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.
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. In other words, T3 levels are low because the body is attempting to conserve energy and resources to better cope with the challenges it is facing. Increasing thyroid hormone levels in this situation could conceivably have adverse effects.
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.
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. Taking T3 when you don’t need it is potentially dangerous. It can significantly upregulate the metabolic rate and lead to cardiovascular complications in some patients. 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.
Have any of you tried thyroid replacement for Low T3 Syndrome? If so, what was your experience? Please let us know in the comments section.
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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{ 241 comments… read them below or add one }
I take Armour (T4/T3) and a small dose (5mcg) Cytomel a day. I have hashi’s so not sure it it applies? I started out with a normal TSH that gradually and then drastically started to increase before being medicated. The hypo symptoms were horrible and did not start to subside until the T3 was added. I had edema, swelling, weight gain, foggyness, fatigue, cold sensations, dry skin, constipation etc and almost all are better. I eat paleo and have since identified a gluten intolerance and lactose intolerance so addressing those has been very beneficial. I still suffer from fatigue that can be extreme from time to time (most noticeable after working out too many days in a row).
I read your articles with great interest esp since you mentioned the various things that can contribute to hypo. I’m not sure that my doc is up to date on all of this and have wondered if i should not be on medication at this point. He did tell me to avoid gluten where i ended up being celiac or not (I found out i was so no brainer). What tests should i ask for to determine if this is the correct treatment. I can say that I do not exp any weird symptons while on medication. For a while while they were adjusting doses I had bad side affects – extreme thirst and urination which told me it was messing with blood sugar – tightness behind my eyes…but now its all calmed down and my heart rate is great so i’ve not been too concerned.
I’ve worried about adrenal/cortisol issues as well. I used to bike over 20 miles a day, run on the weekends, do cross-fit and suffered extreme burnout – 3 days spent in bed with horrible fatigue and weakness. This was while I was being treated for hashis. Now, I’ve scaled back to just doing yoga and walking (past 6 months). I feel better since switching it up, but would like to feel healthy enough to do a boxing class once a week and want to proceed cautiously. Should I look for a particular doc to run hormone/cortisol/thyroid tests? i live in the Chicago area if you know of any!
A wonderful doctor is Fred Schultz in Wheaton.
I have hashimoto I take 125mcg t4 and 60mcg t3 I feel great the addition of t3 has changed my life not only did I loose weight was 105kg now 78kg I am so full of energy I cycle everywhere. Also my asthma, rhinitis, and sinuses and allergies have all disappeared. I. Had this condition for 46 years until a dietitian realised it was the thyroid that happened 2 years ago. Now I have a life full or energy.
I too have Hashimoto’s (after having Grave’s, which I treated with chinese herbs for years, so I still have a thyroid). I’ve been wondering about the importance of ratios in t4/t3 dosage vs actual amounts used.
I read an article from Germany that said 5:1 made a lot of people feel good. I know Thyroid-S (like old Armour, made from pig glands) is 4.22:1. But I have been wondering if anyone’s studied or tried 3:1 or 2:1 ratios.
I saw you’re doing 125mcg/60mcg, about 2:1.
I wonder if you would mind telling what particular products you are taking (are they synthetic, compounded, natural, time/sustained-released?) and how you are taking them?
I’m allergic to synthetic T4. Even natural T4 gives me slight headaches. My dr had me on 50mcg t4 and 10 mcg t3. After I told her I was having a reaction to the T4 (Levoxyl) the same as I had on Tiroisint, she said “Oh, just stop taking the T4. And take only the 10 mc of T3 and call me in 5 months.”
So I bought myself Thyroid-S. I found I feel better with some T4, despite mild headaches. Like you, I found a lot of my allergies, sinus, etc cleared up. The Thyroid-S has a 4.22:1 ratio, with 1 grain = 38.5 mcg T4 & 9 mcg T3. However, thanks to my endo, I do have Cytomel T3 (not time released) that I could add to lower the ratio.
Thanks for sharing!
They are synthetic here in Gibraltar it is not possible to Get natural NTD. The synthetic ones that I do take are made by Goldshield they are not timed release. The t4 I take late in the evening together with selenuim. T3′ 20mcg I take at 7am and again at midday and then at 4pm.
At the moment no symptoms and full of energy, I do a lot of cycling especially on the weekends were I do very long stretches of cycling.
I do my own labs that I order online with econolabs (the cheapest) and then take the order to labcorp who complete the labs and they are sent back to econolabs and on to me via email. For cortisol, you can join canaryclub.org and order a 4 panel cortisol saliva panel at a discounted rate of $109 that is sent thru ZRT labs.
Just be sure that you follow all the instructions, or better yet, go to ZRT Labs site and watch the video for saliva collection before you start collecting.
My previous post was intended for Meg and her Nov 22, 2012 posting. Meg mentioned getting labs done at the end of her post.
Re T3; I also have Hashis and started taking T3 5 weeks ago. I am following the Wilsons Temp Syndrome protocol using a slow release compounded T3. Problem with the slow release T3 is that it is only half as strong as Cytomel/Cynomel so you are left taking higher doses twice daily at 12 hour intervals. I have been told that doing this is not necessarily healthy for your adrenals.
Since I have high RT3 levels I intend to switch over to daily multi dosing as soon as the Cynomel I ordered arrives. Yahoo group RT3-T3 has been a wonderful resource and I can highly recommend joining the group if you have questions you need answered regarding T3. The moderators of this group are kind, helpful and very knowledgable on this subject.
I should add that my doc put me on cytomel after running tests and noting that i did not appear to be converting T4 to T3 and had a high Reverse T3 level as a result
First time to comment but would love some input as I am currently taking T3 for Wilson’s Syndrome. I have been dosing up and up and have been experiencing water retention but the Doctor does not think it is related to the T3. Have never had this water retention issue before and am still trying to get the dose right on the T3. Have not noticed that I am feeling better with it so far but I am hopeful. Would love to hear from others of their experiences.
Hi Valerie, I too have experienced chronic fluid retention for years and have also been taking thyroid meds for as long. Doctors always told me it was coincidental and could not be related but since stumbling across other suffers it appears I’m not alone with this plight!! Have you received any guidance as to how we can remedy this issue? I live in Australia and still search to this day for some answers
I also suffer from chronic fluid retention. I never know what my body will be like from one day to the next. This is my last symptom that needs addressing and I have researched endlessly. I believe that it is called myxedema and it is common with hypothyroidism.
I hope that once I am through with clearing the RT3 that is clogging the receptors in my cells (this apparently takes about 12 weeks) and then the T3 starts doing it job that the fluid will disappear as quickly as it appeared 18 months ago.
Valerie,
I have read in “The Complete Idiot’s Guide to Thyroid Disease” (written by a well known doctor in Scottsdale, AZ) that one of Wilson’s own patients died of heart failure after taking large amounts of thyroid hormones. In 1992, the Florida Board of Medicine suspended his license to practice. Be careful.
The only symptoms I had was pain, in my hip/groin and shoulders back of neck and to a lesser extent in my whole body. My GP gave me a series of blood tests and the only one of any note was a low thyroid level. About a year and a half ago I started on 50 micrograms of Eltroxin ( Levothyroxine sodium) and gradually the pain eased and has gone completely now.
For what it’s worth, low thyroid only very rarely causes pain…and generally in the form of muscles tightening up. Your symptoms sound very much like Lyme disease…which will cause you to make more RT3 and if untreated long enough will also result in low T3 levels. Lyme tends to suppress your immune system….and is known for attacking joints, particularly the larger joints. Unfortunately, the standard screening tests are all but useless for late stages of Lyme due to it supressing the immune system (the tests test for immune response to Lyme) and a negative value is valueless which comes from the creators of the test and not internet opinion…unfortunately, we (and I suspect doctors) see a negative value and think it means we don’t have it. The test one needs for later stages is unfortunately a cash pay test (there are some organizations that can help with that) run by a private company names Igenex…it is a much more sensitive test and will show if you have any antibodies to Lyme (if you haven’t had a vaccine you shouldn’t have any…and even if you have had a vaccine, the Igenex test tests for the other strains as well). Because of Lyme’s ability to significantly lower the body’s immune system the test makers and doctors recognize this and diagnosis is based on clinical symptoms rather than on the test alone. There are many things I did not know about Lyme that I wished I had…like most never see the tick (baby ticks are as small as a tiny grain of sand), most never have a rash, most never have a fever or flu-like symptoms…later stages of Lyme has symptoms that are similar to Lupus and MS as well as causing many heart condtions. Anyone with unexplained pain, especially in the larger joints, should consider Lyme.
wow, your article could not be more relative to my current situation. I’ll try and keep short: I’ve been suffering from an undiagnosed chronic illness for nearly 4 years now and previously was a vibrant early thirties male, avid surfer, yogi, Qi gong practicing, whole foods eating, entrepreneur, very productive individual. Over the course of 4 years, I became: Osteopenic(several passive fractures), extreme fatigue, brain fogged, hypogonadal symptoms, joint/bone pain, muscle weakness, non-restorative sleep/insomnia, nocturia, chronic infections, bradycardic, Hypothyroid symptoms, bowel variability, lost 18lbs of muscle, on, and on… I nearly had heart surgery(to possibly fix electricity of heart or pace me), but turned it down in my constant search to find the “source” of what was causing my entire sympathetic/parasympathetic systems to go haywire. I’ve been given the diagnoses of: Adrenal fatigue, CFS(Mayo clinic), hypothalamus pituitary axis dysfunction, Osteopenia, Hypoparathyroidism, hypothyroidism, possible celiac, possible Hemochromatosis(I’m heterozygous, but last iron saturation was 93%, been to 8 docs and still no official hemochromatosis, but ready to start blood draws with red cross). Over the course of 3+ years almost nothing I’ve tried has provided any relief, until I was put on thyroid meds about 1.5 years ago. I had a “honeymoon” period on my first trial with low dosage of levoxly .then it kinda wore off, then switched to armour…similar experience, then put on naturthroid +tirosint, had some positive effects and took my pain levels down and gave me more energy, but still wasn’t even close to old me(maybe 25%). Over this period my Osteopenia got worse(repeated DEXA) and fractured my 5th metacarpal and now pisiform in wrist(both stress). btw, during the last year I have been on a serious green smoothie regimen and have been dosing on Vitamin D(pure) 10,000 iu and essentially getting as much Sun as a person can get(was basically living a lifestyle that my bones should have been super strong even before i got ill, just upped my usual regimen). I also eat close to a Paleo diet with the gReen smoothie added in as my post breakfast pre dinner meal. So, there is a ton more, but let’s get to the T3 portion… I recently went on a compounded T3 regimen(wilson’s protocol) given to me by my Naturopath and I have not felt this good in 4 years, still not back to my old self, but as close as I’ve been. I did 3 cycles, starting at 7.5 2 times a day and ramping up to 37.5 and then back down, then a day or two off, then 7.5-30ug and back down, then a few days of, then 7.5-22.5 and back down(monitoring basal temps the whole time, 4 x a day). I never felt awful on the regimen, but did get warm overnight a few times, but no heart issues or other side effects. I was also on a compounded DHEA cream of 100mg during this protocol(but I was on this previous to starting T3). Overall, my pains were nearly gone, I began putting on muscle, I had energy to exercise and was not washed out after, my brain turned back on(amazing!), and I smiled a whole lot more:)
My naturopath and I decided to take me off the protocol to see how I do(maybe thyroid has recovered along with adrenals, etc…)…well, I’m about a week into being off and I’m starting to feel the “sick” me coming back…so, for myself, T3 has been the best and perhaps only palliative treatment I’ve found for my “illness”. I still don’t think we have found the source of my problems, but if T3 gives me my brain and energy back, i will then be able to continue my pursuit to find the answer. I am actually planning to visit your practice in the coming months, but want to prepare a thorough “digital” file that is concise and will allow you to look at my case and hopefully help. I have really enjoyed your podcast and have forwarded your articles along to my “healing” community. My ultimate goal is to take what I’ve learned while getting my “doctorate” in chronic undiagnosed illness(from the standpoint of 30 something surfer dude that was incredibly fit, and vibrant before all of this) and pass along to others the many different modalities/treatments which I have used to recover(from green smoothies-rebounding-qi gong-T3 etc..). Thanks for the service you provide, believe me, I’ve been to so many doctors and your insight combined with your ethos, are very rare commodities in the healthcare world. Keep it Chris! Sorry for the long winded comment, but hard to keep it short and sweet. If you have any questions or want to contact me feel free. I actually just called my naturopath to inform him that I think I need to go back on T3, so perhaps I can update you on results. one ? do you think I could be exacerbating my bone loss through thyroid treatment? Top Endo at OHSU, said he thinks that is an issue, but I was never on any thyroid meds when I got my first DEXA saying Osteopenia…so I respectfully disagreed/fired him;) thanks again!
Matthaios (and Chris)
Your description sounds really similar to my experience with chronic illness over the past few years. I too was an athlete (ultimate, cycling, etc). I got sick after my daughter was born and have never been right since.(fatigue, weakness, joint pain, dizziness…) I have low TSH and low T3, and a variety of absorption issues with nutrients. I have been doing a vegetable cleanse and then paleo, but if you have any more information about groups or your routines for getting well (exercise, what is in your ‘green’ smoothie, etc) I would really appreciate it.
Can my body ‘reset’ itself if I am religious about my routine? (like Mr. Juice Fast in the movie Fat, Sick, and Nearly Dead?)
Hi Danielle. It’s common for thyroid issues to occur after giving birth. Mine occurred the spring after having my son. They took my thyroid out. I’m pretty sure I could have gotten well without them removing it.
Fasting, of any kind is hard on your thyroid and adrenals. You really should get some comprehensive testing to find out exactly what’s wrong. Have you had antibodies tested to see if you have Hashimotos or Graves? They are both auto immune and would go hand in hand with having issues absorbing nutrients or having other auto immune issues (insulin resistance, Celiac, etc.).
Thyroid doesn’t respond well to aerobic exercise and adrenals don’t like weight training. So, before you start an exercise routine, make sure you know the health of both of them. Walking is good.
There are some good thyroid groups on Facebook: Stop the thyroid maddness is a good one and has several offshoot groups that deal with T3 only protocol and Hashimotos disease. Sometimes, I feel, they can be a bit radical. But, there is some good education there. Just remember everything in moderation and don’t change too much at one time so that you can figure out what is helping or hurting.
Get tested for LYME only with a Lyme Dr.
To answer your question about Lyme and treating thyroid, my thoughts and concerns are this…the body is esquisitely self-regulating so whenever people take any endocrine hormones…the associated gland will produce less accordingly. While man tries his best to reproduce nature, he never quite gets it right…and cow and pig thyroids are not human thyroid no matter how much people might try to sell us on them. So, essentially what people are doing is removing nature and adding something artificial and not quite right.
That said, it would depend on you and your symptoms and how well you are able to manage the symptoms…the choice to supplement thyroid or any endocrine hormone is a deeply personal one. I believe it is a lot like the author suggests, that the body down-regulates in chronic illness via the thyroid…and that as long as you have a thyroid it will do that even if you are taking a supplement. As someone without a thyroid, I can say that I have had endless problems taking thyroid hormone due to Lyme Disease…can can verify that much of what non-drs put out in the internet about thyroid conversion is (especially in their wanting to tie it in with adrenals) is false. My and my dr’s hope is that by treating the Lyme my thyroid issues should resolve.
Matthaios,
Do you live in the Portland area? If so, what naturopath do you go to?
Thank you greatly!
Lily
by any chance are you a vegan ?
I can relate 100% to what you are going through Matt. Please update us, how are you doing today? Better? Anything good to report? Did you ever have trouble taking T3 medication? I have had trouble with it. Thanks.
Matt – how are you doing now? I am curious – have you ever had problems taking T3 in the past? I had some issues with it – still not sure why.
Chris, very good article. I have a question though. In this study you referenced “The effect of T3 and reverse T3 administration on muscle protein catabolism during fasting as measured by 3-methylhistidine excretion” they say that the dose of T3 was ” pathophysiologic”. I infer this means they were aiming for hyperthyroidism. Given that, do you still think your conclusions are as valid? I wonder what would have happened with a physiologic dose.
There are other studies that used physiologic doses and either found no effect or a worsening of symptoms. But, the research overall in this area is sparse.
Chris, I’ve heard bodybuilders often use T3 to get ripped. It apparently increases their use of fat but keeps the muscle. It’s mostly anecdotic, but it would suggest thyroid has a net beneficial or neutral effect on muscle. I would love to see those studies (the ones with a physiologic dose), since I know things tend to be much more complicated.
I’m currently taking 100mcg T3 (Cynomel) and have been since mid-June of 2011. I’ve had adrenal issues along with it and had trouble getting those supported. My starting average daily temps were 96.8 (I didn’t transpose that). They are now 98.6 and I’m feeling very well. I still have some symptoms that haven’t subsided, but I’m on my way to much better healthy. My pulse is up to 65-72 from around 55. My blood pressure is up to 115/65 from 90/55. I’ve taken off 10 pounds without trying (I’m not fat, but could loose another 8 pounds or so). I’m not on adrenal support, so I do have to be careful not to overdo too much. I have stopped weight training, but still do aerobics daily (it’s winter now, so I’m not hiking, but normally I would hike for aerobic work).
I have no thyroid and before starting this therapy my FT3 was 2.4 (bottom of the range) and my RT3 was 460 (top of range being 350). I haven’t tested RT3 because there is no need at this point, but my Ft3 is 4.4 now (slightly above range). FT4 is .2 (way below range) and TSH is .01 (very suppressed).
Do you only take T3? I don’t have a thyroid gland either. Every time I even try small amounts of T3 I get hyper like symptoms even though my labs are are very low. I take Armour but still can’t get my T3 and T4 in the normal range. I am also following Dr. Wilson’s Adrenal Fatigue protocol. Any advice?
I was back then only taking T3. I have since moved back to a combination of T4/T3. If you don’t have iron serum over 100, you may have these sort of reactions to T3. But, also, some people just don’t do well on only T3. I think T3 only is very hard on the adrenals and liver. I’m still working out a combination that will work for me. It’s slow going and I’m due to test in another 2 weeks. Last time I tested, my FT3 was a bit high and my FT4 was low. I’ve lowered T3 and raised T4. I wouldn’t normally go by test results, but I have been feeling hypo and I think the test results at least help me determine if I’m converting and also letting me know why not (ie., taking too much thyroid hormone would cause me to convert to too much RT3).
Karen
I do not have a thyroid and I only take T3. Because I had so many complications processing thyroid hormone replacements (including Tirosint which is a T4 with no fillers), I did some indepth research and found that the adrenals are NOT linked to thyroid conversion…and the online thyroid community as well as Dr. Wilson (if he suggests that they are) are wrong. The liver is the main culprit in thyroid hormone conversion and it has NOTHING whatsoever to do with cortisol or adrenaline. However, that said, MANY people who think they do, do not have actual thyroid or adrenal issues, but a pituitary (or hypothalmus) issue…either of which can affect both the thyroid and adrenals. In that case, treating both the thyroid and adrenals while helping how you feel does NOTHING to help the real issue which is either the pituitary or hypothalmus. Furthermore, dosing adrenals and thyroid when one has healthy organs will cause those organs to slow down or even stop production as the body is esquisitely self-regulating. The guy writing this article has a point. With no thyroid, I do not convert enough T3 and if on a T4 of any kind (including Nature Thyroid) make way too much RT3 and become very symptomatic. One of the main causes of too much RT3 is that you have some other chronic illness…correct that illness and your RT3 levels will improve. Too much RT3, unless you are anorexic or not eating enough, should always (imho) signal one to look for some underlying illness. Can you live on just T3 alone? Yes, I do. Can I tell a difference when I take T4? Yes, my hair and nails grow faster. So the T4 must be doing or adding something. Beyond that, I don’t care to get into theory debates with medical professionals who don’t have any real life experience with it. One of the issues doctors have been raising is that if you take T3 (I take twelve 5 mg pills a day) that your blood levels rise and fall multiple times a day…this is 100% untrue. I have had blood draws after 24 hours of not taking it as well as within a few hours of taking it and my blood levels tend to stay relatively the same. Furthermore, regardless of blood levels…cells are not going to accept any more T3 into themselves than they are prepared to accept. For the people who think they can “force” metabolism with thyroid, esp T3, this is untrue…except maybe in some people who are prone to high or fast metabolisms in the first place. There are NO tests for our cell’s usage of thyroid hormone…only for how much hormone is available. Unneeded hormone is quickly bound up on protiens (total T3 verses free T3) in order to preserve it longer…which it does. The danger in taking T3 only is that you HAVE to remember it daily…if you get in a car accident or something and are unconscious and they do not know you do not have a thyroid you could be SOL after 24 hours…but that said, there is a safe 24 hour period…unlike what some doctors think. Also, as to excess hormone in your blood…well, guess what…your liver flushes that out as it is in charge of keeping hormones in balance in your blood stream. Back to the article’s point…the body does seem to down-regulate itself when facing illness…and it can be a quiet, low-grade, illness that you are unaware of having…such as some cancers or odd things like a developing auto-immune condition or something like Lyme which can suppress your immune system. All of this will be a load on your body’s immune system…and no matter how quiet or weak our body’s ability to respond…just like when we are sick with a flu, the body wants you to lay down and let it get to work…and does so by altering your metabolism…esp by creating increasing levels of RT3. The problem is, we want so much to “feel” better or “feel” good…that we seek ways to over-ride the body’s own regulation telling us what it needs. Lastly, if your T4 is not in range then you are not taking enough hormone…and/or are not absorbing it into your blood stream. Your particular situation sounds like you have another underlying illness whether dx’d yet or not…and that your body is very much not-wanting more thyroid. What do your TSH levels look like? TSH is the body’s request for more hormone…which in your case might be a better indicator of your need. If the TSH is wonky, you may want to look into your pituitary gland and your hypothalmus. But you will not force your thyroid issues by forcing adrenals…they just are not related that way. Also, Armor is notoriously bad for a number of reasons…the least of which is that it does not have consistent levels of thyroid in it…and they change the fillers constantly, often using fillers that actually prevent absorption. But, perhaps the largest issue with Armor and Nature Thyroids and the like, is that they come from commercial cows and (worse) pigs. Commercial animals must be slaughtered before age two in order to prevent mad cow disease…but, are fed so many endocrine hormones (to grow them bigger faster cheaper), as well as GMO corns, that the endocrine hormones kill them before age two…so they are routinely slaughtered at 1.5 years of age to prevent endo-death. What you are getting is dehydrated thyroid that is saturated with enough endocrine hormones to kill the animal…and on no level can I imagine that that is good for us. Also, pig and cow thyroid are perhaps good for pigs and cows, we are neither a pig or a cow. Imho, I do not believe that Armor or Nature Thyroid are near as “natural” as people think they are. They also do not contain enough T3 to get your levels normal, nor do they contain T2 or T1 as some internet sites suggest. Also…while the thyroid produces hormones…it releases them into the blood…they don’t store them…dehydrating a thyroid is a slice of the manufacturing plant and not the product, or very little of the product…only what happens to be in the manufaturing plant at the time of death…which could, due to the animal’s stress, be arguably very little.
Just curious Faith. Do you take your T3 all in the morning at once or dose it throughout the day according to a schedule? Also do you notice any absorption based differences taking with or without food?
Hi David, I take my T3 throughout the day…10 mg 8xday to be exact. I do not generally take with food, but have not noticed a difference…what I have noticed, however, is some days I need more and other days I need less. I also have Lyme Disease, so not sure if inflammation or immune changes have anything to do with these fluctuations…but on days I need less I can tell because I get heart palps and feel sleepy soon after taking it. On days I need more I tend to be weepy…take a dose and no longer weepy…strangest thing. My pills are in 5mg size so on days I need less I will just take 1 pill instead of two. This would probably make most doctors cringe, but I feel pretty stable on the T3 only.
Thanks Faith.
I have an autoimmune disease that I am finally having some success in treating (knock on wood). But over the years my rev T3 went to earth shattering numbers which makes sense in hindsight. I still do much better on T3 only which of course means I have not won the war with my autoimmune disease. That being said I take 75 mcg of Cytomel a day but I do it all in the morning (one dose right when I wake up no food) and the other with food 1-1..5 hours later. I do this split since I am slowly trying to migrate to a no food only situation as I have noticed some difference with absorption / effect. In the past I had problems with moving a 2nd dose too late in the day but I am rethinking now what my dosing schedule should be. The irony is my morning fasting T3 levels are not very good (free and total) but during the day there is a distinct clinical effect of the Cytomel. So I suspect I am riding a bit of a wave even though the biological effects of a T3 dose have longer term effects. The other option is the deiodinase III enzyme is still in overdrive and as opposed to converting T4 to rev T3 is now converting T3 to T2 to quickly. But your information is useful since maybe I would be better off spreading things out. Thanks.
Hi David,
You know, I have heard a lot of hypothosis’s regarding T2…but nothing that pans out (however, on a similar subject, I was just reading some fascinating studies on the Vit D Receptor which is another endocrine hormone that can cause the tyroid receptors to shut down creating thyroid resistance). The thyroid receptors take T3. T3 is hard to manage, which I suspect is why many drs will not rx it. The sad part to this puzzle is that doctors really just do not have many answers on this. There is a slow release T3, but I have never tried it. That said, I generally do not take my T3 for 12-24 hrs before blood tests and my levels are good…so, despite medical hypothesis’s, it clearly hangs out for a while. You might be having thyroid receptor resistance…as well, some ther underlying chronic illness will really mess things up. While no dr has ever mentioned this that I know…I believe that the liver will sweep the blood of excess T3 soon after you absorb it so that levels will never be too high, but then as you use the T3 through the day, levels would sink. It is hard to say.
Thanks Faith that is first I heard about the vitamin D receptor and thyroid resistance. Still regardless of thyroid resistance the only way for both the free AND total T3 too be lower than expected on a strong dose of Cytomel is if it is getting broken down. Maybe you are right and there are other reduction pathways in the liver (though I have not seen anything about them) but deiodinase III still seems like it has to be part of the problem. Then again maybe I just need to split my dosing better. Thanks for the ideas.
