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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

Amazing and brutally honest “Tell It Like It Is” letter to her lousy Endocrinologist

ENDOCRINOLOGIST SOMEECARDFor years, a huge body of thyroid patients have remained hypothyroid, or gotten worse with increasing hypothyroid symptoms, due to believing in their doctors. 

And the worst group of doctors, as reported again and again by thyroid patients, have been Endocrinologists. So when a new person on any patient forum states they are looking for an Endocrinologist, more experienced thyroid patients wince. 

And this is why Stop the Thyroid Madness, and most especially the book, exists–to educate you about successful patient experience and wisdom so that in turn, you can recognize what is good doctoring, and what is NOT…in any physician.

Below is a graphic letter written by an appalled patient about her disappointing experience with her Endocrinologist. Nearly any thyroid patient can identify!

Dear —–,

I am writing to you as an ex-patient.

I saw you as a hypothyroid patient with significant weight gain, extreme fatigue, dry skin and poor concentration. You decided that I was “fine” on 50mcg of Thyroxine because my TSH was 3.9. You also suggested that I attend a bariatric clinic for weight loss.

I saw you a second time with multiple biochemical abnormalities. They were high cortisol, low bicarbonate, high anion gap, detectable CRP, and detectable ANA. You told me that none of these results were anything to worry about. 

I sought another doctor, because whilst you may be comfortable in completely dismissing numerous abnormal results in someone who remains symptomatic of hypothyroidism, I was not comfortable with this.

Since seeking a second opinion, here are the improvements I have experienced:

* no longer gaining weight

* no longer have dry skin

* no longer exhausted 24/7

* bicarbonate is now in the normal range

* anion gap is now in the normal range

* TSH is now 1

* I no longer need to take salt tablets in order to correct salt wasting

I have also received a diagnosis of Adrenal Insufficiency. This was gained via 4 separate saliva samples over a 24-hour period, which allowed me to see my cortisol fluctuations throughout the day. As I explained to you, I felt that my cortisol was too low during the day and too high at night. This is exactly what my salivary cortisol results show.

You ordered a 24-hour urinary cortisol test for me, and I asked if it would show you my fluctuations throughout the day. You said that it would. I want to draw your attention to your completely erroneous statement. I have no doubt that you were simply trying to end the discussion with me.

My urinary cortisol tests were normal, as I expected they would be. But, this normal result did not indicate just how inappropriate my cortisol secretion is. That is, too high at night and too low during the day. I am thankful that I did not remain under your care, as I have no doubt that you would have continued to minimize my concerns regarding my cortisol levels.

The treatment I have received since leaving your care is T3 medication (RT3 and liver enzymes are both abnormal until I correct the cause and then move to Natural Desiccated Thyroid). This is the first time in years that I have seen an improvement in my thyroid health (lowered TSH, increased fT3), and my adrenal health (I no longer require salt tablets). I don’t think you ever bothered to test my aldosterone levels, which I consider to be negligent in a case where the patient is urinating frequently and requiring salt supplementation.

You and your peers are quick to label hypothyroid patients as lazy — not outright, but by your tones and your suggestions. Rather than offer me an increase in Thyroxine, you condemned me to many more months of poor health. You felt I was better off going to a bariatric clinic than changing my medication! And I know that you would never have offered me an alternative thyroid medication. So, under your care, patients such as myself (who have felt no benefit from Thyroxine) are surely just lazy drama queens. Or so your behaviour would indicate. It’s even more distressing that you maintain this attitude despite clinical signs of hypothyroidism (weight gain, dry skin, exhaustion), and despite multiple biochemical abnormalities.

It’s odd that Thyroxine is the standard medication for hypothyroidism, as effective treatment with this requires that T4 is converted to T3. For many patients, it may be a fair assumption that this conversion process will take place. However, for those of us with continued symptoms and biochemical abnormalities despite “adequate” doses, it is clear that something is not happening as it should. For me, the dramatic differences in my health since beginning T3 medication has demonstrated that conversion was not taking place as it should. You and your peers are happy to call me lazy, but I know that a simple medication change is all that was required to regain my health.

I am aware that T3 medication is dangerous for heart health at high doses, and that this fact makes many doctors avoid its use in cases of hypothyroidism. However, I have three reasons to oppose this conduct:

1. Most medications are dangerous in high doses. T3 is not alone in this regard.

2. In someone with hypothyroidism who has experienced no benefit from Thyroxine, supplementing with T3 medication (or even better, natural desiccated thyroid) is just replacing what the body is struggling to create. This does not mean that the patient’s T3 levels are suddenly excessive, or consequently dangerous.

