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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! It is RARE to be optimal below 2 grains. Others (and more than the latter) start being optimal in the 2-3 grain area. And others are optimal in the 3-4 grain area. (Janie is at 3 3/4 grains, as just one example) Some are optimal in the 4-5 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 cortisol aldosterone–you can’t get optimal without having problems if cortisol and aldosterone aren’t optimal, too. Read about optimal!

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 the 100’s of mcg of T3 to finally get rid of all their symptoms and maintain that. Read about optimal. 

T4-ONLY USE: A strong gray area we noticed: “some” who started on T4-only like Synthroid or Levo did 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 go up to the upper 30’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.

GET THE UPDATED STTM BOOK HERE: https://laughinggrapepublishing.com/

 

102 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: https://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.

102 replies

Can things get any crazier for UK Thyroid Patients? Apparently so. Horribly so.

Doctors will have more lives to answer for in the next world than even we generals.
~Napoleon Bonaparte

Is it possible that what was already awful….can be MORE awful?? Apparently so in the UK (United Kingdom).

If you are a thyroid patient in the United Kingdom (UK), the absurdity is increasing, becry patients!

Absurdity Part One: Yes, like everywhere else, UK hypothyroid patients have been put on T4-only, aka Levothyroxine for decades with the idiotic expectation that it would convert to the amount of T3 one needs. It hasn’t for all too many.

But the absurdity deepened.

Absurdity Part Two: Next came the idiotic idea that a TSH lab test (a pituitary hormone, not a thyroid hormone) had to get over 10 before one would receive any treatment. Over 10? Really?? How many of us have had a TSH in the 2’s with raging hypothyroid symptoms! The answer: a lot. It’s NOT about pituitary hormone that LAGS behind what is going on.

Insanity Part Three: 2017 saw the worse become total insanity: the National Health Service (NHS) stating that T3 (the active thyroid hormone) has “little or no clinical value” thus removing the availability of liothyronine (T3-only) medication as an alternative or adjunct thyroid replacement therapy. And with that removal of T3 medication from the NHS, patients have watched doctors go absolutely loco, loopy and wacky.

A nightmarish example by UK hypothyroid patient Elaine, told to lower her T3

Here are her own words of what is happening to her:

I was on 55 mcg T3-only via the NHS for over 4 years (with some improvement, even if not optimal). But earlier this year, the new Endo who I saw for my osteoporosis diagnosis insisted that the osteo was in part caused by my suppressed TSH on the 55 mcg T3 (False. See below), and started me on (with my agreement) a mix of T4/T3 to be slowly introduced.

First I was on 25 mcg T4 (in July) and less T3 at 35 mcg.
Then was moved up to 50 mcg T4 and down to 25 mcg T3 after 2 months
Then I was moved up to 75 mcg T4 and down to 20 mcg T3.

Immediately with the last change, my immune system began to deteriorate and I got frequent colds, even though it was summer. This sickness issue has continued. My immune system was already precarious, but it worsened and I had immunoglobulin tests which confirmed this. I have low IgA and low IgG, but not low enough that they would refer me.

I then had 4 migraines in a week, rather than once a month as I had been doing.

So I have stopped the regime and backed the T4 down to 50 mcg and the T3 up to 25 mcg. The trouble is that it doesn’t feel like enough. My energy is flat and my joints are beginning to hurt. I have written to the Endo but I suspect that they will not agree with my reasons, and that I will be pressured to conform ‘for the sake of my bones’. But I cannot allow myself to become more ill just to suit their agenda. I was even told by the thyroid nurse that I would not feel as well on this regime!!!

I think ultimately I may be forced to treat myself to have any quality of life. I have begun to stockpile T3 which I have bought privately to prepare myself for this scenario. Not good, either way at any rate.

Why did Elaine get osteoporosis? Does a suppressed TSH equal bone loss??

Elaine’s osteoporosis may have had nothing to do with a suppressed TSH–the latter which is quite normal, with no issue, when one is on NDT (Natural Desiccated Thyroid) or T3. It is NOT the same as a suppressed TSH with Graves disease!!

In fact, when optimal on NDT or T3, which suppresses the TSH, patients have REPEATEDLY reported strengthen bones as revealed by testing, and/or a reversal of osteopenia.

Instead, Elaine was still hypothyroid.

The evidence? She had adrenal issues/low cortisol as proven by saliva testing. Finding oneself with low cortisol is COMMON for those who have been forced to live for conversion alone with Levo or Synthroid. And the side effect? Thyroid hormones like T3 don’t get to the cells well, and instead, start pooling high in the blood. She did find herself with a high free T3 long after she had taken her thyroid meds–too long after.

