This article is part of a special report on Thyroid Disorders. To see the other articles in this series, click here.
In this final article in the series on Low T3 Syndrome, we’ll discuss whether thyroid hormone replacement therapy is an appropriate treatment in these cases.
Why T3 Levels Are Low
Unfortunately, there are few studies that have examined this question specifically, and even fewer that have explored the question of whether T4 or T3 (and which type of each) would be the best choice.
As a clinician, my primary concern is always primum non nocere, or “first, do no harm.” From this perspective it’s important to recognize that the changes seen in Low T3 Syndrome may represent a restorative physiological adaptation by the body to chronic illness.
For example, the changes observed in the thyroid axis in acute illness are similar to those observed in fasting, which can be interpreted as an attempt to reduce energy expenditure and protein wasting. (1) Giving fasting subjects thyroid hormone results in increased catabolism (breakdown). (2)
In cases of chronic illness, however, it is less clear what effect thyroid hormone replacement has. The few studies that have been done produced mixed results. (3)
Some studies show that treatment causes harm, others show no change, and still others show an improvement. After reviewing the literature on this, I’ve come to the following tentative conclusions:
- T4 is rarely, if ever, effective in Low T3 Syndrome and may even cause harm. This is probably due to the decreased conversion of T4 to T3 that is seen in chronic illness.
- T3 replacement has been shown to be consistently beneficial only in cardiac patients who’ve recently had surgery, heart failure or a transplant.
That said, I’ve heard anecdotal reports of improvement from people who have taken replacement T3 hormone for a condition called “Wilson’s Syndrome” (which does not exist in the scientific literature or according to any mainstream medical organizations). Wilson’s Syndrome refers to low basal body temperature and other nonspecific symptoms occurring in the presence of normal thyroid hormones.
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I’ll be the first to admit that “lack of evidence is not evidence against,” and as I mentioned earlier, there’s not a lot of research on the effectiveness of T4 and T3 replacement therapy in Low T3 Syndrome. It may be that as we look into this further, we’ll discover a role for thyroid hormone replacement in these conditions.
That said, I think caution is warranted.
And, if the changes seen in Low T3 Syndrome are a compensatory adaptation of the body in response to chronic illness, increasing T3 levels artificially may have undesirable effects.
In the majority of cases of Low T3 Syndrome, I think it’s preferable to identify the underlying cause and treat that. As I discussed in articles #3 and #4 in this series, those causes most often include infections, autoimmunity and inflammation.
Articles in this series:
- Low T3 Syndrome I: It’s Not About The Thyroid!
- Low T3 Syndrome II: Myths and Misconceptions
- Low T3 syndrome III: Inflammation Strikes Again
- Low T3 Syndrome IV: An Autoimmune Disease You’ve Never Heard Of?
- Low T3 syndrome V: Should It Be Treated With Thyroid Hormone?
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Faith, also iron is required for thyroid function as well. here is a link to one abstract:
http://www.ncbi.nlm.nih.gov/pubmed/12487769
And another that studies several micronutrient defficiencies’ effect on the thyroid
http://www.ncbi.nlm.nih.gov/pubmed/20172476
Karen,
For what it is worth, and with all due respect, I get that it is really difficult to 1) have a belief that you really, really believe in…and 2) have someone essentially say that that belief is wrong.
The fact is that all the cells in the body (every last one of them), in one way or another (which is what those studies are essentially saying)…whether directly or indirectly, need ALL the essential nutrients in at least the quantities set out by the government…without which the body will, in one way or another, begin to break down. Or, better put, as the body is not getting the nutrition (all nutrition, not just iron) it needs, the body will down-regulate itself…and one of the prime ways it does so is via (not the thyroid, but) via the liver…by increasing RT3 and decreasing T3. It would do the same if you withhold protein, carbs, fats, even calories.
That said, taking iron, alone and to its exclusion, will not magically make one convert thyroid hormone better…or produce thyroid hormone better.
What I am countering, and will continue to counter until they start getting it right, is the false internet advice that if you are having trouble with the thyroid that you must take ( and test) iron or you will never get your thyroid right. This is false on it’s face…even with the linked studies you provided…the truth is, you must take a multivitamin and/or otherwise make sure that you are not def in ANY essential nutrients if you want your body not-to down regulate itself.
That said, if you want to argue it, do so by showing exactly where in the biological pathway that iron molecules or atoms are used in the creation of (thyroid) or conversion of (liver) thyroid hormone. Is it used in the hypothalamus’s creation of Thytropin Releasing Hormone, or the pituitary’s Thyroid Stimulating Hormone? We know it is not used in the thyroid hormone itself, those are 1 thyroid hormone molecule and either three or four iodine atoms. It wouldn’t matter if it was used by Thyroid Binding Protein because only unbound thyroid hormone is usable. Nor does it appear to chemically be in the enzyme Tetraiodthyronine 5′ deiodinase which is what liberates an atom of iodine off of T4. Is it chemically within the enzyme Thyroid Peroxidase? Or Thyroglobulin which attaches the iodine onto the molecule of thyroid? And if so, then wouldn’t def then create a complete failure to make any thyroid hormone and super high TSH’s?? Maybe in the receptors??? No where in the pathway can I find it, and I have looked.
Again, the point of the studies, which are mis-read or mis-nderstood by those wanting very much to create some kind of connection…the point being, if one is def in nutrition…one’s body down-regulates itself…and, it does so by creating more RT3 and less T3 so as to conserve what little nutrients one has…not because it needs it.
Hope that clarifies.
Karen,
The fact is that all the cells in the body (every last one of them), in one way or another (which is what those studies are essentially saying)…whether directly or indirectly, need ALL the essential nutrients in at least the quantities set out by the government…without which the body will, in one way or another, begin to break down. Or, better put, as the body is not getting the nutrition (all nutrition, not just iron) it needs, the body will down-regulate itself…and one of the prime ways it does so is via (not the thyroid, but) via the liver…by increasing RT3 and decreasing T3. It would do the same if you withhold protein, carbs, fats, even calories.
That said, taking iron, alone and to its exclusion, will not magically make one convert thyroid hormone better…or produce thyroid hormone better.
What I am countering, and will continue to counter until they start getting it right, is the false internet advice that if you are having trouble with the thyroid that you must take ( and test) iron or you will never get your thyroid right. This is false on it’s face…even with the linked studies you provided…the truth is, you must take a multivitamin and/or otherwise make sure that you are not def in ANY essential nutrients if you want your body not-to down regulate itself.
That said, if you want to argue it, do so by showing exactly where in the biological pathway that iron molecules or atoms are used in the creation of (thyroid) or conversion of (liver) thyroid hormone. Is it used in the hypothalamus’s creation of Thytropin Releasing Hormone, or the pituitary’s Thyroid Stimulating Hormone? We know it is not used in the thyroid hormone itself, those are 1 thyroid hormone molecule and either three or four iodine atoms. It wouldn’t matter if it was used by Thyroid Binding Protein because only unbound thyroid hormone is usable. Nor does it appear to chemically be in the enzyme Tetraiodthyronine 5′ deiodinase which is what liberates an atom of iodine off of T4. Is it chemically within the enzyme Thyroid Peroxidase? Or Thyroglobulin which attaches the iodine onto the molecule of thyroid? And if so, then wouldn’t def then create a complete failure to make any thyroid hormone and super high TSH’s?? Maybe in the receptors??? No where in the pathway can I find it, and I have looked.
Again, the point of the studies, which are mis-read or mis-understood by those wanting very much to create some kind of connection…the point being, if one is def in nutrition…one’s body down-regulates itself…and, it does so in the liver by creating more RT3 and less T3 so as to conserve what little nutrients one has…not because it (the thyroid, the hormone, or the liver) needs iron to do it.
Hope that clarifies.
Faith,
You keep saying over and over that there is no link between adrenals and thyroid. But, that simply is not true. There are plenty of studies to show that cortisol is intimately involved in the 5′-deiodinase activity. In addition, insulin can also inhibits T4 to T3 conversion. These two things make it very attractive to look at a higher fat, very low starch/sugar diet such as the Paleo or ketogenic diet, used therapeutically to straighten out glucose metabolism, which would also help to correct thyroid conversion issues.
Here is but one study of the affects of cortisol and insulin on thyroid conversion (there are others as well):
Inhibition of thyroxine 5′-deiodination type II in cultured human placental cells by cortisol, insulin, 3′,5′-cyclic adenosine monophosphate, and butyrate ☆
Jairo T. Hidala, b, Michael M. KaplanCorresponding author
Karen,
With all due respect…cortisol, although produced by the adrenals, is the NORMAL thing the adrenals produce when you feel emotional stress. Adrenal fatigue is when you do not produce cortisol because it is too worn out to…and so instead produce adrenaline to deal with daily stresses. Adrenaline is NOT connected to thyroid conversion.
Furthermore…you are talking about conversion…NOT thyroid function. Conversion happens primarily in the liver. So you are truly connecting emotional stress to liver function.
The things produced by the adrenals do NOT communicate to either the thyroid, nor to the pituitary or hypothalamus’s control of the thyroid. Hence…there is NO biological connection whatsoever between adrenal function and thyroid function. Sorry, but that is just the facts.
IF, for whatever reason, someone has both a problem with the adrenals and the thyroid (proper, not made up)…then the hypothalamus or pituitary are to blame as they control both.
In addition, what the studies say is… too much cortisol (from too much emotional stress) affects enzyme action which is entirely different from gland function. What you need is to 1) reduce stress…and 2) figure out how to fix the enzyme issue. To date, as far as I can tell…no one is testing the enzyme, or the gene that codes the enzyme, or has a treatment…so, what you are left with is taking up yoga and meditating and other lifestyle changes to reduce stress. If you know of a fix for the enzyme function, please share.
Hope that helps clarify.
so today i didn’t take any t3 an my temperature was over 99.0… normally its around 98.2-98.4.
does that mean i need the t3 or not because it was a rough day for me anxiety wise and for no real reason! blurred vision and some breathing issues.
i was only back on t3 since friday, so 3 days.
thanks for your insight faith!
hugs
Hi Michele,
You are completely welcome.
However, I don’t know what to tell you…you do not dose T3 or thyroid based on temp.
Temps over 98.6 are a fever…meaning, an immune response, not low or high thyroid. The hypothalamus controls your body’s core temp…and raises it when more white blood cells are needed to fight an infection because white blood cells do better at higher temps. Sounds to me like you are sick. When one is sick, even slightly, this raises RT3 and lowers T3…this is a NORMAL body response to illness, and will correct itself when the illness resolves. Esp per the article above.
Anxiety is caused by a reduction in serotinin…likely caused are exacerbated by one of the supplements you are taking.
Again, my best reccommendation is getting the lab panels and possibly the genetic test. In particular Pharmasan’s Neurotransmitter test with all the bells and whistles. This will tell you better what is going on for you.
Other than that, go back and look critically (and objectively) at what you have been doing differently…as that is the likely causation, even if you may not know why. Just because someone says something is a good idea (Wilson’s) does not mean that it really is a good idea. The key is trying it and seeing how it works…and being willing to admit when something isn’t working right.
That said, and I have said this many times, and no disrepect to the well meaning practitioners…but I think it is a dangerous practice to give thyroid hormone to people with perfectly fine thyroid function. That is just my opinion…and beyond the knowledge I have of why it is not a good idea…person after person, like you, reports problems.
It can be very hard to love an idea or belief and have to concede that it may not have been a good idea after all. Again, that is just my opinion.
Maybe someone has a better answer for you?
Hi Faith!
You are soo wonderful to post all of this! I am going to look into all of this.
