This describes a method to look into for potential help ONLY for only those doing poorly after total thyroidectomy (TT). If doing completely well on current treatments, this is overkill and you need not read further.
It also is primarily geared for those who experience some aspect of HYPER and HYPO simultaneously from replacement hormones and the information is geared around that. This generally only happens for people without thyroids.
For those who experience only HYPO conditions/medication side effects or those who still have a thyroid, this information is not that much geared for you though it may overlap in many areas. Although hard, one can generally find help when only HYPO issues are the problem of replacement hormones. It is a much different story if you get mixed HYPER/HYPO symptoms where almost nobody will help. This includes sources working around Free t3 and the HYPO point of view.
Thus this is geared for thyroid cancer survivors post-thyroidectomy, doing poorly or very poorly, and who generally experience some aspects of hypothyroidism and hyperthyroidism from replacement hormones.
Modify as needed to suit your needs and situation.
Sorry if I don't always follow up, this is a purely voluntary effort.
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Should I work with a doctor on all this?
Yes absolutely, and you must do that. Using labs, data, and information about how T3 and T4 work are methods to help you work closely with a physician and not a system meant to work outside of any medical care system or healthcare system. Nothing here is medical advice. What is described in the Free T guide, FAQ, Thyroid cancer websites, and in discussion groups are information to help you work with your doctor, but they are information only and not meant as medical care or replacement for medical care.
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Is this a discussion about advocating natural thyroid?
No. This is about the kind of actual thyroid hormone levels that likely will get you back to feeling normal, and also about some of the side issues that interfere with this from happening. It is not an advocacy system for anything but getting back to normal so you can go back to the things that are important in life.
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My endocrinologist said my numbers look "good" and I feel sick, what is going on?
What an endocrinologist means when they say something like numbers are "good", means you are TSH suppressed for cancer recurrence prevention. TSH does NOT help you feel well. It has nothing to do with that. To feel well a person has to look at carefully timed Free T levels, plus vitamins, minerals, etc.
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What are the first steps?
If you don't have all the basic labs see if a primary care or another doctor can order:
Free t3, Free t4, Reverse t3 (rT3), TSH, Ferritin, Total Vitamin D, B-12, Folate, CBC, CMP, Homocysteine
Sometimes a swap of the T4 medication is a worthwhile very first step, e.g. swap to Levoxyl from Synthroid. This helps many.
Ferritin (storage iron) has to be tested before you supplement. I would not take a multivitamin with iron for raising ferritin if you need it, but one needs to test it first anyway before supplementing.
Then learn about Free t levels. The quickest way to boost levels with significant T3 is to switch to natural thyroid, but any method you use, synthetic T3 and T4, or NDT it is wise to familiarize yourself with numbers that work for you.
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Important lab based goals and supplements to discuss with your doctors (primary care):
Some generally good lab goals on those other things to look at
Total Vitamin D (25-Hydroxyvitamin D): 50 ng/mL (USA)
B-12: 800 pg/mL (Best to use an active B complex only for raising B vitamins)
Good value on Ferritin: 50-80 ng/mL
Homocysteine: below 10
Folate around 6 or 7 ng/mL
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Quick explanation of goals on Free T labs
For proper levels of FT3 and FT4 you should be on same medication for at least a month, and not taken your medication recently.
What counts the most is the FT3 at a reasonable or moderate FT4. A good FT3 at high FT4 such as can happen post TT on high levels of T4 only, even very high in range FT4, can leave a person quite sick sometimes still. The basic goal is to convert to a good or a very good FT3, at moderate to mid-level FT4 and Reverse t3 as low as possible.
There is variation in all individuals so learn what works for you, and change this model to your liking. Note that some do well at the lower numbers and some do well at the upper numbers, particularly on Free t4. Only by trying will you find out what works for you.
Natural thyroid has significant T3 and can be a quick way to get significant T3, but even so knowing the levels that are good is important.
Once you get levels to something like the below best you can, and if you still don't feel the effects of better T3 at moderate T4 levels that are an indicator to examine side issues such as reverse t3, iron, anemia, etc.
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Good and bad looking labs example.
Here is an example of a person that likely will have fewer issues, USA lab type values
Free t4: 1.09 ng/dL
Free t3: 3.62 pg/mL
Reverse T3: 10.8 ng/dl
An example of poor looking values or more likely to have issues.
