18 Summaries of Things We Have Learned
“First they ignore you, then they laugh at you, then they
fight you, then you win.” ~~Mahatma Gandhi
MESSAGE FROM JANIE BOWTHORPE, hypothyroid patient and site creator: I have always liked this particular page. It represents a summary of what patients worldwide have stated they have learned over the years in their journey towards feeling better again. Patient statements have been collected in specific groups owned by Janie, or those she has participated in over the years, or in coaching calls, interviews, emails, comments to the STTM blog, or one-on-one interactions. If you want even more details, that’s where you can also turn to the updated revision STTM book.
Click here for the updated revision Stop the Thyroid Madness book (for any cause of hypothyroidism on patient experiences and wisdom)
Click here for the Hashimoto’s: Taming the Beast, a patient-to-patient companion book to the above for Hashi’s patients.
HERE’S WHAT WE HAVE LEARNED:
1. Patient-to-patient wisdom as shown on Stop the Thyroid Madness LLC has been sorely needed
Since the early 1960’s, too many thyroid patients have had problems, yet our doctors proclaimed us “normal”, saying our symptoms were due to “something else”. Or for those with autoimmune Hashimoto’s, the doctor would state to let it run its course. Thus we’ve been band-aided with more medications to treat problems that have been related to our autoimmune or non-autoimmune hypothyroid state: statins, blood pressure meds, pain meds, anti-depressants, anti-anxiety meds and more. Something had to be done! Thanks to the internet, and a group that Janie A. Bowthorpe, M.Ed. started in 2002, thyroid patients started comparing notes, and that lead to discoveries of far better ways to diagnose and treat our hypothyroidism. So Janie began to compile all the reported patient experiences and wisdom on this website–which is what Stop the Thyroid Madness focuses on: patient-to-patient, not empty opinions. It was followed by the #1 rated thyroid book for ALL causes of hypothyroidism, aka the bible of correct thyroid treatment and related: https://laughinggrapepublishing.com/product/sttm/. Then comes the companion book Hashimoto’s: Taming the Beast. The purpose of Stop the Thyroid Madness? To EMPOWER YOU, whether in the decisions you decide to make for yourself, or the direction you demand in the doctor’s office.
2. The two main treatment problems: being on nothing but T4-only medications, and going by the TSH lab test
a) T4-only medications as a sole treatment has a miserable history as reported by patients, leaving us with our own degree and kind of lingering symptoms of hypothyroidism…sooner or later. More in Chapter 1 of the updated revision STTM book.
b) The TSH lab test has completely failed us, implying we are “normal” for years while we suffer from clear hypothyroid symptoms. Even worse, using it while on thyroid meds seemed to STILL keep us hypothyroid! It’s NOT about a pituitary hormone nor that INSANE “normal” range. See Chapter 4 in the updated revised STTM book about the TSH called “Thyroid Stimulating Hooey”, as well Chapter 4 in the STTM II book titled “The Unreliable TSH Lab Test” by Jeffrey Dach, MD.
3. We need direct T3 in our treatment, whether T4/T3, T3-only, or a working Natural Desiccated Thyroid (NDT) like Armour. And with any of the latter, getting those frees optimal is key.
All along, there was always a treatment which worked far better, as has been strongly reported by patients. It should have always been about having T3 in our treatment, and getting optimal…NOT forcing us to live on T4 alone. Though many of the prescription NDT’s went south the last few years, there are proven alternatives—scroll down on this page. Plus it’s IMPORTANT to have good iron and cortisol before raising to prevent problems with T3 in your treatment.
4. There is better lab work, we learned!
At the beginning of the quest, we found out we needed particular labwork (and we learned NOT to take our thyroid meds before the blood draw—the T3 peaks and makes the free T3 look too high to an uninformed doctor). If your current doctor won’t order all the lab work, you can legally order your own–click on the former link for facilities, including ordering your own saliva cortisol test.
5. We learned how to read lab work, which is NOT about falling anywhere in the “normal range”, we observed and discovered.