You mentioned when someone is on t3 and they have their numbers if their numbers didn’t go up then their bodies liver is working and they don’t need t3.
but if their numbers go up then they need it, correct?
well when i was on wilson’s temp i had my thyroid checked and my t3 was very high! like 5.4.
so would that be a good indicator that i needed t3?
also i meat rt3 but typed t3 when i was referring to you didn’t believe in rt3 as an issue,etc.
i have a ft3 & rt3 ratio issue. so that is why we were going to have me on t3 only.
i am going to read more about how the thyroid works! thanks for the suggestion!
As for the paleo diet, i just started it this saturday. so wouldn’t of affectd my numbers.
if i have a hypothalamus issue how do they fix that?
or a liver issue how would you fix that.
i tried 5-htp for seretonin and it did help me sleep but it made my jaw hurt from clenching my teeth at night. not sure why it would do that!
all my hormones are on the low side so i’m working on healing my gut b/c our gut calls the shots on a lot of things.
i only took t3 this morning and didn’t take anymore. felt a little better but not 100%.
I’m wondering if i should try the t4 & t3 again. or just not take anything!
thank you!
M
Hi Michele,
First of all, and for what it’s worth, I do not endorse either the Wilson’s Protocol or the Paleo Diet, per se. I am not particularly opposed to either, just that no one person has an absolute answer for anyone…so these things must be taken lightly, as suggestions rather than absolutes. And, as you say, you are doing these things AND you are still having problems…or, rather, you are doing these things AND you are having more problems…and that, to me, is worth acknowledging and taking seriously…as well as respecting and honoring as we listen to and honor what our bodies are telling us. To me, those things (Wilson/Paleo) are just someone’s ideas of something that might work…and they might work for some people…but then we take those things and try to make them work, sort of like putting on a sweater that doesn’t really fit and trying to make it fit anyways…no matter how we stretch and pull, we just can’t get the sweater to fit. So we have to acknowledge (eventually) that sometimes, it just doesn’t fit. Someone once asked me, and I find it fitting, “how long do I have to do something that doesn’t work before I realize it doesn’t work?” Even though what we tend to do is keep trying to make it work, sometimes we just have to acknowledge that it just doesn’t work.
Maybe a misunderstanding, I don’t have a problem with T3…I said there is no RT3 ratio. T3 is what we use. I have no thyroid and am on T3 only, and have none of the problems people have surmised one would have on T3 only (such as the notion that only T4 crosses into the brain). That said, T3 is not without its own dangers…but then ALL thyroid hormone replacements have their issues (none of them are free of issues). Nature is always the best option (meaning the hormone we actually make), imo.
Low serotonin is not depression, some depression meds can lower serotonin levels too much and the result is anxiety (low serotonin = anxiety)…but that is not the issue I was referring to. I was taking about possible genetic mutations being affected by what you are doing (sups you are taking) inadvertently causing low serotonin which then results in your anxiety. The MAOA gene in particular which turns tryptophan into serotonin…which I believe comes from turkey meat…but, you would only know this if you did either the genetic testing or the neurotransmitter test or both (or simply take it on faith). http://www.heartfixer.com/AMRI-Nutrigenomics.htm it is in cycle 2 at the bottom. And this in particular, http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MAO A: Monoamine Oxidase A (ugg, link not working)…what I was meaning was a possible over-activation of the MAOA (via gene defect) causing a large breakdown in serotonin and creating your anxiety. It was just a thought.
Regarding your low iron, you might consider liver? If you use thin slices and over cook it with onions and hot sauce it is not so bad. Or liver powder in capsules? That said, iron is NOT needed for thyroid conversion…and that IS a fallacy perpetuated on the internet. Low iron is often the result of underlying disease. The big problem I have with the internet stuff is it keeps people trying stuff after stuff and discourages people from looking for the underlying cause…thus potentially allowing disease progression. Many underlying diseases start off slowly and quietly and little things start going subtly wrong before big things go wrong and people become aware that something is wrong. One thing I love about Chris’s article here is that he acknowledges that once the underlying problem is addressed, the thyroid corrects itself. In other words, the thyroid numbers are a symptom…not the issue itself.
While I would never tell someone to not do what their doctor/s says (and I always do what mine say, even when I suspect that they are wrong), however, I do advocate going in eyes wide open. But the problem I see with the progressive type doctors is that they scan the internet (which we all want them to do), but then they see what people are wanting and just do that (which many are glad they do)…rather than see what people are doing and add their medical knowledge as to whether or not that is a good idea (which we actually really need them to do). What seems absent is the adding the medical expertise and knowledge to what we think up to try. Frankly, I don’t know much about the Wilson thing, but your comment about upping T3 makes me eek a little as this is similar to what the RT3 people say (also not-doctors). They believe that while too much RT3 is present the T3 cannot get in the receptors…so they advocate high doses of T3 until the RT3 clears. One woman in the group doing the high doses of T3 reported heart palps (a usual sign of too much T3) and they told her to ignore it…she had a heart attack. As I say, this false information (while it empowers people) is not benign…but has the potential to seriously harm people. Something that I also think warrants acknowledging and honoring.
Realize that these people who advocate this stuff on the internet are NOT doctors…and that few doctors (except the progressive ones who give patients what they want) endorse this stuff. As for myself, so much of the internet stuff made me sick (and it sounds like it is making you worse too), that I had to take it upon myself to educate myself on how the thyroid system works from start to finish.
Your body temp is 100% regulated by your hypothalamus that has nothing to do with your thyroid or adrenals (other than it controls them)…which invalidates the Wilson thing, imo. Inflammation in the hypothalamus will cause the hypothalamus to re-set the body’s core temp lower (like it will set the body’s core temp high when one is fighting an infection). There are reasons behind that, but mostly, no one cares to look that deep…but fixing it may require looking that deep. The thing is, if the hypothalamus is the problem…you can try to fix the thyroid (and adrenals) until the cows come home, but nothing will resolve until the hypothalamus is addressed. Like a dog chasing its tail and never catching it, or a hamster on a wheel. In my opinion, it takes looking at the whole system, start to finish, to begin realizing why stuff (like what you are doing) is not working.
As I say, and will always say, YOUR numbers are unique to you…and the only way to tell what your personal numbers are is by how you feel. Your doctor thinks TSH should be in the low end (which, with all due respect, is just an opinion and not a fact), which may be ideal in theory…but maybe isn’t for you. Before my thyroid was removed, my TSH was 2.1…and that seems to be my personal ideal. The TSH is just the chemical request of your pituitary asking for thyroid hormone…anything in the normal range is fine and it fluctuates throughout the day. Too low suggests you are getting too much and it wants less, and too high says it wants more…TSH numbers are pretty accurate tells unless your pituitary is not functioning well, or your hypothalamus, like mine that is all over the place from less than zero to higher than 17 and having no bearing on my actual hormone numbers. If doctors dx’d me or adjusted my thyroid hormone based on my TSH, they’d have killed me. In my opinion, treating a healthy thyroid with thyroid hormone and not looking for or ignoring why the low T3 numbers and only treating those numbers, is like playing whack a mole. Low T3 (with normal T4 and TSH) is caused by a failure to convert…the failure to convert has to do with the enzyme that converts it…in the liver. It is also a perfectly normal thing the body does when something else is going wrong. We can try to augment those numbers, but unless the liver is failing it will not work…and, if/when the underlying cause is found corrected then the hypothalamus/pituitary/thyroid will correct itself.
The inherent problem with taking thyroid hormone when you have a functioning thyroid (even if slightly low numbers in some people’s opinion), is that your thyroid gland will make less. The more you take, the less it makes. Like using a wheelchair when you can walk, it eventually atrophies the gland…then requiring you to be on thyroid hormone for life (with all its wonderful flaws). This is one of the more serious issues that the progressive doctors do not consider when giving people what they think people want and ignore their medical knowledge. Personally, I like going into things eyes wide open…and I want to know all the dangers to things they want to try so I can make informed choices. I am all for people trying thyroid hormone…and then re-testing and SEE, did the T3 numbers go up (which would warrant staying on it), or did they stay the same (which would suggest not to be on it). If they stay the same, your liver is functioning well and getting rid of the excess…or your thyroid turned down its function and is making less to compensate.
There is no RT3/T3 ratio other than what a human being, such as you or I, made up. You don’t need RT3 at all. RT3 is ONLY a problem if it goes above the range because it blocks the receptors. However, if you want more RT3 you can do so by starving yourself or getting sick…although I cannot imagine why you would want to do so as all RT3 does is slows your metabolism.
The problem of trying to fit ourselves into made up ideals with hormone supplements is that you will never do it…it is not-possible (although it will not stop people from trying). Your body is self-regulating…and if it is down-regulating your T3 conversion then something else is wrong (and the down regulation is a symptom that something else is wrong)…and THAT warrants further investigation, imo. Poor conversion of T4 to T3 does not happen in isolation, it happens because of something…and as long as that something exists, it will keep happening. The kindest thing you could do for yourself is to find the something that is causing the low T3, in my opinion.
As I said before, one of two things will happen when you take T3…your level will either increase suggesting one of two things, you needed it and were truly failing to make it or your liver is not working well…the other thing that would happen is that your levels would stay the same suggesting your body wants your levels lower. If your T3 levels go too high, then your liver is not doing its job.
The very best thing I have found for constipation is Magnesium Oxide (sold as NatureMade Magnesium). These are pills. Walgreens sells a horribly sour magnesium drink, to me the pills seem easier.
Also, I am only one person…just like you shouldn’t take the advice on any website or book as an absolute, nor should you take what I say that way. I mean only to educate…and to give a side of things that are missing so that one can get a clearer picture. My own journey is filled with things I tried and that failed…eventually I got fed up with spending money, time out of my life being worse, and just simply getting worse…and so I took it upon myself to educate myself and see if I could figure it out or see something others had missed. I started with the thyroid system from start to finish, from the hypothalamus to the receptors. I used medical text books, however, the wikis are a fair starting point too…they are pretty good and detailed. Up until I did this, no one in any of the internet groups knew that conversion happened in the liver…no one, I couldn’t believe it. Of course, we all have our threshold of what we need to go through before we can accept that the information that we thought we knew was not true, for me that was it…how could they hope to help people convert thyroid hormone if they didn’t even know where in the body we did that?? So I am simply sharing with you the things I have learned along the way. Sometimes people don’t like what I have to say because they like to believe what they believe…even if it is making them worse. All I can say is, if it is making you worse: 1) tell your doctor; 2) acknowledge that and honor what your body is telling you…and then 3) accept that those sources of advice may not know, understand that they are just people with theories, have compassion because even if they may be hurting people they are just trying to help.
Oh…and as thyroid helps regulate protein, carbohydrate, and fat metabolism…maybe why they were lower in the first place is the Paleo diet??? Just a thought…maybe eating less of = needing less of??
Lastly, I assumed your anxiety was chemical and not caused by you feeling stressed…why I associated sups with inadvertent harm per the complications of how we make and unmake things…hence the genetics. There is no hard fast answer to what is going wrong for you or why the sups may be harming you…the easiest answer is that you are changing the dose daily. Thyroid is something your body learns to count on you taking at regular times…when you change that, it may not be prepared to handle that change…esp, suddenly lowering your dose or increasing it. While I don’t know, offhand, of a connection of thyroid and anxiety…I do know that putting your body chemically in danger will cause a chemical response of anxiety, I think it is an inborn response mechanism…so theoretically, sudden low thyroid could cause the body to alert you with anxiety…just a stretch.
Hope that helps. 🙂
thank you Faith.