Bottom line, contrary to the suppressed TSH with Graves disease, it’s NOT a “suppressed TSH” from being on T3 which is causing bone problems. It’s about still being hypothyroid!

1) T3 regulates bone turnover and mineralization in adults. http://www.endocrine-abstracts.org/ea/0004/ea0004s5.htm

2) The skeleton is considered as a T3-target tissue https://www.karger.com/Article/PDF/345548

3) Thus, all the factors required for locally regulated T3 action, including thyroid hormone transporters, metabolizing enzymes and receptors, are present in cartilage and bone indicating the skeleton is a physiological target tissue for thyroid hormone throughout life https://www.karger.com/Article/PDF/345548

4) ….during bone formation, T3 stimulates osteoblast proliferation, differentiation and apoptosis, and increases the expression of osteocalcin, type 1 collagen, alkaline phosphatase, metalloproteins, IGF-1 and its receptor (IGF-1R). Subsequently, during bone resorption, T3 increases the expression of important differentiation factors of the osteoclast lineage such as interleukin 6 and prostaglandin E2 (5). Moreover, T3 acts in a synergistic manner with osteoclastogenic hormones such as parathyroid hormone (PTH) (9) and VD (10). It has also been demonstrated that T3 increases the expression of mRNA of the ligand of receptor activator of nuclear factor-κβ (RANKL) in the osteoblast, which activates RANK present in osteoclast precursors a key step in the osteoclastogenesis (7). http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-27302014000500452

5) Without sufficient T3, then, normal bone remodeling is disrupted, and bone resorption happens at a more rapid rate than bone building. The result: decreased bone density and osteoporosis. https://saveourbones.com/can-a-slow-thyroid-cause-low-bone-density/

And the above five examples only touch the surface of the information out there about T3 and your bones. Read this: https://stopthethyroidmadness.com/bones/

Bottom line, UK thyroid patients have it rough when their National Health Service has withdrawn the availability of T3 to patients who outright need this powerful thyroid hormone…and when doctors are clueless and push patients to lower the T3 they are already on…and to levels which do NOT work.

 

 

 

 

 

 

 

 

* See the April 2017 Guest Blog Post about the NHS stating that T3 has little or no clinical value: https://stopthethyroidmadness.com/2017/04/02/stupidity-award-nhs/

* Here’s why Levothyroxine has not worked as reported by millions of patients, whether from the beginning or the longer they stay on: https://stopthethyroidmadness.com/t4-only-meds-dont-work

* Here’s a UK-based facebook group attempting to fight for better treatment in the UK: https://www.facebook.com/groups/ITTCampaign/

* Are you a Hashimoto’s patient? Here are ten questions you need to ask yourself: https://stopthethyroidmadness.com/10-gut-health-questions/

 

22 replies

UH OH–Naturethroid and WP Thyroid Shortages and what to do

NOTE: this post starts with what was going on in September 2017, and there are updates to it at the bottom of the article. If you didn’t know about this, you need to sign up for blog post notifications at the bottom right of the STTM website.

UPDATE: since the new Naturethroid has come out in 2018, there have been an awful lot of patients reports in seeing their hypothyroidism return, with labs to prove it. It has not been pretty.

Feeling panicked or frustrated by the shortages of two particular brands of Natural Desiccated Thyroid? Let’s take a look at all of this and what you can do.

Brands of NDT

Nature-Throid® and WP Thyroid® are two brands of NDT produced by the U.S. pharmaceutical RLC Labs. (There’s even an older third brand occasionally still foundable: Westhroid, which is said to be exactly the same as Naturethroid, though in less strengths than Naturethroid provides.)

As mentioned in the most sought-after patient-to-patient hypothyroid book on the market, RLC (formerly Western Research) has been around a long time—since the early 1930’s. And it appears they aren’t about to end that long tradition of their existence.

Why the shortage

RLC explains that the shortages are due to “significant upgrades to our facility and equipment”. And though that has created great inconveniences to and frustrations by users of their products, it’s clearly stated by RLC to be a temporary issue, though the resolution may take awhile.

