19 Thyroid Patient Mistakes
Did you know that thyroid mistakes in one’s treatment can be common, yet correctable? These apply whether your hypothyroidism is due to Hashimoto’s disease or non-autoimmune causes of being hypothyroid.
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 you one feels good on Synthroid or other T4-only meds, there’s no reason to consider a switch to Natural Desiccated Thyroid (or adding T3 to T4).
Big thyroid treatment mistake, say some 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 NDT (or T3)
For a myriad of reasons, this happens often for those on NDT or even T3-only and patients report feeling even more hypothyroid due to feedback loop suppression. Have one of these been true of you?
- held on a starting dose longer than two weeks (such as one grain, 1 1/2 grains or less)
- being bound by the directives of a TSH-obsessed doctor. The TSH lab test only keeps you sick.
- failing to get a raise of desiccated thyroid or T3 until the “next labwork”, which can be weeks and months away
- following an inaccurate Synthroid-to-NDT type conversion equivalence chart. They don’t work.
- being afraid to go higher!
3) Being on an optimal dose and feeling great, but being lowered due to the TSH lab test range.
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, telsl 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 Natural Desiccated Thyroid doesn’t work because one feels worse!
A huge thyroid treatment mistake. In reality, patients discovered that natural desiccated thyroid “reveals” two certain problems: low cortisol or low iron (both seemingly common in patients who’ve remained undiagnosed for years or were poorly treated on T4-only medications). Patients might find themselves with a high FT3 lab result with continuing hypothyroid symptoms (T3 pools rather than gets to your cells). Or patients report experiencing anxiety, shakiness, fast heart rate, or other problems while on NDT. NDT is “revealing” the problem and is not the problem.
5) Failing to multi-dose
Occasionally, some patients take their natural 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. For example, a person on 3 1/2 grains might take 2 grains in the morning, and 1 1/2 grains by early or mid-afternoon. We find that multi-dosing better imitates what your own thyroid would be doing, and gives you the direct T3 throughout the day when you most need it.
The above also applies to take synthetic T4 with synthetic T3. T3 often needs to be dosed three times a day, especially when starting out.
6) Swallowing desiccated thyroid or T3 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 desiccated thyroid or T3 before doing labwork
Bad thyroid mistake, said many patients in retrospect! T3 starts moving up after you take desiccated thyroid or T3, giving a false high serum result. And the doctor freaks out when he sees the lab result, and directs a patient to lower the thyroid med. Patients have learned to take their normal desiccated thyroid or T3 the day before, 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, 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 desiccated thyroid or T3 is not working when a problem arises (outside of one’s adrenal function or iron levels)
Desiccated thyroid contains direct T3, and the T3 can initially aggravate certain conditions. When this happens, doctors have had patients stop the increase of their desiccated thyroid or T3, 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 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 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) Staying on a T4 medication as one raises NDT
Most patients report that they do perfectly fine on desiccated thyroid alone, especially when they have taken the time to raise and find their optimal dose. But a mistake can be made, they report, if staying on both i.e. the combination of the T4-only with the T4 in NDT causes excess, and the body starts to convert to excess RT3, the inactive hormone, which in turn will start to make you more hypo. NDT is 80% T4 anyway!
13) Going up with dosages way too fast!
This was observed a few years ago: a doctor put his patient on natural desiccated thyroid. One grain, then 2 grains, 3 grains, 4 grains, 5 grains, then 6 grains. But the problem was that he did this within 4-5 weeks! OUCH. He started to find himself majorly overdosed with symptoms to match (high heart rate, sweating). He had to stop for a few weeks? then resume again at one grain and do it the right way–approx. 1/2 grain raise every two weeks, slowing down in the 2-3 grain area (and for some, slowing down on even lower amounts)..
This could even happen if we raise T3 too high.
14) Believing that desiccated thyroid is “hard to regulate”
Totally and completely false, say many patients over the years. Patients found nothing hard about desiccated thyroid. Working with their doctor, they simply raise it high enough to rid themselves of symptoms, which in turn gives a free T3 towards the top of the range and a suppressed TSH. Believing that desiccated thyroid is hard to regulate is akin to believing that tricycles are hard to ride, said one patient with a laugh.
15) Thinking with Hashimoto’s disease 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 desiccated thyroid or iodine because of having Hashimoto’s disease.
Sadly, some doctors will state that those with Hashimoto’s should avoid NDT because it can increase the attack. It’s true that at first, antibodies raise, say patients. But the higher they 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 NDT 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.
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, NDT did NOT work and they are doing quite well again on T4 or another kind of combination. But what you may not know is that they never optimized their iron and/or cortisol levels to do well on NDT, for example, even if they state they did. Or, they might have an unusual cellular problem that you don’t have. NDT has worked for all-too-many as long as cortisol and low iron are optimized.
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 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!!