I wasn’t experiencing any leg pain before i started the t3 and my anxiety wasn’t too bad until i took the t3 only.
however i was able to handle 2 1/2 cycles of the wilson’s temp syndrome which is striaght t3 cycled up to 75mcg 2x a day then cycled down.
with the 1st cyle once i was off it for 3 days i felt amazing then my energy dropped and i had some anxity.
about your 1st post, i have found it very hard to lose weight,even though i follow the Paleo diet which stays away from starchy carbs and i exercise 4-5x per wee.
i have had dry skin, hair is falling out more than normal, i find it hard to use the bathroon even though i take miralax 2 x a day and linzes to help me go, lips dry, water retention, sometimes hard to fall asleep.
i do not have any depression just anxiety sometimes.
so i have lots of symptoms pointing to hypo and b/c of the ratio of Ft3 and Rt3 I have learned and my dr says i should be on t3 only.
but then you say there is no such thing as t3 issues.
so do you think going on t4 & t3 would help bring my tsh even lower to 1.? my doctor says he likes the # to be around 1.
my iron is low, i’m eating more red meats now to increase the number.
low ferritin can cause a problem in the conversion of t4 to t3.
in the past i used to take xanax for 13+ for anxiety but it only made me sicker. so i slowly came off it and have been of it for 8 months. i feel much better now and i know i have a thyroid issue b/c while on the wilson temperatur syndome protocol there where times i felt amazing with NO anxiety and it showed me that my anxiety is from a hormone imbalance.
Thank u for carin and shaing ur thoughts on this.
Hell, I wanted to add to my last post, on Friday i took 2.5mcg of t3 3x and spaced each dose out by 5 hours. I did ok but not 100%, so yesterday i did the same but 1 hr before i too my 2nd dose i took my iron pill and then when took my t3 i started to have some anxiety. i had some anxiety after i took my 3rd t3 dose too plus my back was really achey for no reason..
and then this morning i woke up and my leg hurt with pain down to my foot… I wasn’t sure whether i needed to increase my t3 dose or not take it at all.
So I decided to take 5mcg of t3 and it helped but i still have a little leg pain and yesterday i had some ligering breathing issues from anxiety. I have those a little today too.
my blood pressure this morning was only 95/59 and my pulse was 59.
my bp is usually low like 100/60 and my pulse stays around 60.
do you think i’m on too little t3 and that why i’m more hypo right now?
i was going to wait the 5 hrs for my next t3 dose and take 5mcg again. i also was going to wait til tonight to take my iron pill, my dr said to take it 2x a day but i don’t want any anxiety!
i have found that i cannot take any supplements or i’ll get internal anxiety,do you know why that would be from all this?
thanks for your help!
M
Hi Michele,
For what it’s worth, I also get increased pain when my thyroid is too low.
Regarding the supplements and increased anxiety, like most people I used to think that supplements were safe because they were like food (right?). However, as I learn about the genetics and how the body works, I learn that supplements are not-safe in the ways we thought and could do far more harm than we thought. Not that I am saying that they are bad or anything, just saying that we need to know much more about how our own bodies work before messing with it.
To explain, one of the more commonly known genetic mutations is the MTHFR (yeah, no joke, that’s its acronym)…it codes the creation of the enzyme (also called MTHFR) whose sole job is to add a methyl group onto folate…in what is known as the methyl cycle. The hypothesis (and it is really just a hypothesis) is that if you have this defect then you should take methylated folate. However, a bulk majority of people who do take methyl-folate get worse. One of the so-called experts in this then starts saying that some people have problems with extra methyl…duh. But likewise, taking folate could also harm people who may have this defect and not even know it.
Because eight of the things my doctor tried (that the expert she likes said we need to do) made me much worse, I finally said that we should just test the things that the report said could be affected and see what, if anything, was actually affected. My hypothesis is that anyone with a double mutation in the MTHFR gene would either be dead by middle age…or, another gene/enzyme does the job that they just don’t know about yet. What I found with the new labs was that I was not making an amino acid called taurine very well…and nothing would have suggested that and thus we wouldn’t have known without that lab work. So, for me, taking taurine has gone further to improve my health than anything else we have tried.
The genetic stuff is under the category of “personal genomics” and a good starter point is testing by 23andMe.com which will give you, for $99, an over 14,000 pages of your genetic code. You then run the raw data through software like Genetic Genie (free) or Livewello ($20) which will give you a report of things that are affected for you personally. After that, while I would like to say that the care is more personal because it is based on that, it is not quite yet because it is more based on what the so-called experts think you should do with certain defects. And as I say, what the experts said just made me worse…which is why I recommend using the reports to generate a list of things to test as see what, if anything, in you is truly being affected.
I know I have been on this site all on about 23andMe, and while I still think it is a good place to start (cost effective)…I have now learned that they only give you a small part of your whole genome. It is (very) cost prohibitive (thousands of dollars) to get one’s whole genome tested, much less interpreted…but for the very sick may be well worth it. More detailed testing, as far as I know, is not on the radar of any of the doctors or practitioners that I have heard of who work on the personal gemonics (yet). So still, 23andMe is a good place to start as long as one takes it in context that it is not that complete. The funny thing about knowledge, the more you learn the more you start realizing that there is more to know.
Low serotonin can cause anxiety…and serotonin is part of the things affected by the methyl cycle and genetic defects, in other words the way we make and unmake things in the body. Defects can either increase production or decrease it…and providing the defected area with the building tools, esp if it creates over-production, can definitely have the effect of lowering serotonin too much and creating anxiety. So can certain medications.
For you, with your increased muscle pain and anxiety caused by all these changes in what you are taking, I highly recommend getting a Neurotransmitter test by Pharmasan Labs…and check for two things, but most especially the gaba-glutamate neurotransmitters. Glutamate and gaba make each other as well as work together. They are like binary code, glutamate turns on muscle activity (tightening), and gaba turns it off. My doctor says that these two things should be in balance or the same on the test. Too much glutamate can lead to a lot of stiffness or minimal stiffness that increases pain. The other thing would be the serotonin/dopamine-norepinephrine-epinephrine complex. My doctor added taurine onto that test, not sure you need to, but in hindsight I wish I had gotten the complete, everything they can test test from them as it has been one of the more revealing tests we did. I also found out that I don’t make adrenaline very well (sort of the opposite of what you are experiencing)…and any stress just makes me want to go to sleep.
I really hope that helps. Hang in there, and sorry my other post didn’t go through the other day.
PS: here is a link to some beginner stuff into the methyl cycle and what some doctors are doing about it: http://www.heartfixer.com/AMRI-Nutrigenomics.htm
You will see how quickly complicated all this stuff gets.
Hey Faith, thanks for the info about Livewello. I checked them out and they’re very helpful for understanding some of the data reports I got from MTHFRSupport (using 23andme data). Their report is the same as MTHFRSupports but there’s a bit more information on it regarding the interpretation of the results.
Faith I also have one defect in one copy of one of the MTHFR SNPs. I joined a discussion group about it on 23andme, but I didn’t think much about it until I read about how T4 is converted to T3 in the liver, which relies a lot on methylation and methylated enzymes, etc.
I had also heard about how Carnitine is depleted by hyperthyroidism and in reading about that, I came across information about the genetic condition of Primary Carnitine Deficiency. It is regulated by the SLC22A5 gene, so I searched my whole genome at 23andme for it and found my gene seems to have a defect compared to the genes of my husband and his uncle. I know if you got a double whammy of the defective genes in the past, it meant death very soon after birth, but now they test for the deficiency, so perhaps they can treat the babies for it, and will test the mothers to see if they are carriers and might have risk for less quality Carnitine to be used in the body. I also know two of five children born to my paternal grandmother died soon after birth.
Hi Fern, and sorry that you are not feeling very well these days. 🙁
That is really interesting…sorry about the deaths.
Regarding the conversion in the liver…once I found out about it, it surprised me that the well revered thyroid sites seemed oblivious to it.
Regarding the geneomic side of medical care…if the supplements my doctor kept trying didn’t make me so sick, I would never have looked deeper. But applying some logic, if MTHFR was the only gene/enzyme that added a methyl group to folate…then people with a double defect would be dead long before middle age…or…some other gene/enzyme also adds a methyl group to folate that they don’t know about (yet). Same with all the other genes/enzymes.
Definitely, testing for a person’s true status of these things is more helpful imho than just doing the genetic test and assuming.
Thanks for sharing this. 🙂
Hang in there…hope you feel better soon.
As I said, I have only one copy of the MTHFR SNP that is bad. I’m sure the good copy keeps me at least half alive. And Methylation isn’t just about activating folate — there are many other processes in the body that require it, including at least 3 steps in the pathway of T4 to T3 conversion. That most of this conversion happens in the liver is only significant, imo, if there are other things affecting the liver that affect the conversion process as well. There is a small percentage of T3 that is produced in the thyroid, and small percentages in the kidneys and elsewhere.
As to dying before passing middle age, I would estimate that I have had at least 3 brushes with death in the last 25 years. I am 65 now.
Hi Fern,
You and me both…and yes, i am aware of the complexities of the various cycles.
What I was referring to is just adding simple logic to the hypotheses out there…and that being, those with double mutations (which many have), would either be dead by now…or some other gene/enzyme is adding a methyl group onto folate.
It was that bit of logic that caused me to ask my dr to test all the things the report said were affected to see what, if anything, was affected (esp per the double mutations I had)…and nothing was. I only found out that I was not making taurine or adrenaline very well. Supping taurine has gone a long way to improve my health.
Sometimes it takes thinking outside the boxes given to us to find answers.
Hang in there.
You can’t just go through the raw data at 23andMe and if you have an SNP that differs from someone else, conclude it’s a functional mutation. A lot of the time a mutated SNP does not do anything, because the genetic code is read as a combination of three consecutive “letters” (amino acids) and some of these three-letter combinations are synonymous. Also, even if the mutation does mean that a different amino acid is coded, it may not have any effect on the function of the final protein.
If you look at the genetic code of any larger gene between two different individuals, there are likely to be some differences. So it’s far easy to conclude you have a “mutated XYZ gene”. It’s not a good idea to look at the raw data unless you’re looking for some specific SNP known to cause problems.
Hello, it’s Michele, I had posted a while ago.. well I am a 37 yr old female with 2 young boys 🙂
I got my blood work back and here are my levels and I was hopeing you could make some sense of them.
TSH 1.9 reference range (1.5-2.5)
t4 total: 5.4 (4.5-12.0)
t4 Free: .9 (.8-1.8)
T3 free: 2.3 (2.3-4.2)
thyroglobulin antibodies: <20 (<20)
RT3 19 (8-25) If you look at the ratio of Free t3 and my RT3, it does show I have a Rt3 issue bc 2.3/19 = .12 and if should be .20 of higher, correct?
My doctor wants me on t4 and t3 b/c both are low. he wants to start me on Slow Release t4 33.3 & t3 10.1 for 15 days and then increase to t4 50.4 & t3 15.2.
I'm worried b/c of the Rt3 issue… but I have higher tsh and low everything else. Let me know what you think!
Progesterone: .7 (Follicular phase < or = 2.3 and Luteal phase 3.0 – 31.4) I'm currently on 25 mg pill and my Doctor wants to increase it to 75mg pill each night.
Testosterone total: 15 ( 2-45)
Testosterone Free: 1.6 (.1-6.4) My doctor wants me on 1mg per night to raise this #.
They had to redraw my blood for estrogen b/c the nurse asked for it but they didn't give it to her. But it's always been on the low side! So he said he may want to put me on that too.