Faith,
There is a good reason for T3 “hanging ou”t in the body 24 hours after you take it. It has a half life of 24 hours. That means, for every dose you take, 24 hours later, 1/2 of it is still in your system. It takes 8 half lives to completely clear one dose of any medication. So, with T3, if you take 25mcg, 24 hours later there are still 12.5 mcg in the system (just from THAT one dose), 12 hours after that, 6.25mcg still left, 6 hours after that, 3.125mcg still left, etc. Add on top of that the multiple doses and that leaves quite a bit left on the next morning after you’ve abstained for 12-24 hours.
Hi David,
One thing that makes understanding what is happening inside our bodies a difficult affair is because people tend to override science with logic…and as long as something sounds reasonable, then assume it must be true. To determine the exact reason why you have low T3 when taking T3 is to follow the pathway…you take the med, it goes into your intestines and then has to be absorbed…so one possibility is that you are just not absorbing very much. While I do not know the specifics, it is possible that thyroid needs to be carried into the system on a protien or other such thing (many things we absorb this is the case)…you may not have enough of that carrier, so that is another possibility. Still another possibility is that you are just not taking enough…but I am assuming here that you have tried increasing your dose (if you haven’t, you may want to give that a try). I had been on what me and my dr thought was a high dose, but having been bedridden for 6 months in massive amounts of pain that I assumed were due to Lyme…someone suggested upping my dose until (my symptom) of too much (heart palps)…I ended up doubling my dose and wah-lah, pain back to bearable levels and I was no longer sleeping 22 hours a day. So it is hard to say about dosage. Still, another possibility is that your body has set your levels at a low level (this does not necessarily mean you would feel good at those levels, just that this is what your body has set). Then consider what happens once it hits your blood stream…say your single dose is too high (not for the day, but for that first hour)…you liver is then going to quickly sweep out the excess in an attempt to keep your levels where the body wants them…so you have the right levels of thyroid. Only then what happens is that throughout the day you use the T3 and the levels become lower because your are not replenishing them. And, having been to a number of drs including the Mayo Clinic, I have yet to find anywhere that tests T2 or T1 and am no longer all that convinced that they have anything to do with anything. T3 is the active hormone that docks in the receptors. Additional areas of possible contributors to the issue is that various foods interfer with thyroid function…and I know that many will say that if you don’t have a thyroid they are ok to eat…but this has not proven to be the case with me and any soy or the other foods will decrease my ability to make use of the thyroid hormone. One other possible issue, and again I am not going to have very good details, is genetic mutations…while unrelated, things like the MTHFR gene interupts one’s ability to process folate. I have heard of other genes that do not allow one to get rid of toxins very well and instead to recirulate them. It is also possible, although again I have not found any place that has testing available to them…but one can make an antibody to the T3 and essentially attack it as a foreign invader. There were a couple of good (what look like) thesis papers on the internet concering liver and thyroid conversion. In one, they mention for example estrogen…when a certain enzyme is present in the GI tract, we will re-process excreted estrogen back into the system…is possible the enzymes in the gut play a role in whether we absorb what we are taking…but, I’d start with absorption.
@Faith, @Karen:
I am sure absorption is a factor but I have been taking more and more of my dose on an empty stomach one hour before food. The rest of the 75 mcg dose I take with food (40/35 split). Unlike T4 or armour or other thyroid meds, Cytomel is ONLY absorbed in the stomach. I have also been careful to not take near any calcium or iron though in fact the Pfizer white papers on Cytomel clearly state that does not matter for T3. I do feel better now that I am adjusting more of my dose to first thing in the morning with no food. So there is indeed something going on with absorption.
As far as T2 and T1 goes. I am not suggesting that they are beneficial. I am simply saying they are the metabolites of T3. If I am taking a large enough dose that I should have total T3 and free T3 numbers the next morning are reasonable but I am NOT then yes either (a) I am not absorbing it, (b) I am not taking enough, or (c) it is breaking down.
It is my understanding that the chief mechanism for metabolism in the periphery is in fact deiodinase III. Deiodianase I may be involved in the liver, but deiodinase III is the primary mechanism for breaking down T3. Just like it is the primary mechanism for making reverse T3 from T4. While I can’t dispute the possibility of thyroid resistance, it does not explain low total and free T3 are low (i.e. I am taking 75 mcg a day but have 10% percentile total T3 and free T3 is 2.5 – 2.7). On the other hand when I adjust more T3 to be taken without food, I do feel better. So I am not so resistant that I don’t receive benefit.
Like Karen said it was my understanding that the biological half-life is quite long. Actually 2.5 days according to the Pfizer white paper I mentioned. 95% of the T3 is absorbed in 4 hours (pretty sure they mean absorbed into the cells to be honest).
Right now I am trying to figure out the best balance point for me. In my case a nasty autoimmune disease basically shut down my adrenals and sent my rev T3 to unbearable numbers. T4 and armour therapies only made things worse. I have been on T3 only now for about eighteen months and certainly benefited. But after one doctor suggested altering how much I take with food, things have improved in terms of how I feel … yet my fasting morning labs have not improved very much for T3. There is enough significant room for improvement on the labs that I am eager to figure out the balance since it may help me feel even better.
It is possible the supra-physiological doses of glucocorticoids I take are exacerbating the deiodinase III activity just like cortisol release does under stress. But then again it may just come down to amounts and spreading out the doses. The only problem is when working with thyroid meds any changes have to generally be done slowly, right?
Thank you both for the stimulating discussion. It has been thought provoking
Btw Faith do you have any links that discuss the vitamin D receptor connection you mentioned in a prior post?
Hi David,
Again, people come up with a lot of logical sounding ideas about what is going on inside the body, but as good as they sound they are rarely backed up with science. (ie…Lyme is hard to kill and needs long term abx because abx do not get into the deep tissues where Lyme goes. Sounds reasonable enough…until you take something like Cipro or Clindamyacin that is famous for getting into tissues, tendons, and even bones). So again, T3 by itself may have a half life…the liver will still sweep the excess out because the body doesn’t like too high amounts. Your issue is likely due to you taking it all in the morning. Unless you are taking the slow release. You take, the body absorbs, the liver clears excess…then you use it all day long…now you dont have enough. There is not really anything else I can say to that…I take mine 8x a day and doing great. I can feel when I need more/less…and if I have inadvertantly forgotten I can feel it…and this could only be because it gets low throughout the day. That said, I don’t know anyone except you who takes their T3 all in the morning. I take 80 mg/mcg(?)…and some days I take 100. The Vit D Recetor study (posted with the caveat that I do NOT agree with the treatments or protocols that have been come up with to address this as they make people very sick) is here: http://autoimmunityresearch.org/preprints/WaterhouseAnnals2009Preprint.pdf
Fair enough. I don’t dispute that T3 has a half-life. And you may be right that there is another mechanism besides deiodinase metabolism to explain its breakdown. I guess all I am saying is that thyroid resistance or even the Marshall protocol (which I also don’t think is a good idea) based on VDR dysfunction, would explain comparitvely LOW values of free T3 for a significant dose. So I have to think more about it being excreted, not absorbed or broken down. I think you may be onto something with the multi-dosing and I will bring that up with my doctors. I know both of them want me to try multi-dosing but in the past it caused sleep problems. Maybe I will be more tolerant now or I can simply lower the total dose if I split it up. I still think there is some connection to why my reverse T3 values were so absolutely absurd on Armour. Oh well.
P.S. Thanks for the paper. I scanned it quickly and will read more later. Frankly the Marshall protocol scares the *bleep* out of me. I do have some issues maintaining a proper vitamin D balance between the active and inactive forms but that could also be due to my high intake of magnesium (the mechanism to activate vitamin D). But again the Marshall theory would predict blockage at the nuclear hormone receptor sites by vitamin D metabolites and thus result in higher T3 / T4 levels. In my case I have almost no T4 being made and TSH is really low. So the T3 numbers tell me pretty much what is happening other than of course how I feel. Hence the conundrum and I think the Marshall theory is in direct contradiction with this.
Hi David,
Then you and I are in agreement about Marshall…no I don’t recommend him at all. He, however, did not do the study…Waterhouse did. That said, I like the science…not necessarily other people’s conclusions about the science. The probably cause to my not converting enough T3 and too high RT3 is that I have a chronic illness…the current thought is that it is Lyme Disease. My interest in the science is that Lyme is now being linked to an autoimmune, hence why treatment often makes people very worse. I also have low D…and taking it makes me worse. When I happened across the study, a dr very much like Chris here, was retracting his reccomend that Lyme patients take D…it had my attention. The reverse D issue (low 25-D and high 1,25-D) had my attention…it struck me how just like the tendency for thyroid drs to only test T4 (comparable to 25-D)…one could be low T4 and still high T3. Also, the fact that D is a endo hormone and a steroid and as such an immune supressor. It seems like almost everyone with Lyme chugs vit D…and it has me wondering whether by taking D they are causing/contributing to Lyme being chronic. Unlike Marshall, I don’t care to fix the D issue because it seemed obvious enough to me that when you correct the bacterial infection you will stop making the chemical that causes you to over convert it and the issue will resolve on its own. In any event, it would seem…if one had the reverse D issue…that taking D would shut down T3 receptors and cause resistance…that said, it wouldn’t (I don’t believe) make your blood levels low. I don’t know what to say about the sleep issue…I used to take my T4 at night because I’d feel terrible after taking it. Wish I had a better answer for you.
My neuroendocrinologist explained it to me as follows with the 1,25 calcitriol and 25 OH ratio imbalance: basically chronic inflammation causes the body’s macrophages to go into attack mode. The inactive form of vitamin D acts as a regulatory suppressor(?) of macrophages while the 1,25 form is essential to activating the macrophages. So if the innate immune system wants to pick a fight it will want more 1,25 and less 25 OH, hence the imbalance.
In an analogy, cortisol suppresses the immune system. If someone has a chronic infection or an autoimmune disease the immune system wants to be able to do its “job” full steam ahead. Hence the immune system actually can command override the adrenal output of cortisol in a chronic condition, and this is why it is not uncommon for people suffering from such conditions to have low output of adrenal hormones (not just cortisol as the whole adrenal gets down regulated). The immune system is not “intelligent” enough to know that the condition is chronic and that it needs to stand down to let the patient have a chance to get help (exogenous) to fight the original problem.
In my case I have a rather nasty autoimmune disease that can only be controlled with exogenous hormonal support. Even then … well you get the idea. However, it was because of this particular autoimmune disease that my RT3 was almost 500 points above the top of the normal range when I was on Armour or other T4 medications. My doctor said the only other person they say with a higher value was someone who was riddled with severe Lyme’s and multiple co-infections with serious neurological damage.
Hi David,
You have to go over the study, they explain in great detail the role of D…and in some autoimmunes it is very helpful. Had to chuckle at what your dr said, sounds like he/she could have been describing me…late stage neuro-Lyme and very sick with it. Sadly, there really is no good treatment for Lyme…antibiotics and immune stimulators…but that tends to make the majority of us worse. They are now linking Lyme to autoimmune…but at the same time, immune supressors make people with Lyme worse…so people with late stage or diseminated Lyme are sort of just left to suffer while politics play out. How I got to the D study was a Lyme dr…a blogger, LymeMD…found his blog looking for something else, and saw he retracted his recommend that people with Lyme take D…he cited the D Reversal Patttern which had my attention since I am low 25-D yet feel worse when I take D. Anyways, again, I am opposed to Marshall’s conclusions and ideas…I think the sum total of the gem of knowledge from the studies is the science itself. Interestingly, in Lyme Disease, I am coming to find that a number of things one is low in probably is that way on purpose and probably shouldn’t be supplemented (like magnesium as part of biofilms, and iron and B12), although no good studies on those yet. It would seem, very much like Chris’s article here…the body makes some changes in response to illness and it would appear that it does so to save us…and, I have come to believe that he had a point in maybe we should leave well enough alone. Unfortunately, I don’t have many answers…just more questions. Anyways, here is another study…by the MS community…apparently the Vit D Recetor is the thyroid receptor…which had me a bit gob stopped and wondering, are we making selves hypo thyroid by taking D while sick with bacterial infections??? As I say, just more questions. http://www.mendeley.com/catalog/vitamin-d-neuro-immunomodulator-implications-neurodegenerative-autoimmune-diseases/#
Thank you for the paper. I see a connection there already with the as anti glutamic acid decarboxylase antibodies are associated with diabetes mellitus type 1. My rare autoimmune disease is the progression of those antibodies in the periphery to crossing the BBB and attacking GAD antibodies in the brain, primarily in the basal ganglia, mid / internal cerebellum and brain stem (joy!).
I concur that the body goes into an aberrant pattern to try to fight something or survive. And the real enemy is the prime cause. Some times the condition is not treatable and the best one can do is placate or ameliorate side effects. But I would contend that even when the primary problem is neutralized or improved, the body can still stay stuck in aberrant patterns until something is done to “shock” it or coax back on the wrong path. I have some success at managing my autoimmune disease through many sacrifices and high prices paid by certain medications. My personal focus is now to repair enough of the collateral damage that I can live in some sort of balance (as tenuous as that may be).
I think for me the positive signs are that whereas in the past things like T3, calcium, B-vitamins, D-ribose, etc. did little for me suddenly in the last few months they are doing much more, i.e. there has been an equilbrium shift that has been wonderful (first time in 12 years. So now I am trying to balance and fine tune things as much as possible to keep recovery going. For me now is the time to strike
Faith said: “Can I tell a difference when I take T4? Yes, my hair and nails grow faster. So the T4 must be doing or adding something.”
I’m just now in the process of trying to figure out my issues with rT3. I’ve been hypo for years and my TSH was a bit high so a little higher dose of T4 was added. Just got my test results back with elevated rT3, (first time it’s ever been tested) but I just commented to my husband last night that the T4 must be doing ‘something’ because my hair and nails are growing! Your experience is helpful for helping me figure out which way I should go with this, thanks.
Conversion to RT3 can have many reasons…but one of the main reasons is a chronic underlying illness…which can make sense in the scheme of trying to answer why one’s thyroid went bad in the first place. During illness, the body likely uses the thyroid to down you on the couch so it can divert energy to heal…normally, we don’t think anything of this…until one has some low grade chronic issue making them tired and sluggy. At which point maybe the only numbers that seem off are the thyroid being somewhat low. Unfortunately, drs do not try to get to the bottom of why that is or treat the root cause…instead they just treat the numbers, and low means giving hormone. But here is the problem with that, and the dangerous game we unwittingly get into with our drs, is that IF we are ill…and IF our endo system has decided it wants those numbers low…taking excess hormone causes the gland to make less…and we go back to the dr, our numbers are still low so they give us more…and so on until the gland stops producing and atrophies and we are on hormone for life. (Integrative doctors do try to get to the bottom of things). That said, and esp for women, it can be a long hard journey to try to find out what’s wrong (if some low grade chronic illness)…but, on the good note, treating the illness often resolves the thyroid issues. For me it happened to be Lyme Disease…3+ years of progressively worsening symptoms before a diagnosis and I am coming to find that the common thread beneath many of the chronic conditions people have these days are either bacterial, viral, fungal, parasite, or toxins that we have developed antibodies against…most of which have created conditions for people that are told that there are no cures…only symptom management…it is very sad. But my first marker was the RT3…then low grade inflammation…and that was all my dr and I had to go on. All I can say, is keep searching what could be behind it because it is a symptom of something.
I have been on t3 only since the spring. I also went on hydrocortisone at the same time to support my adrenals. I also have chronic Lyme disease. It took a long time to feel better on this proticol but I have read that is normal. I started t3 only because of a reverse t3 ratio problem. I was taking 125 mg of cytomel a day for a while and now am on 75. I was on 35 mg of hydrocortisone a day and now am on 15. Until a month ago I was feeling very good but then I went on vacation for 2 weeks and haven’t been able to get back to where I was before vacation. I really don’t know if this is a Lyme thing, a T3 thing or what. I can tell that my adrenals are much improved over the past 6 months. I’m also following the GAPS diet for the past 2 years. I’m not sure if this helps any or not. After all it is all anecdotal but I don’t feel any worse on this than I felt on naturethroid and in fact feel a bit better. I have been on thyroid medication for many years.
My daughter is on naturethroid as well. She started when she was 5 and is now 7. We tested her because of my thyroid issues and also because I had read that often AD/HD symptoms are undiagnosed hypothyroidism. In her test results only her ft3 was out of range low. FT4 and TSH were in range but her Dr put her on meds because of the low T3. We started her on adrenal support (isocort) in the spring after testing and she was doing so well that we tried to wean her off of her thyroid meds thinking it might be a adrenal issue and not a thyroid issue. Her anxiety went through the roof when we reduced her from 1 grain to 1/2 grain. Thankfully putting her back up to 1 grain fixed that. She also is now weaning off of her adrenal meds and doing quite well. We are about to run tests to see where her thyroid is now. She also has chronic Lyme disease fwiw.
You and I are in similar boats, I also have Lyme…late stage. The RT3, I believe is an effort of the body to slow us down in order to more effectively launch an immune response…in other words, secondary to the Lyme. I too was given hydrocortisone, although do not take it daily…only when my muscles tighten up. The issue with hydrocortisone is that it also lowers the immune response which is needed in fighting Lyme. Sorry to hear that you and your daughter have Lyme, I also believe that my children have it as they all show similar weird symptoms as mine (we are waiting on tests). Lyme is a horrible infection…and I wish the world knew that a negative on a standard Lyme screen is valueless…in other words, it does not mean you don’t have Lyme…in fact it doesn’t mean anything at all. I think late stage Lyme is a very possible cause behind anyone with RT3 issues. The best screening test I know of is a cash pay test by Igenex.
I am have Chronic Lyme and also taking LDN as I have heard wonders of it helping Lyme and Thyroid. I am taking Armour, but feel awful. Did you feel awful when starting? I have GI issues and low energy. My body temp went up a degree which is great. I am not sure if it is related to the LDN and my immune system working or the thyroid meds. Not sure if with LYME we should be on thyroid meds. Gained a lot of weight with Lyme and just trying to figure this out. Taking LDN without thyroid made me feel well. Confused.
I was diagnosed with non-hashimoto’s hypothyroidism in January of this year and put on Armour. I had high-end-of-normal FT4 levels, moderately elevated TSH, low FT3 levels and undetectable antibodies. This sounds to me like low-T3 syndrome but my doc had never heard of it. Fortunately he was forward thinking enough to realise that putting me on thyroxine when clearly my issue was T4 – T3 conversion was pointless. I have experienced many improvements this year but whether that’s related to my Armour I don’t know. The last time I saw my doc he raised my dose to 3 grains daily (1.5 BD) but I started having hyper symptoms and reduced my dose to 1.5 in the AM and .75 in the PM. I’m now trying to wean myself off the Armour altogether. As of today I have reduced my AM dose to .75 also. I also recently started taking Iodoral and this seems to have done more for my symptoms than the Armour did. My temp has consistantly been 36.6-37C since starting Iodine supplementation when I was hard pushed to get it above 36.5 on Armour alone.
Hi Chris, thanks for the article. My naturopath doc put me on a low dose of T3, and I felt terrible. I had insomnia (which I never have), occasional discomfort in my chest, and just a general feeling of discomfort. This was taking only 5 ug in the morning, which my doctor said I should not even feel at all.
Vanessa, extra T3 for those who don’t need it, will most certainly create side effects similar to the one’s you experienced, I hope your naturopath informed you about the possibility. In my experience, all the other variations of thyroid medication failed to work on me with any long-term success, but once I tried “compounded”(timed release) T3 my condition improved dramatically. It certainly is not for everyone and many traditional medicine doctors will shy away its use.(fear of cardiac involvement). have a history of heart palps and an arrhythmia, I needed to be at my very worst in order to take the “risk” to try T3. It actually resolved my cardiac symptoms and I never had an adverse reaction unless you count being a bit warm a few nights on the highest doses I tried. Good luck with your search for a treatment…I’ve learned that you must just keep trying and keep careful logs of how you react to each medication/supplement.
I agree 100% with this. My doctors were similarly out of tune. They are so used to miraculous results as a result of armour thyroid and/or cyto that when you have a negative symptom they dont quite know what to make of it. I do so much better since I am on the right dosage but also had swelling/edema that was quite uncomfortable. Instead of thinking that perhaps i had gone up too fast in dosage they instead figured i must know be allergic to pork (amour is pig thryoid)…well, no, I wasn’t (!). Luckily, I figured out for myself that I was on too much medication. Not sure if you have tried this, but I find it helpful to spilt up my dosage. I take half when I wake up and the other half of my dose after lunch.
They also weren’t up on adrenal issues so am still trying to figure that piece out. after i kept crashing after exercising, I called and asked if I was not supposed to be working out and they said it shouldnt matter. still trying to find that perfect doc!
I guess my worry noow from reading these articles and from the book “Why do i still have thyroid symptons”, is that maybe i shouldnt be on medication at all?
Meg
We seem to have quite a bit in common…regarding lifestyle, exercise (even the running and boxing!!). I would love to see if you are open to corresponding outside this space…to share notes and support. I am totally frustrated with my Doc, meds, fatigue, weight and thist! Thanks in advance. ariesinaustin@yahoo.com
Meg What did you end up doing about meds and adrenals?
Hi Mattios, I can relate very much to your post. I too have low T3 and was an avid surfer before having CF among a list of other diagnosis’s for the last 3+ years. I’m curious about the compounded T3 and the manufacturer. I’ve started liothyronine at 5 mcg/ day, but still feel like I’m in a coma, Armour made my hypo symptoms worse. I’m looking for any help I can get to steer me in the right path. I have a 3 year old and would really love to surf more often. Thanks
The problem with natrapaths doing this is that they are entering carelessly into a dangerous game with patients. To best understand the complexity of the issue, you need to know that because we make hormones they cannot be patented so pharma and the FDA care very little about regulating them and they often end up on store shelves along with other vitamins and supplements. And, because the supplement sellers want to make as much profit as they can, they do not tell you about the limited conditions and situation in which it would be helpful…indeed, they make their money on people buying stuff that ultimately is of no use to them. Now, the second part of that is the public’s misperception that endo hormones are like vitamins and are safe to take (which they are not). Because here is what happens…the endo system is highly sensitive and extremely self regulating…it decides the levels of hormones it wants and it keeps them there. So, if you take thyroid hormone, your thyroid will make less (unless there is something wrong)…and because you are making less, drs and natrapaths give you more…and in turn the gland makes even less…untill eventually it stops making any and atrophies…at which point you will be forever dependent on taking that hormone for the rest of your life. All of which is completely unneccesary and entirely avoidable. This is one area that freelance practioners really get a big, “shame on you,” in my view…they should know better. And it breaks my heart that faced with people having issues on it that they do not even know enough to tell the patient to stop, double shame on them.
Well, this is interesting…. I have recently been wondering if I should even be taking thyroid hormone. My blood tests indicate that my thyroid is working correctly, but that my T4′s are not converting to T3′s. I also have extreme mercury toxicity (can this cause the problem?). I am currently undergoing chelating therapy for about 8 months now. Things seem to be progressing nicely.
Now, originally what brought me to my naturopath’s door was the fact that I had unexpectedly, with no apparent reason, gained 20 pounds. My basal temp is VERY low, but other than that not many symptoms of hypothyroidism (except hair loss which could also be from mercury toxicity). In fact, I have a ton of energy.
My new family MD says that maybe I shouldn’t even be taking thyroid hormone.
And, after just reading some books about Primal/Paleo lifestyle and am thinking that maybe there is such a thing as “functional hypothyroidism”. Lower thyroid and slower metabolisms have been linked to longevity.
So, my thinking currently is whether I even need this thyroid hormone.
Am now a 57 yr old married female with FMS/CFS, hair loss, dry skin, constipation, osteopenia, leaky gut, sleep problems, zero sex drive, next to no resistance to colds/flus since having a complete hysterectomy with double oppherectomy in 1999. Docs kept telling me symptoms were all in my head
and was just ‘unnaturally mourning the death of my mother in ’96′ and would be prefectly fine if I would just take antidepressants & antianxiolytics (even when I presented with a transient goiter but thryroid blood tests at the time still showed normal). Dx in March 2010 by endo with Hashimoto’s. Told endo right from the start that I felt worse after my GP put me on T4 (Synthroid) only but endo insisted I had to take it regardless although he did agree to add in T3 (Cytomel) afterwhich I felt an immediate improvement with sleep and lost 10 lbs without trying albeit this effect was only temporary. Weaned myself off Synthroid completely and felt the best I had in years but endo flipped out when he learned of it and threatened to not treat me if I didn’t go back on Synthroid which I reluctantly did and immediately felt worse again so have stopped it yet again and at present am on Cytomel only. I do feel a lot better, more energy, etc but it’s clear it’s not enough as still very susceptible to colds/flus at any exposure to other people which is just about every week when I go get my groceries. Endo won’t even talk about natural thyroid and have had adrenals checked but he says they’re fine so I don’t know what else is going on. He refuses to look at any other glands such as hypothalmus, etc so I don’t know what to do next as there’s really no one else to go to here as I can’t afford a naturopath. Am sick and tired of being sick and tired:-(
Mare – I feel your pain. I am in your exact situation.
What’s the cause of low basal body temperature and normal thyroid tests? Is it anything to be worried about?
Chris,
Quick question, what is the ideal TSH range for adults. I was pretty sure that in one of the articles you we’re saying that it was 0.8-1.8, but when i was looking over the acticle again it said 1.8-3.0. Did you change it recently? The reason im asking is my TSH is 2.46, which is normal by medical standards, but im experiencing all the classic hypo symptoms. My endocrinologist bluntly denied any corelation with hypo and offered bunch of drugs: htz for swelling, trazodone for sleep, and birth control pills to regulate my hormones. I politely declined her offer and recomended to keep up on the research.
So im very curies if you did change the range or im i making this up ? thanks buch, appreciate everything you do.
