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Year: 2018

The Gray Areas of Reported Patient Experiences

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Did you know that years of reported patient experiences, which the Stop the Thyroid Madness website and books are about, has gray areas and has NEVER represented…

…stern black and white rules.

…narrowly defined methods.

…beliefs over experiences. 

Additionally, Stop the Thyroid Madness has…

…never been about making something up based on strong opinion of a group’s owners.

…never, ever been about negativity towards you the patient for daring to think outside the box. It’s that daring that resulted in the very solid information based on our experiences that has been compiled on STTM!

Instead, Stop the Thyroid Madness is a compiled site and books of information about “here’s what patients have reported repeatedly over the years which worked and why that got them well” which is ultimately for you to become your own best advocate as you work with your doctor.

Here are a variety of examples of those Gray Areas of Patient Experiences (with a few Givens) below:

Related to hypothyroidism:

SYMPTOMS of HYPOTHYROIDISM: It varies! For example, while most may see weight gain or difficulty losing, a small minority can’t gain weight at all. Or while many have energy issues, others are fine yet have rising cholesterol or rising blood pressure. On and on. See all possible reported symptoms here.

OPTIMAL AMOUNT OF NATURAL DESICCATED THYROID (NDT):  it varies! Though it happens and is rare to be optimal below 2 grains..and maintain it…it can happen. Others (and more than the latter) start being optimal in the 2 grain area. And others are optimal in the 3 grain area. (Janie is at 3 1/2 grains, as just one example) Some are optimal in the 4 grain area and up. On and on. The given: in spite of the different amounts, optimal nearly always seems to put the free T3 towards the top part of the range (notice the word “part”–it’s never an exact number), and the free T4 around mid-range for the vast majority (and this occurs with optimal iron and optimal cortisol–you can’t get optimal without having problems if iron and cortisol aren’t optimal, too.

OPTIMAL AMOUNTS OF T3-only:  For those on straight T3, and with the right amounts of  iron and cortisol, patients report feeling their best, without any negative results, when their free T3 is at the top of the range, and some report even slightly over. That was huge information. But the gray area was always how much T3 meds achieved that complete removal of symptoms, and which didn’t backfire later due to being on too little. Some see it at 50 mcg; others at 60 mcg, or 70 mcg, or 80 mcg…and some have to get into the100’s of mcg of T3 to finally get rid of al their symptoms and maintain that.

T4-ONLY USE:  A strong gray area we noticed: some who started on T4-only like Synthroid or Levo did much better; others never did well from the beginning. But one given that patients on T4 were admitting to–symptoms creep up the longer they force their bodies to live for conversion alone. T4 is not the active hormone: T3 is. And there are too many variable that will eventually inhibit the conversion of T4 to T3. And a healthy thyroid gives some direct T3.

Related to lab work

WHEN TO DO THYROID LAB WORK IF ON NDT or T3: No, it’s not about a specific set of hours. For several years now, we learned it’s about taking our meds one day as usual (which is often two times a day for NDT, and three for T3, but there are variations—those gray areas), then doing labs first thing the next morning. Why? After taking either NDT or T3, our free T3 levels are going to peak anywhere from 2-4 hours according to a variety of literature and observations…and then a slow fall for up to 12 hours–also in a variety of literature. We want to see what we are holding onto and doing it the next morning has worked well. The only exception to taking our NDT or T3 the day before labs is that we “may” want to bring an evening dose to the afternoon, just in case. Not set it stone, but we do lean that direction to move the evening dose to the afternoon the day before we do labs.  Bottom line: it’s not about a rigid range of hours before doing labs the next morning.

THE TSH LAB TEST:   Now it’s a given that using the TSH to diagnose by can leave millions with clear hypothyroidism undiagnosed. Why? It doesn’t rise at first when one is very hypo! Patients have seen that repeatedly over the years. And when an optimal amount of T3 and NDT, it’s a given that for a high percentage, it will be below the range…but the gray area of being below range is where below range it will end up for each individual. P.S. we found it’s never about dosing by the TSH anyway. It’s about the free T3 and free T4, plus removal of symptoms, a good heartrate and blood pressure, etc.

Related to adrenals

WHO GETS AN ADRENAL PROBLEM: The gray area is that not everyone gets a cortisol problem while being poorly treated on T4, or being underdosed on T3 or NDT. But subjective observation reveals that a LOT do. Here’s a few ways people find out…also check out Chapter 5 in the updated revised STTM book.

WHEN THE FIRST SALIVA SPIT IS DONE IN THE MORNING:  No, it is NOT a specific time like “30 minutes after waking”. It has always been somewhere “right after waking up” in the morning. That could be literally after you wake up naturally for the day, or five minutes later, or ten minutes later, etc. Not specific but the given is soon after waking up for the day.