Iron:
Total: 139 (40-175)
Iron Binding: 353 (205-450)
%saturation: 39 (15-50)
Ferritin: 16 (10-154) I've learned that if this number is low then it may be why I have a rt3 issue.
So my doctor wants me on an iron supplement 2 x a day.
My DHEA was lower then ideal too so he wants me on 10mg supplement of this. how do you feel about that?
Here is something else that is confusing: one doctor checked my levels by blood and this is what the results were.. my cortisol was normal by the way, both PM and AM.
And then my other doctor tested them by a 12 hr urine sample and it showed my progesterone and estrogen were high and my cortisol was high from 3pm until 3am.. but my blood levels show normal.
I don't understand why these test would be so different!
Thank you for your help in this!
M
Hi Michele,
I tried to post this earlier, but it never showed up…so re-posting.
Your doctor seems pretty progressive (what most would consider kind) at offering you thyroid hormone…and, indeed, your T4 and T3 levels are at the low end of the normal range. That said, your TSH is also at the LOW end of the range. The TSH is your pituitary requesting thyroid hormone…and it is NOT requesting more. If your TSH was over range high, then this would suggest that your body wants more that it is getting and your thyroid is failing to produce.
That said, SOME people in your shoes would feel better on some thyroid hormone…so it is one of those gray areas where you will have to decide how YOU feel about it.
(in case anyone forgot, I am one of those with HUGH RT3 issues), the RT3 ratio is fiction (nothing personal to the person who tried to make a name for themselves, but it is utterly made up). First and foremost, you don’t need ANY RT3…RT3 is unusable and it’s only function is to slow your metabolism. When you are sick, your body will make more RT3…this is what makes you feel like all you can do is lay on the couch…trust me, you do not want more RT3. From my own experience, when I take T4, my RT3 rises pretty quickly…the normal ranges on my labs are 90-350, mine sails into the 500’s. When mine gets to be 100 points over range, I collapse (like literally fall down for an hour or so due to energy bottoming out until I have the energy to get up). In my personal opinion, you do not need to be concerned about RT3 in the normal range. If you had chronically elevated RT3, then this would be suggestive that you had some kind of chronic illness going on that if you did not know about should probably look into (or you are starving yourself and your body is attempting to save you by slowing your metabolism down). But no, the ratio is made up by the author of the book (complete, albeit nice sounding, fiction) is not a doctor.
The rest of the stuff gets into an area where people generally do not like my answer, IF more than one of your endocrine glands is not functioning well…your problem is in your pituitary or hypothalamus which controls them all.
That said, and as great as it is that you are able to get all these tests and seem to have a very progressive doctor, there is an unfortunate limit to each method of testing. Urine tests only show what your body is excreting…your actual levels in use could be perfectly normal as you only excrete the excess. So even if there is no excess being excreted, you could still have perfectly normal levels in use. Blood tests can only show you what is available…not what you are able to use. For example, they can tell you that you have thyroid hormone available…but they cannot tell you how much is getting in the receptors. It could suggest that your thyroid is working (producing hormone)…but even if it is low, it could just be that you liver is over-tagging it for excretion. So they only give a rough idea of what may be going on at best.
The big thing is, and this is often overlooked, is how do you feel? Our bodies are extremely good at making what it needs when it needs it…and lab normals are only the average of the people who get blood drawn at that lab (which is really messed up if you think about it), meaning that all the sick and healthy people tested…what their average is, is what they are calling normal…and may not be normal at all. If you have those numbers and feel great and are at a good weight, then this may very well be YOUR normal numbers.
Oh…and the T4. T4 is a storage hormone that you convert when you need it. Whether in the low end of the range or higher…there is still adequate amount of it IF you needed it. The real number to contend with when you are getting full panels is the FT3, that is the only usable hormone…and that, of all the thyroid numbers, really goes by how you feel. There was a woman in another thyroid group that feels super sick when her T3 is in the middle or upper part of the range (even though the progressive doctors still think it needs to be higher, this is just not true for all people). The problem with higher T3 levels is that it demineralizes bones…and if too high can cause paradoxical weight gain. So again, go by how YOU feel. If you feel fine with it in the lower end of the range, then that is YOUR personal normal.
Lastly, remember that authors tend to operate on hypothesis and theory…no matter how smart sounding, it is still just an idea. The difficult part that you find out after you walk a few miles in each of those ideas is that they do not help everyone, and even manage to hurt some that follow the ideas that they put out there. In the RT3 group (also non-doctors), they say to take high doses of T3 and told a woman to ignore her heart palps and she had a heart attack. So take everything with a grain of salt…remember that they are just hypothesizes and not fact (esp the RT3 ratio). There is no great science of how to get your numbers just right, because if your body wants them lower, your liver will mark them for deletion and they will stay low. This is why I always advocate for finding out how exactly things work (ie hypothalamus tells pituitary which tells the thyroid, and the thyroid uses x,y,z in exactly what way to make the hormone, which goes where to be converted, and exactly how is it converted, etc) because then fact from fiction becomes increasingly evident (like why your adrenals have no bearing on your thyroid).
That brings me to the last bit, if/when you try adding hormone…re-check your levels. IF they stay low, your body wants it low. IF they improve…one of two things, you needed more and weren’t able to make it…or, your liver isn’t working well. The hallmark would be, do you feel better or worse on them? Go by how YOU feel, not what others say about the numbers…although, it can be hard to trust one’s self at first.
Hope that helps. 🙂
Hello, I just got tested for low thyroid levels (TSH, T4, T3) and found that I have normal levels of TSH and T4, but low T3. My doctor didn’t really explain what this meant, but he prescribed me liothyronine, which he described as a T3 substitute.
I decided to do some research and find out what could be causing my low T3 and found this article. Although I’ve found it very enlightening, I am now very hesitant to take my prescription in case it causes the adverse effects stated. I was hoping you could give me some advice on what steps to take next…and potentially what else I should be getting tested for.
Any input would be greatly appreciated
Thank you,
Jen
Hi Jen,
Liothyronine is T3, which is what you are not making enough of ( http://en.wikipedia.org/wiki/Liothyronine ), and fwiw, I think it is mighty progressive for your doctor to order it for you (that being a good thing).
Although no one could hope to tell you what to do, my thought would be to take it and see…and retest in a month to 6 weeks from starting it. One of two things will happen…either your T3 level will increase to normal…or, it will stay below normal. IF it increases to normal then it is because your body is failing to convert it and then taking it is warranted. However, IF your levels stay below normal either you are not taking enough…or, your body has set your levels lower…and remember, everyone’s levels are unique to them. The proper levels of T3 are best determined by how you feel…even though some on the internet have an opinion, I have met those who do not feel well when their levels are higher.
As far as testing the T3 levels, you will want the “Free T3” test, or “FT3″…that is the active, ready to use, hormone. Total T3 or TT3 tests everything, the protein bound, the free, and reverse T3.
If your levels stay the same, you will have to choose between increasing your dose and retesting to see or stopping the T3…but that is a very personal choice. Unfortunately, doctors don’t know much on what might cause the body to set their levels lower (assuming lower levels and feeling hypo, rather than lower levels and feeling great). I do know that chronic illness (even if so low grade that you might not realize you have anything) is one cause.
Personally, I think it is pretty great your doctor is willing to try that (it is generally very hard to get T3 rx’d)…and I think it is worth a try. And, again, it is just my personal opinion that staying on hormone when it is not due to failure to make it (levels do not rise) is probably not the best thing to do…but that is just my opinion.
Hope that helps.
I agree with Faith. The main reason Liothyronine can be scary is if you already have sufficient free T3.
For me, though, I tried just taking a half a pill first (2.5 mcg) and that seemed like too much so I skipped a day and cut it in 4ths, eventually I was taking 1/4 every other day then once a week. Then I learned to split it in 8ths, and was able to take it every day and build up to a whole pill and beyond to 1 1/2. That seemed incredibly good for me, but my TSH dropped to 0.009, so I had to go to another endocrinologist (#4) who has wanted me to go off the Liothyronine altogether before determining whether I need to increase Levothyroxine (L-T4) (25 mcg). I have been struggling a lot with this since I first decreased to just one pill, then toward 1/2 pill. I couldn’t stand it so I wrote my Endo and told him I was increasing it again by 1/4 pill. I take the half in the morning with breakfast and the quarter in the early afternoon. I will see him again next week.
In the meantime, I am trying to check out the possibility that I might be carnitine deficient. I had my genome tested at 23andme but I haven’t determined yet whether this gene is abnormal or not.
I do know that red meat is rich in carnitine, and I have started eating more beef and have felt better since then. I also understand that carnitine is important to the production of TSH which has the job of stimulating the thyroid to produce thyroxine which is converted in the liver to the T3.
Hi Fern,
Interesting your mention of carnitine and the genetics…was wondering what led you to that??? Also, have you had your UAA (urine amino acids) and OAT (organic acids test) done yet? Quest labs does them…I am not sure if carnitine is on them, but it’d be a place to start. Anyhow, hope you are doing well.
Right now my new Endo is taking me off the thyroid hormones and I have been struggling a lot to function with daily life. Today is a little better. It is hard to keep up with this site.
I don’t have my own tests done, and I haven’t even had enough energy to make an appointment with my regular doctor.
At my last Endo visit, I was told the supplemental carnitine wouldn’t affect the thyroid, but I am too tired to do much, so I just found it and am taking the lowest dose, first at once per day 500 mg, then when Endo #4 made me decrease LT3 to 2.5 mcg, I started taking the a-L-Carnitine twice per day. Eating red meat helps me feel better too, and more able to cope.
Why would your doctor take you off Cytomel just because your TSH is low? If Cytomel works for you, and you don’t mind being on it for the rest of your life, why do you need TSH? Check out this case study:
http://www.neuroendocrinology.org/thyroid-hormone-resistance.html
Also, there is a really good yahoo group called, “Natural Thyroid Hormone Users”. Have you read “Stop the Thyroid Madness”? Here is the website:
http://www.stopthethyroidmadness.com/things-we-have-learned/
TSH is the pituitary requesting thyroid hormone. If it is low (clinically low, below range), this means that you have too much circulating thyroid hormone.
Too much circulating thyroid hormone is NOT good for you and will cause your bones to demineralize.
TSH is (providing the pituitary is working correctly) a good way to tell what to do with dosages.
Faith, your comment: “TSH is (providing the pituitary is working correctly) a good way to tell what to do with dosages.” Is a very general answer to a very complex topic. Did you see the link in my comment below (on 3/26/14 at 8:05 am)? In fact, anyone who suspects they have thyroid problems should read all the topics on the left side of that webpage.
Hi, and well met.
Sadly, I think I have traveled a bit deep into the rabbit hole as well…as I am currently dealing with the genetics and defects in my thyroid receptor.
For what it is worth, I do not agree with the seeming current belief put forth on many of the sites that taking excess endo hormone is somehow likened to vitamins in which one simply excretes the excess. With endo hormones, in the face of excess, the gland produces less…which I feel is unsafe.
🙂
Faith, that wasn’t the site to which I referred. It is this site:
http://nahypothyroidism.org/how-accurate-is-tsh-testing/
There are other causes of low TSH besides high thyroid levels.
I just read about how cortisol can lower TSH.
Yes, TSH is produced by the pituitary gland. So, Hypopituitarism is a cause, which is commonly underdiagnosed.
Fern, In addition to the yahoo group I mentioned, there is a forum in the “National Academy of Hypothyroidism” that is very helpful.
Similar to insulin resistance, some tissues of the body can become T3 resistant. Increasing T3 can help overcome this resistance.