This was a huge discovery for patients in observing each other’s lab results and first reported on STTM. Namely, being anywhere “in range” can leave us with our sluggish thyroid state! It’s “where” we fall in the ranges that we noticed repeatedly having meaning. You can read about that in the updated revision STTM book. Again, we found out that we did NOT want to take T3 in our treatment before labs or wecan get a false high FT3, called the peak, which tends to create the false impression that we’re on too much, yet we haven’t been at all.
6. Have autoimmune Hashimoto’s Disease? It’s very treatable, we learned over the years. We do NOT have to “let it run its course”.
If one of both of the two antibodies labs reveal you have the autoimmune Hashimoto’s disease, this patient-to-patient book is for you, called Hashimoto’s: Taming the Beast. It’s an excellent companion book to the updated revision STTM book. You’ll read about the importance of gut health, all sorts of environmental triggers you need to avoid, genetics of Hashi’s, a great deal of research footnotes and links, and best of all, a good amount of patient-to-patient testimonies on how Hashi’s patients lowered their antibodies, how they changed the way they eat, and MORE. And note that we discovered BOTH antibodies have to be done, not just one. We found that the vast majority of those with Hashi’s tolerate a working NDT well, or T3 in their treatment and getting OPTIMAL. They can also benefit from iodine use, contrary to what you read!
7. If someone doesn’t tolerate T3 in their treatment, it’s what it’s pointing to, not a problem with the T3 itself. Don’t be fooled!!
It was interesting to us years ago that when T3 in our treatment causes hyper-like symptoms (higher heartrate, palpitations, shakiness, anxiety, etc) or sends us the emergency room, it’s about what the T3 in our treatment is pointing to: an adrenal / cortisol problem. And that very cortisol issue can also cause FT3 to go high in the blood, not making it to the cells, which we call pooling. So that cortisol issue will need to be discovered and treated. Chapters 5 and 6 in the updated revision STTM book cover more details.
Or, if we stay on TOO LOW A DOSE OF T3, that too low dose can cause adrenaline to go up, causing similar symptoms. Why do many patients end up on too low a dose? Usually, it’s due to a doctor’s fear of T3 from poor training, or due to how T3 in our treatment lowers the TSH, which practitioners mistake for the low TSH with Graves’ disease. They are not the same. Read what being optimal is with T3 in our treatment.
8. Cortisol problems are rampant due to T4-only, being undiagnosed hypothyroid, or being underdosed due to the TSH.
Sadly, since thyroid patients can remain hypothyroid due to being held hostage to the TSH lab result, or are just underdosed on NDT or T4/T3, or just being on T4-only meds, the stress can cause cortisol problems in many. And it’s another issue you will need to treat! The last chapter in the STTM II book brilliantly explains why and how we fall into low cortisol, for example. Low cortisol (and sometimes mixed with high) can cause irritability, easy to anger, impatience, paranoia, denial, defensiveness, and waking up in the morning feeling unrefreshed or hard to get going. So patients have found it VERY wise to learn about the adrenals early on by starting with the Discovery Steps (with even more detail in the updated revision book). See all the wisdom about adrenals and treatment in order to guide a doctor—they are very backwards about all this. See Chapters 5 and 6 in updated revision STTM book for even more details which are very important!!
9. Serum iron deficiency (and it’s about FOUR iron labs) is common with being on T4 alone or being underdosed even with T3 in one’s treatment…
We learned repeatedly that “being in range” doesn’t equal “optimal”. And non-optimal serum iron is all-too common with thyroid patients, both female and male, and like adrenal issues, can cause problems when you try to raise a working NDT or T4/T3. It’s probably due to the fact that when hypothyroid, you don’t absorb nutrients as well. And remember: t’s about FOUR iron labs, NOT just ferritin. Lots more in the Odds and End chapter of the updated revision STTM book. Good information to share with your doctor. Have high iron? Go here. Some have the MTHFR mutation causing a poor ability to break down iron and other heavy metals, and we see that revealed with low ferritin along with good or high iron.
10. It’s important to test our Reverse T3 (RT3)
RT3 is an inactive hormone. And we can see it go too high due to low iron, inflammation, or high cortisol, besides Lyme, mold inhalation or other stressors. And the higher it goes, the more hypo we will become due to its inactivity. Where does RT3 sit in people without a problem? In the bottom of the range, if not below.