Steps to consider in the meantime

  1. Writing the prescription differently First, make sure you doctor writes your prescription in a way that you are able to get any other brand of NDT your favorite pharmacy provides. One way is for him to write simply “desiccated thyroid”, then the amount you use, instead of mentioning a brand.
  2. Call around to different pharmacies. Patients are reporting that some still have their supplies of Naturethroid or WP, and especially WP. See if that makes you lucky.
  3. Consider other NDT brands. For example, NP Thyroid by Acella has been proven by patients to be a solid and well-made Natural Desiccated Thyroid, similar to the old version of Armour. And there are no shortages of NP.
  4. Compounding pharmacies Though more expensive, these versions of pharmacies are a way to have your NDT made according to you or your doctor’s specifications, especially fillers used.
  5. Using synthetic T3 with synthetic T4 If the two synthetics are used, patients have learned that their goals end up being the same as Natural Desiccated Thyroid as far as lab results with the free T3 and free T4, plus removal of symptoms, as well as not going by the TSH lab test. To see different brands of synthetic T3 like Cytomel and others, go here and see them in pink.

Why a pharmaceutical might be doing an upgrade

The U.S. Food and Drug Administration (FDA) states they inspect pharmaceutical manufacturing facilities worldwide, based on standards outlined by the Current Good Manufacturing Practice (CGMPs) regulations. This is especially true for those facilities which manufacture active ingredients like “thyroid tissue”, as well as the finished pill or liquid product from the contained ingredients. They state “inspections follow a standard approach and are conducted by highly trained FDA staff.” 1

Says the FDA:

CGMPs provide for systems that assure proper design, monitoring, and control of manufacturing processes and facilities. Adherence to the CGMP regulations assures the identity, strength, quality, and purity of drug products by requiring that manufacturers of medications adequately control manufacturing operations. This includes establishing strong quality management systems, obtaining appropriate quality raw materials, establishing robust operating procedures, detecting and investigating product quality deviations, and maintaining reliable testing laboratories. This formal system of controls at a pharmaceutical company, if adequately put into practice, helps to prevent instances of contamination, mix-ups, deviations, failures, and errors. This assures that drug products meet their quality standards.2

If you really want to get detailed information on CGMPs, here you go: https://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/ucm064971.htm

Stop the Thyroid Madness has not seen anything stated from RLC that this is the reason for the upgrades causing the shortages. But it will be interesting to see what the Naturethroid and WP Thyroid tablets look like, and act like, after this upgrade and catchup.

UPDATE as of OCTOBER 10th, 2017:

Heard the following from a gal who called RLC Labs: They have been working on the one grain tablets, and stated they should be finished in about two weeks. Then they will be mass shipping to pharmacies after that time around the first of November.

UPDATE as of November 2nd, 2017

From RLC Labs:

We are happy to announce that Nature-Throid 1 grain (65 mg) is shipping! Shipping for this strength began a few weeks ago and it should be hitting pharmacy shelves soon, but that can be variable; some locations may even already have it stocked and available. If your usual pharmacy is unable to fill your prescription, we recommend contacting other local pharmacies to see what they have in stock. You can also try any of the mail-order pharmacies listed on our website for a potentially faster turnaround. Strengths are being prioritized based on highest demand, starting with Nature-Throid 1 grain, and we are releasing in all counts. The next strength to be released will be Nature-Throid ½ grain (32.5 mg), and we will post here when it starts shipping. We are unable to provide any updates around WP Thyroid at this time, but will share them and any other new details on this page as soon as they are available. Every effort is being made to have all strengths stocked and available as quickly as possible while still maintaining our strict quality standards–the industry allows for a monograph discrepancy of +/-10% between T4 and T3, but WP Thyroid and Nature-Throid are not released outside of +/-2%. Patients are and always have been the top priority at RLC Labs, and we are literally working day and night to get back to our usual pace as quickly as possible. Your understanding and continued support are greatly appreciated as we do our best to get back to our usual pace. *Please discuss all health-related questions or concerns, including those about symptoms, with your physician.

UPDATE as of January 15, 2018

https://getrealthyroid.com/product-availability.html

In the meantime, NP Thyroid by Acella is a good one to switch to. You may have to adjust it for your own needs.

MORE INFORMATION:

  • Can Hashimoto’s patients do well on Natural Desiccated Thyroid? Find out here.
  • Is it true that thyroid cancer patients should avoid NDT? See this.
  • How do I use Natural Desiccated Thyroid? See what patients have learned here.
  • What if I want to use synthetic T3 instead? See this.
  • Where do I get the Stop the Thyroid Madness books I hear so much about? Right here.

 

 

1. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
2. https://www.fda.gov/drugs/developmentapprovalprocess/manufacturing/ucm169105.htm
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