For what it’s worth, the lady who writes that site and book is not a doctor…aand many of her ideas that sounded good back when are now outdated (sorry to be the bearer).
Just increasing T3 is dangerous. In the RT3 group (where they also recommend high T3 doses not warranted by serum levels (also not doctors), told a woman to ignore the heart palps (a known symptom of too high T3) and she had a heart attack.
Realize, that the body is self-regulating…when you take extra hormone your body responds by having the gland make less. Eventually, if you follow that pattern enough, the gland stops making any and atrophies.
Endo hormones are NOT like vitamins…you do not simply piss the excess and you can seriously harm your body by doing it.
Even in this group, there were a number of people who were given T3 to lose weight and not only got sick, but paradoxially gained weight.
Our bodies are just so much more complicated than that.
While I think my endo and most endos overreact to a low-TSH lab report, I also want my TSH to be in the normal range. My experience is that Thyrotropin aka TSH is much better at doing its job of stimulating the thyroid than the craziness of needing more supplementation that is hard to get right in the first place. The body, if normal, simply does the best job.
Also, this is an excellent resource to prepare yourself to discuss things intelligently with your endocrinologist:
http://nahypothyroidism.org/how-accurate-is-tsh-testing/
Here’s why endos aren’t up on the latest:
http://nahypothyroidism.org/why-doesnt-my-doctor-know-all-of-this/
I have very little energy to even comment here.
I looked at the links, but the source and concepts look suspicious to me.
Sure, it’s a popular concept: “The endocrinologists don’t know anything!” but the complainers know even less.
I would rather get my information from the scientific journals like: http://www.ncbi.nlm.nih.gov/pubmed/20074584
Thanks anyway.
The reason why I like that source is at the bottom of each webpage is the many footnotes with sources, which are often from medical journals and universities.
Meanwhile, as you say, you have “very little energy to event comment here”. You are free to believe your endo knows what’s best for you while living with miserably low energy.
I believe that the Endos know more about the thyroid than any of the rest of us, but that isn’t really saying much. I believe it is time for a medical breakthrough regarding the thyroid and the treatment of thyroid disorders, but that the whole world will not catch on to the problems unless some of us sufferers put ourselves into the hands of those endocrinologists.
I just got lab results:
TSH range (0.35-4.94) Jan 21st was 0.19, now April 1 at 1.18
Free T4 (0.8-1.7) was 1.5 now 1.3
Total T3 (80-200) was 128 now 116
TSH of over 1 is too high to feel well for most people on thyroid medication. Most need to be closer to 0 than 1.
I think there are two Michele with one l here…what are the chances. My symptoms seem to be more of the weight loss and feeling like I had coffee most of the time. I wake in the middle of the night and feel wide awake. Brain fog, pressure behind eyes at time. So many doctors, so little answers. Migraines is the new diagnosis but I didn’t think that weight loss was one of the symptoms.
Your symptoms sound primarily like Hyperthyroid, but that could be stress related, too. Even being hypothyroid seems to cause internal stress for me. (I have been both, swinging from one to the other.)
Have you had your thyroid levels checked? Do you have your own copy of the results? Even if they are in the normal range, it may cause trouble.
There are also other conditions that can cause thyroid symptoms.
I suffered for many years without a diagnosis, then at age 60, when my TSH level dropped to 0.01 I was treated for Graves’ disease which was worse for me.
Now, I suspect I have a defect in the gene that codes for Carnitine which plays an important role in TSH production among other things.
What are your thoughts on Dr. Wilson’s protocol of T3 therapy with ramping up and down of T3?
Hi Dr. Loscalzo, I wanted to comment on your post with my experience on WTS.
It has helped to change my life for the better! I used to get bad PSm anxiety 10 days before my period and I don’t get that anymore.
I have learned that because I’ve responded well to WTS that I have a Rt3 issue. I never thought in a million years I had a thyroid problem, but now I know I do.
Also while on WTS there would be days that I would feel amazing! Those were the days my temp was at 98.6.
WTS and the t3 have helped me with my sleep as well! I’ve always had a hard time falling asleep and now I can get right to sleep. It’s soo wonderful!
Another thing I’ve noticed is my skin isn’t as dry, especially on my heels where it was the driest!
It helps boost mood and it helps give someone the support they need through this.
I was on a benzo for 13+ years, started on it for sleep and then I needed more of it b/c of dependency, etc. To make a long story short, in 2010 I decided that the benzo was making things even worse for me and I slowly weaned off of it over 16 months. In the meantime to help with the withdrawals, my doctor put me on remeron to help with appetite and sleep, and anxiety. That was the 1st AD I had ever been on.. I wasn’t depressed but needed the additional support. I was on it for 17 months and when I finally got off of it too, I was 6 months post benzo and after my 1st cycle of WTS I felt I had enough support from the T3 that I stopped the remeron. I’m soo thankful to WTS because it helped me get off that nasty drug remeron, which I had been withdraw ling from for over a year…. I was able to jump off of 3.75mg of liquid remeron and because of WTS I suffered little side effects. I am super sensitive to all meds, etc and to be able to do this was amazing. Before that I was only reducing my dose my 10% each month. My initial dose was only 7.5mg.
I hope this post helps you decide if using this therapy in your practice is right for your patients!
My doctor is one of my heros, I love her and am so thankful the Lord led me to her practice!
I will say though that you have to hold hands with your patients through this b/c it can be tricky, but it’s worth it!
If you have any questions for me I’d love to help! Just let me know!
M
My thoughts are this (and I share only because I’m probably the only one who’d say it: I think it is dangerous to give thyroid (or any endocrine hormone) to patients with healthy thyroids. My reason being is that it will cause the thyroid to make less and the danger of atrophy is made significant because best as the world has tried, no rx thyroid is as good as what one makes.
Likewise, if there is an RT3 issue (sign of a chronic underlying illness)…then that should be looked into…rather than just cover it up with T3 and leaving it to worsen, imho.
As well, and I am probably a bit ahead of the time here…but IF someone has an issue with both the adrenals AND thyroid…then the culprit is the pituitary or hypothalamus. Since the hypothalamus regulates core body temp, my other opinion is that THIS should be checked out.
Lastly, in a healthy person who’s liver is functioning well…excess T3 will probably be fluhed from the system and thus the desired affect not reached. In those, like the other person posting about hyper symptoms, i think the liver should be checked out…again, just my opinion. As well, excess T3 (hyper state) is dangerous…it causes bones to demineralize, one of the symptoms of too much (although not often mentioned on the internet) is weight GAIN, and feeling sicker than before.
I say all this not to criticize, but to hopefully give food for thought (which ou may or may not be interested in). Being surrounded these days by sick people, the pattern I notice is that first it is one thing, then another, and then a few months later another. I think that the cause of this is that symptoms are treated…and although one may feel better, the true underlying cause is worsening…and thus the next thing crops up. I know that many doctors don’t think that way…but it’d sure be nice if they did, and I think I can speak for most people with health issues…we’d really like the true issue corrected, even if we are happy at the moment to feel better from symptoms treated. Hope that makes sense.
Best of luck to you in your practice.
The main causes of inflammation and autoimmune disease:
Hi Faith and thank you for getting back to me!
I do still have my thyroid, thank goodness!
I was on Wilson’s temperature syndrome and did very well on it.. some of the days I would feel amazing and some of the days I wouldn’t.
But once I got off it the 2 or 3 x I would start getting very very dry skin, couldn’t fall asleep, and it would case me more constipation.
You see I already take LInzess 290mg, which is a prescription med that helps people use the bathroom, plus Miralax 2x a day. So there is no reason I shouldn’t go, but when I’m not on t3 I find it harder to go. It feels like my system gets tighter or more stressed when I don’t take t3. But when I do it starts to relax some.
Does that make sense?
Today is my 4th day on t3 only, I’ve noticed that today I am tired! I am only on 10 mcg, 4 x a day and 15mg Slow release t3 at night… and maybe I need to increase my morning does already because maybe my body is making less t3 and I need to increase now. what do you think?
I also suspect that I have higher coritsal levels after around noon because that’s when I start feeling internal anxiety. I meant this always happens! I am also holding more weight around my hips, butt and lowers abs. I’ve always had tight abs and this is a like a layer of fat or water.
do you think cortisal may be the cause of this? Does t3 mess with cortisal levels? I also crave sweets and junk food which I don’t want to eat b/c of the weight gain.
About sodium, I am very health conscious! I used to compete in figure shows, just 2 years ago I did my last one. So I watch my sodium intake, etc. So my water retention is not from sodium! it’s from somethine else. When I was on WTS there were days when I would be cyling t3 that my weight went down to 105, my normal weight before all this was always 103. and my peak weight was 112. I’m now 109. I am only 4′ 11″ so 104 would be a perfect weight for me. I know it has a t3 or cotisal link to my weight gain!
Man I am tired, I could totally go home and go back to sleep!
Hugs to you and God bless you for helping others!
M
Hi Michele,
I understand your frustration and concern.
Your super tiredness suggests that maybe it is not enough thyroid hormone…that said, it is hard for me to judge because it is not my body and you still have a thyroid. I do not have my thyroid and take T3 only…I take x2 10mg pills, 10x a day (20 pills total). Before that I was on half that dose and slept 22 hours a day, until a doctor suggested I increase until I have symptoms of too much. Another thing to consider is the fillers of the T3 as they can have a huge affect. The Paddock brand I did not do well on, felt like I wasn’t getting any (also got hives). Currently I use the Mylan brand and do quite well on it. Again, is not my body so very hard to judge from here…but the general symptom of too much thyroid is heart palps.
That said, thyroid and cortisol are NOT connected at all…likewise, it is generally adrenaline and not cortisol that causes anxiety feelings. My understanding is that cortisol is what we use for day to day stress…and when that is LOW we use adrenaline instead. A better test that I have found than the usual panel run by endos, is Pharmasan’s Neurotransmitter Test…that will tell you what is going on with your adrenaline better than the other test.
As well, there are a number of other changes in the body that can cause weight gain that is difficult to lose that has nothing to do with the thyroid (or the adrenals). For example, low taurine (an amino acid we make) will also cause weight gain that is difficult to lose. Also, high levels of norepinephrine (an anxiety/adrenaline precursor) leads to glucose release from muscles…which could, in theory, cause a corresponding insulin release and weight gain. And fasting leads to increased norepinephrine levels. Low dopamine, same thing…weight gain. As well, it was recently found that too many “good” bacteria in the digestive system also leads to weight gain because more food is broken down and thus absorbed. As well, poor liver function or eating too often in a day that causes the liver to constantly have to deal with foods not hormone levels; not enough quality sleep; too many carbs.
My personal belief is that weight gain (beyond 10 lbs) is a symptom of illness in the same way as a sore throat is…and that eventually doctors will start seeing it that way. Already, 100% of hospital/doctor created diet and exercise programs do not work…which suggests to me that it is NOT diet and exercise related, but inner body chemistry related. My secondary belief is that it is a result of nutrient deficiency. That said, it could be from nutrients you would eat…OR nutrients you would make. From what I know personally of Phil, from Fat Sick & Nearly Dead (juicing movie)…is that I saw before my very eyes in 10 months time he was at his ideal weight with no health issues. He had been 427 lbs when he started. It is as if, in the face of finally getting complete nutrition, the body simply heals itself and un-makes the fat cells…which are, in reality, only three building block chemicals. Although they seem logical to me, I have come to realize that my ideas on fat are still a bit radical for today. Regarding what I suspect is nutrient def weight gain, it will happen regardless if a person eats or not (I don’t eat much, generally less than 500 cal a day)…but to the defense of those who do, a nutrient def would also cause one to always be hungry (the body’s natural attempt to get that nutrient).
