19 Thyroid Patient Mistakes
Below are the most common mistakes patients or their doctors make, in the treatment of one’s hypothyroidism. It’s all based on patient reported experiences.
Can you find yourself below? Share these with your doctor!
1) Thinking that because one feels good on Synthroid or other T4-only meds, there’s no reason to consider adding a T3 containing med or moving to just a natural thyroid supplement.
Bigggg thyroid treatment mistake, say patients in retrospect. Because via the recorded experiences of many thyroid patients over the past several decades, we discovered that symptoms of an inferior treatment do creep up the longer one stays on T4-only…in one’s own degree and kind. It’s simply not a pretty picture for all too many to think that staying on one of five thyroid hormones is going to work.
2) Sticking with too low a dose of a T3-containing med.
For a myriad of reasons, this happens often for those who add T3 to their treatment. Too often, it’s a measly amount which fails to get one optimal. Find out what optimal means. We also need to raise a T3-containing med approximately every 1-2 weeks on the journey towards getting that Free T3 optimal.
3) Being on an optimal dose and feeling great, but being lowered due to the TSH.
Similar to #2 above, this is the person who made his/her way up to an optimal dose which was working well, whether NDT, T4/T3 or just T3, but having the dose lowered by a doctor who saw a suppressed TSH lab result (i.e. below the range). A doctor can wrongly think that ink spots on a piece of paper, like the TSH lab result, tells the truth more than your symptoms! When on an optimal dose, which puts the free T3 towards the top, we’ve seen in ourselves a suppressed TSH without being hyper. (If you do feel hyper, see #4 below)
4) Deciding T3 in one’s treatment doesn’t work because one feels worse!
The misunderstanding is that feeling worse with T3 is about what it’s revealing: 1) Staying on too low a dose too long. That causes hypo to come back with a vengeance, and is why we raise our T3-containing med every week or so in a reasonable or small amount, or 2) Having an adrenal issue. Low cortisol, high cortisol, or even low aldosterone can cause hyper-like symptoms when raising T3 in one’s treatment like anxiety, or shakiness, or anything that seems like an overreaction. https://stopthethyroidmadness.com/ndt-doesnt-work-for-me (this link also applies to being on straight T3 in one’s treatment).
5) For some, failing to multi-dose
Occasionally, some patients take their T3-containing med thyroid all at once in the morning and say they do fine. But, most individuals report better results by dosing at least twice a day, such as morning and early to mid afternoon. Or with T3-only, three times a day, approximately every 4 hours apart, spreads out the good effect nicely and when the body most needs it.
6) Swallowing T3 in our treatment with estrogen, calcium or iron
Estrogen, calcium and iron bind some of the thyroid hormones and makes them unusable, we’ve learned the hard way! So, patients feel it’s wise to avoid swallowing these at the same time one swallow’s natural thyroid or T3.
7) Taking T3 or a workable desiccated thyroid before doing lab work
Bad mistake, said many patients in retrospect! T3 starts moving up in your blood after you take desiccated thyroid or T3, giving a high serum result. You are simply testing the natural rise of T3, not what you are hanging onto–the latter is what we need to test! And the doctor freaks out when he sees the rising lab result, and directs a patient to lower the thyroid med. Patients have learned to take their working desiccated thyroid or T3 the day before as usual, then do labs the next morning.
8) Staying on a starting dose too long (same as #1 above).
The key to understanding this thyroid mistake, as reported by patients, is with the word “starting dose”, which for many, is one grain for NDT (if the NDT hasn’t gone downhill, as so many did by 2019), or just a too-low dose of T3. Starting doses seem to help the body adjust to the direct T3. But if a necessary starting dose is held too long (from two weeks to several weeks) there’s a normal suppression of the feedback loop between the hypothalamus, pituitary and thyroid gland, i.e less messenger hormones are released, making you even more hypothyroid than you began (plus you may experience the results of extra adrenaline).
9) Thinking a T3-containing med is not working when a problem arises (outside of one’s adrenal function or iron levels)
The T3 can initially aggravate certain conditions. When this happens, doctors have had patients stop the increase, or decreased it to give the reaction time to go away. An example is Mitral Valve Prolapse, which Janie Bowthorpe has. She noted that with each raise, she had palps. But they went away within the first 5 days after each raise. One gal got itchy when she got on a former desiccated thyroid, and was so determined to blame desiccated thyroid that she got off, got back on Synthroid, and is STILL itchy.
10) “Guessing” one has an adrenal problem and acting on that guess…and/or having HC (hydrocortisone like Cortef) prescribed when the patient may not need it, and/or starting on too low a dose of HC if it’s needed….etc.