Hi,
I had a similar problem: being ALMOST out of range and feeling terrible. The thing to keep in mind about ranges is that they are determined by drawing on a random sample of people. so what if that sample was sick? Then the range is based on sick people…its better to go by your own symptons than anything else. I felt so out of it for a long time – all the classic symptons of hypo but every time I was tested, it came back “normal”. After about a year of this, I asked to see the results myself. Because I had previously had graves disease in my early 20s, I had YEARS of tests to compare it to. The years i felt great, my TSH was less than 1 or about 1. However, over the last couple of years, my TSH shot up to 2.8 or so. In fact the more symptoms i had and the worst I felt, I could track to the uptick in my TSH. I had to BEG to be tested for hashi’s. My endo finally gave in, and I tested positive BUT because i wasnt higher then 4 or 5 (they were using old range standards) they refused to treat me for my hashis. I was told it would take me 1-2 more years to get out of range so they medicate. At this point I was almost to the point of going on sick leave so waiting that long wasn’t an option – I have bills to pay….I found an integrated health doc who finally took care of me.
Sorry for the long winded response, but what I’m trying to say, is dont worry too much about the ranges, go by symptoms and what is normal for YOU.
Hi Meg,
You wrote that you’d “…found an integrated health doc who finally took care of me.”
Please explain what is meant by this type of doc and exactly WHAT did he/she DO that took care of you? And please don’t hesitate to be long-winded either – other folks’ lives are literally at stake here! I am SO utterly sick and tired of ‘looking’ okay which others’ see as being okay while inside feeling rotten the majority of the time so, I WANT to hear it, and am sure others do as well, ALL that you have to say about this so please, I beg you, DO elaborate for the potential benefit of us all?
I’m not saying that what’s worked for one may work for all as we are all individuals, but, the more we can learn from others’ experiences, the better I say.
Gratefully yours,
Mare
Hi!
I found an MD who was an integrative health doc. He actually specializes in allergies so you may be better off with an allergist as opposed to an endo. Before that, I was going to one of the best hospitals in the coutnry and the endos did not know what to do with anyone who displayed hypo symptons but were “technically in range” of normal TSH (and by the way, there were using an outdated range at that.) They never ran tests to check on T4, T3, Revers T3 antibodies etc. I had to BEG them to run the test for hashis and when it came back positive they basically said “yeah, so what?” I basically educated myself on the right labs to run and the best way to read them.
If you read Dr. K’s book on thryoid and google “stop the thyroid madness” you’ll find a ton of helpful info! Esp in regards to helping you find a doc that knows how to think outside of the box.
My current doc ran all of the above tests and even told me to avoid gluten bc that kind of stress has a tendancy to cause hashis and other autoimmune disease. This is easy for me as I’m gluten intolerant so I never cheat in that regard, I am now also eating paleo/primal. Basically I was impressed with the fact that this doc didnt want to just pump me full of drugs, he was interested in gut health, what I was eating, etc in addition to treating my symptons. However, as much as I am pleased to be feeling better, I am still not 100% in other areas – I don’t think he is up to speed on adrenals or other hormones so am now trying to find another doctor who is (perhaps in conjunction with this doc).
One tip I was told to help find a doc like this – go to your pharmacy and ask the pharmacist the names of Drs who prescribe armour. Typically if they are ok using that they have a different approach to medicine. If they understand the need for T3 sometimes, then they are probably on the right track in terms of not just going by TSH.
I think hospitals etc just like to run labs and look at the numbers and then dont actually analyze the numbers. They have a hard time treating the cause instead of just the stymptons and thats a prob, esp since a lot of “treatments” just end up causing more probs/symptons which then just means more meds etc. Its a horrible cycle.
My current doc spends about an hour wiht me for each visit – not just 5 minutes. Thats huge. I dont think the current medical system is set up to handle this type of one-on-one care but its NECESSARY for optimal health.
Funnily enough, I live in a big city and could not find docs like these in the city – I have to take a half day from work to drive out ot a burb about 45 minutes away in order to seek treatment. Crazy.
I hope that helps!
I should also add that I made a huge lifestyle adjustment. Sleep is a huge priorty, I take supplements such as D3 and Iron (test showed I was very low at both,but curiously my Hospital doc never commented on it – I stumbled on it when I got my labs!) Omega 3s, tumeric/cinnamon (helps with inflammation and controlling blood sugar). Holy basil (adrenal help), Super Enzymes and Probiotics for digestion. However, I would find a doc you trust first before embarking on supplements. You don’t want to just take things willy-nilly.
I also do yoga and walks as opposed to high intesnity stuff, eat really clean: grassfed beef, lots of fats(coconut oil. avacados) low carb, no grains legumes or dairy (welldairy occasionally – I’m lactose intolerant so avoid it as a rule and occasionally have tortilla chips when I have mexican). You really have to ensure you are eating high quality foods. Its HUGE.
For the most part I avoid things that supposed flare up autoimmune probs: like eggs and nightshades
Excellent article Chris.
Do you know of any data showing how common Wilson’s Syndrome may be? I’ve had a lot of experience with friends and clients who have good thyroid levels, but who suffer from low body temp until they clean up their diet and lifestyle. Do you know of any other factors which cause low body temp, besides lack of movement and not eating enough?
Thanks,
-Armi
Web you say the levels are normal, do you mean optimal? Many people have normal levels and are hypo
There’s no research on incidence of Wilson’s that I’m aware of, because from the perspective of conventional medicine it doesn’t exist.
Hi
I’ve been on T3 treatment for about 5 weeks now because my tests showed i’ve got normal TSH and T4 but very low T3.
I also have problems with my adrenals,probably because i’ve gone untreated with this for a long time.
Therefor i am also on adrenal support.
The first three weeks i didn’t feel any improvement,i rather felt a bit worse,but that was mostly due to my adrenals having a hard time coping.
After about three weeks i suddenly felt alot better,it was a huge difference in my brain,my constant brainfog just disappeared and it felt like i could think and use my brain again.Hard to explain,but i think anyone who’s had brainfog problems knows what i’m talking about.
I’m still very tired, but i think in my case alot of my symptoms i have now are related to my adrenal fatigue.
I apologize for my bad english,it is not my first language since i’m swedish but i hope you understand what i’m trying to say anyway .
Interesting. Why isn’t it recognized by mainstream health authorities? What do they usually describe it as instead?
Conventional medicine authorities have decided the Wilsons protocol is quackery. Conventional practitioners do not have an alternative diagnosis that I am aware of.
My doctor likes to stare at me whist implying I am mentally… not right. Because my TSH is lovely and I cannot be having these symptoms. I can’t tell you how many doctors I’ve had that react in the exact same manner.
The proof is in the pudding though… my TSH _is_ lovely. However, my very high cholesterol has never resolved. They can’t explain that. x
After lengthy research (medical as opposed to internet theories), there is no connection between adrenals and thyroid hormone conversion. The main culprit in thyroid conversion from T4 into T3 takes place in the liver. This is why the medical community refuses to recognize it. Wilson himself does not recognize that the ONLY connection between the adrenals and thyroid is in the pituitary and hypothalmus…and yet offers people NOTHING to support or test those. Hence, why he is deemed a quack…and why his protocol will ultimately not-help people. If there is something wrong with either the pituitary or the hypothalmus it is likely to affect both the adrenals and the thyroid…and only supporting the adrenals and thyroid will allow the condition to continue…sort of like constantly filling a leaky tire rather than fixing the leak. Worse, by needlessly taking any endocrine hormones, you cause the respective endocrine gland to slow down production or even stop making them altogether…in other words, you inadvertantly cause/contribute to gladular failure by needlessly taking endocrine hormones.
do you know if a severe magnesium deficiency .5 (1.5-2.2 range) would cause a poor ft3/rt3 ratio? my tsh and ft4 are normal.
i’ve been supplementing for 4 months now, hoping my ratio improves
Not sure that a magnesium def alone would cause it…but many underlying illnesses can cause both a magnesium def and too high RT3, as well as too little nutrition. Magnesium needs to be taken with other nutrients like calcium as they bind together and by taking one will deplete the other…just an FYI. High RT3 is the body’s way of dealing with illness or nutrient def…it is the body’s effort to slow your metabolism down to deal with either less nutrients or to help your immune system. Low vitamin D, and low iron as well as magnesium are common to many illnesses…I do not believe that the def causes the illnesses but rather is secondary and my best guess to why that is, is that the body likely needs more of those to deal with the illnesses.
I have never used any thyroid medication but I know a lot of people who have. I’m wondering if you’ve looked into the work of Datis Kharrazian? It’s really quite fascinating and I’m sure you’d love it.
Thanks for posting Chris!
I have trained with Datis Kharrazian, so yes, I’m familiar with his work.
Wow that’s really awesome. Datis seems like a very technical and detail oriented guy. Btw, I’m an affiliate for your product. I really like what you’re doing!
I agree…and am likewise so glad to hear that you have gone beyond his work. Thank you for all you are doing.
Have you read any of Jack Kruse? He uses T3 measurement to diagnose Leptin resistance. It would seem that from his research that much of the symptomotology of Thyroid issues is actually a metabolic disturbance from Leptin resistance. His stuff is really interesting, just thought I would throw it out there.
Yes, I’m familiar with Jack’s work but I wouldn’t agree that all thyroid issues are related to leptin resistance. I have many patients that don’t fit that profile.
Hey Chris,
I noticed low body temperatures about a year ago (I was 24 at the time), so I got my thyroid levels checked. I had low T3, everything else was in normal range. I also noticed that my total/hdl cholesterol ratio was 5:1, whereas in the past it had been about 3:1 (in the ideal range). I’ve been eating paleo for about 2 years and was on the low-carb end of things. My theory is that I was seeing high cortisol levels from exercise, low-carb, and a chronic injury. My doctor had no idea about any of this, but was happy to give me some T3 to supplement with. I did my own research and learned that T3 can regulate reuptake of LDL cholesterol, so I tried the supplement.
I supplemented T3 (25mcg/day cytomel) for about 6 months and started eating more carbs. I had my bloodwork redone about 1 month ago and my T3 had gone past the normal range and my t4 and TSH looked to have gone down a bit to counteract this. My cholesterol was back in the 3:1 ratio range though. I’ve since stopped taking the cytomel and feel ok.
I would say that the T3 did offer a bit of an uptick in energy which was welcome. My temperature was still low throughout the period that I was supplementing (around 97.2-98.0 typically — so not super low).
All in all, I think it was a good experiment to take the T3 supplement, I’ll try without for a while and see what my bloodwork looks like in another 6 months.
I had low thyroid symptoms for yrs. Synthroid & related synthetic brands were prescribed which didn’t help much at the low recommended dosages. The drs. refused to give higher doses which I was told might be harmful to heart function, so eventually I stopped taking thyroid meds 10 yrs. ago and just put up with the symptoms. In 2010 I tried taking a bovine based thyroid supplement recommended by a nutrition educated chiropractor. No noticable improvement. However at his suggestion, I did a saliva test which indicated I am glucose intolerant. After some time doing without wheat and similar grains, I began to feel better, more pep and energy. After awhile though my heart was racing a lot, going from the usual 60-70 bpm to 90 – 110 bpm. So I stopped taking the thyroid meds and my heart has gone back to normal.
Now that the underlying problems caused by the wheat intolerance have been addressed, my body is healing and able to utilize the thyroid my body produces.
Your site was linked to an article I was reading from Mark Sisson about hypothyroidism and I wanted to write you.
I am male, 52, and working with a well-respected M.D. in Monterey that specializes in men’s issues. I have been on sustained-release T3 for over a year now @ between 50-60mcg/day.
Past labs showed continued improvement in TSH/rT3 levels until my levels crashed on my latest labs (see below).
I have elevated rT3/TSH, HS-CRP, fibrinogen, increased android and gynoid bodyfat and other signs of chronic subclinical inflammation [I have had a long-standing chronic intestinal candidiasis infection and/or dysbiosis for 30 years, however, it is difficult to determine whether that is still "running in the background" causing upregulated overactive immunity or if it's something else].
I have been on the VLC Paleo diet for about the last year to help reset leptin and lose bodyfat. My fasting insulin is <2.0, leptin @ 4.0, but adiponectin is @ 4.0. I resistance train 4x's/week and am unable lose bodyfat and build lean mass. If I lose weight, I lose both mass and fat proportionately.
I showed TgAb @ 21.5 which is within normal range (<40), but it is still a presence. I had <10.0 TPO (<35), but the symptoms I experience are classic hashi's symptoms [tightness/thickening feeling around throat, lowering of voice as described here: http://www.stopthethyroidmadness.com/hashimotos.
I also showed some benign thyroid nodules that came up in a scan.
The rest of my thyroid labs as of 10-11:
TT4: 6.5 (down from 7.1 in June, 2011)
rT3: 262 (up from 176 in June, 2011)
TSH: 4.406 (up from 1.96 in June, 2011)
FT3: 2.9 (down from 3.4 in June, 2011)
Also, my LDL went up to 144 from 92, but TGL dropped 147 to 113, HDL up to 47 from 42. HS-CRP @2.40.
The only thing I changed is I went lower carb but read that in some LC can suppress T3 and raise rT3. I still eat some carbs, but very little. I am not on a keto diet.
Doc wants a serum ferritin level of 150 for thyroid function and is focusing on the inflammatory signaling.
I am interested in your further perspectives on treatment with respect to inflammation, hypothyroidism, etc. and whether you are open to work with a patient's physician.
I have had hypothyroid symptoms since the birth of my first child 4 years ago. I experienced significant bleeding. We think the bleeding was more extensive than the medical professionals realized, although they were alarmed when morning came. An annoying beep kept us up all night, and we realized it was MY monitor in the morning). At this time my b.p. was somthing around 70/50. I also developed gluten intolerance and have anti-gliadin antibodies. My TSH is normal, low free T3, lower free T4, and low zinc. Zinc supplements seemed to help briefly, but maybe not. I do not seem to have symptoms of adrenal insufficiency, but I am beginning to suspect Sheehan’s disease. Is this something you have dealt with in your practice? Do you have advice for a paleo/primal girl looking for testing/diagnosis/treatment in NC? I am already grain, dairy, and legume-free. My symptoms are weight gain, constipation (extreme when dosed with gluten), dry hair and skin, hair loss, cold, possible fatigue although I am a bit too busy. Thank you for your help in navigating conventional medicine!
Well, just got back from the endocrinologist, and well, it didn’t go well. She felt my free T3 was only barely out of range, so no problem. My TSH and free T4 were in the normal range, so no problem. My symptoms are apparently not important to a diagnosis, so I was patted on the back and sent my merry way. I have now been on strict paleo + no eggs and no nightshades for a month, but have had zero weight/pudge loss. I do bodyweight OR 1.5 mile run 3 times a week, which I plan to increase in frequency. I am feeling very frustrated. Any thoughts? Thank you!
I had almost the same thing happen to me after the birth of my second child and I suffered for over 6 years with all of your same symptoms. I kept having my thyroid levels checked and they kept coming back in the “normal” range. Normal for who?? What was my “normal” before my babies were born, I kept asking myself. Finally, my thyroid antibodies were tested and I was diagnosed with Hashimotos. The problem with Hashimotos is that is can fluctuate your thyroid levels up and down from normal to low and to high for several years. I think that every time I had my test done I was in a “normal” range. Get your thyroid antibody test taken. The TSH, T3 and T4 test are worthless in the case of Hashimotos. Good luck.
Thank you NicevilleMom. I don’t appear to have overt autoimmune disease, as I don’t produce antibodies to thyroid, thyroid hormone or tissue transglutaminase. I do, however, produce antibodies to gliadin and have elevated IgA and CRP, and low-ish free T3. I guess the short story is, I have gluten intolerance and clinical signs of general inflammation and hypothyroid without sufficient labs to suggest any treatment. Am self-treating with paleo diet but not getting results. I wish it would just get better, but barring that, I wish I could find someone to prescribe a trial run with Armour to see if it alleviates my symptoms.
To “maddieaddie” re “I wish I could find someone to prescribe a trial run with Armour to see if it alleviates my symptoms.”
If unable to get Armour, you could try the Dr John C. Lowe, LLC product (sadly Dr Lowe died last year but I his people are continuing to to carry on his legacy to help people) – he helped formulate a dessicated thyroid product called ‘Thyro-Gold’…
The following is excerpted from http://www.thyroidscience.us/products/thyro.gold/intro.thyro.gold.htm
“Thyro-Gold is a whole-food product. It contains the whole thyroid gland from New Zealand cows. The thyroid gland from the cows is freeze dried and desiccated so that it contains all the natural constituents of the gland. The thyroid tissue in Thyro-Gold comes from pasture-fed New Zealand cows. The cows are raised without the use of antibiotics and growth stimulants such as estrogenic compounds and genetically-modified somatotropin. We assure you that the thyroid tissue in Thyro-Gold will always come from cows raised in countries such as New Zealand and Argentina. Our reason for using tissue from New Zealand and Argentina is that these countries maintain the highest standards for the health of their beef.”
Might be of help to you? Just a thought…
Peace,
Mare
S. Ontario, Canada
I am trying to get help. Like the above poster I had TSH in the mid range, FT4 barely in range, and ft3 at 1.3 (2.0-4.2). I am on military healthcare, Doc (GP) says there is nothing wrong. Brought up all manner of secondary hypo, pituitary problems yet I get Euthyroid Sick Syndrome noted in my medical record no treatment, no recommendation, no referral. I am very anxious about this condition. I have a low tolerance for stress lately. Really struggling physically although im mitigating this through CBT and psychiatry. I am awaiting more of the above labs but I have a feeling I am more of a burden on my health care system, constantly feel like I am begging for an investigative approach to my symptoms. My last request I asked for antibodies and prolactin and testosterone. Well I guess I will have to beg even more for testing as I was only put in for two out of the three I asked for. Atleast I got FT3 again, after all, my Doc said it was not an important metric. Thank you for your post.. And thanks Chris for the Article. Especially hit home the comments about leptin and an overabundance of food and the rats and stuff. Rang a bell although I can’t put that into words. Which is why im going to again try to get better through diet. Although my diet is probably better than the average person.
So far out of all the symptoms ive had over the past 4 or 5 years or so my best results came from limiting all sugar and carbs to very minimal and eating an even mix of protein, fats, and carbs. Low glycemic carbs. Lots of resistance training and try to limit over exertion through Cardio. But I am in the Marines so it is kind of hard to get adequate rest, get the right diet, etc etc etc. Probably have to get out due to this condition, but I really don’t want to. Thanks again for your time.
Low T3 syndrome is primarily caused by stress and inflammation. I imagine it must be really hard to manage stress in your current job, but it’s crucial that you do as much as you can in that arena. You should also ask them to test your thyroid antibodies to determine if you have Hashimoto’s.
Thank you for the response sir.
My most recent labs were TSH 1.6, free t4 .89, t3 3.3.. all fairly good ranges right?
I got a thyroid antibody panel, no results are in yet. But something incredible happened to me today. A CBC came back with slightly High MCH, and MCV, and Eosinophils 9%. Googled it and went to the exchange and picked up B12. 30 Minutes after ingesting the b12 my palate stopped itching, the sore on my tongue went away and felt less swollen, i stopped having chest pains, stomach pains, muscle soreness. Brain fog lifted a lot, cognitive functioning and reasoning got fairly sharp again. Headache I had today went away. Generally the “flare ups” as I call them went into remission. I have cycles like this sometimes 3X a week, sometimes 1x 2 weeks.
I highly suspect some food allergy going on. Thanks a lot Chris.
I have hashimoto’s, but it seems that the treatment is the same as hypothyroidism. antibodies decrease if TSH is at low level. how do you treat hashimoto’s?
This has puzzled the endocrinologist as he could not understand why I could have a low TSH and a low (or under range) T3 with a low T4. I suggested I might possibly have two conditions hypothyroidism and low T3 syndrome.
I was first diagnosed with hypothyroidism with a TSH of 8 and put on thyroxine. I was fine on thyroxine alone for about 10 years. I then started to get all the thyroid symptoms but my TSH was within normal range on the thyroxine (1.6) and therefore it was not considered my symptoms were anything to do with thyroid.
I was offered anti depressants which I refused. As my GP was not willing to investigate further I went and had a private blood test done.
I was found to have pernicious anaemia, and although my TSH was within range, my T4 was quite low within the range but my T3 was well below range.
I saw a private doctor who prescribed T3 along with the thyroxine and all the symptoms went, some quicker than others.
I am well on a combination of T4 and T3 together with B12 injections. I was diagnosed with diabetes type 2 a few years before the original diagnosis of hypothyroidism. All three conditions are hereditary (diabetes 2 on my mothers side, thyroid on my fathers, and his mother died of PA) . My sisters have diabetes 2 and hypothyroidism although they are fine on thyroxine only.
I’ve had it with the medical arena. After using compounded T3 on and off for eleven years, I got “fired”by another ignoramus doctor and packed off to an endo. No thanks. They know less than I do.
This doctor was a replacement for the one who had actually listened to me and believed me. I had gotten tired and drained of cash traveling three hours to a doc who did Wilson’s Temperature protocol. I gave my spiel to this family practioner and he agreed to give me the prescriptions-he didn’t want to see me more than once every two years, which was cool…nothing was wrong. I felt perfect. Then, he retired. Then new lady doc prescribed for a year and a half before deciding to deny me care, telling me that I was endangering my heart, putting myself into a hyper state. I pointed out my temp was 98.4, pulse 75, and blood pressure 120/80. I told her those vitals she just jotted down are not indicative of hyperthyroidism. She had no clue what she was talking about…as evidenced by her idea that I should just “deto from this meth-like drug and go cold-turkey.” I was on 60 mcgs/ 2x day. I told her T3 needed to be slowly weaned off and she told me that it was a sign of my denial of my addiction!! Ver tense conversation as I had her look at my many perfect tests. She said …”But your Free T3 is almost 10! That is dangerous. I had to let her know that that is expected when you are taking it about an hour before a blood draw. She didn’t understand why my tsh and t4 were suppressed either. She was invincibly ignorant.
I decided to wean off and go it alne. So far I’ve gained ten pound, lost eyelashes and a lot of hair, got heart palpitations, bladder problems returned, low temp, no energy, dry itchy peeling skin, swollen legs and ankles, lung rales in the morning from fluid pooling…cholesterol is higher, fasting blood sugar is 112 (on t3 it was 92)….
But hey! My Thyroid panel is “normal”…..I’m fine.
You can buy Cynomel in Mexico it comes in 25mcg tablets it’s T3 its about $12.00. I would recommend seeing a naturopathic doctor. Best wishes, Carrie
I changed doctors in January 2012 and had TONS of bloodwork done. My labs show T3 reverse, of 33 or a HIGH diagnosis. Doctor prescribed Liothyronine. Doc also says I am pre-diabetic. I’m 38 years old and have never been told this before. I feel a bit like this doc wants to push weight loss meds, shots, hormone replacements, etc. Yes, I am overweight. I don’t know what to do and am really stressing over my upcoming appointment. I have results of all my past bloodwork and am trying to make heads or tails of it myself. It’s so confusing.
I did have a repeat of some bloodwork in Feb. On those tests it shows different results like TSH (0.69), T3 uptake (22), T4 total (8.4) and Free T4 (1.9). Those labs state these are all in normal ranges. Is this because of the Liothyronine?
Can anyone interpret these results?
I was on Synthroid 137mcg. My endocrinologist lowered it to 127mcg. 6 weeks later she stated my T3 is low so she put me on cytomel 10mcg. I just went in after 8 weeks and she said my TSH and my T3 and T4 are low and she doesn’t know why. So she is increasing me back to 137mcg Synthroid and 20mcg Cytomel. I am healthy. About 20lbs overweight and frustrated. I work out every day and I want this to go away and be back to normal. What do I do?
Chris any thoughts on hypopituitarism? I am 43 yr/o, have celiac, hypogonadism (amenorrhea 2 years), all the symptoms of hypothroidism (weight gain, ataxia, orange skin, low body temp and heart rate, water retention, ascites, memory loss, fatigue, exercise exhaustion, heart murmer, etc).
Low TSH and free T4 (just below normal range) and very low free T3.
I did paleo low carb for 6 months and plummeted, realizing I run much better with carbs, and probably was eating too many eggs, cabbage, nightshades, and sw potatoes (all bad for thyroid function). I have a hard time digesting fats also.
Still relatively paleo and then some (no dairy, no eggs, no grains- except rice in am only, no beand/legumes, no sugar, no fruit, no potatoes, no nuts, no seeds, no soy, no corn, no cruciferous) and absolutely no improvement (except with eliminating sugar, but my weight has never budged- I’m presently 15 lbs overweight. I have been gluten free for years and never really got 100% better.
I also have fibrous dysplaysia, and wonder if this can all be related.
I’m waiting for results of pituitary MRI to rule out an adenoma. In the mean time am about to start .44mg of synthroid and alesse birth control.
Noone has spoken about being diagnosed with hypopituitarism, I’m wondering if anyone else has seen it and been treated like I am about to be, and had any success?
I mentioned armor to my endo and he said when the pituitary is involved it is vital to have a consistent time released T4, and the armor, despite being T3 is unstable. He also mentioned that T3 is converted from T4 in the muscles and has nothing to do with pituitary or thyroid damage, so is not necessary to supplement with in my case (whatever that means, he blew the suggestion off and told me it was not safe).
Any advice or sharing of similar experience would be appreciated.
Chris if you have time, your thoughts on hypopituitarism would be greatly appreciated.
I, too, would love to hear your thoughts on treating hypopituitarism. I was diagnosed two years after the birth of my daughter in 1999. After going off bc, realized that I was not able to have another child without fertility treatment (had twins in 2006). Deficient/low in all pituitary hormones. Ruled out pituitary tumor with MRI and told “possible Sheehan Syndrome” . Have only been treated for thyroid (levothroid at adjusted doses over the years) but would like to explore options to safely treat other, pituitary related, hormone deficiencies. Any way to go about this gently/naturally? Supplements, dhea, pregnenolone, etc?