3. The damage done by inadequately treated hypothyroidism is significant, and certainly greater than low doses of T3 supplementation

So, I write to you both despairing at the level of care you provided, and relieved that I’ve found better care elsewhere. I’m sure you’ll ignore this letter, as you and your peers remain adamant that Thyroxine is the only form of treatment, and those who fail to see improvements must themselves be lazy or unmotivated. This attitude is clearly that of people who have never experienced the devastating effects of inadequately treated hypothyroidism. I hope that one day you and your peers will be able to show empathy for patients such as myself, whether you’ve personally experienced hypothyroidism or not. Whilst personal experience of hypothyroidism should not be required in order for doctors to be empathetic, walking a mile in my shoes would no doubt change the way you treat your patients.

I will continue to see improvements to my health with the addition of T3 medication, and I will be thankful that I am no longer under your inferior care.

A happily-former patient of yours

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  • See why actress Sofia Vergara is doing thyroid patients no favor by representing Synthroid here. 
  • Been told you have Chronic Fatigue Syndrome? It might be more than you think.
  • Are you on Flat STTM?
  • Identical UK twins talk about their hypothyroidism here.
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Rhodiola, B-vitamins, Liver health, Depression & 5-HTP, VIt. D & asthma, plus the Road to Recovery!

pumpkins

(Though this page was written in 2011, it has been updated to the present date)

Are you enjoying the change in your weather? I am tremendously.

If you have the revised STTM book, you will note a brand new chapter about supplements and foods. I have also gathered up the following information on supplements that just might interest you!

SinglePumpkinRhodiola, an herb and adaptogen, can be a great way to counter stress and protect your adrenals!

I often speak of certain herbs which thyroid patients should look into if they are under a lot of stress, or their adrenal cortisol saliva test shows slight sluggishness, or even slightly high cortisol, as a result of a variety of stressors. One in particular is Rhodiola Rosea, and I am frankly impressed with it.

Since Rhodiola grows wild in Siberia, Russians have been brewing it as a tea to combat sluggish energy for a long time! And the Chinese have been aware of its great properties for eons as well. As an adaptogen, it’s said to decrease fatigue, stimulate your energy levels, and lower depression, i.e. it can do a great job countering the effects of stress, whether biological or psychological. See this research study.

It’s also known as an anti-oxidant, and studies show it can have anti-tumor properties. Different brands of Rhodiola contain different amounts of its important properties, so read the label. You might want to avoid taking it in the evenings, as it can stimulate too much as you prepare for sleep. I keep Rhodiola on hand to use if I’m going through stress of any kind! P.S. Please note that Rhodiola won’t be enough if your cortisol levels are severely low. You may need hydrocortisone in working with your doctor.

Single PumpkinWhy keeping your B-vitamin levels up can be so important!

Early in my journey to feeling wonderful again with desiccated thyroid, I remember a doctor stating how important it was to keep up with my B’s. Why? Because with an improving metabolism means a greater need for B-vitamins. Additionally, we may not be absorbing nutrients very well due to excess food processing, so keeping up with this is critical, even if you don’t “feel” the results.

What’s the big deal with B vitamins? They help your adrenals deal with stress better, assisting the production of all adrenal hormones. i.e. your adrenals are BIG users of B vitamins. They help breakdown other nutrients, which improves energy. They help in the production of serotonin, thus helping you to avoid depression. They enhance your immune function, and help with your hair, skin and muscles. Wiki states they reduce the risk of getting pancreatic cancer.

I have tried to take liquid B-vitamins before, and despise the taste. So I use a good quality, high dose pill form. Some do better taking each B vitamin individually. Go here to read about vitamin B12 in particular, tho ALL of them are imporant.

Single PumpkinAre you supporting your liver? It’s actually important for thyroid patients.

There have been many good discussions in the FTPO Facebook discussion groups about our livers. Why is that large organ so important? For one, it’s a major detoxer! We need it to function well to help remove that which we do NOT want in our bodies…such as excess RT3. It plays a strong role in digestion through the production of bile, helps breakdown carbs and proteins, produces insulin-like growth factor (IGF-1) and a bag full of other good activities. You can’t do well without good liver function.

How to support it? I am personally using a liquid product called Liver Life. It contains mushrooms and Milk Thistle seeds–both important for good liver function. Others also choose to do a liver cleanse to remove toxins, lower excess RT3 and improve liver function. I suggest talking to a Naturopath about good products, or do an internet search. Patients in groups can also help.

Single PumpkinSpeaking of depression…look what 5-HTP did for this gal.