Patients reported noticing that symptoms of high cortisol can be very similar to symptoms of low. That underscored that guessing could be risky. So patients decided how important it was to find out the right way with a 24 hour adrenal saliva test, which you can order on your own, if needed, and then share the results with your doctor. See #10 below on how to read those results.
11) Thinking falling in the normal range means one is doing great.
Falling anywhere in those ridiculously broad normal ranges is a huge thyroid mistake. Instead, it’s where you fall in the erroneous normal range that has meaning. Learn how to read lab results.
12) Not understanding that one can feel good on too low a dose, and it backfires.
It is common to start feeling good on doses which are not optimal. The problem is that the feel goods eventually backfire and symptoms come back. We all have to be optimal, as years of our experiences have underscored.
13) Going up with dosages way too fast!
This was observed a few years ago: a doctor put his patient on a T3-containing med, raising quickly every week. And the patient started to find himself majorly overdosed with symptoms to match (high heart rate, sweating). He had to stop for a week or two, then resume again, testing the frees along the way.
14) Believing that T3 or a T3-containing supplement/med is “hard to regulate”
Totally and completely false, say many patients over the years. Patients found nothing hard about it. Working with their doctor, they simply watch their frees until optimal…and pay attention to whether their iron and cortisol are optimal to prevent problems with raising.
15) Thinking that if one simply eats correctly, they don’t need thyroid hormones.
Most Hashimoto’s patients do have to be careful with certain foods. What foods to be careful with is individual. It could be gluten, dairy, sugar, nightshades, you name it. But most of time, the destruction from the attack wasn’t caught quick enough and it’s revealed by too-low levels of Free T3 and Free T4. Thus, even with eating correctly, the majority can still need thyroid hormones. It’s revealed by testing the free t4 and free T3. Check out the book Hashimoto’s: Taming the Beast. Learn how to get those antibodies down, how to treat one’s Hashi’s, what other Hashi’s patients are doing to put their Hashi’s into remission.
16) Avoiding T3, a better desiccated thyroid, or iodine because of having Hashimoto’s disease.
Sadly, some doctors or people will inaccurately state that those with Hashimoto’s should avoid NDT meds or supplements, or T3, because it can increase the attack. It’s true that at first, antibodies raise, say patients. But the higher the T3-containing med is raise, the lower antibodies become, as reported by many, probably due to a better immune system due to the T3! A large body of Hashi’s patients need to avoid gluten to get those antibodies down. Others use 200 – 400 mcg selenium to lower antibodies, while more difficult cases may need Low Dose Naltrexone. Many even report that their iodine use lowered their antibodies. Overall, Hashi’s patients have soared with T3-containing meds if they do it right, and some have felt iodine alone lowered their antibodies. But this is totally up to each patient. With iodine, they go low and slow. Check out the book Hashimoto’s: Taming the Beast–an excellent and life-changing patient-to-patient book.
17) Believing one should try whatever someone else reports is working
The hardest part about patient groups is the wrong influence by one patient on another…and you don’t really know the full story about that individual! For example, a patient may say that whatever she tried, T3 in their treatment did NOT work and they are doing quite well again on T4 alone. But what you may not know is that they never optimized their iron and/or cortisol levels to do well. Or they never got optimal.
18) Seeing one’s high RT3, and deciding just being on T3-only is enough to correct it.
It’s true that switching to mostly T3 is imperative at times if RT3 is high. RT3 comes from T4. But that’s only half the story. We have to treat the reason for the rising RT3, as well.
19) Thinking a doctor knows more than you do, thus you can put all your apples in his cart.
Granted, we have great respect for education, and we appreciate the knowledge that a medical school trained practitioner brings to our health quest.
But? The vast majority of practitioners are not caught up with what we’ve learned over the years in getting well. They can be TSH obsessed, in love with T4, afraid of T3 or NDT, think that being anywhere in the normal range is dandy, not understand the cortisol and iron factor, and more mistakes. Thus, to get well: a) We have to be informed, which the patient-to-patient STTM books and website help you to be. b) We have to be willing to be assertive with our doctor as to what will work, what will not, after becoming educated via STTM. c) We have to see if the doctor will see us a team.
Want to order your own labwork?? STTM has created the right ones just for you to discuss with your doctor. Go here: https://sttm.mymedlab.com/
- Need help interpreting your lab results? Go here: www.stopthethyroidmadness.com/lab-values/
- Take the STTM book right in the office with you for emphasis when teaching your doctor!!