Symptoms that I believe to be related include (sometimes extreme) fatigue, waking during the night, hypoglycemia, gluten and dairy intolerance, low blood pressure. Follow a paleo diet but do struggle with binges that tend to be high in sugar (might be too low carb?). I know that there’s alot going on…sex hormones, acth/cortisol, growth hormone.
Again, would love to know your suggestions/thoughts. Thanks…
HI Jordan. I’m not a doc, but I’ve researched this a bit. You might try Chaste Tree Berry. It’s suppose to stimulate the pituitary. Also, look into chinese medicine. If you live in a big city, find a good Chinese medicine doctor.
Karen, thank you for the suggestion. I am trying to get a sufficient education before I decide how to go about treating my hormonal problems. The balance is so tricky…but I’ve become tired of living with all the symptoms.
I will look into the Chaste Tree Berry. I’ve also been told to check into bovine, ginseng, liccorice… Want to explore more natural options before getting into possibly replacing several different hormones. Also finding that it’s not advisable to treat the thyroid without first stabilizing the adrenals (which I’ve/doctors have been doing for years).
Chris, I know this is much less common and more complicated than treating thyroid problems alone. Do you have any experience with this in your practice or research?
I am 30 yrs old doctor,with increasing symptoms of sleepiness lack of concentration lack of interest to the surrounding lethargy ,my circadian rhythm is upside down for long time just i can go to bed only in the early morning ,I have significant psychological stress ,anxiety and manic behaviors,accidentally i have been tested for thyroid function test which reveal LOW T3 despite normal range T4 and TSH. I HAVE MISSED BEATS IN ECG WITH SENSE OF IMPENDING DEATH WITH PALPITATION AT NIGHT. my physician commented it is normal TFT .but i think it is not .put me on anxiolytic and bisoprolol 5mg. and i am worried that i might be in need for further treatment.AM I RIGHT THAT I HAVE T3 SYNDROME ?????
I have panhypopituitarism due to complication from a brain meningioma. I also developed Hashimoto’s disease. I am under the care of an endocrinologist who regulates my hormones. I was treated with levothyroxine (thyroid medication) and hydrocortisone, but it was not enough. I still suffered from lethargy, weight gain, and constipation. He started me on liothyronine sodium (Cytomel) and this has made a world of difference in my energy level and mood. I feel that after seven years of recovery from a partial brain resection and radiation, I can finally leave an almost normal life.
This is very interesting topic. I have hypothyroidism and am not able to convert T4 to T3. I used to take T4 only and felt fatigue, a bit depression, foggy thinking , lack of interest , and messed up menstruation. My doctor just asked me to exercise. When the depression became severe, I started to take cytomel. It helps a lot. When my T3 goes up, I feel happier and smarter, not fatigue any more.
I think professionals should pay more attention to low t3 syndrome, currently in Canada, if the specialist chose ft3, ft4 and tsh without specific request on the chart, the labs won’t do t3 t4 if TSH is normal This is so wrong!!
Interesting article. I was diagnosed with hypothyroidism a number of years ago. I started on Synthroid then, and have had to increase dosage gradually over the years. I’m now up to 137 MCG’s daily.
Because my numbers still wouldn’t quite right – my endocrinologist put me on T3 months ago. Not too long after that, I began noticing skipped heartbeats – sometimes irregularly irregular for a couple of hours – although I’m not entirely sure that the relationship was causal rather than only correlational. I stopped with the T3 and I went to a cardiologist who found hypertrophy (and put me on verapamil). It has been a couple of months, the irregular heartbeat episodes seem to be mostly gone (I still feel skipped heartbeats on occasion but they aren’t for extended periods of time (maybe just a couple of minutes long now).
Anyway, I have an appointment with my endocrinologist tomorrow and was looking on line to find out some information prior to going in. My latest blood test showed TSH of 2.85, T4 free, 1.6, and T3 total, 52. So, my T3 remains low, although the TSH and T4 seem to be OK.
I have never felt symptomatic with any of this, although my thyroid is somewhat enlarged (had a work up done a number of years ago that showed no cancer). No chronic problems that I have ever noticed. The one thing that I think may be a “symptom” is that I’m @15 lbs “overweight” (I’m 5’10″ and about 195 lbs or so) and was not losing weight even though I exercised extensively (I have lowered my exercise amounts for now to see if maybe laying low and being on the verapamil might reverse the hypertrophy – which did not exist when I had an echo done some 5 years ago).
So taking T3 seems to be ill-advised. I’m wondering if you might have any thoughts on how concerned I should be about the T3, and whether there is any other way that I might address that issue without taking a T3 replacement.
I forgot to mention – I’m 54 years old, so the difficulty of losing weight despite high levels of exercise may just simply be mostly a product of the aging process. I have worked on reducing my caloric consumption – particularly since I’ve reduced my exercise levels temporarily – and I’m hoping that I can get a result of some weight loss via that route long-term.
Joshua, what is your Free T3? FT4 seems slightly high. I’d guess that you have a lot of Reverse T3. Also, have you checked thyroid anti-bodies? Many times an enlarged thyroid can be a symptom of auto-immune disease (Hashimoto’s or Grave’s). I would also check your sex hormones.
Have you tried taking selenium/zinc/iodine to help you convert your T4 better?
Thyroid definitely affects the heart and some believe that chronic hypothyroidism can cause congestive heart failure. I would definitely see about figuring out your hypothyroid issues rather than using verapamil (which has horrible side affects).
If you do have thyroid anti-bodies, many times just taking supplement natural desicated thyroid will solve the problem. It stops the thyroid from cannibalizing itself.
Dr. Brownstein has several good books on iodine and thyroid. They’ve been very helpful to me.
Good luck!
Karen (just a patient, not an expert)
I’ve been taking T3 for about 2 years now. While I”m mostly satisfied with the treatment, I am still interested in the root cause and possibly switching to Natural Thyroid or getting off it completely. Before I was diagnosed, my labs show a TSH creeping up to about 5.74. Without knowing it, I had just about every symptom of hypothyroid. I suppose I should be grateful my general physician wrote me a letter telling me my “torpor” (his words not mine) were not explained by a defective thyroid. That opened my eyes and led me on a quest. My worse symptom which developed around this time was a very heavy period that lasted 4 months. Of course I had to have tests for uterine cancer, polyps and any other cause before an ablation was recommended. Before I underwent surgery I wanted to make sure that it wasn’t the cause of my thyroid. Progesterone wasn’t working either. I had tried Synthroid without much luck and Armour (although it was difficult to get at the time) with very little change in my symptoms. At this point I had my Free T3 and RT3 tested and the first was low the latter was high and I tried T3 only. During this time, I had been monitoring my temps which were consistently very low. The T3 did the trick and I avoided the knife and anesthesia. Thanks for article, its very helpful for those of us on a quest to get better with this elusive condition.
I have being taken T3 for about 18 days. I am not sure if I have seen any results yet. I think I feel lighter and less swollen and maybe my tempreture has moved slightly up but I haven’t lost any weight which is the main reason to take T3 replacement ( I split 2 pills of 25 μg in 3 days). My FT3 is low but within the range ( about 2.8 pg/ml and 2.97 for THS). I have antibodies which means I have Hassimoto. Reading your article I have second thoughts. Should I continue?
Hello everyone. Long story but basically got bacterial poisoning from a bum root canal. Had 3 modern medicine tests of my blood to find out why my energy level just died slowly but surely and no one could tell me anything. Went to a holistic type doctor and did a dark field blood test and found the bactieria infection. Had the root canal removed and bone surgery to remove the dead bone from my jaw from all teh mess that was there and now I am left with a dead thyroid and adrenals. Went to idiot normal doctor who tested ONLY T4 and TSH. TSH was up around 8 and the T4 was 1.64 so basically perfect. Holistic told me to go back and get the whole pannel done and I did and my T3 was low 2′s so my T3 was shot, T4 normal so thyroid normal and my TSH gone cracked because of the lack of conversion between T4 and T3. Holistic told me to kick up my cortisol levels 3 times a day and take selenium as it helps T4 and T3 convert properly.
I was not aware you can take T3 supplements directly but would love to learn more if anyone else has similar situations going on. Great forum by the way! With Low T3 can anyone point directly to supplements you need to be taking to test out what works?
Thanks!
NP
T4 of 1.64 is not perfect. and TSH at 8 is horribly high. With your T4 so high, I suspect your RT3 is very high. Your T3 is very low (assuming that is Free T3 and not Total T3 that is in the 2′s). Did you test for antibodies and Reverse T3? You’d need to test for that as well as iron (Serum, Ferratin and TIBC). Probably also be nice to know where your B12 and Folate stands as well as Magnesium, potassium and sodium.
Lots of guys who body build and run end up with very high Reverse T3. When you do that much physical activity, the body goes into survival mode and starts converting a lot of T4 into RT3 instead of T3. Of course, the infected root canal could have caused those issues, too. The thyroid tollerates weight training ok, but not a lot of aerobic training. The adrenals tollerate some aerobic training, but not weight training. So, between the two, if you’re having troubles with both of them, you shouldn’t train. Walking, Yoga, meditation and that sort of activity is good. Just not the stuff that pushes your body.
Are you taking selenium? Especially if you’re taking iodine, you should probably supplement selenium and consider supplementing zinc (in the evening as it sometimes will slightly lower cortisol). They are both supportive of good conversion of T4 to T3 as well as degradation of RT3. My understanding of iodine is that 65mg is a detoxifying amount and way more than the thyroid needs.
It took me 2 years to figure out my adrenals/thyroid and get back to working out. I’m 57, so I don’t work out like I use to, but I hike several times a week, use my elliptical trainer on the other days and I do weights 3 days a week (lightly, not to body build). I’m back to normal now and feel better than I have for 20 years.
Good luck to you!
WOW Karen, thanks for responding. I will have to look through my paperwork and see if I have all those numbers. I don’t think I do. I was told T4 of 1.64 was pretty good! Those numbers were taken in the first week of May but it was by a general doctor and not a specialist. My Holistic Doctor told me that just checking T4 and TSH was no good so I needed to go back in and get it done again and get the Reverse T3 and so on. Oddly enough I got these results back today. Since I had the root canal removed and Ozone therapy to sort out the bacterial infection of my blood my TSH has dropped down to 4.14 which is awesome. The rest of the results as of today are FT4 1.38 now, FT3 is 2.47 and my Reverse T3 is 34.0 Ng/DL. I went to my regular doctor to get a referral to an endocrinologist or however it is spelled and the earliest I can get in is the end of August! Absolute insanity! Let me see, what else of what you asked do I have…..Vit B12 is sent out and still waiting. I have not been in the gym in a year it seems as I just lost the energy to go in there. I am hoping now the bacterial problem is solved I can now focus on the Thyroid. i really have been in bed for a month unable to do anything. I am taking 400mcgs a day of Selenium. My holistic doctor is Alex Haskell. If you youtube him, he wrote two books on thyroid and one on Hashimoto’s. He knows his stuff for sure and suggested taking the Selenium and cortisol. I saw the note on zinc on this page and started taking it a few days ago. Haskell does not suggest taking a lot of iodide so I may lighten up on that. I was watching a few videos on line on iodide if you go here http://www.bbc5.tv/download and download the “Iodide, misunderstood nutrient”, it is long but it talks a lot on how it helps thyroid so based on that I thought I would test it out but it is not working. I am having to lie down in the middle of the day some times twice and rest as walking up the stairs knocks me out. How much zinc do you suggest. I guess my question is that I have been battered up with this pretty good over the last 6 months so how long does it take to reverse it all? I was told to take synthoid or whatever it is called but my doc said that if my T4 is normal than the Thyroid is normal and that it was my T4 to T3 that was out of whack causing my TSH to be so high. My cortisol levels were low so he put me on tabs of that and selenium, 400 mcg. I will add zinc as well but my question is, when should I start feeling a bit better! I keep wanting to be back to normal and when something does not work in a week I start getting antsy and want to test something else. Very frustrating this for sure. Logically if T4 is not being created to T3 and all that has to do with iodide then taking more of it should be a good thing no? Hard to know what to do. Doctors do not have a clue. My western medicine idiot just said your TSH is high so take synthoid. I told him I wanted armor and he asked why and I told him and he said well ok if you want, take that then. here I am telling him what I need to take. Just something wrong with the system. 2 months to see an expert, obviously folks out there are really suffering with this. I was raw vegan for most of my life so I had no cortisol so I guess that did not help. I am adding more meat to the diet now. Any other suggestions I would appreciate. This is a very helpful forum.
Newfie
I see folks writing they are taking T3, what do they mean exactly? Is that something you can get over the counter or does it have to come from a doc?
Newfie
Be sure to get antibodies tested. You need the WHOLE picture and that’s an important part. The iodine helps with thyroid production. Taking more doesn’t help produce more. You just need the amount that you need. The amounts you’re taking are more like detoxification amounts (although most people who detox with iodine take 100mgs or more). Raw vegan is not good for your thyroid either. Many of the vegetables that you would have been eating raw (broccoli, kale, cabbage, etc.) are goitrogens and are bad for your thyroid. Cooking them makes them healthy for your thyroid. Same with Soy except that even cooked Soy is still a goitrogen. And, I’m sure you know, now, that your adrenals need healthy fats (animal fats, coconut…….saturated, NOT unsaturated).
Karen
So much to know that no doctors will ever bother to tell you! Thanks! You have given me a lot to think about. How much potassium Iodide is ideal to take in your opinion for the mess I am in?
Thanks!
Newfie,
You need to figure out your RT3 ratio. If you also have low iron or low cortisol, then you most likely have a rt3 issue like Karen said. If you go to this site: http://www.stopthethyroidmadness.com/rt3-ratio/
There is a calculator on the site. You want your ratio to be bgreater than 20 to NOT have a RT3 issue. You may want to look around the site and join the Facebook groups too. Very helpful. It sounds like you hae a cortisol issue, but you need to know exactly how low. Did you have a saliva test? This will tell you when during the day is your issues. Also, taking T3 should help the T3 and possibly the cortisol issues.
Thanks Saleen, problem is I guess i am getting my numbers down here in the US so it might be different than up there. My FT3 is 2.47 (range they say here is 2.50-3.90 and my Reverse T3 is 34.0 (Range is 13.5 – 34.2) It does not say what the T3 is measured in but the RT3 is measured in Ng/DL. That is not even one of the choices on the calculator so the measurement is no doubt off.
I am going to go back and ask them to check my blood again so could everyone give me the total list of what they need to check me for?
Obviously the TSH, T4, T3, reverse T3, is there a difference between T3 and FT3 and T4 and FT4? Karen said something about knowing the antibodies. I have no idea what they are or how to get them tested. If i went to the doc and said I need all this tested above and my “antibodies” is he going to ask “what antibodies?”. I need to give them the total list as they really are not smart enough to know all of this on their own. First time they only tested my T4 and TSH and said go home and go on synthoid.
If someone could post the whole test list that would be awesome. I am really dead lately. Not sleeping, getting up lying on the floor all day long, just in a total mental haze. No energy, it really blows. I am still eating healthy, juicing every day, blending, getting tons of enzymes and so on but body it just shutting down.
TSH, FT3, FT4, RT3, TPO Antibodies, Thyroglobulin Antibodies (TgAb), you should also get Serum Iron, Ferratin, TBIC and Saturation (a calculated value).
Your FT3 is horribly low and your RT3 is very high. If I get a chance, I’ll calculate the ratio for you later this evening, but it’s very, very low. That’s why you feel badly.
Thanks everyone! I noted the whole list. My regular doc does not know anything it seems and was ready to throw me on synthoid after looking at my T4 and TSH only. My holistic doctor said where my T3 is low I need to take cortisol and selenium and that is what I have been doing for the last month or so but it is not really helping. I have a bottle of armour thyroid here in hand but have not started taking it yet as I was told by my holistic doc the thyroid is fine if the T4 is fine. I was thinking of testing it out and trying to take it for a while. I have hit a wall and have absolutely no energy at all. It is absolutely insane. Not sleeping for a darn, dragging myself out of bed and going right to the big cushions on the floor. Been off work for a month as a result of it. Just can not get the energy to do anything. OK so assuming the T3 is shot, what is the plan of action to restore it? Is cortisol and selenium the answer? I will go back and see if i can talk them into getting all that checked out and I can post it in here.
Thanks everyone! You are all very informed for sure!
Newfie
Also if you have these problems, how often do you go get your blood tested? Also once you identify the culprit and you get on a plan to sort yourself out, is this something that just makes you feel better instantly or does it take a long time and if so how long? I have been on the cortisol and selenium for a month and I feel awful but I don’t want to go jumping around testing things out if a month is nothing and it takes 2-3 months of doing something before you notice a change if you know what I mean. I tell you this is the battle of my life. I have never felt so horrible before and I am a pretty flipping healthy dude.
Did you have your cortisol tested before your doctor put you on cortisol? I was on cortisol for about 6 months and it made me feel like crap! Never want to do that again. But, if you decide to get off of it, you know you need to wean off slowly, right? Don’t just stop taking it.
Karen
Your RT3/T3 ratio is 7.3. They say to be healthy it should be 20.0 or above.
I was told by my natural doctor that I was low so I needed to start taking it. Cortisol I mean. I am scheduled to go to an endocrinologist but it is 2 months away. I have armour thyroid here and may start taking it to see what is what. I went to my regular doc today and he said expect 2 months before you notice any changes. Oh well. He said to wait another month before I get more blood work again to see where I am. Hopefully it slowly starts to turn around.
I will post any progress for sure!
Thanks everyone!
How did he determine you were low in Cortisol? Cortisol results are pretty immediate. It doesn’t take 2 months to tell if it’s helping or not. Did he do saliva testing on you (where you spit in a tube, 4 times a day)? How much are you taking per day?
Karen
One more thing, I started taking Potassium Iodine tablets as well. 65 mg a day I think they are. Forgot to mention that. I am basically flat on my back in bed all day with the energy of a dead halibut. Used to be a body builder, runner, blah blah blah…. Did it all and now I am exhausted 24 7 and have not been in a gym in 6 months. Just want to get my energy back so I can live life again. Any suggestions would be awesome!
NP
I don’t have any idea what is ideal. I get the low dose of Iodoral (12.5mg) and take one of those a day. In some people’s view, that is too much. I’ve been doing it for 3 years and it agrees with me. I don’t have a thyroid. I do it because I think it’s good for breast health and it has solved some issues I was having previously.
Good luck!
taking cortisol can crash your adrenals, you should be very cautious there. Low T3 is usually treated with Synthroid, Natural Thyroid Medicine, or Cytomel which is synthetic T3. Have you been on the Stop the thyroid Madness site? There are several yahoo groups you might find helpful, http://www.stopthethyroidmadness.com/talk-to-others/ , most people start with the natural thyroid group but you might find http://health.groups.yahoo.com/group/T3CM/ helpful given your stated issues. All the best, Beth
what a ‘nightmare’ this thyroid thing has become. in 07, i was having really bad hot flashes at night, thanks menopause and that was my only symptom so went to see my dr. and was told that is was hypothyroid but that was based ONLY on tsh, no other tests were done and i was put on 50 synthroid which i took with seemingly, no problem until about 2 yrs. ago when i started feeling sick after taking it, i got sudden, severe skin wrinkling, muscle loss in arms especailly and most of my eyebrows are gone, hair changes, A MESS and so i went to endo. he only based on tsh so i fired him and then, this dr. and that dr. and finally, my g.p. who is very willing and we are trying to figure this out together as he at least admits that ‘they don’t know’ exactly how to treat or what dose is right and of what medication. he sent me for tests and they are:
tsh: 2.379 0.358 to 3.74
free t4 0.85 0.76 to 1.46
free t3 183 210 to 440 (LOW)
total t4 10.3 4.2 to 13.3
total t3 0.87 0.7 to 1.9
he/we decided to try armour, i had bad reaction, heart palpitations and other things so, since i’d taken synthroid before, he started me on 25 synrhroid and 5 cytomel but i had strange reactions to cytomel too so then, just the other day i saw him and he said ‘try cytomel only’, i did and felt awful physically and emotionally so, now, i am trying 1/2 dose of armour, 15 a.m and 15 afternoon, i’ve never felt worse and like i’m not myself and no clue, what to do. why is my free t3 so low and what to do about it. i also have psoriasis since i was 5 and back then, we thought it was just a skin disease, didn’t know it was an immune disorder, i just wish someone could really figure this out.
I have had problems with my thyroid in the last four years; my T4 is not converting to T3 and I was given additional T3 capsules. I about lost my mind; extreme depression and laid our on the couch most the time. I kept consuting my medical person and she said just hang in and you will adjust . I did not and finally quit it before I contemplated suicide. Having knowledge of mental illness I knew it was the medication and not me so finally had sense to quit and my depression went away. I am still tired and my TSH went from 1.14 to 2.25 and the internet said that was normal. Well, it is not normal for me as I feel very, very tired and felt better at 1.14. He admitted he knew nothing about hormones – did he really to to medical school? – so I am wondering is it anemia or what.
Hi Deborah (you posted July 18/12 @ 5:41 pm) – you wrote that you were given “additional T3 capsules”. Do you mean you were taking T4 but then your doc added in T3? I can only speak from my own experiences, we are each individuals and so can respond differently than someone else to the same things, but, the reason I ask is because in my own case, when I was given T4, I felt much worse, similar to what you described as happening to you. This was because ‘my’ body didn’t actually need T4, it needed T3 as I too have a dysfunctional conversion of T4 to the active form, T3. So I am wondering if you might not need T4 at all but might rather benefit more from T3 without T4 as I did? (per the work of Dr John C. Lowe @ http://www.drlowe.com). Also, if your adrenals aren’t also receiving supplemental support as well, I personally think it’s doubtful you’ll feel much better overall (just my opinion:-). I had taken tons of supplements and changed lifestyle and spent thousands of dollars over the last 13 years cleaning up my diet, practising stress reduction, etc etc, all the things experts tell you to do but I only really began noticeable (and lasting!) improvements when a) I was put on Cytomel (T3) alone, b) more improvements when I completely stopped drinking/cooking with fluoridated water last Nov 2011 (reflected in vastly improved thyroid test results in Dec 2011 because fluoride is a known thyroid suppressant, hence it’s prior use in Graves Disease) and c) even more benefits in every aspect of my life (sleeping better, improved energy, better digestion, etc etc) when I was finally put on an adrenal support supplement (‘Adrenplus-300′ by Douglas Labs – contains various adrenal-enhancing vit/minerals but also actual adrenal and spleen concentrate) 2 months ago. Just some thoughts and am sending healing thoughts and best wishes for finding the solution for ‘your’ body:-)
Peace, Mare
I am 50 years mm with two children aged 29 and 15 years. I am currently (5 years now) on T3 following very low t3 results. I cannot say it is working for me since other symptoms of weight gain, fluid retention (all over the body including lungs) and lumps under the skin have not gone. Plus many other ailments that are not menopause related. My health has not improved and sometimes I can hardly walk without having my body ache all over like one with pneumonia. My eldest son seems to have the same problem with low energy and weight located in his waist. The 15 year old is now out of school due to ill health. His tests show slightly lower t3 and he is suffering attack after attack of infections, has lost weight, falls asleep in class. Some doctors think he is having problems in school but is high fever, diarrhea, headaches, swollen tonsils, ear infections that last weeks psychological? Does Somebody have answers for my family?
The T3 won’t fully work until you optimize your iron, ferritin, B12 and D. You also need to have your sex hormones tested. Are you breaking your doses up into 3 o 4 daily? Make sure you don’t have any food with iron when you take your medicine, that includes cereal (typically fortified with iron). Or don’t have any food at all with the doses. The T3 binds with iron. Also you need to slowly increase the dosage until you feel better. This can be a two year or longer process and you don’t want to make any great changes in T3 dosing as it can compromise your adrenals. The infections your son is having don’t sound like thyroid exclusively, perhaps he has a few things going on. Have you all tried cutting out gluten? Those are symptoms of celiac, as is your aching and is a genetic disorder. Many have both Hashimotos and Celiac which are both autoimmune diseases. Best of luck
I am new to all this. Just started nature throid and adrenal support via l tyrosine and small amount of raw adrenal. My concern is, doesn’t raw adrenal basically take over for and shut down the adrenals?
I have had neuropathy and fatigue for 6 years now. I can’t walk around the block with out electrical shocks in my legs. I trip and fall all the time. Had a high TSH to start with, with normal free T4 and T3. Now my TSH is under 1.0 and my T3 is low, and I have thyroid antibodies. I can’t remember the rest of the numbers. I had an MRI with contrast showing moderate demylenating disease that is not active. I’m on LDN 4.5 mg per night, and have been on it for a couple years. My new Dr has started me on Cytomel, I’m up to 36.5mcg per day in three divided doses. No signs of hyperthyroid symptoms. I can walk normal again, I can almost run, no tripping, great balance. I’m also on Adrenal support, DHEA, Pregnenolone, and some testosterone cream. All my hormone levels were low, except estrogen and progesterone, which is odd cause I’m 49 YO. From what you have mentioned in your articles makes me think my hypothalamus and pituitary are not working as they should. I’m very cold most of the time, I’m still cold on the T3. I read that low levels of T3 cause demylenation and raising up the T3 can cause remylenation. I feel so much better. Do you think this treatment with T3 could be harmful? Thanks for your articles, and any information you can provide.
Gut-Thyroid connection?
I know you are very buisy but perhaps you could offer you perspective. I have had low thyroid symptoms for 3 years now and recently started losing my hair. I was tested as having a TSH of 4.9, 5.3, and 4.7 within one month with a TPO antbody of 5 on the last test. My doctor says my free T4 is normal (14,2 pmol/L) they did not test free T-3.
The doctor says my labs are normal and will not treat but I still have typical symptoms of hypothyroidism. I have eliminated gluten and processed foods.
What is interesting is that about the time when my thyroid symptoms started I became very severly ill with some stomach bug after eating at a fast food resatraunt. I was fine in the morning, and by evening I was vomiting and having diarrhea continously for six hours until I was vomiting blood.
