19 Mistakes Patients Make (or their Doctors make for them!)
(Important note: STTM is an information-only site based on what many patients have reported or learned in their treatment. Please work with your doctor. This is not meant to replace that relationship or guidance, and you agree to that by reading this website. See the Disclaimer.)
Below are the most common mistakes patients, or their doctors, report making when a switch has been made to desiccated natural thyroid (NDT)…or when you are working to improve your hypothyroid state. It’s all based on patient reported experiences. Work with your doctor on these.
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 mistake, say some patients in retrospect. Because via the recorded experiences of many thyroid patients over the past several decades, we discovered that more and more 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?
- a) being held on a starting dose longer than two weeks (such as one grain, 1 1/2 grains or less)
b) being bound by the directives of a TSH-obsessed doctor. The TSH lab test only keeps you sick.
c) failing to get a raise of desiccated thyroid until the “next labwork”, which can be weeks and months away
d) following an inaccurate Synthroid-to-Armour type conversion equivalence chart.
e) 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, but having the dose lowered by a doctor who saw a suppressed TSH lab result (i.e. below the range). This is doctor who thinks that ink spots on a piece of paper tell the truth more than your symptoms! When on an optimal dose of desiccated thyroid (or being very near), we’ve seen in ourselves a suppressed TSH without being hyper. (If you do feel hyper, see #4 below)
4) Thinking Natural Desiccated Thyroid doesn’t work because one feels worse!
In reality, patients discovered that natural desiccated thyroid “reveals” two certain problems: adrenal insufficiency 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.
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.
6) Swallowing desiccated thyroid 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 before doing labwork
Bad idea, said many patients in retrospect! T3 starts moving up after you take desiccated thyroid, 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 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 mistake, as reported by patients, is with the word “starting dose”, which for many, is one grain. 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 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, patients have noted before. When this happens, doctors have had patients stop the increase of their desiccated thyroid, or decreased it to give the reaction time to go away. An example is Mitral Valve Prolapse–Janie Bowthorpe 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 being the normal range means one is doing great
To the contrary, patients figured out that it’s where you fall in the erroneous range, not the fact that you fall in it. 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 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)
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 that synthetic T4 along with synthetic T3 is just as adequate as desiccated thyroid.
Patients applaud being able to add synthetic T3 to your Synthroid or other T4 brands, and feel it’s a definite step up from being on T4 alone! For some countries, it’s the best way, say patients. But….to say it’s equal to being on desiccated thyroid t’ain’t so, their experiences reveal. Too many patients who have been on the synthetic combo, and switched to desiccated thyroid, report that the results were even better. That’s impressive. Besides, with desiccated thyroid, you are getting exactly what your own thyroid gives you–T4, T3, T2, T1 and calcitonin. Makes a difference
16) Avoiding desiccated thyroid because of having Hashimoto’s
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, but this is totally up to each patient in working with their doctor.
17) Thinking 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) Thinking if one has high RT3 (or a poor ratio), they need to be on T3-only
Since RT3 come from T4, patients were switching to T3-only to lower high levels. Soon though, patients discovered they could lower RT3 simply from lowering NDT to 1 1/2 grains or less, depending on how bad their RT3 ratio was. Some added T3 to the lowered amount of NDT, as well. Patients learned they did NOT necessarily have to be on T3-only, which can be a rougher treatment for some. Others are fine with T3-only. It’s individual.
19) Thinking a doctor knows more than you do
Granted, we have great respect for education, and we appreciate the knowledge that a medical school trained practitioner brings to our health quest. It’s important!
BUT… that education does NOT take away from our OWN knowledge and our OWN intuitive sense about our bodies… about what works, about what doesn’t work… no matter what that doctor says. This website, and even more the STTM book, represents just that! So, patients have discovered that the doctor-patient relationship is best as a TEAM, with respect going BOTH directions. Doctors are not “gods”. They can and DO make mistakes in judgment. TEAMWORK counts. Find a good doctor!!
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/