The Gray Areas of Patient Experiences
The information on this important page was originally written as a blog post by me, Janie Bowthorpe, hypothyroid patient and creator of Stop the Thyroid Madness. But I decided it was important to make it timely as a page (rather than on a dated blog post). Plus making it a page makes it easier to find!
Stop the Thyroid Madness, based on years of reported patient experiences, observations, and wisdom, 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…
…empty strong opinions based on the ego of the creator or of others.
Instead, Stop the Thyroid Madness, whether the website, the facebook page, or the books, is focused on two decades of patient reported experiences, observations, and the wisdom gained, including noticing some gray areas…
Here are a variety of examples of those Gray Areas of Patient Experiences (with a few givens) below. Those below are not an exhaustive list of gray areas!
Related to hypothyroidism in general:
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.
Related to desiccated thyroid or T3:
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: 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.
Related to T4-only by itself like Synthroid, Levothyroxine, Eltroxin, Tirosint, and etc
T4-ONLY USE: A strong gray area we have noticed: some who started on nothing but a T4 med did well, which others never did well from the beginning. Some on T4-only do well longer than others, too. But one given that has seemed to fit the majority (even if not for a minority)–symptoms creep up the longer they force their bodies to live for conversion alone. The gray area is when they creep up. T4 is not the active hormone: T3 is. And there are too many variables 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 can leave a large body of us with clear hypothyroidism undiagnosed. Why? For what appears to be many, it can take years to rise high enough to reveal one’s hypothyroid state. Thus, we can be hypothyroid for years without the TSH revealing it. 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 of hypothyroid or Hashimoto’s patients do. Here’s a few ways people find out…also check out Chapter 5 in the updated revised STTM book.
SYMPTOMS OF AN ADRENAL PROBLEM: There are some symptoms very common between individuals, others not so common. More common symptoms for most (though not all) can be feeling tired when waking up in the morning; feeling more emotionally reactive, argumentative, irritable, and/or defensive; more sensitive to bright lights or loud noises; noticing more heart palps; either having a hard time falling asleep at bedtime, or waking up the next hour or two after falling asleep; waking up in the middle of the night…..those are just a few.
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. 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! It’s called Seronegative Hashimoto’s (see it mentioned in the book Hashimoto’s: Taming the Beast). The latter patients have 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 NATURAL DESICCATED THYROID: Remarkably, there are a strong body of Hashi’s patients who have reported that NDT alone lowered their antibodies! We were at first surprised because of all the negative “opinions” about the use of NDT with Hashi’s. But, there are others who do see their antibodies go up with it–which of course makes sense as thyroid antibodies see thyroid as the enemy, and desiccated thyroid is “thyroid”. So many of them report success going up low and slow, and getting an optimal free T3. Optimal seems to turn the overreaction around for some. Others may need to be on the two synthetics, T4 and T3. Gray areas.
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, linear, or rule-bound as it can often be reported in some groups. Hope that helps! Use STTM to work better with your doctors!