I Went to the hospital who did nothing more than give me morphine and take an abdominal MRI. said they didnt know what was wrong and let me go. I could barley keep anything down for several weeks and lost 20 pounds (and i only weighed 130 to begin with) worst pain i have ever suffered.
I have suffered continual flair ups with vomiting and diarrhea for no apperant reason then got diagnosed IBS which the doctor said was “emotional”.
My mother got the same bug I did, but her doctor gave her Rifaximin, and her digestive issues resolved.
Im not normally pro-antibiotic, but could a persistent bacterial infection in my gut be causing my other symptoms? could an antibiotic help such a condition?
Don’t go back to any Dr that won’t test your Free T3, it is the most important test for thyroid! Your TSH alone indicates you are hypothyroid! Your gut problems are interesting. I think I started feeling hypothyroid after a particularly bad intestinal bout. It *seemed* to resolve itself and I never gave any thought to the interemittant bouts of intestinal trouble I’ve had till I has a parasite test and it came back as blastocystis. It does seem that Rifaximin is the best treatment for it but it’s horribly expensive in the States even with insurance ($1200 in my case). I’ve ordered some from Mexico and hope it resolves everything but know that I may still have to deal with the hypothyroid. Best of luck!
Thank you Beth.
Unfortunatly I’m stuck with this stupid government doctor for the time being (I live in Sweden)
I would like to go to a private doctor but am currently unemployed and dont have the money.
I’m thankful for the care I have gotten here so far, because in the states I would have not have been able to afford even this, though poor care and apathy towards thyroid patients seems to be epidemic all over the world.
I have tried looking for Rifaximin in online pharmacies but most of the one I have found have bad reviews and I am a bit leery ordering anything from them as many peddle counterfit drugs.
I did find a place in the states with good reviews that I will order dessicated thyroid from though, because I’m tired of feeling crappy all the time and I’m really tired of knowing more about my condition than doctors and having to be at the mercy of their ignorance.
Does taking T3 involve a medication name or brand name? Where do you buy it? I see a medication called levothyroxine that might be available without prescription on the internet overseas. No doctors willing to prescribe anything for only low T3. (prescription = just gain more weight and suffer). I have low T3 (but normal in all other number, TSH, T4 and free T3 and T4) and am FREEZING cold all the time. I can’t work because I can’t tolerate the extreme cold in the workplace. My unemployment insurance is running out. HELP!
There are Doctors who will prescribe it, keep trying. Alternatively there are sites that sell Mexican Cytomel but its a drug you have to be very careful of as it can stress your adrenals and make your condition worse. Your T4 is probably not converting to T3 which is what your body needs. Several things are thought to cause this, low ferritin, iron, B-12 and D. So you need to get tested for these and treat. If you do decide to treat yourself get the book Recovering with T3 by Paul Robinson.
Hi There~
I have some T3 questions as well. I am a 29 year old female, not overweight, and relatively healthy. I’ve been eating Paleo for several months now and have taken out gluten and most refined sugars and dairy. Trying to stick with meats, veggies, fruits, healthy fats, and some starchy carbs. I have a 20 month old daughter who I had low progesterone with and was on Prometrium through the first tri. I got pregnant again a few months ago and then miscarried at about 6 weeks. I also had low progesterone then.
I had blood work done about 2 weeks ago and got my results back. Low in:
-Vit D 24 L
-Iodine 49 L
-T3, TOTAL 56 L
-DHEA 39 L
My TSH is 1.07, and my T4 is 7.2. The doctor has put me on 5mcg of Cytomel a day plus 2 drops of 5% iodine a day, 5000 iu of vit. D, and 10 mg of DHEA per day.
I have not felt that my hormone levels are right as my cycles are a bit irregular. I also have suffered from fibrocystic breast pain. As I said, not overweight…I’m 120 lbs at 5’7 1/2 and have been close to this weight my entire life. I exercise…yoga, walking, weights. I have insomnia from time to time, where it feels like my body won’t shut down and usually around ovulation or my period. I have suffered with some depression in the past but it was most severe a long time ago. I’ve also been under a lot of stress post-miscarriage but am doing a little better now and trying to focus on diet and less stress.
We would like to get pregnant again soon-ish. I’m concerned with taking this T3 and DHEA. Would I do better to try the Vit D and Iodine, and possibly the DHEA and see if that bumps my T3 level up on its own? I admit, I don’t know a lot about the thyroid levels and meds. I don’t want to cause further harm here but want my body to be healthy for the next baby.
Any help would be greatly appreciated!
I don’t think 5 mcg of Cytomel is going to do much of anything. You should join one of the Thyroid Patient Advocate groups to learn more about subclinical Thyroid and get input there. http://health.groups.yahoo.com/group/RT3_T3/ focuses on T3 only. There is a good primer on the topic at http://www.thyroid-rt3.com/
Your sex hormones and thyroid are all related so adjusting your vitamin levels and thyroid could normalize progesterone, estrogen and testosterone.
Best of Luck
Please be very cautious about the advice given on the RT3 groups. In my opinion, they do not understand the RT3 issues well and will have you royally upset the balance of hormones in your body. I followed that groups advice for several years and just made a mess out of my body and know many others who have done the same.
It’s difficult to find good advice and help, this some of the internet groups are way too aggressive!
You probably need to get more testing to figure out exactly what the issue is. It’s be good to have FT4, FT3, TPO and TGIab as well.
The vitamins can’t hurt. Selenium is very beneficial to both hormone metabolism and thyroid metabolism. And, along with Selenium, you’d want to supplement Vit E.
While taking large doses of Vit D, you should also supplement Vit A and K. I like the Carlson products. My suggestion would be their ACES product and their Vit K product.
Hi all -
The background: I have hashimoto’s (high antibodies) but so far my TSH has been fine since I was diagnosed in 2005 (highest it has been is 2.5). But, I still have been feeling terrible, and recently I was diagnosed with low T3 by my doctor. So, I was put on 5mg Cytomel twice a day which I’ve been doing for about 3 months.
The question: Is it possible that cytomel would make you gain weight/slow your heart down? Ever since I went on it, I have gained about a pound per week despite not having changed anything in my diet. I’m not overweight but if this doesn’t stop, I’m going to be. Heh. I also am incredibly thirsty all the time. I can’t get my heart rate up above 135 at ALL (I can’t run because of hip surgery, but even walking really fast at an incline, I can’t get it up high. This shouldn’t be a problem since I’m not exactly a world class athlete). From everything I’ve read, this is the opposite of what SHOULD be happening with the T3. So what’s going on? It hasn’t been very long so maybe it’s just coincidence, but still…
I am just concerned that I’m having a backwards effect and that this could mean something Bad. My doctor didn’t seem to think that this was caused by the T3, but I don’t know what else it could be. Anyone have any ideas or can point me towards a resource? I haven’t had much luck googling this one. Thanks!
Julie: there’s NO need EVER to raise your heart rate higher than that if you are exercising, unless you are an elite athlete. methinks your adrenals are depleted from either over exercise and you need to add SALT to your diet.
My thyroid was removed for being enlarged and having nodules, so I must take thyroid hormone replacement. However, I have been and remained classically Low T3 Syndrome. On the best T4 only (Tirosint…T4 w/o any fillers) my TSH is at the low end of normal, my FT4 is at the high end of normal or even high, my FT3 is low, and my RT3 is extremely high (over 150 points above normal). I have tried the standard Synthroid (T4), Synthroid (T4) with some Cytomel (T3); Cytomel (T3) only; Nature Thyroid; and Tirosint (T4)…and am now back on Cytomel (T3) only. That said, I also follow many of the other patterns you describe…I have a positive ANA, positive RA Factor, high C-Reactive Protein; hig SED Rate…and I also have late stage Neurological Lyme as well as gut/digestion issues. I get what you are saying about the body making RT3 in an effort to help itself heal…which is all fine and good in theory…but low thyroid function over the course of many years is also not very good for one’s health and well being. As a result of low thyroid function, my muscles tighten up and knot on use…which makes walking and just daily functioning a significant challenge. I also understand that there are few, if any, doctors out there comfortable with a T3 only approach…however, as a patient who was told that if this situation cannot be corrected that I face becoming sicker and eventually dying, I do hope you will hurry at coming up with a workable solution. Lastly, my two cents on the T3 only issue…regardless of all the controversy, RT3 does dock in the thyroid receptors and does take a while to clear…then it just makes sense from a safety standpoint (in case I should go into a thyroid-coma) to not-have my system mucked up with all that RT3…just saying. Anyways, thank you for your article and all you are doing.
When my tsh level was elevated at 6.3 my doctor and I decided to try 50mcg synthroid. On the day my prescription was filled we drew my blood and my tsh had actually gone down to 2.3. I decided to take the medication anyway and I’m glad that i did. Within days my digestion became normal again after about a year of leaky gut symptoms. I have no hashi antibodies. Testosterone is at a healthy level. No HIV or other diseases. Only my T3 is at the bottom of the normal range. I am young. 24. Emotional stress precipitated my digestive problems. I didn’t have the stomach for food but i forced it down. Soon everything started to give me gas and later I started having allergic reactions to foods. I noticed that my legs were always, always sore. Things got worse for a while. Then i picked up some books on digestive health, connected a few dots and started killing some nasty bacteria. I caution anyone undergoing a candida/parasite cleanse to please take it easy. I went way too hard with it and roughed myself up. I wouldn’t doubt that a too aggressive cleanse could aggravate a pre-existing autoimmune disorder or worse, instigate an entirely new disorder. So please remember to support your immune system first and foremost!
I mentioned earlier that my TSH levels had actually fluctuated a bit dramatically while i was unmedicated. I think inflammation and stress from the die-off, fasting, high supplemental iodine and a serious love of saurkraut and raw cruciferous vegetables were to blame. After stopping all this my TSH came down to a normal level. but like i said the T4 has had a very positive effect on me. And my T3 is low. So I think i might make a good case study here. I plan to stay on synthroid for a few more months while supporting my thyroid, liver, and digestion and then coming off the medication. Tentatively speaking, I think I may have caught this thing early enough. Please, look out for anyone who says they are having digestive problems and inform them of the dangers. Get them educated and on a cave man diet pronto!
Hi Chris, I wondered if you might give an opinion on diet and exercise for a newly diagnosed hypothyroid patient?
My labs are FT3 2.0, TSH 2.15, T4 1.0, RT3 30. Also low ferritin and vitamin D. Currently on 20mcg of cytomel.
My doctor thinks that my low calorie diet and exercise program combined with life stress could be the root of my illness.
My question is… What type of exercise and diet is best in my situation?
Thanks!
What are the ranges for your lab results? Also, did you do antibody tests/ You’ll need those as well as FT4 to make a full assessment. Did they test your TBIC and serum iron? Just ferratin doesn’t tell you much.
If you have high RT3, it could be because of your exercise and diet. Your body converts T4 to more to RT3 than T3 when the body is under stress (either emotional, illness or intense exercise related). Especially aerobic and anaerobic exercise. Weight training is hard on your adrenals.
I wouldn’t think that your exercise is causing your low FT3. but it could cause your high RT3 (don’t know that it’s high cause you didn’t include ranges).
Your thyroid also likes carbohydrates. So, if you’re starving your body of carbs, yes, it could also cause high RT3. Your adrenals like fats. So, if you’re starving your body of good fats, you could also be over stressing your adrenals. They want fats, cholesterol, salt and lots of Vit C.
A balanced diet with good fats and healthy carbs (veggies and fruits) are good for any body.
Does your diet/exercise routine also affect your menstrual cycle?
How long have you been on the cytomel? Were you on it when you had your last test run?
Hi Karen,
Thanks for your response. The lab ranges are listed below.
FT3: 2.0 (range 2.3 – 4.2 pg/mL)
FT4: 1.0 (range .8 – 1.8 ng/dL)
Total T3:116 (range 76 – 181 ng/dL)
Reverse T3: 30 (range 11-32 ng/dL)
Thyroglobulin Antibodies: <20 (range <20 IU/mL)
Thyroid Peroxidase Antibodies: <10 (range <35 IU/mL)
TSH: 2.10 mIU/L (range 0.40 – 4.50)
Ferritin: 24 (range 10-154 ng/mL)
Vitamin D 47 (30-100)
I began a intense diet and exercise regime approximately 3 years ago and did bootcamp style workouts about 6 days a week. I was on average burning about 2000-2500 calories a week working out and eating a low calorie (1500 cal / day) diet that entire time. It took 2 years to loose 18 lbs. In March 2012 after a period of intense stress I started gaining weight gradually even though I was doing all the above. Eventually I sought out a doctor who would run the full thyroid panel and got the results above in September. I started taking the cytomel mid october. I am up to 20mcg split between two doses daily. I am getting a follow up blood test run this week. My doctor says that I will likely be on a higher dose of the T3 because I am only in my 30s.
I have read so many conflicting reports about how to exercise and what to eat if you're hypothyroid, that I'm totally baffled. I want to loose the 5 lbs that I gained back since March but I just don't know what to do. Some say low carb is bad for Low T3.
Thanks again for the information. Any advice is appreciated!
Did you Dr tell you to increase your D and Iron supplementation? While the ranges aren’t too bad they are nowhere near the middle. Also you should have your B12 tested and make sure its in, at least, midrange. I also take Cytomel but in retrospect, I wish I worked harder at getting these three levels up before taking it. You may want to try splitting your doses into 3 or 4. Intense exercise can be brutal on your adrenals, have you had your cortisol tested? IF you are talking about cutting out unneccesary grains and potatoes, carbohydrates from veggies and fruits should be ample and good for your overall well-being including your thyroid, especially if you have Hashimotos although your test results seem inconclusive.
Yeah, I did a similar thing to you when I was in my 30′s. Stopped having periods because I was working out so hard and eating nothing. I did loose a TON of weight (got down to 98lbs). But, it wasn’t healthy and I’ve battled high RT3 ever since.
If I were you, I’d consider taking extra iodine AND selenium (don’t take one without the other), Vit E, extra C, magnesium and Vit D3. You have antibodies. I can’t diagnose you, but you shouldn’t have ANY antibodies. Being on the T3 is probably good for you. But, some people don’t feel good on only T3. Play it by ear and be willing to take natural dessicated thyroid if you need it. Maybe even just a 1/4 grain and then the rest in T3.
Taking the T3 will bind up some of your testosterone. And, while you’re female, you still need testosterone to burn carbs and build muscle, etc. So, just have your doc keep a watch on your FREE testosterone levels. I have to supplement testosterone even just on NDT.
What is your iron and TBIC level? You can’t tell if you need to supplement iron with only a ferratin level. You need all of the tests to determine if you need to supplement. But, if you’re low, you could have trouble utilizing the T3.
Sounds like you have a good doc. Mainly just eat a balanced diet. You need the fats, carbs and proteins, in balanced amounts to be healthy. Carbs feed your thyroid, fats feed your adrenals. Don’t skip meals and chill on the heavy workouts till you get healthy again. Walking/hiking/biking is very good for you. Just not the extreme aerobics and weight training. You’ll loose more weight by getting healthy and eating a balanced diet with moderate exercise than you would with your rigorous workout and starving yourself. The body shuts down your metabolism when you starve yourself (as you found out) by raising Reverse T3.
Karen
Karen
Thanks for the advice!
They didn’t run TIBC and serum Iron just ferritin.
I am supplementing daily with Orthomolecular Vitamin K2 with D3, Orthomolecular Reacted Iron 29mg, Cytozyme AD for suspected Adrenal problems (I have not done the spit test), Digestive Enzymes, probiotics, and a multivitamin.
Hopefully this next round of tests will help me dial in the dosage. My doctor did mentioned that if my RT3 has gone down and my T4 is still low that she might add a small dose of T4.
Thanks again.
My Dr added some T4 back and even though it was a small dose once a day, it had major ramifications. You’ll know if it’s raising your RT3, just be aware. I had almost forgotten the nasty symptoms I had to deal with before and once I realized and stopped, things got back to normal.
I had just the opposite affect, Beth. I was only only T3 for about 16 months and never felt well despite my blood tests looking ever so much better. As soon as I added some NDT, I felt normal again. We’re all different. That’s why I mentioned to her that if she doesn’t feel good (don’t go by blood tests, go by symptoms), you might add in some T4. Many of us don’t feel good on only T3., Many of us ONLY feel good on T3. Everyone is different.
Also, RT3 is normal. The body converts well over half of naturally produced T4 into RT3. It’s nothing to fear until it becomes too high. It’s tough to get it all balanced. And, I’m not sure that even when you do, that it will remain static. I fear it’s a dynamic thing that fluctuates with activity, stress, age, hormones, etc.
The one thing I do know for sure is that taking TOO MUCH of any thyroid hormone will cause you to convert any T4 into RT3. So, be careful not to overdose whatever hormone you’re taking (if you’ve still got T4 of any kind in your system).
Karen
Karen
I totally agree, how you feel is most important! I had planned on weaning myself off Cytomel when I started taking t Naturethroid…oh well
My major symptom (besides feeling tired, cold and all the rest) are terrible awful periods that won’t stop. I had one that lasted 4 and a half months! When that started back up, I knew I had to readjust.
but can you eliminate a high rt# with naturethroid? or only cytomel?
I don’t think anyone knows the answer to that. I think it’s a crap shoot and you have to figure out what formula works for you.
Karen
During my last pg I was experiencing extreme fatigue much more than normal pg tiredness. My mw did some bloodwork and all was normal except for low free t3 levels. Two days after starting cytomel I felt like a new person. I hadn’t even realized how depressed I had been until it lifted and I had energy for my life! It was amazing. I stopped the cytomel a few months after the birth of my daughter and all was well until recently ( she just turned three). I am again experiencing extreme fatigue ( not pg) and mild depression. In addition, my temp is real low. Normally I run low, like in the 98.0 range but lately it’s been in the 97.2 range. My mw doesn’t want to treat this outside of pg but she also says ‘good luck finding a dr who will script cytomel’. I came here hoping to find some guidance. I feel so crappy and really need some help!
Please ask your MW to order some more tests to find the root cause of your problem. If not the MW, find a dr, nurse practitioner, or go to a lab on your own.
Because your are 3 years down the road, and were fine for those 3 years, just taking T3 might not be the answer. To find out, you need to have more tests.
Retake the thyroid panel and ask for TSH, T4, T3, RT3, TPO, TGB antibodies tests.
You need to know if your making enough T4 AND if it’s converting too much of it ReverseT3 instead of T3.
I find Free T4/T3 tests are useless. Use Total T4/T3
If you are making enough T4 and it’s not converting to T3, you need to find out why.
TPO/TGB antibodies help you find out if your thyroid is having an autoimmune attack.
If that’s not the case, you might need an ultra sound of the thyroid.
At the same time . . . you want to do a complete hormone panel including
pregnenlone, DHEA-s, progesterone, testosterone, and estradoil (I think that’s how it’s spelled).
If the hormones are not optimal, it can affect your thyroid’s ability to function — and your body temp. I know of what I speak. At one time I was taking 80mcg of T3 and I was still at an average body temp of 97.5, for months. It was not until I started HRT that the temp rebounded to normal (within a few days), my thyroid function went back to normal, and I reduced my T3 to nothing.
At the same time as you do they thyroid and hormone tests, do a 24-hour cortisol test. You need to do all these tests on the same panel otherwise the results won’t tell you what you need to know. DHEA & cortisol need to be in ratio with each other, so you need to do both at the same time. Dhea & cortisol oppose each other. Too much stress, can cause the DHEA to crash, then cortisol is unopposed.
Once you have all this information, you’ll have a better picture of what’s wrong and hopefully understand what you need to do to feel better. Hopefullly too, armed with information, you’ll be better able to get what you need from a doctor, — even T3 if you’ve taken T4 or NDT before and have a history of adverse reactions. Some people can not convert T4 to T3 properly, so it’s not an option. Most people are fine with T4 + T3 (or NDT). If your thyroid really has a problem, a dr will be willing to help you.
There are websites that will sell you T3 without an Rx. If you live near the border you can simply go to a Mexican pharmacy and ask for Cynomel (same thing, spanish name). But I urge you not to self-medicate — especially if you really don’t know what’s wrong with you.
If after the tests are run and the answer is all you need is T3 but no doctor will help you, buy a copy of Paul Robinson’s book “Recovering with T3″. It’s the best advice out there. But I urge you to try and find a doctor or a nurse practitioner that will work with you because, at this point, you really do not know what’s causing your various issues.
You do not want to end up in a situation where taking T3 might only make things worse or mask a condition that is even more serious, like thyroid cancer or an internal infection that requires antibiotics.
I don’t follow this site, so I won’t know if you write back. Sorry. I hope you make a speedy recovery!
I developed some sort of problem after massive weight loss of 200 lbs. This all makes a lot of sense, but I still have no idea what to do about it. I developed what is currently being diagnosed as “hypothalamic amenorrhea”
I have low FSH, LH, and as a result — low estrogen, progesterone and free testosterone levels. Around the same time I developed highish TSH (in the 5-6 range), low Free T3 and usually pretty normal levels of FT4.
I am 26, it has been 5 yrs since the massive weight loss, and I have not menstruated normally in 4 yrs. Even with bioidentical hormone replacements, I do not menstruate. I have found I need massive amounts of hormones to normalize circulating estradiol (like 4x the normal amount). I use transdermal preparations/delivery systems (currently using FemRing + 2 pumps per day of .06% estrogel).
At the beginning of this illness – 4 yrs ago, I felt awful. Barely able to walk up stairs, hot flashes, severe weakness, night sweats.
I currently take Armour thyroid – again, pretty high dose (2 grains or 120mg/day), estrogel 2 pumps/day, femring, transdermal testosterone, and prometrium.
Combo of these meds does keep me stable. I have monitored intracellular micronutrient levels (selenium, copper, zinc, magnesium) and serum vitamins (D, E, A, K) and find nothing blatantly out of order. I also have leukopenia/low WBC which I would probably bet is related somehow. I have monitored inflammation with serum CRP levels but never get an abnormal result. I do not have any other inflammatory or autoimmune diseases.
I no longer have night sweats or severe lethargy, so I plan to stay on the meds, though I do feel they only treat the symptoms and not the underlying cause. No masses have been discovered on my pituitary, hypothalamus, or thyroid. At this point, I feel my disorder is on the outside edge of current medical treatment and I feel “fine” but wish my body would work normally because the prescriptions are expensive.
So, stable but not ideal situation. I worry about my bone density since I don’t menstruate and have difficulties normalizing estradiol levels. I have below average bone density for my age, and take a ton of vitamin D, calcium, and vitamin K to support my bones. I continue to monitor over the last 3 yrs and hope to see an improvement, but not holding my breath. At this point I would like to just stop the bone loss.
Hey Kayla. Did you have your thyroid antibodies tested? Is your liver ok? Have you ever tried supplementing with iodine, selenium, zinc to see if you could get your thyroid to produce and convert better?
Karen
Karen:
Liver is good, have not tested antibodies but thanks for the suggestion.
Have tried supplementing zinc up to 150mg/day and selenium 400 mcg/day with no help. Have not tried iodine as I understand overload/toxicity can have similar symptoms to deficiency and that concerns me, but I plan to try to assess iodine status at next appointment.
Hi – I am the classic case of having undiagnosed celiac most of my life leading to thyroid problems after my pregnancies. My kids were dx with celiac and then I was around the same time I was hypothyroid. I was treated with synthroid and although my levels were “normal” I still felt tired, on edge, cold and down. I went to a functional medicine doc and he looked at a more complete thryoid blood panel and discovered my free T3 was very low. He started me on cytomel around the same time I started the paleo diet. I ended up with SIBO and bad IBS and went low carb on the low FODMAP diet. I think I finally have that under control so have been following the PHD carb levels for a few months. I went back to this doc and after adding 10 mcg of cytomel, my TSH went down but there was only a small bump in the free T3, so he went down on my synthroid and added another 5 mcg of cytomel in the afternoons. I recently had levels drawn and my TSH is now .09, free T4 is .97 and my freeT3 is 2. I was on a strict autoimmune diet for almost a year, started taking selenium, supplement with fish oil. Not sure what else to do. I practice mindfulness meditation, yoga, exercise. So – am wondering if I do have some kind of autoimmune pituitary thing happening. I am sure I will be seeing an endocrinologist in the future.
Hi Ann. You should get tested for Hashi’s and Graves. Typically people with one autoimmune disease develop others. The way I understand autoimmune thyroid diseases, you want to completely suppress the thyroid, so you take a full replacement with your FT4 and FT3 being so low, you’re definitely not getting enough thyroid hormone. Dr. Brownstein has some good advice on treating autoimmune thyroid disease. You might get his books and study. He uses iodine and selenium. Especially with autoimmune, you can’t take iodine unless you also take selenium.
I’ve had low T3 syndrome for well over 12 years (can’t find test previous to that). My FT3 levels hovered between 2.2 and 2.6 (2.0 – 4.2 range). My RT3 was sky high (460 with an upper range of 350. Four years ago I started on this journey to fix it. I’ve tried all of the therapies…..T3-only 3 times (felt like crap on it), Natural Thyroid in high doses, etc. I’ve never had a problem with my liver, that I know. My liver enzymes have always been in the low teens. I don’t drink or otherwise abuse my body. My blood glucose has always been right around 80. Iron, however, was critically low and I had horrid periods. My Ferritin is finally into a relatively normal place (65 on the test 2 weeks ago), but it’s taken 4 years to get it there. I have signs of inflammation, but nobody can find the source.
