Things Patients Have Learned
“First they ignore you, then they laugh at you, then they
fight you, then you win.” ~~Mahatma Gandhi
1) beginners to the subject
2) if you feel overwhelmed by the large amount of information on STTM
3) if you feel AWFUL and are willing to let reported patient experiences help you in working with your doctor! 🙂
4) If you need to fine-tune what you already know!
And it’s highly recommended to get the Revised Stop the Thyroid Madness book as well. It’s easier to use and follow, can be useful at the doctor’s office, and you can share it with others. Many patients also order it to be sent to their doctor…
Why Stop the Thyroid Madness was started
Since the early 1960’s, it turns out that many thyroid patients have had problems, yet our doctors either proclaimed us “normal”, or said our symptoms were due to something else, and bandaided them with more and more medications. 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. It was followed by the #1 rated thyroid book with even more details. The purpose of both? To create better informed patients who, in turn, can take this patient-reported and solid information into their doctors offices and create change in their treatment.
The two main problems: T4-only medications, and the TSH lab test
a) T4-only medications have 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 revised STTM book.
b) The TSH lab test result can be “normal” for years while we suffer from clear hypothyroid symptoms. Even worse, using it while on thyroid meds seemed to STILL keep us hypothyroid! See Chapter 4 in the 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.
Natural Desiccated Thyroid–a better treatment is discovered!
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. Some uninformed doctors will exclaim that it’s complicated, 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, say reported patient experiences…but remember, you are looking to find your OPTIMAL DOSE, not just any dose. Chapter 2 in the revised STTM book has more detail.
There is better labwork, 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 labwork, you can legallly order your own–see the link above for facilities.
How to read labwork–it’s not about being in the “normal range”
This was a huge discovery for patients in observing each other’s labwork. Namely, being “in range” has nothing to do with being optimal, we saw again and again! It’s “where” we fall into the ranges that we noticed repeatedly in each other. You can read about that here and in the revised 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.
Hashimotos Disease is treatable, but there are optimal ways!
If one of both of the two antibodies labs reveal you have the autoimmune form of Hashimotos disease, read all about it here. And note that we discovered BOTH antibodies have to be done, not just one. The Revised book has good chapter devoted to Hashimotos with even more detail. It can be treated and you can feel better again!! And no, we found that the vast majority of those with Hashi’s tolerate NDT well, but it’s up to you in working with your doctor.
Why some don’t tolerate Natural Desiccated Thyroid–it’s about something else!
There are reasons which have nothing to do with Natural Desiccated Thyroid, we noted in each other….or the false idea that it has too much T3. Some simply don’t raise their NDT high enough–a common mistake!! Others found out that NDT simply reveals certain problems: a cortisol issue and/or low iron, which can cause the T3 to pool high in our labs! Getting those corrected and folks then seemed 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.
Sadly, since thyroid patients can remain hypothyroid a long time because of the inadequate TSH lab test, or because patients can remain hypothyroid due to T4-only meds, many fall into having low cortisol, and it’s another issue you will need to treat!! The last chapter in the STTM II book brilliantly explains how this all happens. Low cortisol can cause problems when raising desiccated thyroid or using any T3, and your clueless doctor mistakingly blames the medication! Low cortisol can also make you irritable, impatient, paranoid, more hypothyroid, and wake up feeling unrefreshed or feeling it 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 revised book). If we find ourselves with low cortisol, it can be wise to work with a good doctor about treatment. See all the wisdom about adrenals and treatment in order to more wisely work with your doctor. See Chapters 5 and 6 in revised STTM book for even more details which are very important!!
We learned repeatedly that “being in range” doesn’t equal “optimal”. And non-optimal 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 if not corrected. It’s probably due to the fact that when hypothyroid, you “dry up”. i.e, you stomach acid goes too low, and you stop absorbing important nutrients as well. You can read about low iron and all the important labs here. Lots more in the Odds and End chapter of the revised STTM book. Good information to share with your doctor. Have high iron? Do an internet search for Hemochromatosis. Some have the MTHFR mutation causing an poor ability to break down iron and other heavy metals, and we see that revealed with low ferritin along with good or high iron.
Minerals can be important.
The Use of T3-only
A small minority of patients have a defect in the ability to convert, so going on T3 is an answer, they report. Others will use T3 along with lower levels of NDT in the face of an adrenal issue or low iron, each which can cause too-high levels of Reverse T3. Lyme disease is another reason to go on T3, many patients have discovered. There’s an excellent chapter devoted to T3 in the revised STTM book. A must read.
Mistakes Patients Make
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.
How to Find a Good Doctor
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.
Iodine is appreciated.
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, ranging from over-exaggerated claims of its positive effects, to false claims as to problems. Learn about iodine. Iodine is also covered in the Odds & Ends Chapter of revised book.
Depression, BiPolar and Other Mental Health problems
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 revised STTM Book. You can get past this, we have learned repeatedly.
Talk to Other Patients
There are many 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! Note that NO GROUP is meant to replace a relationship and guidance with a doctor! Compare what you read to what patient information is on STTM. You can also do a one-on-one personalized phone coaching with Janie or other coaches, which many patients love. It’s mentioned at the top of the same link above, and know that it’s about sharing patient information based on your issue, not about diagnosing or prescribing.
Medical Research plus more books.
Yes, in spite of dubious research claiming T4 is a dandy treatment (not), there is better medical research which backs up patient experience! In addition to the revised STTM book, which everyone should have to refer to, you can also get the new STTM II book, totally written by more informed doctors. You can compare the two STTM books. Here are other books to add to having the revised STTM book (the latter the ONLY patient-to-patient book on the market). 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 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 labwork to take to your doctor for consultation?? Check out facilities here: recommended-labwork
You can order the two STTM books right here.