SUPPLEMENTS TO LOWER HIGH CORTISOL:  No, it’s not taking a massive amount of known cortisol-lower supplements, like five of this along with five of that along with five of another. 15 pills?? No!  What a great way to stress your liver. A high % of those trying to lower high cortisol report success doing it on just one particular supplement where the high is occurring. One example is Holy Basil, and as reported for many,  just two capsules does the trick for a particular high, or three capsules does the trick. A much less percentage report needing four or so.  Some report combining supplements, like one holy basil and one Relora, or two each…etc. It just varies and they all work if enough is taken, is appears  Here’s a page about this and there’s even more in the revised STTM book

LENGTH OF TIME TO LOWER HIGH CORTISOL: Lowering high cortisol is typically NOT about taking supplements for months and months (Gray area: high ongoing stress like lyme, poorly managed autoimmune, infections, etc. may required extended treatment). High cortisol can often come down in a matter of a week to a few weeks. We also treat the cause while lowering it.

OPTIMAL AMOUNTS OF CORTISOL SUPPLEMENTATION:  Gray areas! With HC (prescription hydrocortisone given via your doctor) and women, it appears the majority end up at 30 mg (after doing DATS aka Daily Average Temps as we learned from Dr. Rind). But some find their optimal amount at 27.5, for example, and perhaps a smaller bunch right at 25 mg. Some even end up 32.5…all the latter after doing those Daily Average Temps to find their correct physiologic amount. It’s not as common, we’ve noticed, for a woman to need 35 mg, but we figure it could happen. Note that for what appears to be many, if they are going up that high, it’s because they have inadequate aldosterone that needs discovery and treatment.

Related to iron

OPTIMAL AMOUNT OF IRON: Over the years, it appeared to female patients who reported back that optimal for their serum iron seemed to be “close to” 110 in those kind or ranges, or “around” 23-24 or so in those ranges which only to up to the upper 20’s.  Note the qualifications with quotes–those gray areas. For example, with the first range, some were just fine at 107, or 106, or 105, and etc. Gray areas for iron.

Related to symptoms

HAVING HYPER-LIKE SYMPTOMS: this seemed to be an area that had different causes–those gray areas. For some, hyper-like symptoms were due to having low cortisol, causing a release of adrenaline. Some, though not all, felt them with high cortisol. Another cause of hyper-like symptoms: just being hypothyroid due to being undiagnosed, or being on T4, or being underdosed on NDT or T3, releasing excess adrenaline. And another gray area was how people experienced the high adrenaline. Some state anxiety feelings; some state palps; some state high heartrate; some state shakiness; some notice little. Please, if you ever had concerns about your heart, we hope you will work closely with your doctor.

Related to Hashimoto’s

HASHIMOTO’s: Here contains a little gray area…Namely, though the vast majority will have antibodies to prove they have Hashi’s (both the anti-TPO and the anti-thyroglobulin are needed, we have noted, NOT just one of them–a given), there’s this small body such as 5% who have none! The latter has to prove it via an Ultrasound!

HASHIMOTO’S AND IODINE: though some overreact to the detox from iodine and see their antibodies go up, another body has stated that it was iodine alone that brought their antibodies down! Gray areas! The bottom line: many have to prepare for the detox better–see this.  And some have to go low and slow. Read iodine information from experts like Dr. David Brownstein, Dr. Guy E. Abraham, Dr. Jorge D. Flechas..

HASHIMOTO’s AND GLUTEN:  Yes, though it has always appeared that the vast majority need to be off gluten, as it makes the antibodies worse as well as inflammation, there have always been a small minority who had no negative issues whatsoever with gluten and haven’t for a long while.  Gray areas! As always, there are strong opinions, but it doesn’t take away the facts that some do fine.  But everyone should decide for themselves.

Related to Lyme disease

LYME DISEASE:  One given is that for all too many with “active” Lyme, patients noticed their RT3 went up and up from either T4-only or the T4 in NDT. That only makes one more hypothyroid since RT3 is an inactive hormone. So many have stated they lowered their NDT or T4 to a small amount and made it up with the majority being T3. Some are on T3 alone. And the gray area?? A small body of Lyme patients on T3 seemed to report needing that free T3 slightly above range, even if others state they were doing okay with it slightly below but “towards the top”.

The above is just a partial list of the gray areas in patient experiences.  It’s not all black and white, rigid, or rule-bound as it can often be reported in some groups.  Hope that helps! Use STTM to work better with your doctors!

 

 

 

  • A list of pages on Stop the Thyroid Madness is here–to help you counter potentially bad information.  If you already have the STTM books, the same will help.
  • Why T4-only has caused millions of people problems, sooner or later.  It’s up to you. 
  • How patients learned to read their labwork. 
  • WANT TO RECEIVE NOTIFICATIONS VIA EMAIL ABOUT STTM’S BLOG POSTS? Just sign up on the lower right of any page on Stop the Thyroid Madness!

NEED A GOOD FACEBOOK GROUP TO DISCUSS ADRENAL AND/OR THYROID ISSUES? Here’s a privately run group that is positive on both the public side and the private side, has great integrity, and has an easy going attitude that a lot of people sure do seem to like: https://www.facebook.com/groups/AdrenalFatigueandThyroidCare/ NOTE: this is a large group, so be patient with being approved, and patient with getting your question asked. It’s worth it, as unlike other groups, they stick to solid patient experiences and don’t make things up.