Anyway, after doing a ton of research on thyroid and how it works, I started taking larger doses of Selenium/Iodine/Zinc/Copper. I had no hard evidence of deficiency (never tested them). After a year of backing down my dose of Erfa (dessicated thyroid) to 2 grains and just sticking there, I finally have textbook perfect thyroid levels and I’m feeling really well. Here are my latest tests (notice the RT3 level and ratio!!!!!):
TSH – 005 (always this level, even when I was horribly hypo)
FT3 – 4.42 (2.0 – 4.2)HIGH
FT4 – 1.1 (0.7 – 1.7)
RT3 – 219 (90 – 350)
RT3/T3 ratio 20.1 !!!!! (It was 6.5 before)
I’m 58 and haven’t had a thyroid gland since 1976. I’ve tried synthetic T4, and a combo of synthetic T4/T3, NDT with extra T3, Erfa, Thyroid-s, Thyro-Gold, What I believe worked the best was concentrating on getting better conversion and NOT overdosing thyroid Every time I take too much, if the dose includes T4, I would convert to too much RT3. I don’t know if I could get these same results by going back to the synthetics, but I don’t think I will try at this point since everything is looking good!
Karen
Hi Karen,
What doses of selenium, iodine, zinc and copper do you take now? I assume you are still on Erfa as well?
Yes, I’m on Erfa, 2 grains.
Selenium – 400mcg
Vit E – 800
Vit D 5000
Vit A – 20,000
Vit K2 10mg
Zinc – 50mg
Copper – 3mg
Selenium requires Vit E in order to be absorbed. And, if you take one oil soluble vitamin, you need to take the others. Some people are high in Copper, so it’s not a good idea to supplement it without knowing. Butt, just generally speaking, you should take copper if you’re taking zinc.
Karen
Thanks Karen. It is ironic since I just recently went to 400 mcg selenium and 800 IU vitamin E and have had some improvement in health. I take 32 mg of zinc and don’t take copper since I get a fair amount in my diet and a hair analysis shows (so far) a healthy balance between the two. I suspect some of this is due to my taking molybdenum for other reasons since molybdenum has an impact on regulating the zinc / copper ratio. I think I need to increase my vitamin D (currently on 2500 IU which might be ok in the summer but not in the winter I wager). I will think about A and vitamin K2 (MK-4 I suspect is what I will use). Thanks again
David, I’d also consider iodine. It is extremely beneficial to people with autoimmune diseases. In the beginning, you may get a bit of detoxifying effect (feel crappy), but give it a chance because in the end, I think you’ll feel much better. Iodine is needed by so much of your body, not just your thyroid. And, especially the endocrine system!
Karen
Hehe good call Karen. I neglected to mention when things were really bad several years ago I had undetectable levels of iodine in the serum. For about a year now I have been on one Iodoral per day (12.5 mg potassium iodine / iodide). My serum levels are about 60 ug/L on a a scale of 40-92.0 ug/L. I have been debating of recent about upping that dose a bit but at least I have some support now. Thanks again.
P.S. How much iodine do you take? Do you also take B2 and B3 a la Dr Brownstein? Just curious.
I just don’t understand how our systems got so screwed up. Mine was always off, but amiodarone killed my thyroid and rt3. I am on t3 suspended release only 10mcg because it aggravates my afib at a straight dose.
I have been Paleo for about 9 months. I initially lost about 30 lbs, and all markers are great…cholesterol, bp etc. But in the past month I have gotten almost balloon like in my mid section from my ribcage to below hip bone, I look pregnant. I can grab a good 5 inches of fat. I have not changed what I eat I was in a size 10 pants and now I cannot button a 14. My arms and legs are trim. What is going on? I am very concerned. This cannot be good.
You might check your cortisol levels. Is your face puffy, too?
What about those who are obese or have a chronic illness (have low t3 syndrome) AND full blown hypothyroidism? I’ve been on T4 only medication for 6 years and if anything, it’s made my symptoms worse. I started to take less and I started felt a bit better. Then after a blood test, my TSH was over 12 and my free T4 was well below range… My doctor called me and told me to “quit plying with my thyroid medication”. I’m due for a uterine ablation so I feel compelled to follow his orders otherwise I don’t qualify for the surgery but is this not suppressing what little ability my thyroid has to make direct t3?. Due to Menorrhagia, My ferritin was at 6 ug/L(range: 13-150), HGB, MCV, MCH, MCHC was low, even my potassium was low; I don’t think my ability to make and absorb t3 is currently very good. Do you think taking some t3 would be better? Also, I read that a ferritin level may need to between 90-110 is best for optimal thyroid function, do you agree? (I read this here: International journal of pharmaceutical compounding Vol. 12 No. 6, page 493). All my life, the highest I was ever able to get it (with iron supplements) is just under 30.
I really enjoy these posts, thank you so much for looking at this issue!
Sylvie, for what it is worth…when I was on too high thyroid dose (lab results showed too high) my main symptoms were excessive sleep and weight gain and I feel extremely hypo (just so you know that is possible)….and I will tell you, I also feel a lot better when I don’t take my thyroid hormone (and I have no thyroid). My guess is that there is something (a filler) causing an issue. Before you give up hope, there is a newer T4 called Tirosint…it tends to not be on insurance formularies yet so your dr may have to argue for it…but it is a T4 with NO fillers…and when I was taking it it was the best I ever felt taking the hormone. That said, labs revealed my TSH perfect, my T4 perfect, my FT3 too low and my RT3 over 180 points above limit…so we had to stop. Although I am on T3 only, I still continue to have issues with fillers…and react and get hypo on all but from one manufacturer…and it is not the cure all. I have all the same thyroid issues…just not the RT3 or symptoms (I collapse) from too much RT3. It is also harder to get rx’d because it is not part of the “standard of care”…and more of a risk in that if something happened to you and you were unconscious and the people attending to you did not know, you could get into trouble pretty quick…I stuck a post-it on the back of my drivers license. And, it is inconveinent in that you take it throughout the day. And, after that…drs will tell you all your health problems are because you are on T3. On the T3, I do not lose weight despite eating very little (I am sick and on antibiotics so eating is an issue…I get less than 500 cal a day). Just some things you should know.
Low T4 suggests that your dose is too low (supported by your TSH) and/or you are not absorbing it. You could also be super converting it to RT3 to get rid of it…and being sick that is a likely issue.
Anyways, hope that helps…and by all means, follow directions for surgery and hope you have a speedy recovery.
Thank you for your reply Faith, I had read some of your other posts and found them interesting, I follow a very pro NDT forum on Facebook so I found your point of view compelling.
To explain myself further, when I take my medication as directed, I can lower my TSH to under 2 and raise my free t4 to within range but I feel horrible when I do. My doctor does not comprehend this and says its not thyroid related; from what I understood from this artcle, he is in fact correct, my low iron levels etc are probably making me feel ill, but I feel MORE ill on thyroid hormone replacement. Regardless, all the symptoms I had when I was initially diagnosed hypothyroid 6 years ago, constipation, cold, heavy periods, depression etc have only gotten worse. I feel like I’m in a catch 22. I’m probably loosing too much blood because I’m converting too much to reverse t3 and I’m converting too much tr3 because I’m loosing too much blood – it looks like its going to at least cost me the lining of my uterus (which is otherwise healthy but my Gyno is pushing for a hysterectomy) to get out of it. I pray I can increase my ferritin to mid-range and see things improve, maybe ill do better on synthroid after.
I can’t help but wonder though; if I had a more informed doctor and a combination of iron injections, detox and t3 (temporarily) , perhaps surgery could be avoided.
Hi Sylvie,
Sadly, many of the thyroid groups out there are riddled with misinformation…like just how many feel dessciated animal thyroid glands are “natural” when they wouldn’t probably eat hot dogs claiming that they were unnatural. Or, how they erroneously connect adrenal function to thyroid. I am like you in that I feel very sick on Nature-Thyroid. I think we have to also realize that glands “make” hormone…they are not-hormone. Also, the feeder animals are likely being fed GMO corn and soybeans which could be contributing to the issue.
That said, please know that every person has a different set point…you have to find what numbers work for you. Fwiw, the lab norms come from a bell curve of people getting their blood drawn in that lab…so, if everyone getting thyroid labs were very sick with thyroid issues…those number would start looking normal. And it is just a guide, not an absolute.
Like you, I am made very sick by thyroid hormone replacement…and do really feel better not taking it…even the T3…and NO ONE has been able to explain that. Again, I think it is something in it. I hope you will give Tirosint a try, it might be what does the trick for you…I felt good on it (re no side effects, ie didn’t make me need to lay down and fall alseep immediately after taking), only became symptomatic of RT3. I hope one day to be able to go back on it…or, that they make a T3 in the future. Even on T3, my TSH goes all over the place while my other numbers stay stable…from less than zero to 9, 14, normal, 17…and I had no symptoms of the TSH going all over.
Also, it IS possible for our bodies to attack thyroid hormone (it will def attack Natural Thyroid if one has thyroid autoimmune). Of all the tests in my list I was able to get, even the Mayo did not have the T4 Ab or T3 Ab tests.
Feeling sick and your numbers are a very different matter than RT3 and than the iron and the only thing that relates them is you, otherwise they are not inherently connected. High RT3 is indiciative of an underlying problem…starvation (although that is not likely the case)…or some underlying illness. For two years all I had to go on was my RT3 to suggest something else was going on. Your issues/re surgery could be behind that but probably not because of the iron. Low iron may give headache and shortness of breath…and anemia issues…but dose not affect your thyroid conversion or use. Both thyroid and iron could make you fatigued. Thyroid or illness could make you gain weight.
You sound like you are on the fence about the surgery…and it is always hard to know. Personally, I’d take an iron IV over the surgery unless there are other reasons for it. That said, it was sort of the same thing with my thyroid…I was sick, suddenly, with neuro symptoms including random fainting, vision issue…and fatigue and weight gain. They sent me to countless tests that to me seemed to have nothing to do with anything (dizzy tests for lightheadedness???), but all that came out of it was that my thyroid was huge. Well, I was getting headaches when I layed down at night that would last all night and go away when I arose in the morning…and the fainting. What did I know then? I ate iodine (regret that now) and my thyroid got bigger. Not knowing what to do and thinking it had to have had something to do with my symptoms…I let them remove it. Felt great for 20 days, my fainting stopped (never to return), then downhill from there…I didn’t convert, I’d collapse, slurring words. I am glad the fainting is gone…and if not for the RT3 issues I probably would have given up on drs altogether. Now that I know Lyme is part of the picture, I have come more and more to regret having let them remove my thyroid…it could have been saved and none of my drs told me. I don’t have the answers as to do or don’t…just that it cannot be undone. I don’t know enough about the utrine system to even know where to begin looking. I have also heard of a conditon that causes such severe periods as to soak one’s pants in a matter of a few minutes…in a case like that it may seem worth it. Bottom line is…you will not be able to know everything walking in that you will learn afterwards…all you can do for now is weigh what you can live with. Like, I had no idea I wouldn’t tolerate thyroid hormone walking in…but it was really hard tolerating the fainting…sort of six of one half a dozen of the other. There is no right answer…only what you do. Back then, if I would have tried to seek answers in groups…they would have said take iodine (which I did) opposite effect…later on though, I learned what I could have done.
What is clear is that *something* is interupting and messing with your system…*something* that no one knows what is (yet). When it comes to something more complicated like that drs are usually useless, studies are where you start finding…an education on pathways. Know, that as soon as you start getting the pathways, you will likely know more than any dr you will ever see…which can, in its own way, be an issue. I remember seeing a progessive endo…he told me that RT3 wasn’t an issue…I asked, does it dock in the receptors…he had to answer yes. I asked, well then, would that prevent the usable thyroid hormone from getting in? He has to answer yes. And you don’t see this as a problem? No. *Bang head against wall* That said, I understand…it is outside the standard of care…no one has assured them how T3 only works…but still.
As a final note, having the surgery will cure the periods and maybe help with the iron issue…but will probably not correct whatever the underlying problem is. Oh, you know…maybe try seeing an intagrative dr…they, unlike typical drs who only manage symptoms…they try to get to the bottom of things…and they use regular meds, but can also use herbs and nutritional supplements. You are likely to find more answers there.
Anyways, whatever you do is fine…either way there is something to live with…and one way or another, you will find a way through this.
Faith, where do you come to the conclusion that iron is not needed for conversion? There are many studies that show this is not true. low iron causes poor conversion from T4 to T3 and high conversion from T4 to RT3 and is suspected to be the reason for lower body temperatures of people with high RT3 which is attributed to the lower oxygen in the system due to iron anemia. Here are just a few studies:
239. Smith SM, Johnson PE, Lukaski HC. In vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of dietary fat. Life Sci 1993;53(8):603-9.
240. Eftekhari MH, Keshavarz SA, Jalali M. The relationship between iron status and thyroid hormone concentration in iron-deficient adolescent Iranian girls. Asia Pac J Clin Nutr 2006;15 (1):50-55.
241. Zimmermann MB, Köhrle J. The Impact of Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry and Relevance to Public Health. Thyroid 2002;12(10): 867-78.
242. Beard J, tobin B, Green W. Evidence for Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr. 1989;119:772-778.
Karen,
I can see that you have your ideas and seem to want to debate rather than take a look at the information…which is fine (for you)…I, on the other hand, really don’t care to debate or try to convince anyone of anything…because, as a Lyme patient who is pretty sick, not only am I not up for it…but not sure if you have any idea of the politics and debates going on in Lyme Land or just how devastating they are to the care of patients like me. In other words, because their desire to debate…I (and many like me) suffer…so I no longer see the need or value in it and instead prefer to just walk past all the debaters and continue forward as though they don’t even exist.
Also, as a thyroid patient who was given a virtual death sentence when all my symptoms were still being attributed to my not being able to process thyroid hormone, as though my symptoms were stemming from my thyroid failure rather than stemming from another cause that also happened to contribute to my thyroid failure…not only do I get the extent of the disservice we do to ourselves, each other, and patients who are sick by wrongly attributing things to the wrong cause, I have been to many of the sites you and everyone else have been to and read the books and tried all that they say. Had I, like you, continued to hang steadfastly onto what they were suggesting, I’d be dead right now. So, you will have to forgive me for having walked past that and having done my own research. Furthermore, and I hope that you will take this point to heart…IF what those sites and non-doctors were saying were true, and IF that worked…then Chris here wouldn’t have needed to write this article…and everyone’s thyroid problems would be solved.
When I was handed my virtual death sentence of, “well we have tried every thyroid hormone there is and none of them has worked, and well you know that you cannot live without thyroid hormone,” at which point I was bedridden with RT3 levels over 180 points above range…I took it upon myself to figure out why nothing was working. I like to be thorough and because quite frankly I didn’t have the time to miss anything, so I started from the ground up. I researched the entire thyroid system from start to finish and everything involved…I even made a flow chart that if I could I would link here for you, and I made a list of absolutely every test that we could run in order to systematically knock them out to try to find out exactly what was going on (rather than the countless hypothesis’s of what people think or imagine might be going on)…and I started at the top, with the hypothalamus…then followed it to the pituitary…and then followed it to the thyroid, to the blood stream, and to the liver…it was fascinating…and eye opening in that at no where in the chain of events that take place were the adrenals connected…at all (except the hypothalamus and pituitary by separate function). Do you know how the liver converts T4 to T3? I am guessing you do not…so I will invite you to likewise do your own research…and will share that it makes for fascinating reading.
The primary reason for the over conversion of RT3 is that there is an underlying chronic illness, for me that happens to be late stage Lyme (lucky me)…and one of the primary symptoms of Lyme is a lower than normal body temperature (which you probably did not know). You also probably did not know that the majority of people with Lyme Disease do not have thyroid issues or endocrine involvement (other than low body temperatures)…nor would you know (unless you also had Lyme and followed the research), that many with Lyme will DEVELOP thyroid and other endocrine issues in the course of their disease process. There is a lot of research going on to figure out why that is, how that happens, and what (if anything) to do about it.
While you are unwittingly pumping people full of iron not realizing that it would feed their biofilms (many have a biofilm issue in addition to Lyme that makes their condition almost impossible to treat), essentially making them much sicker, often devastatingly so. What the public does not know about Lyme (because it is generally considered a mild flu-like illness) is that it is far more devastating than cancer and even AIDs, it mimics Lupus and MS (often being misdiagnosed as such), and to date there is nothing that kills it…it often leads to severe disability…so, I would hope that you would take this as an invitation to perhaps re-think what you think you know. You also probably did not know that if one simply treats the underlying infection that the endocrine issues tend to resolve themselves on their own. I am pretty sure that you did not know any of this, because unless you had opened door number 2 and gotten the booby prize of Lyme you would not have cared to look into the ins and outs of treating a hard to treat systemic progressive infection for which we have no cure for…and for which treatment for tends to make a large number much more sick.
As a thyroid patient who fits Chris’s description in his article here, I have to say that I have come to agree with his views (in part)…that it is not always a good thing to supp thyroid hormone to someone with a chronic infection for which if you resolve the infection that the thyroid issue will resolve itself. Where I do not fit his views, is that I do not have a thyroid so I must supp thyroid and understand that as a thyroid doctor he unfortunately also probably does not know very much about the ins and outs of the various underlying chronic conditions and how they interact with the thyroid system via the larger endocrine system.
As a patient with a, albeit small, string of diagnosis’s I can understand and appreciate how it is that people once given a diagnosis tend to view all things stemming from that one thing (ie that all things stem from thyroid issue) as opposed to looking at the diagnosis of the thyroid issue as still stemming from a larger endocrine issue picture. Part of this problem becomes the insidious overlapping of symptoms (ie contributing low body temperature to thyroid rather than realizing it is a sign of hypothalamic involvement). Where perhaps that is most evident and problematic is in the attribution of adrenal issues to thyroid issues when in reality it could not be more telling that the person’s issue is based in the pituitary or hypothalamus rather than the two organs at the end of the chain. And, since I am fairly sure you are aware of what I am talking about, the tragic part is that no where on the misinformation sites do they suggesting helping or even testing the pituitary or adrenal function…only that the crutch the adrenals and thyroid, limping them along as the true area of deregulation (pituitary/hypothalamus) is ignored. Worse, and often not realized, is that when the pituitary or hypothalamus is failing, the low or high thyroid or adrenal numbers have nothing whatsoever to do with the thyroid or adrenals. Supping thyroid when the issue is not truly the thyroid will cause the thyroid to produce less hormone…which will cause doctors/other practioners/patients to supp more thyroid hormone and a vicious cycle takes place until the thyroid stops producing any hormone and atrophies at which point the patient is now dependent on thyroid hormone for life when it had never been the thyroid to begin with. What they do not know really is hurting people.
How can I say not iron, well…show me that the enzymes the liver makes to convert T4 to T3 need iron…and then show me that without iron that they instead make RT3. Not limited studies with mice or rats, but show me the biological pathway…because it is not there.
As to your hypothesis that low iron affects body temperature, well…low iron causes anemia…ask yourself this, do all people, everywhere, who have anemia have lower than normal body temperature? Probably not…so this disproves your hypothesis. Also, you add that they have lower O2, ok…same question, do all people everywhere who have low O2 levels to the point that they need O2 machines have lower than normal body temperatures? No, they don’t. Your hypothesis fails, I am sorry.
Instead, I can show you that the hypothalamus is indeed the biological setter of body temperature. While I am not sure how it is all the people behind the thyroid sites and misinformation missed this fact, but it is clear that they did. Studies have shown that inflammation in the hypothalamus will cause the hypothalamus to reset the core body temperature lower. Now, there are numerous reasons why a person may have inflammation in the brain, but most of them have to do with some sort of underlying illness or disease process (underlying illness is also connected to high RT3). Again, unless you have an underlying hard to treat chronic illness of some nature then you probably are not aware that many are now being connected to possibly stemming from some chronic underlying bacterial/viral/fungal/parasitic infection that is making multiple systemic changes to the way the body functions. We know that the various critters who take up residence within us not only want to stay alive but that they have quite advanced survival mechanisms. And we know that a very common symptom of late stage Lyme is a lower than normal body temperature (that has nothing whatsoever to do with thyroid function). Studies have come out that have shown that inflammation in the hypothalamus can reset the core body temperature lower…which makes perfect sense since people with Lyme tend to have widespread inflammation. Of course, so do many other diseases. And hypothesis’s were formed that it is possible that some of the various critters that take up residence within us may lower our body temperature purposefully both to help disable our immune system (which is necessary for its survival) and to perhaps make the host environment more suited to its needs.
In any event, although low body temperature IS part of the endocrine system…it is not connected to or stemming from thyroid dysfunction (nor is it connected to or stemming from adrenal dysfunction). Instead, the reverse is true, those with either hypothalamic or pituitary dysfunction can have symptoms and signs of dysfunction in body temperature issues and deregulation, as well as issues and deregulation of thyroid function, as well as issues and deregulation of adrenal function…BUT…that this then is more accurately a sign of pituitary or hypothalamic issue and NOT thyroid or adrenal issue, and that the thyroid and adrenals are subsequent to something going wrong with the pituitary or the hypothalamus. Again, treating thyroid or adrenal or both when it is truly a pituitary or hypothalamus issue causes harm to the patient that the patient is usually not made aware of.
Hi Faith,
I empathize with your condition . I was also dealt a cruddy hand in life getting an autoimmune disease (Stiff Person Syndrome) that has a frequency of 1 in 250K to 500 K depending on who you listen too. It has stolen 12 years of my life and ironically the disease is typically in action eating away from underneath, nibbling at the roots in a person’s CNS, for an average of 8-12 years before serious symptoms are evident which puts its origination back somewhere in college or grad school for me (I am 43 now).
All I can say is keep fighting and don’t lose hope. You seem to be handling a very tough disease the very best you can. The fact that you are actively researching things and share your experiences and advice with others is a positive sign. I hope that did not come off in a patronizing fashion since that is honestly not my intent.
Couple of scientific points (I love research as I used to be a physicist but have now worked almost 20 years in bioinformatics and computational biology).
You are absolutely correct about RT3 and chronic infections. I would just add autoimmune diseases to that list. The saving grace in my case is immuno-suppressants are and must be my front line of defense. Still T3 only treatment has been the only way to get out of a terrible RT3 logjam. As their is no cure for my condition, I see no way to abandon that treatment option probably ever.
In terms of iron. Biofilms are a real problem. Iron feeds many infectious agents sadly. I think supplemental iron in most forms is a disaster for many. The only source that is ever worth damn (long experience with failed alternatives, trust me) is heme iron found in foods. Period. But again iron can cause more harm than good in some scenarios. It is tragic since iron is key to both the Krebs cycle and metabolism. Also neurotransmitter production of dopamine and serotonin. Y
ou are correct that iron has nothing to do with T4 to T3 conversion. But there is more to thyroid hormones than simply T4 to T3 conversion. Low iron is a serious metabolic problem since even if the T3 gets to the nuclear hormone receptors and give the nucleus instructions, low iron will adversely impact the proper gene transcription of those orders. This is of course not exclusive to T3 but other nuclear hormone receptor binders as well. Ironically, this has little to nothing to do with serum levels, but with iron available to cells in tissues and organs.
In my case near the “start” of my saga, I had a couple of very bad doctors (I was in bad straights) who misdiagnosed me with hemachromatosis after a bad bout of CMV and EBV. Those doctors proceeded to phlebotomize me down to ferritin levels 100. And that was after many failed attempts to supplement iron (most of which made co-morbid fungal and gut infections worse).
Ironically I was suffering from severe RT3 induced hypothyroidism numbers though my thyroid itself seemed fine. The real irony is at the time, hypothyroidism was one of the least of my problems which I am sure why my body adopted that pattern. No one even checked RT3 or C3a complements, etc. until late 2009.
Another comment: while the hypothalamus is the arbiter of body temperature it does this through TRH signaling. Ultimately T3 in the cell then dictates to the mitochondria how much uncoupling should occur for thermogenesis (virtually all energy comes from the mitochondria of course and heat is energy). This is done primarily in the skeletal muscle and increases O2 use in those cells and increases TCA cycle flux by an average of 70% (flux not ATP). Note contrary to misinformation on the web, T3 does not impact the amount of ATP synthesized (at least not with significance) but it at the original upstream instruction of the hypothalamus.
T3 is the mediator at the mitochondrial level to facilitate metabolic redirect of proton leakage across the mitochondrial membrane for uncoupling to make heat. If somewhere along the line that is blocked either at the thyroid itself or say RT3, the hypothalamus can try signal whatever it wants, the results will still be undesirable.
These systems of hormonal and neurotransmitter control are so complex it is hard to attribute a downstream effect like basal body temperature to necessarily hypothalmic or pituitary dysfunction. However, it is true that the immune system has strong override / veto capabilities at multiple points of entry in the complex web of interactions on the HPT, HPA and other axes, both upstream and downstream. This is likely a built in defense mechanism to get a person to sit down, sleep and let the immune system work. Unfortunately the immune system does not have a kindly interpretation of chronic infections or other chronic immune related disorders. It simply does what it thinks is right, all the time. It does little to consider what its own aggressive actions may do to the body over extended periods of activation and immunological warfare. The only way out inmost cases is to treat the primary cause that riles the immune system and get the immune system to eventually let go of control. Only then can hypothalmic and pituitary function be re-enabled.
To be blunt, in the past natural selection would have weeded people like us out, since if you had a long term chronic condition you simply died. Clearly the human organism is a work in progress.
On that cheery note, good night and God bless.
Hi David,
Unfortunately, Lyme is taking its toll on my brain today and I understood much more of what I read of your response than I will undoubtedly be able to communicate. While I agree that medical science has been slow to indentify biological pathways and mechanisms of autoimmune and chronic conditions…so much so that, I agree, there is little we can do but run around putting out the small fires of challenging symptoms. I too have EBV and blood work that suggests viral action in the mix…as well as a positive ANA at 1:640 and RA Factor as well as low grade chronic inflammation that is not abated with cortisone or hydrocortisone. For a while they thought I might have MS or Lupus, so when I got the Lyme dx I thought I was lucky because at least there is a treatment. However, despite my hopes, I have become much worse from the treatment (mainly abx and herbs that stimulate the immune system) which has left me wondering about the possibility of autoimmune. That said, many in the Lyme community have reported becoming much worse on immune suppressants…as well as my own short stint on Prednisone worsened me.