Depression is all too common when on the inadequate T4-only meds like Synthroid or levothyroxine. Ridding it is one huge benefit of switching to desiccated thyroid, or correcting poor adrenal function and low iron. But there’s a possible solution until you better treat your thyroid–5-HTP. This chemical is a natural way to raise your serotonin levels, which helps to raise your mood.

One gal had severe depression (which in turn can cause suicidal thoughts in some.) Her Naturopath had an idea–to start taking 800 mg of 5-HTP a day, starting immediately with five pills before bedtime that very night. It worked. She explains “The 5-HTP took me back to the bubbly, happy me that was there before the thyroid problems began — at least emotionally.”

Single PumpkinHave asthma or any lung condition? Then you may want to look at your Vitamin D levels, which are chronically low in thyroid patients.

A female thyroid patient with low levels of Vitamin D got on supplementation with D3 to raise her levels. And to her complete surprise, her asthma went away. She explains: After I realized that my asthma was gone, I googled “Vitamin D and Lungs” and found out that it’s being studied all over the world. Here’s just one quote she picked up: “In a recent article from the American Journal of Respiratory and Critical Care Medicine, researchers looked at Vitamin D2 and D3 levels in adults with asthma. They also measured obstruction in the lungs in various ways. They reported a significant correlation between Vitamin D levels and lung obstruction. In other words, the lower the Vitamin D level, the more obstruction in the lungs. In addition, decreased or insufficient Vitamin D levels were linked to greater “twitchiness” of the lung, which makes the lungs more sensitive.”

Cartoon thryoid with PatClick on last link below to view the Road to Recovery in your thyroid journey.

When I do phone coaching, there is a common phrase I tell folks: Be prepared that there will be rocks in the road you’ll need to tackle, and it’s normal. So keep on keeping on. And to underscore that reality, thyroid patient Joan Trudo Steckelberg created a great image of this road for me: https://www.stopthethyroidmadness.com/the-road-to-recovery-a-visual-image/ Thank you, Joan!

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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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Do you know someone who is defensive, paranoid and/or frequently anxietal??

 

Screen Shot 2015-09-30 at 12.00.16 PM(This page was updated to the present day and time. Enjoy!)

It happens often–someone will join a patient group, and right off the bat, you notice they are one or more of the following (or you notice it in yourself):

  • very defensive about certain subjects
  • know-it-all
  • argumentative
  • hot-headed
  • condescendingly overbearing
  • paranoid
  • highly emotional
  • over-reactive

They may quickly fly off the handle.  They might see implications in words that were never there. They can also be childish in their reactions, obsessive about certain topics or people, mistrustful of others, forgetful, combative, and/or jittery.

Even worse, combine someone with intelligence and a way with words along with all of the above, and you’ve got a royal pain in the butt. And the worst part?  Most have no idea how badly they are manifesting the above.

It’s called adrenal fatigue, also known as adrenal insufficiency or hypocortisolism.

It starts out with excessively high cortisol, then falls to low cortisol with a basket full of consequences when it comes to coping and interacting with life and people. i.e. those with adrenal fatigue can have several of the above list or more. . And having a cortisol problem is unfortunately very common among thyroid patients thanks to being left undiagnosed due to the lousy TSH lab test, or being put on T4-only medications like Synthroid, levothyroxine, Extroxin, etc. Both situations cause the adrenals to work far too hard, then become sluggish.

It’s also unfortunately common for many doctors to deny the existence of low cortisol as we tend to have it, or be clueless on how to treat it.

And to get well, we have to become informed ourselves

Why? Because patient experiences and wisdom are far ahead of most doctors, and we have to be prepared to guide them. You can read about this condition here. Then the adrenal wisdom we’ve gain on treating adrenal issues. Some of the BEST details are in Chapters 5 and 6 in the Stop the Thyroid Madness book. The last Chapter in the STTM II book does a bangup job explains biologically how we end up with low cortisol in the first place. A must read.

There appear to be a huge body of thyroid patients with this condition–at least 50% or more–and it’s a topic that needs understanding and a condition that needs the right treatment.

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In 2010, Janie was on two radio shows around the time this post was originally written (and is now updated). See if you can find their archives:

  • Michigan Talk Network’s “Health and Wellness Show” by Dr. John Wycoff, D.O., an educational & patient interactive call radio show. http://www.michigantalknetwork.com/dr%20wycoff/new/hws_home.html  
  • Plus Just Ask Nish, a new TRN nationally syndicated radio show heard on 53 stations in 1400 cities. http://ask-nish.com/radio_justasknish.php The host is  Nisha Jackson, N.D. who has 18 years of experience in research and practice, as well as multiple T.V. appearances, motivational speaking, and two other radio shows (although this is her largest).

Have you Liked the STTM Facebook page? Great daily tips, inspiration and information!

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