11. The use of T3 has its place, we found out.
A small minority of patients have a mutations, like with the DIO1 gene, rs2235544, which negatively affects the ability to convert T4 to T3. So treating with mostly T3 is an answer, they report. Others will use T3 along with lower levels of a working NDT or T4 in the face of too-high levels of Reverse T3. Lyme disease and mold illness is another reason to go on T3, many patients have discovered, since infections can push RT3 up. There’s an excellent chapter devoted to T3 in the updated revision STTM book. A must read.
12. We need to be aware of mistakes patients have made to NOT make them ourselves.
Because a patient’s doctor may not have caught up with reported successful patient experience, or a patient’s brain fog makes it hard to understand it all, lots of mistakes are made. Read about patient mistakes and be prepared to teach your doctor. (Chapter 11 in the updated revision STTM book covers them, too, with more details). Get your ducks in a row.
13. How to Find a Good Doctor (which too often isn’t about Endocrinologists)
It’s not easy. Too many practitioners are wrongly obsessed with the TSH, with the use of nothing but T4, with unfounded fears about the use of cortisol or T3…on and on. Many of us have doctors who aren’t knowledgeable enough, or who send us to an Endocrinologist who ends up disappointing us with their rigid reliance on the TSH and T4 meds. So the search for a good doctor may need to be broader than that. Learn how to find a Good Doctor. Do your homework and you can find one who will HELP, not hinder you. There’s a chapter in the updated revision book directed to doctors.
14. Even with better doctors, you HAVE to go in informed and expect to guide.
15. Iodine can help us–don’t fall for scare mongers.
Since thyroid hormone are primarily composed of iodine, the use of iodine has sparked a lot of interest with thyroid patients. And iodine has SO many useful properties, including breast health for women, removal of toxins, as well as anti-cancer properties for all. Unfortunately, some patients are grossly misinformed about the use of iodine. Learn about iodine. Iodine is also covered in the Odds & Ends Chapter of the updated revision book. And yes, there are some Hashi’s patients who saw their antibodies go down JUST from iodine. Hashi’s patients go low and slow to slow the detox. Read about iodine use with Hashi’s in the book Hashimoto’s: Taming the Beast.
16. Depression, BiPolar and Other Mental Health problems can be related to our hypothyroid state.
Yes, we found out that our hypothyroidism, and complicated by adrenal issues, can be the root cause of a variety of mental health problems, including depression! We’re not saying all mental health issues are caused by the latter, but we saw that many were. Read about it here. There’s an entire chapter devoted to this in the updated revision STTM Book.
17. We need each other.
There are good patient groups to get support and information. Be careful with what is stated in ANY group, though, as not all information is good whereas others just may be! Compare what you read to what patient information is on STTM.
You can also do a one-on-one personalized phone coaching/consultation with Janie Bowthorpe, the creator of this site who has 20 years of collecting patient information under her belt.
18. Yes, some medical research or articles are verty faulty. Yet there are some that support what we’ve learned.
Yes, in spite of dubious research or articles claiming T4 is a dandy treatment (not) or the TSH is the only lab needed (not), there is better medical research which backs up patient experience! In addition to the updated revision STTM book, which everyone should have to refer to, Hashimoto’s patients will appreciate the patient-to-patient book Hashimoto’s: Taming the Beast. Use the information you learn in working with your doctor.
Here is the Site Map for all pages on STTM. The most IMPORTANT part of this process is YOU. You have be very informed when you walk into that doctor’s office in order to guide him or her in the right direction if you value successful patient experience and wisdom. You can also make wiser decisions for whatever else a good doc has to give you. We are always evolving. And it’s strongly recommended to have the updated revised STTM book, as it has even more detail, and it’s recommended to have with you in the doctor’s office.
To be continued….
Want to order your own lab work to take to your doctor for consultation?? Check out facilities here: recommended-labwork
You can order the STTM books right here. They will help change your life. Here’s what they look like below…