroid patients.
Remember: Stop the Thyroid Madness, aka STTM,  is a patient-to-patient informational site meant to educate and inspire you with that information. Talk to your doctor about what you have learned; use the STTM revised book right in the office, and push for what you believe in, and you can go a long way to feeling MUCH better.
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10 reasons many thyroid patients are still frustrated, angry, and sick

 

Screen Shot 2015-06-12 at 1.21.49 PMUpdated in 2015:

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 insufficiency 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. Thinking that falling in the range is optimal:

    If a lab result within those numerical boundaries, which are based on a set of people a laboratory picked to come up with the range, says I’m normal, WHY do I still have issues??

  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 low cortisol or low iron or Lyme or undiagnosed gluten issues, etc, 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 some 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 whatsoever and improvement in our bone density and heart health.

  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 understanding from your doctor that these are ALL side effects of poor thyroid treatment.

  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, or like Denmark, refuses to dispense it.

  10. Reformulations and Big Pharma apathy:

    In 2009, then 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.  RLC also reformulated their Naturethroid to some degree, and though some patients still do well on it, others did not anymore. Erfa made some kind of change in 2014 which they denied, yet certain patients all over the world reported new problems they had never had before. You are left wondering WHAT is going to happen next!!

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.

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. And here’s how to find a potentially better doc. 

 

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Patients and wise doctors continue to learn in leaps and bounds

IMG_2008 Just when you think we’re full of great information for better thyroid care, there’s still more to learn and find out.  Below is information that you might find interesting on STTM.

ADRENALS: For those who discovered via the 24 adrenal saliva test that they needed cortisol support, we have come to realize that some can’t do the ramping up schedule from a small amount to a larger amount without having problems from the feedback loop.

Instead, many simply need to “start” on the higher amount, which would range from 20-30 mg. You can read about that on the How to Treat page, and you’ll note that not one morning amount goes higher than 10 mgs.  With the exception of men, higher than 10 mg seems to suppress the ACTH and adrenals too much.

A NEW LOOK: To make the STTM home page more understandable to newcomers, the home page has broken down the information better into separate pages, and also has a new interesting way of using it.

LISTEN TO THIS INFORMATION: STTM has short audio clips you can listen to, or send someone else to, to help understand what this is all about.

STORIES OF OTHERS: Individual real-life stories continue to come in, proving over and over that this revolution for far better care really does work.

FEEDBACK and MORE FEEDBACK: I get emails daily about lives changed thanks to this patient revolution. It’s wonderful to see people finding out WHY they have depression, less stamina than others, rising cholesterol and blood pressure, hair loss plus other lingering symptoms of  hypothyroidism left untreated because of the lousy TSH, or undertreated because of the equally-lousy T4-only treatment like Synthroid. I can’t begin to post them all, but STTM does contain a sampling of this feedback.

DESICCATED THYROID BRANDS: Wow, the list is growing for desiccated thyroid brands around the world! We now have listings for Denmark, Germany, Italy and New Zealand, as well as more detailed information on compounded thyroid in Australia. Thanks to all who contributed.

KEEPING UP WITH ADDITIONS TO STTM: In case you didn’t know, there’s a page meant to inform you of what’s added to STTM. I may neglect to list a few additions occasionally, but think I’m pretty close to getting most of them up there.

MEDICAL RESEARCH TO PROVE WHAT WE ALREADY KNOW: Did you know that STTM has a page which compiles research and studies which prove what we as patients already know? It’s not loaded with research yet, but it’s growing. And if you have found more to contribute to that page, use the Contact Me form.

SITE MAP: And bottom line, you can always go to the Site Map, or review the information more compactly in the book, which patients are taking into their doctors offices.

*Want to be informed of these blog posts? Curious what’s on Janie’s mind? Use the Notifications on the left at the bottom of the links.

*Stop the Thyroid Madness T-shirts are now 50% off! I like sales, don’t you? And by wearing these shirts, you’ll never know what seed you put in the mind of someone walking past you who’s still on Synthroid or any other T4 meds, and doesn’t know WHY they have depression, rising cholesterol, easy weight gain, the need for naps, etc. You”ll also find humorous bumper stickers which definitely spread the word.

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