My heart goes out to you with Stiff Person, and a cursory read of the wiki and it would seem that since the change in my medications (hard to say if it was the loss of the abx that cross the blood barrier or the intro of Cipro which has tremor as a side effect), I seem share many of the same symptoms. What was of particular interest to me, was that in physical therapy the largest help has been what they called “nerve stretching”…but even in their just stretching me has given me back some ability to stay moving. It wears off of course. The other thing that caught my attention was the GABA issue and I cannot help but think of the MTHFR gene issue. It is hard to get information about it, but it seems to be connected to the manufacture and processing of many various things…like the B12 you mentioned. Although, I do not know very much about it…I will link the paper that (I have yet to read) that my doctor gave me (maybe you can make better sense of it). People with Lyme often attribute a worsening of symptoms to the “herx” response (although I am not sure I agree) and an inability to detox…and they are attributing an inability to detox to the MTHFR gene…but again, trying to find some evidence of that in research has been futile for me (although I am also contending with my failing brain in that so is hard to say if it is there or not). I have had the labs drawn for the MTHFR at the advise of a doctor I saw, but for me the only sign is very high levels of serum folate…as well, eating greens make me feel unwell and I have stopped digesting many of them which I took to be my body’s way of protecting me. MTHFR also deals with folate metabolism…but again, information seems hard to get on that. Anyways, so adding here on the off chance that there is anything in that of help to you.
http://www.heartfixer.com/AMRI-Nutrigenomics.htm
Lyme is just beginning to be linked to autoimmune, so far only in the arthritis area, but if so…if that is what the chronic, persistent, difficult to treat Lyme is…then it would make perfect sense why abx are making many worse. The people who ran the D studies (again, I am opposed to Marshall’s conclusions and protocol), but the people believe that most autoimmune is a response to or caused by some underlying (infection is probably not the best word)…but includes viral. Although, how do you fight that when immune stimulants make it worse? Dr. Datis K’s book on thyroid autoimmune, he gave an interesting hypothesis on how to do that by finding out which side of the immune system is overactive and stimulating the other side…indeed, if I can ever reclaim some use of my brain again, I hope to make a plan for getting testing and devising some kind of treatment plan for myself based on that. Although I have joint pain and grinding, and although that makes living life rather difficult, it is some of the easier symptoms to cope with. For me the area of concern is the nervous system issues…the twitches/jerks/tremors although annoying and embarrassing don’t seem to be threatening life…but the cognitive loss has been tremendous in my case (although it is hard to notice as I am writing here) but my ability to understand what others are saying or describe what I am going through or need or even understand where or who I am, that makes me very vulnerable…and the issues that I suspect are stemming from the autonomic system…breathing, high heart rate with low blood pressure, inability to digest foods…that I cannot seem to expand one side of my chest…all of that, although not off the charts or enough for drs to do much of anything about, amount to make me feel very poorly and is like my body struggles to stay alive.
Although my brain can’t sort it out today, like you, am very much in need of medical science to advance in their understanding of disease pathways. Despite the fact that I struggle to describe it, it would seem that we could come up with a better testing panel(s) to more clearly rule in or out various pathways (for example the C3a and C4a to differentiate Lyme from Lupus would clearly help a percentage of both groups who have been misdx’d and are made to suffer worse on treatments). And I say this because it would seem that almost all the progressive hard to treat not well understood diseases all sound very similar to one another with nearly same symptoms and issues.
Anyways, my heart to you David, hang in there and sorry my brain isn’t working better today.
I’m a computer programmer and analyst by trade so my knowledge or interest of anything health related was quite minimal until i started getting sick… im french to boot and all these studies seem to be only available in english – I do my best.
I read in the “International Journal of Pharmaceutical Compounding Vol. 12 No. 6 page 493 “Ferratin levels may need to be in the range of 90 to 110 for optimal thyroid function.” This study was mentioned in an article on How stuff works entitled “Understanding Thyroid Metabolism” which is how I found it. What I don’t know is why or how this statement was made, just that it references Lee JM. Functional Endocrinology: Thyroid. Presentation made at: Professional Compounding Centres of America’s Functional Endocrinology Symposium; August 18-20, 2005 Houston, TX.
That said, really heavy periods can lower much more then just your hemoglobin and ferritin levels. I don’t think any of the Levothyroxine Sodium studies were made with people who are anemic in mind, in fact, I suspect being anemic would knock a candidate out of most studies. So I don’t think we know all that much about how people like me metabolize it – I’ve never had an RT3 test done but I would be curious to know. All I can tell you is: synthroid does less than nothing for me – no proof or studies to back it up; just the fact that I still feel sick.
You say I seem on the fence about the surgery and you are correct; in fact I don’t want it – I feel pushed into it because loosing this much blood/feeling sick is simply no way of living. The only reason I’ve resisted the hysterectomy that have beeen offered for the last 10 or so years is because no one has told me there is anything wrong with my uterus… I’m getting the surgery done but for me it’s essentially giving up.
My daughter who’s 18 is starting all the same issues I’ve gone through and I would like to think there is another solution to offer her but what can I tell her?
It does seem that the higher my TSH the longer my period and I understand that heavy bleeding is a symptom of hypothyroidism but the blood loss is never what one would call anywhere near normal, regardless of TSH.
You mention Vitamin D and though it was never tested, I live pretty far north and my access to sun in the winter is nearly non-existent – I’ve often wondered if that is not the source of the start of my issues, I take some supplements nowadays, but its hardly a replacement.
The auto-immune aspect of hypothyroidism seems to be brushed aside by most medical proffessionals. I have to try all these things on my own. This week I’m trying going gluten-free (in addition to being vegetarian/vegan-ish for nearly 2 years); not sure it’s worthwhile but willing to try just about anything at this point.
All in all, I hope more research is done which is why articles like this one are so exiting… Many doctors seem to think that we’ve already found a cure and that it’s simple – I beg to differ!!
I say this only half jokingly; it may come to pass that all we need is a poop transplant! I seems gross and all but if it comes to light that it can fix thyroid issues – ill be running to get inline because I’m sick of feeling sick.
I’m finding this discussion very helpful, especially with the references to Chronic Disease. Sylvie, I was (and am) able to control my bleeding with T3 and the occasional progesterone. While my iron levels are inching up after years, it appears I’m not absorbing much of any vitamins or minerals as everything seems depleted. Best of luck to all and thanks for the robust conversation.
Hello Beth,
I’ve tried progesterone in the form of creams to no avail but never t3. I would like to try Cytomel but my doctor has no experience with it and is very resistant no anything that does not conform. Still, I feel I’ve gotta do something since the status quo doesn’t cut it.
Best,
Sylvie
Dear Sylvie,
Creams will not stop the bleeding, I too was given creams and even a very weak prescription by a couple of doctors before finding a doctor that acted. If the bleeding is that severe and prolonged you need Prometrium which comes as a capsule. I was taking 200 MG nightly for 14 days which did the trick. With the T3 it seems I was able to normalize my hormones enough to avoid surgery but it did take a few months to regulate. Have they offered you an Ablation instead of a hysterectomy? A Cryoablation seems much preferable to the standard ablation as it freezes the lining of your uterus instead of burning it. Of course its best to avoid it all and I feel fortunate that I was since that was the path I was on. Perhaps ask a local pharmacist who in their practice prescribes Cytomel or Cynomel (the Mexican version I take) and seek them out.
Best of Luck! Beth
Hi Sylvie.
I tried progesterone creams and they didn’t work well either. what worked for me were capsules from the compounding pharmacy. Even just 25mg does the trick for me. I started out at 50mg and backed off to 25 after a couple months.
Karen
I’ve been through the ringer when it comes to hormone pills; I don’t think there’s a whole lot that was missed. Some birth control worked temporarily and then the heavy bleeding returns.
In Mid-November I was injected with Zoladex to thin the lining of my uterus and it was supposed to trick my body into meneaupause for 3 months (little or no period). Well, in December my period lasted for 16 days of heavy bleeding. A blood panel in January revealed that my iron, TSH, t4 were too poor for me to get the surgery, even though I was on Feramax 150 mg daily at the time.
A couple years ago I was diagnosed with a skin condition of little consequence called tinea versicolor which has become difficult to control in the last few months – it seems to flare up soon after treatement – it makes me wonder weather what ever autoimmune situation I have causing psoriasis, possibly my thyroid situation is still very much active and what other conditions it could possibly throw at me..
I’ve since doubled that iron dose and increased my synthroid but I think I’m passed the 3 month mark on the Zoladex. The gyno’s office called and said the want to spreak to me after I get my TSH in range. I suspect they will either give me another injection ($1053.00) or insist again on a hysterectomy. I’m at the point that ill just follow the path of least resistance – I just to feel ok in the least amount of time; I’ve already spent too many years on sub-par health.
Oh gosh, I’m so sorry to hear about all that you’ve been through. In a very teary and unexpected decsion on my part, I walked out of a pre-op apppointment thinking I’d do the same thing but I just couldn’t do it until I tried the T3 and in the end found a better doctor (who has since moved across country)
I’ve had (cleared up) and recently developed a skin condition as well! Turns out I have parasites, it could be at the root of all the problems.. Dr says its the water in Georgia! Heck if I know, I have travelled to some farflung places. Since I’ve been diagnosed with the parasite, I haven’t been able to get rid of it, though I’ve most likely had it for a while. I continue to dig for the reason for my thyroid problems but that’s only because I was able to stop the bleeding! I couldn’t do a thing till I did that, I had one period that lasted 4 months. If you can stop it, I know you’ll feel better, even if its a hysterectomy. You can get Cytomel from Mexico without a prescription but not many are willing to go out on a limb. I’m so sorry for all your troubles.
Beth
Sylvie,
No, I hear ya…I just don’t have the answers. If you are not comfortable with the surgery, then maybe try the T3 first.
I know that anceint knowledge on vitamins and minerals had the reccomend that women eat liver daily until menopause. Men do not lose iron like women, which may account for little research or care from the medical industry.
That said, I will say…I know why studies say that and drs say that…because when untruths are told often enough and long enough (ie world is flat and how dare you say otherwise), people accept them as truth. Which would be fine IF it made people well and resolved their issues….but it doesn’t…because it was never it. People with thyroid issues pump themselves full of iodine, selenium, and iron…and they still have thyroid issues. I guess it is only when you have tried everything and done everything and it still hasn’t worked…that you cast your search farther…and when that doesn’t work, eventually, you come back to the begining…ie, lets start with thyroid pathyway function 101. It was there that I had my ah ha…but who am I to stop people trying every thing anyone who ever wanted to make a name for themselves said? I only step in when I percieve it to be a possible leath risk…ie thyroid autoimmune and someone giving the advice of taking iodine.
Likewise…one has to get savy at understanding studies. Many meds are approved, and treatments approved on very strange grounds…but looks legit. So here is an example, 20 people with pain…we give 10 a placebo and 10 say a blood thinner. IF more of the 10 on the blood thinner had pain reduction than the placebo group…that blood thinner gets approved by the FDA to treat pain. Now, does it treat pain? Probably not. But 95% of the population will believe it does (including 95% of drs) simply because the drug company said it did and the FDA approved. Fwiw, I entirely toss out those kinds of studies because they really are essentially meaningless. Instead, I look for the pathway…like the pathways of pain and the pathways of blood thinners, they dont ,atch up. Or like in the D studies…they detail the entire pathway(s) of Vit D…because then things start making sense. For example, learning that the Vit D Receptor IS the thyroid receptor…now, a person with normal thyroid blood counts with hypo sysmptoms who happens to be taking a lot of Vit D suddenly makes sense.
Anways, I only meant to reach out and offer support…hope it goes well for you.
I am curious Faith you mention the Vitamin D receptor is the thyroid receptor. While the 1,25 active form can bind to T3 receptors, there are multiple thyroid hormone receptors. T3 does not bind to VDR but 1,25 active form binds to thyroid and glucocorticoid and adrogenic receptors.
Here is an interesting preprint regarding the link to Vitamin D and Thyroid receptors.
http://autoimmunityresearch.org/preprints/ProalAnnals2009Preprint.pdf
Check out table 1. The associated disassociation constants are pretty scary.
Note I am pretty sure these researchers are affiliated with Marshall but some of the data and research seems interesting.
Blimey. That’s concerning. It might explain why my 25D levels are so low (approx 12) yet my bone density is so good. Not sure of my chances of getting the 1,25D levels measured however.
Hi David,
Oh thank you, what a fascinating study this is…esp in how they are hypothesizing that the Vit D Reversal Pattern could be a sign that an autoimmune condition exists…which would be EXCEEDINGLY helpful in the Lyme Disease community because so far the hypothosis that late stage Lyme could cause an autoimmune condition is in the earliest stages…this could possibly give us an easy test that is readily covered by insurances to indicate IF someone is autoimmune. How that is helpful, is in that this could lead to a significant reduction in the suffering of people with late stage Lyme Disease that are being made worse on immune stimulating treatment! Oh David, you are awesome! Thank you.
One thing that this brings clearer to focus is that all these competing studies show is explanations of hypothosis’s. Here is the study that I got the comment that the VDR is the Thyroid Receptor:
http://www.mendeley.com/catalog/vitamin-d-neuro-immunomodulator-implications-neurodegenerative-autoimmune-diseases/#
“Vitamin D acts through two types of receptors: (i) the vitamin D receptor (VDR), a member of the steroid/thyroid hormone superfamily of transcription factors, and (ii) the MARRS (membrane associated, rapid response steroid binding) receptor, also known as Erp57/Grp58.”
But now see, I may have leapt a little…as it is a family of receptors, that in light of the study you offered, shows how it does that…interupt the T3.
What I think I’d like to know…is how do they know that? I mean, what tests do they use to ascertain *what* is going on in a receptor? And, more importanty, how do we get said tests?
Anyways, is brilliant…thank you so much!
Hi Honora,
Not sure what country you are in, but in the USA it is a ready test that you should be able to get about anywhere…and is covered by insurance. Ironically though, like the RT3 test, it comes with a disclaimer at the bottom of it not being an accepted test. *Baffled at the utter slowness of the medical powers that be to keep up*
Although my 25-D result is not back yet so I will include my previous result (and as I have not been supplementing is likely lower now)
25-hydroxy-D (previous test result)
…D2 = 0
…D3 = 26
Total 25-hydroxy-D = 26 (30-75) LOW
1,25-hydroxy-D = 52 (15-75) PLENTY SUFFICIENT
Again, as I have not been supplementing and…this would seem to suggest the Vit D Reversal Pattern…it might be interesting to test again after supplementing.
You are most welcome Faith
Yes the VDR is a member of a large family of nuclear hormone receptors that includes also thyroid, adrogenic, and glucorticoid receptors.
What is impressive is how strong the active metabolite 1,25 calcitriol binds to those other receptors (very promiscuous).
My hypothesis is that in an autoimmune disease or even maybe chronic infections, the immune system uses this very mechanism as a command override to lower the impact of cortisol, T3, and sex hormones to make the person throttle back and “lay in bed all day”. This allows the immune system to do “its work”. But as we can see in actual autoimmune diseases or chronic infections that the immune system cannot solve on its own this can be a real problem. Of course we all need some amount of 1,25 active but it also has to be in equilibrium with the 25 OH metabolite.
This explains something for me. In fall of 2011 I was put on massive doses of 50000 IU 3 times per week by my internist. I felt so unbelievably tired and depressed for 2 months, and I noticed symptoms were always the worst on the day I took the dose and yet things got progressively worse the further I went along with it. Finally by the holidays, after talking to my neuroendocrinologist I just stopped and while I was tired at least I was somewhat coming back. During all of this I was taking 75 mcg of T3.
In late December 2012, I had been off any vitamin D for about four weeks. My labs showed 88 (30-100) for 25 OH and like 77 (10-75) for 1,25. While the ratio was considered balanced by the Marshall people the actual 1,25 was overboard.
I continued taking no vitamin D and in the middle of January my neuroendo raised me to a 100 mcg T3. And guess what I started feeling better faster. My guess is I was laying off vitamin D but I still needed more exogenous T3 to try to get some semblance of activity past the 1,25 floating around.
Now I take only 75 mcg a day (granted I need to still divide doses) but I only take 2500 IU vitamin D a day and my labs are 37 for 25 OH (which my internist is all worried about of course) but my 1,25 is 58 (10-75) which while the ratio is not right at least it is not saturating all those other receptors. The point being I feel much better now than a year ago even after I started to perk back up from the disaster of 50K IU vitamin D. Gah!
Hi David,
We have very similar D panels…my 25-D is 26 so LOW (and might be lower now since I haven’t supplemented for months), but my 1,25-D is in the 50′s so plenty adequate. I am choosing to view this in the same way that I would thyroid…just because T4 might be low if T3 is adequate then probably should leave well enough alone.
The studies leave me with many questions and unsure what to advise or think about it other than to advise testing before supplementing. As for me, my 25-D was originally 6 before they removed my thyroid…and I try to supplement and feel good for a short while and then worse…when I stop I begin to feel better again. And my feeling about endo hormone supping in general is to do so with caution.
Re Marshall…he seems a smart guy and the research is great…but I don’t necessarily agree with his conclusions. I don’t think it needs to be cured…necessarily…or if we even could. I do think that the D issue could explain why some people with normal thyroid levels are hypothyroid…and a much simpler fix that supping thyroid.
This is why I think I might have a problem getting this test done (in this town at least).
“This is not a valid measure of Vitamin D Stores. It is the active metabolite of Vitamin D, which may be elevated in patients with granulomatous disease and hypercalcaemia. Apart from the rare indication in patients with hypercalcaemia of unknown cause and a suppressed parathyroid hormone there is little or no clinical reason to request this test. For further information contact a Chemical Pathologist or Endocrinologist. External Price $481.85(Exclusive of GST)”
That price is about US$400 and has to be sent to Australia from New Zealand as a frozen sample. Maybe I could find a cheap lab in the States and send my frozen sample blood over. Or it might be cheaper to see what’s happening with the parathyroid hormone as Vit D and PTH have some kind of relationship. Time to pick the brains of the steroid boys again!
Oh Honora, I get that you are not in the States…yes, that may be a problem (most countries don’t recognize Lyme at all either…is very sad).
The argument for the test would be that you want to rule out the Vitamin D Reversal Pattern that is present in some autoimmune conditions…and that you would like to verify that you do not have too much active D. Drs tend to need something to hang it on…a billing code…and you could say that taking D makes you feel sick even though you are low. I don’t know…these aren’t very good answers.
Anyways, you can always just ask. I found when it came to having to argue for a test (like the RT3 tests), that the best tatic was to 1) present sound medical argument/evidence that warrants the test; and 2) say, “I would like that test and unless you have a good sound medical reason not-to run that test.” Over the years I had to get exceeding good at medical arguing. Ultimately, it is better to have a dr who cares about you enough to just run it just because you’d like it.
Anyways, good luck…I hope it works out.
It really is worth grinding through that preprint article David posted above. I find persistent rereading allows the message to eventually filter through.
Hmm…that steroid scientist didn’t know much. He said normally the 1,25 levels are lower than the 25 cholecalciferol levels because the 1,25 form doesn’t stay in the body for long. Think I’ll try the rheumatological immunology research group that I noticed in our hospital corridor today!
Hi Faith, sorry to be so slow to respond, I’ve not been feeling well.
What do you mean concerning Vitamin D? That it could essentially clog up the thyroid hormone receptors?
I take about 1000ui (I think it’s the smallest dose) since there is NO sun to be had; in December, I go to work in the dark and it’s dark again when I come home. I take D about 3 months a year; usually stop when the days get a little longer.
Supplementing with iron never really made sense to me; it’s quite literally prescribed by my doctor but you’d think that if my iron’s depleted; all my other nutrients & minerals would be equally depleted… Never really undrerstood that but it’s been prescribed to me on and off since my teens (even before I ever got my period strangely).
Thanks for reaching out.
Opps *testing pituitary or “hypothalamic” function.
T-4 ….Synthroid…..didn’t help my hypothyroid symptoms. After my internist began me on a trial dose of T-3 my total cholesterol went down from 323 to 266 after only 3 months. 3 years of Synthroid hadn’t been able to hardly budge my numbers. Fatigue, constipation, and body temperature are definitely improved. I am anxious to see my 6 months number on my cholesterol !
Hippocrates said that all diseases start in the gut and I believe him ’cause I believe that’s what started it all for me back in the 80s:-( If a body unknowingly has ‘Leaky Gut Syndrome’, a widely recognized problem in the alternative medical community but one that is largely dismissed as being non-existent in the minds of most conventional docs, this health problem can lead to a myriad of chronic health problems, only one of which includes hormone dysregulation. Antibiotics, NSAIDS and antacids all of which are contributors to the problem along with gluten, dairy, soy, etc etc. are things most of western society takes for granted and so play a major part in most everyone’s life in modern day. Dr Robynne K. Chutkan, MD, FASGE, Assistant Professor of Medicine, Georgetown University Hospital and Founder and Medical Director, Digestive Center for Women is an integrative gastroenterologist who believes from what she’s seen in her practice that leaky gut is at the heart of many people’s chronic health problems. Chris Kresser, the creator of this group has written on the subject in this article from 2010… http://chriskresser.com/the-thyroid-gut-connection. If a person hasn’t healed the leaky gut first, thyroid problems will continue as the assault on the immune system continues, just as it has for me as I’ve not been able to find/afford a doc to help me with this so am trying to do it all on my own. While I’ve made some progress with dietary changes as much as I can afford plus L-Glutamine, I’ve a long way to go yet but what can one expect when the problem is many years old so can’t expect a reversal of the problem overnight.
Mare – have you tried this combination of herbs? It is a very strong anti-bacterial, anti-microbial and anti-parasitic.
You take for 3 months (6 days a week for 3 weeks, then one week off for 3 months). It never made me feel badly at all. It will also treat other bacterial problems throughout your body, not just in the gut.
http://www.vites.com/index.php?main_page=product_info&cPath=99&products_id=672&zenid=qirc89h1cfckq8c9vegc030hn4
Berberine is another strong anti-bacterial that has taken hold in the diabetes II community as it also helps one process glucose better and lowers fat/raises muscle tissue. Needs to be taken in 3 doses of approx 400mg throughout the day. And, may not be the best one for digestive issues. You’d just have to try it to see.
I also take Cats Claw on a daily basis and have for a very long time (couple years). It also has anti-microbial properties. In addition, Turmeric, but it is difficult to absorb, so you need to take a lot and the suggestion is taking it with black pepper to help the absorption.
I would think that all of these things might be a long term alternative to the MP, but of course, there is no science regarding this. I have tried all of these things and they have improved my overall health. I don’t have any diagnostics to indicate that I had high bacterial overload in my body (don’t have any diagnostics to the negative either, just never tested inflammation or D levels). I had some localized joint pain in thumbs and hips), general body stiffness and tendon/ligament pain in addition to some localized (in thumb and one finger) arthritis. Whatever I’ve done over the past 4 years has stopped it’s progression and alleviated the pain. I had leaky gut for a year about 3 years ago. It became MUCH worse and more frequent when I was on T3 only. It subsided completely about a year ago and my digestion is good.
Wish you good health.
Karen
Dr. Kresser – Do you accept phone consults? I am in New York. Thanks you.
I have been fighting fatigue and inflmation along with weight gain since I had my daughter in 2000. My THS levels in tests show “normal”, but my endocrinologist has been digging with lots of tests for almost 3 years trying to get to the bottom. Armorthyroid gave me Graves Disease type symptoms, and just T4 alone was not effective. A few months ago, we tried adding T3. I felt great for about two-three weeks and then-BOOM! Right back to where I started.
Issues include: IBS (gluten and dairy casin as main triggers), achey fatigue and stiff popping joints, fogginess, high blood pressure with edema, asthma, B12 anemia, allergies, low sleep oxygen levels, and female hormonal problems.
My latest blood test results show that I have very high blocking T3 and almost no free T3. My cortisol levels are at .1 – one of the lowest my enocrinologist has ever seen. I also have experienced low levels of C and D when he tests for vitimain deficiency.
My cycle is so heavy that my OB is considering DNC or even up to hystorectomy, my pulmologist has tested me for sleep apnea and found that it wasn’t happening (hence, he did find low oxygen levels – 75% – and can’t figure out why. The ABG test he ordered was normal).
My naturalpath seems to think it is all food related. Every time I go on a diet I lose weight for a couple of weeks and then STOP. Any any food intake over about 1500 – 1600 calories results in weight gain. That should sound normal, except that I weight 260 and should have to eat 2300-2400 just to maintain that weight.
All of of these great doctors mean well, but I can’t help thinking there is some underlying problem that ties it all together. I have been reading up on tyroid diseases and treatments and discovered the Stop the Tyroid madness site as well. I get conflicting info. I would appreicate any input you might have and would be willing to share my test results with you if you think it might help somebody. Goodness knows, I have a lot of them.
Thanks.
Oh Jay, your story just breaks my heart. There is a better book on thyroid issues called, Why Do I Still Have Thyroid Symptoms by Dr. Datis K. He goes into the autoimmune issue as well…which is what you would experience if taking dessicated thyroid like Armor or Nature Thyroid.
It sounds like you need to treat your low adrenals. Also, the true connection between adrenals and thyroid is in either the pituitary or hypothalamus…and you need an endocrinologist to run those tests (reg drs cannot run them for whatever reason).
You did not mention if you had your RT3 levels run. That is important in a case like yours…we make too much RT3 (which will block the receptors if too high) in response to some other underlying chronic illness.
Also the D test…which is also an endocrine hormone…the 25-D test is similar to a T4 test in that it is the storage form. To truly assess your D levels you also need to test the active form of D which is the 1,25-D test. In response to an underlying chronic bacterial infection the body massively converts the non-active 25-D (the thing they test) into active 1,25-D (the thing they don’t test unless you insist) and then too much active D will dock in the thyroid receptors as well and display the T3 in them…leaving you very hypo thyroid even with plenty in your blood stream. They call this a Vitamin D Revesal Pattern.
One underlying issue could be late stage Lyme Disease…esp if you have the Vit D Reversal pattern…unfortuately the screening test they run for it is woefully inaccurate (only 35% chance of catching a known positive). There is a better test run through Igenex. Not saying it is that, just saying that could be below it. It could also be viral, parasitic, or fungal in nature as well.