Free t4: 1.8 ng/dL
Free t3: 2.4 pg/mL
Reverse T3: 23.4 ng/dl
Reasons that is bad looking data include but not limited to
Too much T4 = HYPER issues, way too much T4 for most of us
Too little T3 = HYPO issues, way too low a T3 level for most of us
Too much rT3 = makes it so you can't feel a decent FT3, so even if you
get a good FT3 you might feel poorly. rT3 being relatively high can be
from fillers, to poor iron, to being sick, to many other reasons
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USA based lab goals - For those who get both hyper and hypo issues.
For your Free T labs, you would want the Free t3 to test well over 3.25 pg/mL (ideally around 3.5 to 4.4) when the Free t4 is between 0.9 and 1.4 ng/dL. If the Free t4 is over 1.4 that is generally about the start of problems and crowds the Free t3 making it less valid. Basically the higher Free t4 actually sometimes prevents the FT3 from going up in some of us above these numbers (say FT4 of 1.4). I like to keep my FT4 under 1.2 and feel best that way.
A Free t3 less than 3.25 can present issues for many. However if you have a cardiac risk, palpitations, or continue to have issues such as migraines from the higher FT4 consider trying the FT4 from 0.8 to 1.2 ng/dL bringing it down slowly to find optimal values where issues go away while at same time keeping the FT3 up with T3 increases as best as possible.
Better looking labs done with a T4/T3 combo with the intent of feeling more normal but keeping TSH suppressed, this is a person coming in having too many HYPER symptoms and also having HYPO symptoms at the same time. The goal they took was to reduce the T4 level and boost the T3 level:
Example1: A person who lost the HYPER issues after reducing T4 and adding T3 (everyone is individual so only you know if you still have HYPER issues).
Free t4: USA: 1.2 ng/dL
Free t3: USA: 4.0 pg/mL
Example2: A person still having moderate HYPER issues at above numbers(example 1) and still had to reduce the T4 level
Free t4: USA: 1.0 ng/dL
Free t3: USA: 3.5 pg/mL
Example3: A person still having mild HYPER issues at above numbers (example 2) and still had to reduce the T4 level slightly, trying to keep FT3 up best as possible.
Free t4: USA: 0.95 ng/dL
Free t3: USA: 3.25 pg/mL
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International units (SI) based explanations - For those who get both hyper and hypo issues.
For your Free t labs you would want the Free t3 to test well 5.0 pmol/L (ideally around 5.3 to 6.75) when the Free t4 is between 11.58 and 18 pmol/L. If the Free t4 is over 18 pmol/L that is generally about the start of problems and crowds the Free t3 making it less valid. Basically the higher Free t4 actually sometimes prevents the FT3 from going up in some of us above these numbers (say FT4 of 18).
A Free t3 less than 5 can present issues for many. However if you have a cardiac risk, palpitations, or continue to have issues such as migraines from the higher FT4 consider trying the FT4 from 10.3 to 12.87 pmol/L bringing it down slowly to find optimal values where issues go away while at same time keeping the FT3 up with T3 increases as best as possible.
Better looking labs done with a T4/T3 combo with the intent of feeling more normal but keeping TSH suppressed, this is a person coming in having too many HYPER symptoms and also having HYPO symptoms at the same time. The goal they took was to reduce the T4 level and boost the T3 level:
Example1: A person who lost the HYPER issues after reducing T4 and adding T3 (everyone is individual so only you know if you still have HYPER issues)
Free t4: Outside USA: 15.44 pmol/L
Free t3: Outside USA: 6.14 pmol/L
Example2: A person still having moderate HYPER issues at above numbers (example 1) and still had to reduce the T4 level
Free t4: Outside USA: 12.87 pmol/L
Free t3: Outside USA: 5.38 pmol/L
Example3: A person still having mild HYPER issues at above numbers (example 2) and still had to reduce the T4 level slightly, trying to keep FT3 up best as possible.
Free t4: Outside USA: 12.22 pmol/L
Free t3: Outside USA: 5.00 pmol/L
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When to get Free t labs:
When you get labs may differ significantly from people with a thyroid and the discussion below only pertains to people without a thyroid, generally having started on T4 only who want to solve issues they are having. Endocrinologists have concern with primarily TSH and not Free T's, and TSH doesn't change quickly so if you are doing well on T4 only and only want to worry about TSH then timing labs does not matter to some extent. Probably best to test like a person with a thyroid which is first thing AM before taking medication or breakfast.