One of the big difficulties in finding the culprit of weight gain is just how complex our system is…and how widespread our divergence from things the way nature intended them (foods and meds primarily). Just when we think we know something about something (like eating more veggies is good for you), we find out that this may not be true. Certain genetic mutations can affect our ability to process folate. And veggies from the broccoli family (esp and including kale which are hot new fads) suppress thyroid function…as does soy. Although soy is touted as this great source of protein, it was never meant to be eaten. Furthermore, we feed our feeder animals corn which nature never intended them to have and lethal overdoses of endocrine hormones…and then eat their meat. Eventually (as in it is not a matter of if, but when) our system starts to crack and not perform nearly as well. So widespread is this that we think of this as normal…like heart disease is ever normal, or diabetes, or weight gain. I know that there are people who feel that there are ways to eat the broccoli family safely with thyroid issues…but as a person without a thyroid and lots of trouble getting enough thyroid (despite having enough in my blood stream), I can tell you it absolutely DOES affect one’s ability to deal with the hormone they are taking. Many people may not notice, or they may be on enough that they can do both, which is great…but for people like you (and I) who have trouble using what we are taking or making, it matters. And, sadly, soy is in like everything…chocolate, gum, teas with fruit.
As well, it just seems to me (matter of perspective I suppose) that more people are sick with “mystery illnesses” than ever before. What I have found of the “mystery illnesses” (and all illnesses really) is that as a matter of course during reproduction of cells, our genes are changing…as in they are not static, but subject to change. Whether due to def of materials to build the cell or changes in our environment or both, in those changes, the genes that encode our ability to make and unmake the chemicals our bodies need functions increasingly less well…and, as a result, things are becoming unbalanced. And even with all that I have learned, I can see that the next level of knowledge is even infinitely more complex than that…as in, it is not just what we eat, it is not just what we can process…but it is about can we even use it if we have it??? Like the thyroid hormone and defects in the receptor…or B12 def despite adequate B12 in blood stream…??? All questions looming pulling me towards the next horizon in all this.
If I hadn’t found that I wasn’t making taurine well…and began supplementing it, I doubt I would be walking now. Same with the B12 that I can’t seem to do without. I wouldn’t have known any of this if I had not 1) done the genetic testing; 2) been made worse by what the so called experts suggest to do; and 3) had the audacious idea to test the things the genetic report said were affected…to see what really was. Everyone’s mix will be different of course…but is was the single most effective inquiry into what was going on with me, and yielded the most direct treatment thus far.
If I were you, I’d get the second Vit D test done (the 1,25 D)…if that is ideal or high, my guess is the excess D you are taking is the culprit. RT3 may also be, and can be tested as well. After that, a look at diet for sources of soy and veggies in the broccoli family. If all of that is done and the thyroid issue is still an issue…then it is probably time to look deeper into the genetic testing and more comprehensive lab panels. Diuretics may also be helpful…just a thought. Soy is a real downfall for me.
Best of luck. 🙂
Hello Faith and thank you! I spoke to my doctor and we are going to get the additional vit-d test done!
All my other vitamin levels are normal, except for Magnesium and B1.
I’m already supplementing with Magnesium and I’ve rtied b1 but stopped it.
Here’s my issues today… yesterday after I took my Fst acting t3 my temp weas up to 99.2.. so now my temp is above 98.6 and that’s probably why I’m not feeling the greatest!
Then today, after talking to my doctor, I took Slow Release t3 this morning and my temp is again 99.0.. but my pulse rate is faint and only 72. So I”m not sure if now the t3 is too much or if it’s still too little.
But my temp is really high and I don’t like that!
Thank you in advance for your response on this!
Hugs – M
Hi Michele,
Sorry this is going so rough for you right now, ((hugs)). And *yea!* that your dr is willing to test the 1,25 D!!! Awesome dr!
My understanding of B Vits is that, with the exception of B12, they should be taken together rather than individually.
Going back to some other things you previously about RT3…if you have an RT3 issue, then you have some underlying chronic condition going on…or you are fasting. The body makes RT3 normally, but does so in excess in order to regulate the body. Drs tend to ignore RT3 because they see it in excess the hospital setting…and know that as the patient’s health returns the RT3 corrects itself naturally.
The problem comes in when someone is sick with a low-grade chronic something…then it is always high and always a problem. And while it can be bypassed by taking T3 only, the cause of the RT3 remains the same…and untreated.
Fever is an immune response, whether you are fighting a virus, a bacteria, or your own body (as in autoimmune)…it is a sign that *something* is going on. Bacteria generally cause high fevers…or higher, while viruses tend to cause low grade fevers. Many people have low grade Epstein Barr Virus EBV going on. Getting vaccines as an adult, esp the MMR in women can cause low grade chronic infection. As can many other things.
I happen to have Lyme disease, and can tell you that for years my only symptom was that my temp was low and I never got sick (which I thought was a good thing)…but just as many have low temps. As well, one of the co-infections cause what is known as relapsing fevers that are a common symptom of autoimmune.
I thought you mentioned having Hashi’s??? I don’t have it so I don’t know too much about it, but would venture to wonder if the fever is a sign of immune attack in that regard?? Just a thought.
Not sure if your dr has an open lab (that you can go to anytime) or if you have to have an apt, or if your dr uses Quest labs that you can just go in. It might be super helpful when you are right in the middle of one of these reactions to get your TSH and FT3 checked. Especially if your TSH is pretty normal most of the time (mine’s wonky)…if your TSH is super low (like below range), then it is probably too much T3…if it is high, then not enough. It is also a relief to see your blood levels of FT3 to be sure. TT3 checks it all, bound and unbound, plus RT3…so that can’t tell you much. I would think if you could go in twice or maybe three times…once while in the middle of a reaction and once when you are feeling fine you will get a clearer picture of what is going on.
Hope that helps. Hang in there. I know it can feel like you need it fixed right now…my first couple years after my thyroid was removed it was like that…and it was agony that I’d have to wait a month on one to get re-checked, it didn’t make sense…but now some years later, my drs sage advice was to tell me that the body is very resillient…and it would seem she is right. You really will find the answer, it will probably take longer than you would imagine, but you WILL find teh answer…and everything you try will bring you a step closer, s hang in there. 🙂
Thank you so much for getting back to me Faith.
I do test low on Vitamin D and have been taking 50,000 IUDs 1x per week for several m onths and now I take it 1x bi-weekly.
Since I’ve change to 1x bi-weekly my nails are not quite as nice, actually they’re not good anywas but I also know that Vit-D is sooo crucial to everything!
But now that you mention the corrilation with t3 and vit D I wonder if bc of the vit d I”m not making t3 as you had mention.
I’m super excited about this and learning all this stuff!
I am taking Slow Release T3 at night bc I feel it is helping with my sleep and helping me feel stable when I wake up in the morning.
when do you know when to up dose on t3? what signs might one have when they need more or when they need less?
I hope to also lose some of the water retention that I have, I am such an active person and have been in such great shape for years, but now I fluxuate sooo much.. I was just 107 and now I’m back at 109..
Do you know about when someone who just starts t3 will lose the water retention and lose that weight?
Also it’s keeping me from using the bathroom as much (bowel movement).
What I find strange too, is all my hormones are lower than ideal.. they are on the low side, my progesterone, testosterone, estrogen, DHEA, growth hormone, etc.
Could that all bein correlation with the t3/thyroid?
And one my t3 is working properly my hormones will fix themseleves?
Hugs and thanks!
Hi Michele,
Try to realize that the lab ranges are not perfect…to get them, they average the results for everyone at the lab getting tested…which includes healthy and nonhealthy alike. Sometimes, your numbers are just ideal for you.
Regarding dosing, I am on T3 only (not slow release)…and for me the symptoms of too much and too little are nearly identical…with one exception either way. When too little I get weepy and cry at cute things…when too much, I want to fall asleep soon after taking it. And, as I say, I take it 10x a day.
There was a time, however, when I was on way too little and did not realize it for a while. I was in incredible pain and sleeping 20-22 hours a day, I thought because of coping with the pain. One of my dr’s suggested that I increase my dose until I got symptoms of too much. I ended up doubling it, the pain went back to bearable levels, and I stopped sleeping all the time.
That said, the hallmark that I think one should look for is this…if you take more and your T3 levels stay the same then it is likely that this is what your body set your levels at. However, if you take more and your levels increase, then it is a good sign that you needed more. This is an important distinction, I feel, because if you still have a thyroid (which it doesn’t sound like you do), then taking thyroid hormone will cause one’s thyroid to make less…and less and less, until it makes none and atrophies.
I know the so-called internet websites “experts” say that T3 should be in the upper third of the range…but this is just not true. Best to go with how YOU feel on this one.
If you are going to take Vitamin D, likewise and an endocrine hormone…my suggestion is get the dual D test…the 25,D (that they always test) and the 1,25 D (that they hate testing). This way you can see proof positive whether your active (1,25 D) is in the normal range or not. If you have the Vitamin D Reversal Pattern (low 25,D normal/high 1,25 D) that is a pretty clear sign that something else is going on.
I am not going to make any friends by saying this (and probably a lot of enemies), but any doctor or studies conducted using only the 25,D tests…are invalid on their face. I am sorry to say that and do realize that they put in a lot of work…but it is just the same as testing only T4 and making assumptions about health on T4 only labs (or TSH only labs for that matter)…and, it makes absolutely no sense. I know that it will take the world another five years to catch onto that…but the more you know the better I always feel.
I can’t say about the weight loss…and I am not sure where it is being connected to T3 on the internet (rue the person spreading such falsehoods). IF weight gain is purely from low thyroid then thyroid supplementing will bounce it back almost immediately. THAT SAID, most people I know…that once they get on thyroid hormone (rather than from their own thyroid), do not fair all that well…and weight gain seems to happen to most. For me, I fluctuate between 40-60 lbs from what I was when they took my thyroid out. Had I only known then…what I realized soon after…man has yet to replicate nature…and ANY thyroid hormone (even dried out feeder pig gland) is imperfect at best. That said, water gain is usually something else…like too much sodium. One thing I have learned, is that I need to eat at least 1,000 calories a day or I gain weight.
One of the surest remedies for not-going is a magnesium rink sold by Walgreens (and the like)…horribly sour. I have found that NatureMade’s Magnesium Oxide (a pill) works even better. Usually just taking two will do the trick. It is often sold at Target. People do not like the Mag Oxide form as a supplement, but as a lax it does great.
Your question of, if you fix the thyroid levels will all the other hormones fix themselves…is another false internet rumor (strongly and passionately believed, but false on its face). The connecting factor being the pituitary and hypothalamus which set the levels and regulate it all. Beyond what the pituitary and hypothalamus say…then it would be enzymes, and the liver and kidneys.
The primer is, the hypothalamus listens to the body’s levels and determines what levels they should be…it then tells the pituitary which tells the corresponding glands what levels to kick out. IF your TSH is fine, and IF your pituitary is working perfectly…then your T3 levels are fine…even if low by the standards. IF, however, your TSH is super high…then it is screaming for more thyroid (and if it is super low, it is screaming for less thyroid hormone). Another common false belief is that one can force a hyperthyroid state in the hopes of losing weight…but not only will the liver correct that, one’s bones demineralize (I suspect because calcium binds to the hormone rendering it inert…or some such similar action).
You body’s levels may just simply be low…and that may be perfectly normal for you. Likewise, for reasons doctors may not know (yet), your body (hypothalamus) could simply have set your levels lower.
