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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 never represented…
…stern black and white rules (to follow or else),
…narrowly defined methods (to follow or else),
…only this or that supplement, or in unneeded massive amounts for many, to achieve a particular result (to follow or else)?
Additionally, Stop the Thyroid Madness has also never been about making something up.
Stop the Thyroid Madness has 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 information that has been compiled on STTM!
Instead, Stop the Thyroid Madness is a compiled site 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:
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.
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…somewhere, meaning that is a gray of where below the range it will be for this body. 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.
OPTIMAL AMOUNT OF NATURAL DESICCATED THYROID (NDT): it varies! Thought it happens and is rare to be optimal below 2 grains..and maintain it…it can happen. More though start being optimal in the 2 grain area. Some 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 the lower 100’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.
WHEN TO DO THYROID LAB WORK IF ON MEDS: For many 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, our free T3 levels are going to peak anywhere from 2-4 hours according to a variety of literature. Then a slow fall for up to 12 hours–also in a variety of literature. i.e. we don’t want to test what’s going on for approx. 16 hours. We want to see what we are holding onto and doing it the next morning has worked well for over 15 years now.
WHO GETS AN ADRENAL PROBLEM: No, not everyone does while being poorly treated on T4, or being underdosed on T3 or NDT. But subjective observation reveals that a lot do. Another gray area of experiences. Here’s a few ways people find out…also check out Chapter 5 in the revised STTM book.
LOWERING HIGH CORTISOL: 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 might even need four. What we’ve rarely had patients report is needing massive amounts of these to do the job. Some report combining supplements, like one holy basil and one Relora. 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.
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.
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.
HAVING HYPER-LIKE SYMPTOMS: this seemed to be an area that had different causes–those gray areas. For some, they were due to having low cortisol, causing a release of adrenaline. Some, though not all, felt them with high cortisol. Another cause: 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. Please, if you ever had concerns about your heart, we hope you will work closely with your doctor.
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 for a long period of time. Gray areas! As always, there are strong opinions about there about gluten period. But everyone should decide for themselves.
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. 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 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, and with an easy going attitude that a lot of people sure do seem to like: https://www.facebook.com/groups/AdrenalFatigueandThyroidCare/