For the rest of us pick 8, 16 or 24 hours but let people know what you choose when posting labs.
Labs tell you what your measurements are at that time. No time is right or wrong for the most part, however, never take all your daily Cytomel/T3 or NDT at once and test soon after as this will be the only way to really get data that does not work well or be comparable. Basically as a general rule, one should not take medication right before the blood draw.
People who split thyroid medications up in the day sometimes do 8 hours or before the second half of a T4/T3 combo or NDT. Others who split dose do first thing AM labs, then take meds (roughly 16 hours since yesterdays second half of thyroid medications). So 8 hours, or 16 hours, are common times. There are sites who say 24 hours but that is people with thyroids usually or those on T4 only who do well on T4 only. Take your pick 8, 16, and perhaps 24 hours.
One can also try to determine the time to test based upon symptoms as to HYPER/HYPO, or only HYPO, as a guide.
The time you chose may depend on your symptoms (see some of the symptoms of hyper and hypo above in FT guide). Those in process of converting over to a T4/T3 combo from very high doses of T4 sometimes like the middle of the day or right before the second half of any NDT/cytomel (8 hour slot) because they want to know how high things get. Their challenge is currently more of the HYPER symptoms and the impaired T3 conversion from high FT4.
Those who have moderated values and are far away from the very high FT4 levels may choose to move over to AM readings before taking medications (16-hour slot).
If you take all NDT at once, which I don't recommend without a thyroid, perhaps morning readings might be the only thing you can get to work as it will be hard to find the middle ground.
If you are on T4 only, generally well and no issues, probably test in AM before taking your medication. If you do have issues you want to review HYPO and HYPER symptoms at the top of the blog to see which is of most concern.
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Is there a simple way to help myself over time?
Create a written table or a spreadsheet to use at each lab. Over time include these columns or rows:
1 Date & Time of day of blood draw
2 Thyroid medications (T4 and T3 in mcg) and time taken
3 Free T3
4 Free T4
5 Reverse t3
6 TSH
7 Notes
Other labs to make a separate spreadsheet on
1 Ferritin level and other iron levels at last lab (no iron for one week prior), amount now taking if any
2 Vitamin D at last lab, amount now taking if any
3 Vitamin B-12 at last lab, amount now taking if any
4 Other vitamins and minerals taking: selenium, zinc, iodine, etc
5 Symptoms I am having at this date, and/or rating of how feeling & issues.
Make a cancer lab spreadsheet too
1 Date
2 TSH
3 TgAB
4 Tg
5 Assay used for Tg lab, call lab if not listed so you know
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Example Spreadsheet with goals, history
POTENTIAL GOALS:
FT4 1.1, FT3 3.7, TSH Suppressed, no HYPO or HYPER issues.
HISTORY:
1/1/15 7 AM, 150 mcg T4, 0 mcg T3, FT4 1.95, FT3 2.75, rT3 20, TSH 0.35 - on synthroid
Notes: Weight gain, irritability, brain fog. Hyper/Hypo both. rT3 high. Next I plan to get docs to replace 25 mcg T4 with 5 mcg T3
3/15/15 7 AM, 125 mcg T4, 5 mcg T3, FT4 1.5, FT3 2.65, rT3 20, TSH 0.6
Take 125 mcg synthroid AM, half of cytomel in AM, half at 3 PM
Notes: Still having weight gain, doing worse. 5 mcg T3 was not enough as T3 falling behind, TSH also going wrong way. Still Hypo/hyper symptoms. rT3 still high. Will try 2.5 grains NDT
5/1/15 7 AM, 95 mcg T4, 22.5 mcg T3, FT4 1.1, FT3 3.9, rT3 13, TSH 0.1
Take 2.5 grains Nature-throid, half in AM, half at 3 PM.
At goals, feeling better.
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General info on Free T’s (laboratory test):
One learns that Free T levels, not TSH, is the most critical thing to feeling well. It's not that we ignore TSH, because that is important for cancer prevention but TSH does not help you feel well. Free t's should be your guide to feeling well. Most doctors don't bother checking Free T labs carefully, they just look at TSH and assume you are ok even though the Free t's may be super out of whack and unfortunately you will be too.
One also has to look at vitamins, minerals, cortisol, iron, B-12, and others. Importantly, if T3 levels are good and Free t4 not too high, yet problems persist, that is a very important signal to look at reverse T3 and related issues such as iron.