Why things slowly start to breakdown as we age is generally because as our cells reproduce, they do so imperfectly…so that ever set is slightly less perfect than before.
The treatment for water gain is usually dieretics (things that make you pee a lot).
Hope something there helps. 🙂
Michele,
Sorry, I can’t find your post about dropping weight, sensitivities to light and sound, and motion sickness feeling…but perhaps can help point in some directions.
I have had my thyroid out, am on T3 only due to overproduction of RT3 (way beyond range)…and yet nearly always hypothyroid despite taking enough. Along with that, I have had some symptoms that don’t fit squarely in any picture. Having been sick now for over 5 years, I have found some things that were more useful than others.
First of all, I did end up doing the 23andMe.com genetic test…because after going round about the long way, it was the simplest easiest way to get all the testing rather than piecemeal. I did find that I have defects in the thyroid receptor gene/s. They are abreviated THRA and THRB. My THRB gene is the one with lots of mutations and may explain why i am often hypo.
After my dr tried me on a number of supplements that the so-called experts say you should take for some of the other defects…and after they all made me sick…I started to think, why not just test the things that they say are affected and see what is (and more importantly, what isn’t) affected. This set of labs did me more good than anything in the previous 5 years. The labs I did were the Urine Amino Acid (UAA); Organic Acid Test (OAT); Neurotransmitter Test w/ taurine (from Phramasan); with some additional tests. Some of the other labs were pertinent to my situation…like the taurine, aluminum (because of the GABA/Glutamate imbalance), etc. But this by far yielded the best testing differences. Previously you mentioned only having the thyroid and anemia tests come up off. One of the oddest things we found, is that I am not making adrenaline very well. This sort of runs contrary to the cortisol and temp tests (sorry about that). Seems like there is a breakdown in the enzyme that converts norepinephrine to epinephrine. This led to me fainting and feeling quite unwell with ANY stress.
Granted, with all the genetic stuff…and with then having to study things like the methyl cycle and the general making and unmaking of compounds in the body, I have gotten a bit deep…but it is really not as difficult as it first appears…and I highly recommend both the genetic testing and lab panel for anyone who has unexplained symptoms…esp those who are stumping their doctors. It was from that testing I began supping taurine and a special B12 that I began finally getting better. There was no way that my conventional doctor (or even my alternative one) would have thought to do that.
Lastly, and perhaps completely irrelevant, Lyme Disease has been noted to cause sensitivities to light, sound, and chemicals particularly in the midwest USA. It is possible to have a low-grade, chronic, underlying case of Lyme and not know it. That said, it is also possible to have chemical sensitivity and not know it. Some of the common symptoms are low body temp (usually a degree or two low) and not catching many colds. Unfortunately, the screening test used only has a 35% chance of picking it up…therefore the gold standard test is the Igenex Lyme Screen ($260)…it will show whether or not you have been exposed. In later stages you don’t produce as many antibodies to it…other tests that could show whether it was worthwhile to run are the CD57 and C4a. Both are aspects of the immune system. CD57 will be low if you have late stage Lyme and are likely to test low on Igenex. The C4a, however, will be higher.
One the subject of chemical sensitivities, two movies hit it home:
Short: https://www.youtube.com/watch?v=SCD-_47Maww
Long: https://www.youtube.com/watch?v=r8lCXbPwg1k
Hope some of that helps. 🙂
Faith – how were you able to “decode” your THRA AND THRB SNPs from the 23andme raw data and find out which SNPs are the risk alelles??? I ran them through SNPedia and came up with nothing.
Hi Tim,
Admittedly, 23andMe is difficult to decode as it only shows 2 letters…and not even whether they are capitol or lower case! They also don’t show repeating gene sequences.
And while I don’t know this part for certain, I also don’t think that they include the patented genes either (like the breast/ovarian cancer gene)…since private companies are making big bucks being the only ones who can test them.
That said, I can tell you this (and this will really get your brain working)…for those with double mutations of the specific “named” SNPs of the MTHFR gene, they’d either be dead now…or some other SNP or some other gene/enzyme is doing the job. 😉
Hope that helps.
So, how did you determine that you have thyroid receptor issues without first finding the risk alelle?
I was tested for 2 BRCA genes with 23andme. Also regarding WDT (Armour etc.) my GP said it contains antibodies of porcine origin that would attack my thyroid gland so with having Hashi’s I’d be better off on synthetic thyroxine and T3. Has anyone heard of this or better still knows a paper purporting it. I could ask the GP but don’t want to be challenging her all the time!
Hi Honora,
My understanding is this…the two main things from your own thyroid that your immune system attacks are Thyroid Peroxidase or TPO (the enzyme that “digests” iodine to be used in the making of the thyroid hormone; and Thyroglobulin or TG that bins the iodine to the molecule of thyroid (ie T3 is one molecule thyroid and 3 molecules iodine). Since you have Hashi’s you have probably already had the TPO Ab an TG Ab tests done. Dried out thyroid tissue contains these two things that your immune system will recognize and attack just like it does your own tissue.
Hope that helps. 🙂
Thanks for your reply, Faith. It sounds like what your describing is a situation where my body attacks the Armour medication. What I thought she said was the Armour medication attacks my body b/c the pigs’ antibodies (anti-TP0 and anti-TG) attack my TPO and TG. I don’t know if a pig’s antibodies would survive the manufacturing process of WTE. I guess I could ask the various dudes who manufacture it but I’m guessing they wouldn’t know. I could ask one of the long-suffering immunologists at work that I ask these questions to but I suspect they wouldn’t know either! Cheers.
Hi Honora,
I don’t know, but i don’t believe that it is processed near as much as they say in internet groups. I take a pig pancreatic enzyme and the insert contains a warning about the possible transmission of bacteria or viruses…assumably because it cannot be cooked to remain active. It would make sense that similar is true of active hormone.
It does contain TPO and TG. My personal thought has been that it is contradicted in people with hashis or graves. However, because of the false belief about it being “natural” or somehow better has led to many (what I call) internet doctors in private practice looking to sell what people are buying with no regard to the risk to patients tend to promote it…something I consider a dangerous practice. Same as the proactice of giving tired patients T3 even when their T3 levels are normal…or T3 for weight loss. No health minded person would consider Armour Hot Dogs a “health food”…and with the thyroid gland being far more polluted than the meat it sort of just baffles me. Anyways, that is what I know.
That said, it also contains other hormones that some may have genetic defs in and thus are helped by those more than as a source of thyroid. I also wish doctors or researchers would pick up the ball on testing for that since there may very well be a much safer alternative to supping what is missing.
Hope that helps. 🙂
Good morning..sorry for all everyone is feeing. I have not had weight gain but weight loss..loss of muscle and fat. At times I feel like I have adrenaline rushes..don’t need morning coffee anymore. Face gets tingly like it has novacaine at times..pressure behind eyes…sensitivity to white lights and feel motion sickness when I am not moving. I take synthroid 88 and cytomel 5mcg…t4 fine but t3 and iron levels low. Had probably every test..mri out there. Do have hasimotos. I know there is something else up but feel like a science project that nobody wants to finish. Wondering if anyone has symptoms such as these…thank you.
Sounds like Graves’ disease, to me, or a hyperthyroid cycle within the Hashimoto’s, which I have heard can happen. Maybe other autoimmune issues. I guess your TSH was within range though? Maybe yours is the classic “low T3 syndrome” ??? Maybe you need a finer adjustment to your meds, maybe such precision that you could only obtain if you were adjusting them yourself according to your symptoms, like pulse, and only if you were not on the time-release types. Pulse faster than 80? cut back on cytomel; slower than 60? add a bit more; in the 70’s and otherwise symptom free? stay on your current levels.
Just my opinion. Talk to your doctor for his recommendations.
By the way, it seems like there are two Michele s posting here… How can we tell you apart?
Hello, I am 37 years young, a mommy of 2 young boys, a full-time working professional, etc.
I’ve suffered from ADHD and anxiety but have found that my anxiety is all related to my thyroid, which is soo comforting! When my thryoid is doing well, I feel great with no internal anxiety!
Here is my experience with slow release t3:
I just got done with cycle #2 of Wilson Temperature Syndrome and it’s helped me so much. But it’s now shown me that I do have hypothyroidism.
My t4 and t3 levels are not low off the charts, but they are lower than ideal levels.
I believe b/c of doing the WTS that I have a Rt3 issue, my t4 isn’t converting properly to t3. And here is why I think that. Cycling up on WTS was easier then cycling down off WTS. Plus, once off WTS my temp is avering 98.6. When cyling up on WTS or Down my temp would only capture 98.6 for 1 – 2 days at the tops and then go back down a little.
My sleep improved SOOO much on the t3 cycle but once I came off it I found it was harder to fall asleep again. I’ve always had a hard time falling asleep and that’s why for 13+ years I took a benzo to help me fall asleep, but I’ve sinced weened off that horrible dependancy drug, I’m 7 months post benzo, yeah!
Anyways, I’ve also found that t3 helps with my constipation! When I’m on it I could go a lot more and when I’m off it it’s harder to go. I take Linzess 290mg 1x and Miralax 2x a day to help me go to the bathroom so I can notice a difference when I’m cycling WTS and constipation.
Also now that I’m not on WTS and time release T3 my skin is sooo dry, especially on my feet. Dry enough that the bottom of my feet catch onto my soft bed cover at night, 🙁 also the tips of my fingers are dry and getting rough as well. I’m a petite lady and this is not cool!
I have a wonderful Doctor and she is trying to help me with this. However she is over an 1 1/2 away and she is very expensive and she thought to put me on Armour 30mg, which I took for only 3 days and here’s why. I respond to things very quickly, the 1st day I was good in the morning then by the afternoon I had anxiety from it (It was over the weekend too). I managed but it was uncomfotable, but then the next day I felt great and then the following day again i didn’t feel so well. Each of those 3 days I found it VERY Hard to fall asleep and each of those 3 days I had internal anxiety, it’s hard to explain! I didn’t have any anxiety at night while trying to sleep but felt I couldn’t turn the lights out.
I think it’s because of the t4 and my body just doesn’t like it, even though my blood work showed that the levels were lower than ideal.
I also think the reason I might of felt somewhat good for 1 of those day is bc of the quick release t3 that is in Armour.
I thought well I’ll try to use the slow release t3 as follows:
1 in the am and 1 in the pm, similar to WTS, but I wouldn’t cycle up. Well I started out on 7.5 and took that for 2 days and then worked up to 15mg and the 1st night on that dose I slept great! Then yesterday I took 15mg in the morning and 7.5mg at night and noticed right away I couldn’t use the bathroom for a bowel movement, even though I took my meds to do so, and I felt things moving around in my tummy to do so.. then I took another 7.5mcg and within an hour I started using the bathroom. However I didn’t have good sleep at all!
This morning I didn’t take any t3 and my skin is getting very dry again already…. especially the skin on my heals!
I hope you can shed some light onto what you think the best course of action would be.
To try Cytomel 3 – 4 x a day, maybe the fast release is what i need.
Or maybe try 1/2 of a 30mg of Amrour and SR T3 at night.
I am currently also on 50mg of bioidentical progesterone pill and 30mg of bioidentical progesterone cream, 1x each a day.
Plus the 290mg of Linzess and 2 x a day Miralax.
And that is it.
I also think that my cortisol levels maybe low in the morning and higher in the afternoon, or visa versa.
I do find that I feel much better in morning, even thought that is when my temperature is at 98.2 and then by noon or so I start to feel internal anxiety and my temp goes up to 98.6 or higher sometimes.
Hypothyroidims runs in my family!
