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
Did you know that none of us will get well if we are not EDUCATED as to what patients before you have learned? That’s because we are far ahead of doctors, and you have to be prepared to guide them, or find a better one. Or like those in the UK, ordering their own meds. YOU HAVE TO LEARN THIS to get well!
FIRST, there are two books that are highly recommended to educate you. Don’t hesitate to highlight, underline and bookmark the pages:
2019 updated revision Stop the Thyroid Madness book (for any cause of hypothyroidism on patient experiences and wisdom)
Hashimoto’s: Taming the Beast, a companion book to the above for Hashi’s patients.
HERE’S WHAT WE HAVE LEARNED:
1. Stop the Thyroid Madness LLC has been 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 Hashi’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 Bowthorpe 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. It was followed by the #1 rated thyroid book for ALL causes of hypothyroidism with even more details, plus for those with Hashi’s, the companion book Hashimoto’s: Taming the Beast. The purpose of Stop the Thyroid Madness? To create better informed hypothyroid patients who, in turn, can take this patient-reported and solid information into their doctors offices and create change in their treatment.
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 all-too-many patients, leaving us with our own degree and kind of lingering symptoms of hypothyroidism…sooner or later. More in Chapter 1 of the updated revised 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. Natural Desiccated Thyroid–a better treatment is discovered! (But thanks to changes made to all prescription NDT’s which has made them inferior to what they used to be, they are hard to recommend anymore. The over-the-counter natural thyroid supplements like Thyrogold, et al, may be better.) Even adding synthetic T3 to synthetic T4 has been FAR better than just T4-only.
All along, there was always a treatment which worked better, as strongly reported by patients–natural desiccated thyroid. Changing over to this simple, consistent and quality natural medication has changed lives! It has exactly what our own thyroid would make: T4, T3, T2, T1 and calcitonin. Sadly, some uninformed doctors will exclaim that it’s inconsistent and unreliable. NOT SO, say patients! You can see all the known brands and ingredients here, and more about which to take here. Even working with your doctor in adding synthetic T3 to your T4 has shown to be much better choice than T4 alone, say reported patient experiences...but remember, you are looking to find your “optimal dose“, not just any dose, report patients….plus it’s IMPORTANT to have good iron and cortisol before raising. This is where you must read Chapter 2 in the 2019 updated revised STTM book which has very interesting detail about NDT and its history. and also applies to T4/T3.
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–see the link above for facilities.
5. We learned how to read lab work–i.e. it’s not about being anywhere in the “normal range”, we discovered.
This was a huge discovery for patients in observing each other’s lab results and first reported on STTM. Namely, being “in range” has nothing to do with being “optimal”, we saw again and again! It’s “where” we fall in the ranges that we noticed repeatedly in each other. You can read about that here and in the updated revised STTM book. Again, we found out that we did NOT want to take desiccated thyroid before labs or you can 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 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 NDT well, and it can even lower your antibodies if you achieve “optimal”.
7. If someone doesn’t tolerate Natural Desiccated Thyroid or T3 with their T4, it’s what it’s pointing to, not a problem with NDT or T3 itself. Don’t be fooled!!
There are reasons which have nothing to do with Natural Desiccated Thyroid or T3, we noted in each other….or the false idea that NDT has too much T3. 1) Some simply don’t raise their NDT or T4/T3 to an “optimal” dose–a common mistake which eventually causes a worsening return of hypo. 2) But others found out that NDT or T4/T3 simply reveals certain problems: a cortisol issue and/or low iron. Cortisol issues can cause anxiety or hyper-like symptoms when one tries to raise NDT, plus one’s free T3 to go high in the blood and not make it to the cell, which we call pooling. Inadequate iron pushes reverse T3 up, the inactive hormone. So testing those and correcting them before raising has been key in order to soar on NDT. Also Read #8 and 9 below. Lyme disease may complicate use of NDT and require T3-only–it’s individual. Work with your doctor.
8. Cortisol problems are rampant due to T4-only 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. 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 revised 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 revised STTM book for even more details which are very important!!
9. Serum iron deficiency is common with being on T4 alone or being underdosed…
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 natural desiccated thyroid or T4/T3. It’s probably due to the fact that when hypothyroid, you don’t absorb nutrients as well. And remember: it’s about FOUR iron labs, NOT just ferritin. Lots more in the Odds and End chapter of the 2019 updated evised 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. Minerals can be important.
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 going on T3 is an answer, they report. Others will use T3 along with lower levels of NDT or T4 in the face of too-high levels of Reverse T3. Lyme disease 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 revised 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 them here and be prepared to teach your doctor. (Chapter 11 covers them, too, with more details). Get your ducks in a row.
13. How to Find a Good Doctor (it’s not about Endos)
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, whether ending up with an Endo or not! Here is 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 revised book directed to doctors.
14. Iodine can help us–don’t fall for scare mongerers.
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 revised 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.
15. 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! 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 revised STTM Book.
16. There’s reason to be inspired!
17. We need each other.
There are good patient groups to get support and information. Many are listed here. Be careful with what is stated in ANY group, 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 with Janie Bowthorpe, who has 17 years of collecting patient information under her belt.
18. Yes, some medical research or articles are ludicrous. 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 revised STTM book, which everyone should have to refer to, Hashimoto’s patients will appreciate the 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…