Free t ranges are in a state of change. Free t4 ranges coming down, Free T3 ranges coming up over last 5-10 years. Ranges were designed around people with a thyroid, we need higher Free T3 post TT because we no longer have an on demand system and generally speaking the pituitary makes its own T3 from T4 so we want to be sure the rest of the body has an adequate supply in the post TT world where T3 issues cause most of the problems that happen because doctors take the T4 high making the pituitary supplied but the rest of the body not.
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FREE T3 – Active hormone
A better Free t3 range in US (traditional units) post TT would be something like 3.0 to 4.4 pg/mL (roughly 20% added to bottom of the range). One can get Free T3 related hypo symptoms well into the mid 3's particularly with no thyroid. If you are generally above 3.25 pg/mL and have no other issues such as vitamin, mineral, adrenal/cortisol and sex hormone related it is possible to feel ok. Official ranges vary but often much lower, an example range semi-updated would look like 2.4 to 4.4 pg/mL, but I would love to see the bottom raised. Definitely aim for above 3.25 pg/mL, and if you can get to 4.0 pg/mL that is better. Generally speaking if one optimizes all issues such as vitamin and mineral and other mentioned above, and the FT3 is low the only way to raise it is a long term cytomel prescription or natural thyroid containing T3.
For system international (SI) including Canada, or mostly non-US based labs: Conversion factor pg/mL to pmol/L is 1.5362.
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FREE T4 – storage hormone only no merit to making it high if doing poorly since T3 compensates.
Older Free t4 ranges in US often went as high as 2.0 ng/dL but some places have taken the top down to 1.5 ng/dL now, and if not that then maybe 1.7 or 1.8 ng/dL. I don't like my Free t4 over 1.4 so I can let T3 do its job. I am fine at moderate Free t4 but people vary where they feel well and some like it a bit higher, some like it lower. An example range reasonably updated would look like 0.75 to 1.5 ng/dL. If you test above 1.4 the only way to reduce this number is to reduce your T4 medications, and if your TSH is not where needed you need a long term cytomel prescription or switch to natural thyroid.
For system international (SI) or non-US ranges: Conversion factor ng/dL to pmol/L is 12.87.
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My doc doesn't want any of this, what should I do, and why is such BAD research on T4/T3 combination and NDT the only thing out there?
Many endocrinologists today oppose the use of combo T4/T3 as well as NDT for thyroid cancer patients. A few endocrinologists are fine with it but they are hard doctors to find as the current state of training in endocrinology doesn't teach how to prescribe, dose, and manage patients on combo T4 and T3, or DTE/NDT. The main problem is one can't use TSH alone when dosing patients, but must switch to a model of FT4 and FT3 with rT3 helping gauge if something is going on.
You can always look for another doctor, in the mean time all the issues mentioned under supplements and lab based goals section can be worked on with a primary care.
You can also switch around the T4's as a very first step, sometimes it can help quite a bit. Even conservative endocrinologists will usually be open to changing to alternate T4’s.
There are many positive articles on T3 and NDT but most doctors completely ignore them.
For the opposing view and why some articles miss the mark on finding where T3 is needed I have read some of these articles and found these faults:
1) The conversion charts of T4 only to NDT are so far off. They use completely inaccurate dosing based on charts made around the 1950's, ahead of FT4, and FT3 testing.
2) They primarily still gauge on TSH instead of FT4 and FT3, plus rT3. TSH just is not a good measure when on any form of T3 or NDT, as some people become completely suppressed (myself included) and this often differs from those on straight T4. One can't "force fit" T3/NDT into the model of T4 only, one must use the FT3, FT4 and rT3 when using NDT or T4/T3 combo's.
3) They never take the goal we may have of aiming for good or very good FT3, at moderate to middle of the road FT4, and low rT3. The likely goal would be something like TSH of a target value or range.
4) They give T3 or NDT once a day,
5) They convert from T4 only to NDT in a single day even if the FT4 is too high to switch
6) Pre-determined very biased research finds the answers it wants always.
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Links to doctor lists
See the very END of the blog.
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How do I give this information to MY doctor?
The National Association of Hypothyroidism (NAH) website is geared exactly around giving a physician the clinical information they need to help those who do not do well on T4 only. I would give these two links to your doctor:
NAH – National Association of Hypothyroidism (defunct). Seems to have gone out of business....
Hope for the future, BiancoLab
http://deiodinase.org/