I did want to add that I find it very easy to gain weight and hard to lose weight. I find I cannot work out in the am as hard and as much as I’d like to and I once did. If I do, then by the afternoon I feel even worse with anxiety.
I am 4′ 11″ and my normal weight is 103 but I am 108 and go down and up a pound all the time. while on WTS at some doses I got down to 105 but then it changed b/c of the WTS cycling.
I also retain water as well, my tummy isn’t as tight as it always has been.
I have always been in great shape, competed in figure shows, etc.. but right now my weight is crazy!
One other thing, while on WTS when I needed to take a rescue dose of t4, it would sometimes make me feel even worse. And it was supposed to help!
Thanks again for your help!
Hi Michele,
I take regular T3 (not slow release), and I take it 10x a day. What I can say is that it is difficult to know what you will need and how you will need it until you get going on it. I find that I take it more often in the morning an evening and less often in the middle of the day. Like you, I am pretty quick to react…and have learned my body’s language of when too much and when too little and adjust accordingly.
The inherent problem with taking any hormone is that the liver will clear (or should clear if it is working correctly) any excess. So, hypothetically, taking T3 once or twice a day the liver would clear out the excess within a few minutes leaving one low.
RT3 is fairly easy to test, and I know Quest Labs tests it as well. RT3 is made, primarily, in the liver…and usually in response to some underlying illness…which may, or may not be your problem.
Low T3…or low conversion to T3…could have a number of reasons. I know of at least one person who feels best when her T3 is in the lower end of the range…and T3 should always be dosed on how you feel (imho). The amount of T4 really doesn’t matter…as it is just a storage form of the hormone that must be converted to T3 to be used…again, something that happens primarily in the liver.
That said, you seem to be a good responder to thyroid supplementing…so you have that on your side. Armour has many other things in it and not just thyroid hormone. As a hashi’s person…it also has the things the immune system attacks.
Alternatively, there are at least two other causes (besides RT3) that I know of that can contribute to normal T3 lab results and still hypo-thyroid. One is Vitamin D…which is, in reality, another endocrine hormone. The endocrine system shares a receptor and Vit D “displaces” T3 from the receptor when it is in excess. And, it can be in excess unbeknownst to most people and even doctors…because for whatever strange reason, they only ever test the storeage form of Vit D (similar to only testing T4). People who have genetic defects OR people who have bacterial infections over make an enzyme called CYPB27 that converts that storeage Vit D (25,D) into the active, usable form (1,25 D) so as to have someone ALWAYS look low on the test that they do. And, because the person LOOKS low they tell that person to take Vit D…which then causes the untested active form to become too much and prevent T3 from getting in the receptors.
The other cause is a genetic defect with the receptors. Although I am sure you could get testing of the THRA & THRB genes done, the cheapest way I have found is through the 23andMe.com site for 99$…an then search the raw code for the two receptor genes. I found that I had numerous defects in the thyroid receptor B gene and suspect that this is why I am often hypo-thyroid despite taking T3 only multiple times a day.
Hope that helps shed some light. Sorry you are experiencing thyroid issues. Sounds like you have a helpful doctor. 🙂
So, I’m on Nature-Throid and now wondering if I should? However, I do feel better on it but also wondering if I should be taking an extra grain per day… I have PCOS, Hypothyroidism, and suffer from hypoglycemia and adrenal fatigue ugg…
Most recent article on this topic: http://www.holtorfmed.com/uploads/file/protected/controversies-in-the-diagnosis-and-treatment-of-hypothyroidism.pdf
My story:
After a diagnosis of Graves Disease in 2008 and total thyroidectomy, I could not tolerate sufficient amounts of T4 to feel well and developed level 9 pain and muscle weakness. I read Dr. John C. Lowe’s textbook, The Metabolic Treatment of fibromyalgia (which I had been diagnosed with 20 years before and consisted of muscle cramps and exercise intolerance). I realized I had probably always had problems converting T4 to T3. I insisted on trying 5 mcg Cytomel T3 in addition to .112 of Synthroid. Within days all of the muscle pain and weaknesss and everything connected to fibromyalgia was gone. It was gone for 2.5 years. Then I was diagnosed with Type 1 Diabetes LADA with GAD65 antibodies and had a return of the muscle pain and weakness with a current diagnosis of Stiff Person Syndrome. I have tripled the Cytomel 5 mcg three times a day and dropped the Synthroid to .88 six days a week. I still believe I have suboptimal levels of T3 at the tissue level, complicated by the Valium I have to take for SPS, and know I have suboptimal levels of GABA due to the GAD antibodies. I believe there is an unequivocal connection and that collaboration between endocrinology and neurochemistry will point to a cure for all of this. GABA and thryoid hormones are entwined. And GABA injection studies have shown that GABA not only prevents but reverses type 1 diabetes (Note: not oral GABA – it does not cross the blood-brain barrier). The level of T3 in the tissues is affected by so many things and the TSH/T4 tests do not reflect accurate tissue levels of T3. The pituitary can have much higher levels of T3 than the tissues have access to as well. But I can tell you for certain that T3 made me feel like I was 20 years old again. It reset my sleep cycle, corrected the IBS, got rid of the muscle fatigue and exercise intolerance, I had energy to burn, and built muscle strength and range of motion etc. for those 2.5 years. GABA/T3 are a large piece of the puzzle, I’m certain of it. Prior to the LADA diagnosis I had a very stressful year, with deaths in the family, and I went into physically stressful activities to cope with it. I’m am certain that added to the imbalance. I want to try higher levels of T3 but am meeting resistance and my Endo still insists on using T4 /TSH as a guide for “normal”.
Hi Diana,
So sorry that you have gone through all that. Someone else who posts here also has stiff person syndrome. Also, I share many of your issues with the T3 and GABA…and not feeling like you are getting enough even though there is sufficient T3 in the system. As wel, my TSH is all over the place. Also, the fibro, thyroidectomy, pain, stiff muscles…and muscles knotting at rest. As well, in my experience it is connected to the thyroid as well…but is nortoriously difficult to find drs who understand the connection of pain and thyroid. My thoughts on why these things have ranged all over the place…and I still don’t have a perfect answer, although am much closer than before.
My path went in a slightly different direction than yours and I was dx’d with late stage Lyme as well…which led to the genetic stuff. What is on the internet is a bit wonky, but it led to what was, at long last, helpful. I did the 23andMe genetic test (was only $99 and is pretty comprehensive)…from there, everything the so-called experts said to do that my dr was giving me made me sicker, so one day I said lets just test everything the report said was affected and see what was really affected…that is where my answers began taking shape.
First and foremost I found that I had stopped making enough taurine…and the supplementing of is what started turning my health around. I also found that, like you, I have a gaba/glutamate imbalance…for which I take the rx baclofen…which is a gaba with a molecule added to confuse the neurons (it is an MS drug, I guess in MS the neuron reject the gaba)…anyways, point being it DOES cross the blood brain barrier and DOES work incredibly well…at least for me. I went from being curled up where my PT had to keep stretching me out to being better than when they stretched me. It still is hard to lay flat on my back (it stretches), but am worlds better than before. One of my dr’s suggested phynelated gaba saying it crossed the bbb, but no such luck for me…it did not work the same.
I also found out, by searching the raw code on 23andMe, that I have a lot of defects in my thyroid receptor. Although I haven’t seen the article on connection of the thyroid and gaba receptor, I know that endocrine receptors are one receptor that does multiple things so it doesn’t suprise me.
The other thing I can add, regarding the T4 issue…you might look into a rx called Tirosint (needs special permission for insurance), but is a T4 with no fillers…and is the ONLY thyroid drug I have taken that I did not have side effects from. However, as I make way too much RT3, I take T3 only in the form of Ctyomel…I take .10 – 10x a day. Also, have to take the Mylan brand as the Paddock brand gives me hives and I feel yuk on. So just some thoughts there.
Again, sorry about all you have been through…hang in there.
-Faith
Back in 1995 I was diagnosed with depression, lethargy, weight gain, sensitivity to temperature, Epstien Barr, headaches, and tested and treated unsuccessfully for ALL of those ailments. Most days I didn’t have the energy to get out of bed. I read about a doctor in the area that treated thyroid disorders as described in Wilson’s Syndrome and went to him. He didn’t have many patients. He explained to me that the reason was because his patients had become well. He also complained that the AMA was on his back.
Noting my low body temp 96.7, he tried me on a small dose of “compounded” T3. He explained that compounding was necessary as T3 (Cytomel) only has a working life of about 3 hrs. He wanted me on a stable daily dose so it was compounded with a 12hr release. I took each dose 12hrs apart. Within a week, I lost 5 lbs, and began to feel like I did when I was a teen, and no depression! I then went back and he continued the treatment. Monitoring both body temp and heart rate, we found a dose that brought my body temp up to 98.2 without increasing my heart rate. After 3 weeks I was a brand new man! I fired both previous doctors that had me on depression drugs and all sorts of other chemicals that did not work. That was 1995 and have NEVER had a relapse of Epstien Barr since, nor depression, nor temperature sensitivity. Oh yes, and I lost 20 lbs and now eat what I want without fear of weight gain. I’ve since lived a full productive life and I credit that doctor for giving me my life back. It’s difficult to find doctors that will continue treatment, but they can be found. It should be noted that I am ONLY on T3. Blood results confirm that the body doesn’t really need T4 at all. My T4 level went to Zero back in 2000 and remains at Zero today and I’m doing just great! As noted by Chris, I cannot convert T4 to T3, so logically my new doctor concluded it would make no sense to administer T4. I am totally fed up that the AMA and main stream doctors who do not open their eyes to this treatment. It’s criminal to allow people to become overweight, depressed and non-productive ONLY because of ignorance. Why isn’t it studied so all doctors understand how it works? Why? Well do the Math. Synthroid (T4) is a multi-billion dollar business. If it was exposed that Synthroid isn’t really benefiting but 15% of the people who need a thyroid supplement, and T3 was the solution, the company would lose revenue. Yes, I think it’s all about money, not the patient! The T3 evidence exists and many doctors are quietly prescribing T3 because they are the few who believe in making patients well. Unfortunately the result is that their patients DO get well and they have to constantly find new patients or go out of business! T3 simply doesn’t sustain their long term business as a doctor. You don’t want a treatment that really cures peoples ailments because if you’re a doctor, you will be a poor doctor! Cynical? You bet I am. I was fortunate to find the right doctor, but what about the other millions of people being currently mistreated for a thyroid related condition??
I am just soooo glad that you got better! 🙂
Like you, I also do not properly turn T4 into T3 and am also on a T3 only treatment for my thyroid. Unlike you, I am not instantly better of all things…and, if I don’t eat enough (over 1000 cals a day), I gain weight. That said, I agree…these doctors can be found and many are hiding in plain sight. My doctor is at a large main-stream facility, takes insurance, and gives me T3 only.
Re the other stuff, the first doctor that treated me had me on T4, even though it was generic. That said, they disclose on their website that he received $250,000 from Synthroid. Not a big conspiracy theorist myself, but was disheartened to see that…especially because at the time my T4 numbers were normal, my T3 was normal, my RT3 was over 100 pts above range and I was collapsing. His solution, raise the T4 dose. When I got to the doctor I have now, my RT3 was over 180 pts above range, she said that it was a wonder I was getting any T3.
Yes, the information is there…and yes, it should be logical that they use it. That said, most doctors are like sheep (followers) and not shepards (way showers)…and there is a process that change must go through…seems to take about 20 years for things to reach medical practice.
Anyways, so glad that you are better!!! What a relief. 🙂