Another is the non-Facebook, Yahoo Natural Thyroid Hormones groups i.e. this one: https://groups.yahoo.com/neo/groups/NaturalThyroidHormones/info or this one for Europeans only: https://groups.yahoo.com/neo/groups/NTHeurope/info

100 replies

Gut Health — One more part of your health and well-being as thyroid patients

When I was first creating the Stop the Thyroid Madness website, plus the books, it was all to empower you in both the doctor’s office and without.

And it never even dawned on me or others to look at gut health. It’s probably because I never had any obvious signs of a gastrointestinal problem. But many others do!

Over the years, though, it’s become a hot topic, and rightly so!

What is gut health?

Gut Health is a catchy phrase referring to all the right things that should go on within your gastrointestinal tract. The latter refers to all those organs which are involved in digestion–the breakdown of what you consume! They include your…

1) Esophagus 

2) Stomach

3) Small intestine

4) Large intestine

5) Liver

6) Gallbladder

7) Pancreas and more

Why is digestion so important?

Healthy digestion is the process your body goes through to break down the food, liquids and supplements you put in your mouth so your body can use what is contained within for its health and energy–i.e. nutrients.

Your digestion also  helps you move out waste products in a timely manner. Healthy digestion helps proteins you consume break down into amino acids, helps any carbs you eat break down into simply sugars, helps fats break down to important fatty acids.

What can be obvious symptoms that I have a gut health problem?

  • Bloating           (especially due to excess bacteria in the gastrointestinal tract)
  • Excess Gas     (some gas is very normal throughout the day–this is about far too much)
  • Constipation   (very common with undiagnosed or poorly treated hypothyroid)
  • Diarrhea          (no gall bladder, intolerance to raw products, lactose intolerance, irritable bowel syndrome, etc)
  • Chronic Inflammation  (symptoms can include that spare tire, or any of the above; gluten intolerance)
  • Heartburn       (can be related to low stomach acid or a damaged gut lining)
  • Sugar cravings  (candida/excessive yeast, possible nutrition deficiencies, etc)
  • Bad breath        (acid reflux, ulcers due to a stomach bacteria, poor dental hygiene, etc)
  • Food allergies/sensitivities    (overreactive immune response; possibly GMO products; genetics)
  • Depression or being moody   (which could also be hypothyroid symptoms)
  • Skin problems like eczema   (due to poorly performing gastrointestinal tract)
  • Diabetes, mostly including Type 2, but also those with Type 1 (inability of insulin to control sugar levels)
  • Autoimmune diseases  (leaky gut, genetics)
  • Immune suppression    (having frequent illnesses)

What I even discovered about me and good bacteria

I have never tended to have gastrointestinal problems. But some are silent, as I found out about me! I did the 23andme.com genetic testing and found out that because of mutations, I never have enough of the bifada good bacteria in my system.

We all need good bacteria in our gut. That bacteria helps fight disease. It helps neutralize some of the toxins released by digestion, and can reduce harmful substances. The right amount also discourages the build up of bad bacteria and yeast.

OOPS. I’ve also recently discovered that I need to stop licking the bowl after making cake mix, because the raw ingredients do not sit well with my gastrointestinal tract. Darn. lol.

Where can I read more to find answers?

Here is a great article that though it can focus on Hashimoto’s disease patients especially, you don’t have to have Hashi’s to greatly benefit: https://stopthethyroidmadness.com/10-gut-health-questions/

Here is a compilation of issues to read about from Dr. Axe: https://draxe.com/category/health-concerns/gut-health/

Here’s an article with great pictures and easy to understand from the National Institute of Diabetes and Digestive and Kidney Diseases: https://www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works

This video is kinda cool, taking a camera through your gastrointestinal tract!! https://www.youtube.com/watch?v=-1aZj6v6dxc

We would love to hear from you about your own gastrointestinal issues as a thyroid patient and how you have treated them. I am not an expert on them, so you may not see me comment. Hopefully others who have gained knowledge can reply.

 

 

 

 

 

 

Need a gut group? This is one I know about. Note that mentioning it means I’m making no guarantees about any group mentioned on here and you take full responsibility for outcomes in using any group:  https://www.facebook.com/groups/FTPOGluten/  It’s now a privately run Gut Group.

TIP:

DO YOU HAVE NIGHTTIME SLEEP WAKE UPS? I have always been a total NDT user. For the last few months, I had to switch to mostly T3 with a smaller amount of NDT to counter high RT3 due to chronic inflammation (which is now fixed). But during that time, I would wakeup too easily in the middle of the night, and I knew I didn’t have adrenal problems, which also causes this problem. Well guess what? I tried to take a small amount of T3 right at bedtime (in addition to what I was already taking during the day). It was perhaps a third of a 25 mcg tablet. And guess what? I SLEPT BETTER!!

14 replies

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