There is also a new-er thyroid called Tirosint…it is a T4 with NO fillers. However, an underlying condition will cause more RT3 to be produced.
So my reccomend is to get the RT3 levels checked and the Dual D tests of both the 25-D and 1,25-D to see if you cannot find out what may be behind your issues. The dual D would be indicative of bacterial in origin…and thus the likelihood of possible Lyme.
I would like to second the things Faith said. I would also concur that you still don’t know the underlying core problem. It took me almost a decade of suffering to find mine.
I would only add that the vitamin D reversal pattern involves any type of macrophage Th1 inflammation and is not limited to bacterial. A classic example are certain autoimmune diseases.
I would strongly urge some reverse T3 results, and also C3a and C4a markers. Not to mention ANA and other related markers. Get a doctor that goes in with the mind set that your immune system is out of whack and either there is an infection, an autoimmune disease, or both. And get some information.
A good LLMD can make a reasonable Lyme’s diagnosis and will use clinical not just lab results. But then again Lyme’s is tricky to treat. I had one doctor who thought I had Lyme’s, put me on the protocol and all it got me was abx destruction of my esophagus and stomach. Turns out the result was a false positive. When I went to an actual LLMD who was tops in my area, he said he did not have Lyme’s and to be honest he must be right or being on the high glucocorticoids for my autoimmune disease I would be toast.
Also my advice is stay away from the Marshall Protocol. That may work well for sarcoidosis but that is about it. Otherwise you can risk severe problems. The MP people come off almost like a cult and that really bothers me as a scientist since they willfully ignore any research that conflicts with their theory. They also base most of their arguments on in silico simulation on the computer which I guarantee are problematic (that is the area of specialization I spent the last 13 years on).
Best of luck to you and God Bless!
Thanks for that extra information, David. Do you know if it is possible to be tested to see which of the Th1 or Th2 variant of autoimmune disease one has? I’ve got subclinical autoimmune thyroiditis (Hashimotos). Since I read about the possibility of a Vitamin D reversal pattern, I’ve put my weekly 50,000 i.u. dose on hold.
Th1 and Th2 are different components of the immune system not categories of autoimmune disease. Autoimmune testing needs to be done by a specialist. Try to see if you start off by seeing an rheumatoid arthritis doctor or an endocrinologist and see if you can have some of the basic biomarkers I mentioned done. As well as basic hormonal workup. If some of the biomarkers light up then maybe you can get referred to an immunologist. Then they can pursue actual diagnosis. My autoimmune disease is so rare I had to go a very roundabout route to get the right tests.
I think 50000 IU is never a good idea since 70% or more of the immune system is in the gut. That being said though ingested vitamin D3 is a problem for me, my body loves the sunlight. Other ways may be a sublingual vitamin D. But you have to get both the 25OH and 1,25 tests and work with a doctor.
Thanks for that, David. My understanding was that there can be a dominance of either Th1 or Th2 in autoimmune disease and that the dominance can be attenuated or potentiated by certain items e.g. green tea for one dominance and say, echinacea for the other. Must have a chat about the biomarkers with my boss who’s a immunology laboratory scientist. I was assuming I would be one of the 8% of Hashi’s who don’t have other forms of autoimmune diseases as I’m pretty asymptomatic. Just trying to stay that way…I’d love to know why 50,000 i.u. of Vit D is never a good idea since 70% or more of the immune system is in the gut. But I don’t want to pester with too many questions…At 43 degrees south, we don’t get a lot of sun after March till September. I got it up a whopping 7 nmol/L after 9 days hiking this summer.
Sure you are right. Though most of the common autoimmune diseases are believed to be mediated by Th1 type cytokines. But I was using the term Th1 do not which component of the immune system. I think though the issues of dominance are actually very complex and while certain studies involving supplements may be suggestive of how they affect the cytokine subclasses and their expression, again I think the whole issues is much more complicated.
50000 IU is given as D3. In that form the immune system in the gut looks at it as inflammatory and if bad enough response can alter NE profiles as well. Maybe vitamin D3 sublinguals are an option?
Cheers for your reply, David. We are only allowed to buy Vit D here in 1000 i.u. dosages so it will be pretty expensive compared with the big government subsidised dose. Maybe I could cheat and break up the tablet! Or buy the right kind of sunlamp…
The little known thing about Vit D is that it is in actuality an endocrine hormone and not a true vitamin…and like most endocrine hormones western medicine is rather stupid in how they test for it. The usual test for D is the 25-D test…and this is the NON-active, storeage form of D (sort of like T4 for thyroid)…when a person has an autoimmune issue which is also likely caused by some sort of bacterial/viral/fungal/etc infection…there is an interesting issue re Vit D…when a bacteria is present, the body makes a chemical that over-converts non-active D to its active form the 1,25-D (comparable to T3 re thyroid). Since drs only test 25-D…and 25-D “looks” low…they suggest supplementing it…but this is like if one is low T4 but extremely high T3, supplementing T4…it is silly and doesn’y make sense. Normal people do not tend to have true low D…and so it warrants, I believe, getting a dual D test to ensure you are truly low before supplementing…and that means testing both the 1,25-D and 25-D…to see if you are one who has the Vit D Reversal Pattern. And why this is important is because D is a steriod and an immune suppressant.
I have had hypothyroidism for 12 years. During this time I was treated with only T4 meds. I felt better, but was never at optimal health. My T3 levels would always show in the bottom of the normal range. I started on T3 meds with a lowered dose of the T4 meds four months ago. I am a different person! I have not felt this good in 12 years! My hair is thickening for the first time since my 20s. It has made a difference in my life! I recommend the book: Recovering with T3 by Paul Robinson.
Hi, I recently got bloodwork and seems I have low T3, normal T4, and high TSH. probably started a long time ago but just now being addressed. Dr gave me Synthroid. 2nd day started to feel better but got nose bleeds 4 days in a row. stopped taking the 6th day. Nose bleeds stopped. Then was given Naturthroid. 3rd day in, major nosebleed. Stopped of course. told its not a side effect. both of those meds caused me to feel dry. even in my nasal cavity. What to do? So now I’m researching. Anyone hear of this happening. I’m afraid of what to do next.
Thanks
Wow Joanne, that is an interesting (and perplexing) response to thyroid hormones.
Not sure if you still have your thyroid (I do not)…and it seems wonderful that your dr is trying to treat the low T3 (they usually do not it TSH and T4 are fine). That said, it is a bit perplexing to me that the drs solution was to treat by giving you more T4…but it is the standard of care so I guess it makes sense given the context of the way they do things…even though it makes no sense on a practical level.
T3 is the active hormone and the one you need…and it would seem that you are not converting enough T4 into usable T3…and the body generally has a reason for this. Malnurishment can cause this, but so too can an underlying illness cause this. The liver is the main place that T4 is converted to T3…or RT3. The body will make increasing amounts of RT3 when there is an underlying health issue. The RT3 is not usable and will dock in receptors so as to prevent T3 from docking. Even people with adequate T3 levels can make too much RT3 and remain hypothyroid despite adequate levels in the blood.
You may want to consider getting your RT3 levels tested (be forewarned drs do not like running it…thanks to the current unfortunate standard of care). And, you also may want to consider having the dual D testing done. They normally only run the 25-D test (this is roughly like thyroid’s T4, the storage form of D)…but the more important one is the 1,25-D test (also one that they do not like to run)…the 1,25-D test is like thyroid’s T3…the active D. Too high 1,25-D can also dock in the thyroid receptors.
Drs hate to give people T3…but you may want to consider asking for that. After all, what you are low in is T3. And at least to me, that seems the logical place to start.
Re the nose bleeds…have no idea…but did get the same thing from an herb used to treat Lyme disease. The dry feeling may be a nutrient def…although I cannot seem to recall wich one…and my sinuses are super dry far in. You may get relief from the saline used in netti pots…they sell some with saline packets that when flushed with that feel great relief from the dryness.
Hope you can find something that helps.
I have been diagnosis with just about every thyroid disease that has a name. Different Dr different treatment, times in my life hypothyroid was “in” and other times it was “out” of favor. There was a time that I was told your depressed, a time when it was hormonal, sleep apnea, narcolepsy, it goes on and on. I am 54 now. First time I was treated for hypothyroid was when I was 11. I am still overwhelmingly fatigue. I remember when I was 11/12 having nightmares about running in slow motion. That is what my life was like. I was always smart, got my college degree, got the right job and excelled in my career, although the whole time I was extremely fatigue. The ppl who commented about biking and running, I never had that kind of energy. The days I worked out at the gym I came home and went to bed immediately and usually was late for work the next day. After having a child at 34, I hit a all consuming fatigue, I never fully recovered. I quit my job and became a achy, fatigue mom and wife. I had to push myself constantly to do the things I did. Now at 54 I do not have the pain I use to have, I still am fatigue. I found the biggest relief is the use of progesterone.I have used it off and on for 20 yrs. It helps a lot with the muscle pain and sleep. I still search for answers to my fatigue. I currently am re-visiting the use of thyroid and iodine.
I am a 37 yr old female with a lot of symptoms that is very confusing to me. My symptoms are; fatigue, thinning hair, excess hair, thinning skin, lack of muscle tone/muscle loss, irregular menstrual cycle, Pms, dizziness, nausea, depression, excess urination especially at night, brain fog, difficulty concentrating, don’t feel awake till 11am – and probably more I can’t remember. I went to a holistic DO because my gyn said all my tests were normal. The holistic dr. sent me for labwork and I have (FREE T3 = 2.4 pg/ml , Thyroglobulin Ab =24 iu/mg, FREE THYROXINE = 1.28 ng/nl, TSH = 1.65 uiu/ml, HIGH SENSITIVITY CRP 7.7 mg/L , and saliva Cortisol tests shows low Cortisol until late evening where it levels out.) My tests seem to indicate as these articles Low free T3. The holistic Dr. prescribed me 30mg of Armour thyroid and I got so sick off this, chest pain/anxiety that I never experienced, increased dizziness, increased fatigue. She said it was a low dose so try it every other day, the symptoms decreased but not completely, I called the pharmacist and then stopped the medication. This DO is now telling me to go back on it. My father was diabetic type II but my glucose tested low, I have hypoglycemic tendencies. Before changing my diet I would eat an omelet with salad and get dizzy and weak after. I don’t think my symptoms are being caused by my thyroid, I think as this article suggests that my symptoms are a result of something else. I am trying to find out what that something else is. Hypoglycemia is a pre-diabetic condition, could that cause this? I have high inflammation, I am overweight. I have lost 30 lbs. but I urinate 3-5x a night so I am also fatigued from sleep interruption. My daily life is greatly affected. In the past when I told Dr.’s I was fatigued they put me on antidepressents, when other symptoms appeared they said lose weight. I am so disappointed in the medical profession. I am also disappointed in this holistic dr. who is telling me to go back on Armour after I told her it made me sick. I am going to and endocrinologist next Thursday but I fear I won’t get answers from them either. This article is also complex and I don’t know any Dr’s that might even be able to help me with this b/c the article says Dr.’s don’t understand FREE T3 syndrome. If anyone knows Dr.’s in Pennsylvania that would help with this please post back. Thanks,
Hi Irene,
I am so sorry that you are going through all this…and some of your symptoms sound very much like my own.
Re the Armour thyroid…not sure where natural drs got the idea that dried out pig thyroids were natural or good for people…Armour Thyroid is made by Armour Meats (you know, Armour Hotdogs). The law requires slaughter animals to be killed before their 2nd birthday…however, the industry slaughters all just before 1.5 years due to that they feed these animals so much endo hormones to grow them bigger, faster, fatter…that they would die from hormone overdose at around 1.5 years. As well, anyone who have thyroid autoimmune…their immune system will outright attack the thryoid cells in the dessicated thyroid…as it made you very sick is suggestive of this and is wrong (in my humble opinion) for your practioner to tell you to stay on it. In addition, Armour tends to change fillers and have been known to use fillers that supress thyroid action.
If you have low FT3…then two tests you may want to have run are the “Reverse T3″ or RT3 as well as the dual D tests…25-D (which they normally run) and the 1,25-D (the more important one). If either or both the RT3 and 1,25-D are high this is indicative of an underlying bacterial infection. It will also lead to the situation where your thyroid levels look normal…but are unable to get into the cells to help.
There is a better thyroid hormone (that I would hope natural drs would rx instead) is called Tirosint…it is a T4 only and have no fillers…however, you may need to get special permission to get insurance to cover it.
As to whether or not it is an endocrine issue exclusively or not…anytime the body is going through illness of any nature, the endocrine system tends to respond. And it does seem like your endocrine system is responding.
I also have felt very poorly after eating…and have had no answers for why that is.
My suggestion would be to look for integrative drs in your area…they combine things like nutrition and supplements as well as conventional medicine…and they are the most likely to consider the low FT3 and /or high RT3 and 1,25-D as issues than endos or general practioners do.
OMG this is exactly what I went through! I was heavy and lost a lot of weight intentionally and never felt well after, constant hypoglycemia, peeing like a race horse, fatigue, everything like you. what has cured me after being sick for 2 years? PROGESTERONE. not the creams, they didn’t work. Oral Prometrium. I was diagnosed with Estrogen dominance (lack of Progesterone) I tried for almost a year on topical creams they did nothing. not even the prescription bio identicals. within a few days of taking 200 mgs oral Prometrium I started feeling better. now I have to take a small amount of estrogen as I am Menopausal, and I am finding balance. I actually had to stop working I was so cold and exhausted and weak. I do have to take a small amount of NDT (Thyroid by Erfa in Canada) but I’ve been able to cut back already and it looks like I wont have to continue with it much longer. have your hormone levels checked.
Hi Anita, re estrogen dominance, just wanted to add a bit…sometimes there can be an enzyme in the GI tract that will take the estrogen that was marked for excretion and and re-put it back in the blood stream. Not sure where I found that bit, but I believe in searching re the liver’s role in thyroid conversion.
Irene, Progesterone is the hormone that helps balance blood sugar levels. I bet dollars to donuts you are very low in this hormone.
I have been struggling with health issues for a significant amount of time. I am given a diagnosis and then my physician says no, I do not have it after I test positive for it. The disease is Sjogren’s Syndrome. Which the blood work came back with a high ANA in a Sjogrens Pattern. I am also being diagnosed with nodules in the lungs, they seem to disappear and then I have new nodules that replace them. I have been watched with CT scans for about 5 years. Also, new nodules in the liver, and kidneys. This concerns me as I have heard that T-4 converts to T-3 in these organs.
My T-3 had tanked about 8 months ago, at first the GP did nothing. I was then told by Rheum. my problem is metabolic. I went to see an endo. I was given T-3 and the first day I felt wonderful. Probably for two weeks I felt great. But had some GI issues with the T-3. I have noticed slight palpitations while on T-3 and my great feeling of increased energy, and increased appetite has stopped again. I was having severe weakness, with shortness of breath and just feeling as though something was seriously wrong. I am concerned about the amount of nodules showing up in my organs and I am greeted with a blank stare and I never receive information as to what this can be. I am thinking cancer and or Sarcoidosis. I am seriously sick and tired of the medical profession and blank stares. I keep working toward getting my life back and there is always a setback. I thought the T-3 was the magic bullet. It was for a short while and now noticing some weakness and shortness of breath again. I moved from a large metropolis to a small mountain community which has really thrown a monkey wrench into everything.
My mother had a pituitary tumor and her kidney failed without warning. Or they just weren’t paying attention. Is there any hope in ever finding out what is really wrong with me? Whatever it is, it has affected every organ system, from the eyes, to the skin, hair, nails, kidneys, lungs, liver. I have low D-3 which will not respond to supplements. Yada, Yada, Yada, My values are TSH: 20.29; Free T-3: 1.7 Pg/ml; Free T-4: 1.32 ng/dl. The prior test of the Free T-4 was slightly high. Any thoughts? Or is it wait and see?
I have Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia I have all the symptoms of Low thyroid. When I try to take thyroid meds: I have tried all of these treatments: ( Cytomel, Synthroid, Compounded T3 SR, Armour Thyroid and the first two together) At first I seem to feel better, have more energy and I just have a better outlook on life and can cope with things better but after awhile it seems to increase my low thyroid symptoms plus add some new symptoms. I have the same reaction when taking progesterone.
I have had severe breakouts like boils on my chin, armpits and groin area. One on my chin in which I had to have lanced it became so severe and had to have IV antibiotics. I also start having small, painful nodules which started in my abdomen, but now are in my arms and legs when I take the thyroid meds. I start itching in my ears and the right upper shoulder blade and have headaches.
Anyone out there experience any of this and have any answers? I am desperate as I really feel I need the thyroid meds. My bloodwork shows I do, but just can’t seem to tolerate it when I try it.
Thanks,
Desperately Seeking Help
Make sure your Iron, B-12 and D levels are optimized before trying the medication. I have parasites that cause itching and they can interfere with thyroid so have those checked as well.
Hello
I was wondering if you have any idea about the expected time it takes for the thyroid gland to return to normal functioning after coming off liothyronine. I have gained a large amount of weight in the short month or so that has passed since i stopped taking t3. My thyroid was normal before, i took t3 for weight loss under the false impression that the rebound effects would be minimal. Iam extremely worried that i have damaged my thyroid permanently. Any info would be appreciated.
Many thanks
I don’t have any answers for you, just more questions. How long and how much T3 were you on?
Karen
I’ve never heard that you could come off T3 with minimal effects. At the very least you have to wean yourself off…SLOWLY. Have you considered the possibility that you did/do have a thyroid problem? Did you ever have your Free T3 tested?
Ok…so some things to think about. You mentioned your thyroid levels were normal before taking the T3…any chance you had them tested while on the T3 as well? <—This would tell you the most about what you are facing. IF your thyroid levels remained normal on the T3, then this is a pretty clear indication that your thyroid system is working well. However, if your T3 levels were high while you were taking it…then there is more cause for concern. <– This would indicate that your thyroid system is not responding well.
The sad truth about thyroid is that too much thyroid can also make you gain weight…and feel tired and fatigued as one would if low.
If your levels stayed normal on the T3, this means that your thyroid system started making less to compensate for what you were taking. If this is the case…you will want to wean off the T3 to give your thyroid the chance to make more.
If your levels were high on the T3, my guess is (and this is not medical advice), that you will feel much better stopping it. That said, you will probably want to check your thyroid levels every now and then through the years.
The concern with taking endo hormones (of any kind) is taking so much that the gland stops producing any…and if stays like that a while, then the gland can atrophy. It doesn't sound like you are there.
Hang in there.
Hi all, thanks for your replies, much appreciated.
My t3 has never been tested unfortunately. Only TSH and t4. My results were normal a year or so ago but are now indicative of hypothyroid according to my doc. And i did not get any tests while taking t3. The shocking part was how quickly i put weight on once i came off t3. Literally 7 kgs in 3 weeks. I didnt even know that was physiologically possible
I can hardly get up the energy to get out of bed and my usual exercise habits have fallen by the wayside because of this and also because i feel too self-concious to get to the gym now.
So i have been prescribed 50mcg of t4 per day for now. Does t4 also require a long tapering off period if i were to come off it down the track?
Thanks
Hi Helena,
The issue with taking any endocrine hormone, is that the body is extremely self-regulating…which means, whatever you take your body will make less. The danger of this, and of casual rx’ing that some drs do…is that as they raie doses, the gland may stop making any altogether…and the risk is atrophying the gland…or gland death.
It sounds like you are very hypo-thyroid…and yes, the weight gain can be phenominal. Yes, will be the same trouble (or even more so) with the T4.
TSH is the pituitary request for thyroid hormone. T4 is the storage form of the thyroid hormone and has a much longer life in the body. T3 is the only active usable hormone but does not live long in the body. The liver is the primary converter of T4 into T3. It is very likely that the pituitary will tag the T4 you are taking and lower accordingly…meaning, slows down its request for the thyroid to make any. When TSH gets high…meaning is asking for a lot…drs assume you need more, but it can also mean that your pituitary is having issues.
People who have multiple endo issues (ie adrenals etc) more likely have a pituitary issue or hypothalamus issue than a thyroid or adrenal issue.
To get a clear picture of what is going on you need a full thyroid panel…however, this condensed one will help as well…TSH, FT4, FT3, and RT3. You may also want to run the dual D test of 1,25-D and 25-D. D is also an endo hormone and like thyroid, they tend to only want to test the non-active storage form (it is a wonder that they can help anyone at all).
For what it’s worth, my T3 needs fluctuate (I no longer have a thyroid)…when I take too much, I gain weight (despite being hyper-thyroid)…when I take too little, I get depressed. Rumor used to have it that Jullian Michaels (Biggest Loser) was on synthroid…if so, she is the only person I have heard doing well on thyroid hormones. The lesson I took from all that I went through…is that man has yet to immitate nature.
What is likely happening is that your thyroid is making less to compensate for what you were taking…I am unsure how to help one’s thyroid to function again…other than careful slow tapering to allow it to catch up.
Again, so sorry that you are going through all this…something my dr often says, the body is really very ressilaent…hang in there.
Sorry i forgot to say i started t3 (tertroxin) at 20mcg then went up to 80 for about three weeks then back down to 20 for about two weeks before stopping.
And the t4 i have been prescribed is eltroxin
Wow, I’ve never heard of a doc prescribing T3 so casually, or even for weight loss…period. Docs in the USA are reluctant to prescribe it for thyroid. 80 mcg is an awful lot to take in a day. Did you take in one dose, two doses, three doses or four doses. I would take at least 60 mcg in 4 doses for a week or two and reduce by 5 or 10 mcg every one or two weeks. Also I would consider a more responsible doctor. In some ways I wish I had a doctor who was so free with T3 but I am sure I would be more cautious. Where in the world are you?
My 16 year old daughter was tested for iodine deficiency and also thyroid issues. She did the iodine load test and her doctor has put her on 1 iodoral each day. Her body was producing the thyroid hormone but her T3-T4 was low. So he put her on Armor Thyroid medication. She is on 30 per day. She also takes Vitamin D-3 and 200 mcgs of selenium. After reading some of your info and am really concerned that this might be destructive to her overall health. She struggles with her weight, but eats a very clean diet of vegetables, lean meat and low glycemic fruits. She consumes complex carbohydrates like brown rice and gluten free pasta in very small amounts. Her basal temperature was low before she started taking the medication 93.6. Her temperature now is up to 96.7. Please let me know what you think
Hi Gina,
Well I am probably not the best barer of thoughts on this…but will offer my two cents anyways.
The issue with iodine is this…the only way that it gets in one’s cells is on the back of a thyroid hormone. If your daughter’s thyroid levels were good…then she has enough iodine. Iodine does not support the thyroid…the thyroid converts iodine into something our body can use.
The issue with selenium is that both too low and too high selenium have exactly the same symptoms. Most do not know this, but 2 Brazil Nuts a day will give all the selenium one needs…and unlike taking a supplement, the body will not OD on food sources.
There are many reasons for low thyroid and low D…and supping thyroid and D will not remove the cause. A very usefull couple of tests to get would be RT3 and 1,25-D along with the usal 25-D. When one is sick, for instance, the body slows down thyroid production.
The 25-D that drs run is the storage hormone…the 1,25-D that drs do not like to run, is the active form of D. In the presence of a bacterial issue…the body will over-convert storage D into active giving what is known as the Vit D Reversal Pattern. That said, active D docks in the very same receptors as thyroid…meaning, too much active D will cause a hypo-thyroid situation even if there is plenty thyroid hormone in the blood…because it prevents it from docking in the receptors. RT3 will do the same.
The issue with Armour…that I doubt natural-type drs will get anytime this decade…is it comes from Armour Pigs…as in Armour Hot Dogs. Slaughter animals that must by law be slaughtered before their second birthday are actually being slaughtered at 1.5 years due to massive endo-hormone-giving to grown them bigger faster fatter…and they would die of endo hormone OD by age 1.5 years. So…Armour Thyroid is dried out slaughter pig thyroid tissue…not necessarily thyroid hormone. It is unlikely that same drs rx’ing this stuff would tell you it is ok to eat hot dogs….and yet, they give the tissue that has been OD’d on hormones. That said, there is a new…better (for people who are senstive) T4 med called Tirosint…it is T4 with no fillers.
Sorry that I don’t have the most upbeat thoughts to offer…but hope these are helpful anyways.
I’m in a bit of a pickle here in Canada. in my province (Ontario) they discontinued the Reverse T3 test and I simply cannot get it. my tsh and other thyroid tests come back normal, albeit low end free T3. I’ve not been tested for antibodies or shbg the docs said they wont do it. I’m on disability for what my GP calls Chronic Fatigue and prescribed SSRI’s, which i refused. I basically lost 120lbs by not eating very much and crazy exercise (turbo fire every day) which led to me being very anemic, and overtraining syndrome. Then at same time Menopause hit me like a ton of bricks and along came Adrenal dysfunction and severe hormone imbalance, diagnosed by a functional med specialist/obgyn. I’m on bio identicals after dealing with Estrogen dominance for over a year. Finally figured out what is helping (testosterone and progesterone ) but I’m still freezing cold hands and feet and fatigued. I know I need thyroid meds. I am on adrenal support now for a year. it has helped stabilize my temps which run stable but low at 97.4 and do climb up to 97.9 but that’s it. What should I do? all other blood tests are normal, my iron is very good now that I have been Gluten free for 5 months and my vitamin D levels are good. I am stumped. my doctor is considering slow release T3. I’m scared though of making myself worse. but I have no inflammation, no infections, I eat super clean/healthy, no more hypoglycemia now either, but very slow heart rate, normal BP (was lowish before adrenal support which is herbal)
I am stopping vitamin d3 supps for a while to see if it helps in any way.
any thoughts? I’ve been “sick” for a year and a half. its gotta be the thyroid?
further to above, I also gained 34 lbs in the past 5 months despite eating only 1300 calories or less of Paleo/gluten free, although I do need to eat more carbs than is recommended but I dont overdo it.