As a pharmacist, I’m passionate about appropriate medication use and giving you the information you need to have the best possible outcomes… whether that is about diet, supplements, lifestyle changes or medications, I want to share what has worked for others with the hope that it will help you. I wanted to give you all some great information on alternative medication options for those of you who are having thyroid symptoms with the standard thyroid treatments.
I was very impressed with Paul Robinson’s book Recovering with T3.
Guest Blog Post From Paul Robinson
Izabella Wentz: Paul, tell us about the beginning of your journey with Hashimoto’s…
Paul Robinson: Well, I had no idea that I had a thyroid problem at all. I was about 30 years of age, and my wife had just given birth to our second child. It was quite a fast birth, and she and my newborn son were both fine. For some strange reason, I picked up the heart rate monitor that had been attached to my wife and put it on for a few minutes. My heart rate was forty-two beats per minute!!!! We thought the machine had broke so my wife tried it and hers was normal. We both realized something was wrong.
I was a senior manager in a research and development role, and I’d been struggling to do the same quality of work that I was used to doing for some time. I’d put a lot of weight on and was having a hard time remembering things, including peoples’ names. I had assumed it was stress related. But the low heart rate suggested a physical disease. I went to see my family doctor, and she ran a large set of tests. I was lucky because I think she must have suspected a thyroid issue. She ran TSH, FT3, FT4 and the autoantibody tests for TPO and Tg autoantibodies!!! It is unusual even today for a doctor to run the complete set of these laboratory tests without a lot of begging and pressure. I honestly think the entire set of laboratory tests ought to be run in the first instance if anyone is suspected of having a thyroid issue.
My results came back with a TSH of over 60, low FT3 and FT4 and very high TPO and Tg autoantibodies. My family doctor told me that I had Hashimoto’s thyroiditis and that I’d need to take Levothyroxine (T4 / Synthroid) for the rest of my life. I think she actually said something like, “You’ll just need to take this medication for life and you’ll be fine!” That turned out not to be the case of course. I was far from fine!
I had about 3 weeks during which I did feel a lot better (I can explain this now – this is a phenomenon that we frequently see when someone starts T4 or even when someone increases their dosage, but this improvement frequently doesn’t last. There is a simple explanation for it that I can explain at some point if there is interest). After the initial improvement, I went downhill again, and my symptoms returned. After many months of increases in Levothyroxine medication, and after my thyroid blood tests had become what my family doctor and the endocrinologist I was sent to considered normal, I was pronounced ‘cured.’ My TSH was in range, FT3 and FT4 were in range, but I had virtually all of the symptoms that I had, to begin with. My energy level was dreadful; I was not coping with stress, my weight was still an issue, I had multiple digestive system symptoms including bloating and food sensitivities (worse no on the T4 meds), dry skin, dry hair, etc. I still had hypothyroid symptoms, but my laboratory tests looked ‘normal’ according to my doctors.
This is so very common, yet my doctors were convinced any symptoms I had now were due to some other condition! How crazy is this? This is still what happens today, twenty-five years on from when I was diagnosed the same arrogant and very naive arguments are still being given to thyroid patients. There is a simple piece of logic known as ‘Occam’s razor’ that I think is so relevant to thyroid treatment. If a thyroid patient has a set of classic hypothyroid symptoms prior to treatment with thyroid hormone and then still has most of these symptoms after the ‘treatment’ then the most likely conclusion is that the ‘treatment’ did not work or was not the right treatment. The least likely conclusion is that the ‘treatment’ was a total success and that some other disease is causing the symptoms. This is especially true if the ‘other disease’ cannot be named, treated and cured. However, this very simple piece of logic is rarely applied, and thousands of thyroid patients are just simply left sick for years on thyroid treatments (often T4 based) that do not work.
I saw several different family doctors and many endocrinologists over the next six or seven years, and my thyroid hormone dosage was adjusted again and again but to no avail. I was very ill and began to have time off work. My career was being seriously damaged, and the impact on my family life was also significant. There is not enough time here to discuss the broader impact on an individual’s life, but the toll can be high. I did in fact permanently lose the career that I loved, and it did cause damage to relationships between my family and myself. Ultimately, the events that unfolded from poorly treated hypothyroidism had a part to play in my wife and I divorcing. The human cost of this disease can be very, very high. I always try to consider this when I talk to any thyroid patient.
IW: When did you decide to take charge of your health?
PR: It became obvious to me after two to three years after my initial diagnosis that for some reason the thyroid replacement hormone (Levothyroxine/T4) that I was given was not working for some reason. My background is science, and I’d spent my career in R&D. Consequently, my approach was not just to continue to change doctor and endocrinologist in the hope I would find someone abler but I also began to do my research. The way I went about this was mainly to buy endocrinology textbooks. I found out what textbooks doctors who begin to specialize in endocrinology were asked to buy during their treatment and I bought several of these. I also began to use the Internet (which was in its infancy but still had some useful information). I actually found that the endocrinology text books to be more valuable than any other source of information.
It seemed obvious to me from the reading that I did that simply being given Levothyroxine was no guarantee that the biologically active thyroid hormone T3 was going to be converted in a high enough volume from T4 based meds. I wanted to put this to the test and try alternative thyroid hormone treatments like natural desiccated thyroid and T3 (Liothyronine sodium).
The more I read on this subject, the more I was convinced that my symptoms were a combination of classic hypothyroid symptoms and symptoms typical of adrenal function that is too low (and especially low cortisol). However, having had all the usual laboratory tests for thyroid hormones and a Synacthen test for Addison’s disease and having being told everything was normal there appeared that no medical professional was going to be able to help me. I had been told that I had Chronic Fatigue Syndrome or M.E. and it was clear that the doctors I had seen were happier to give me a label than to help me get well.
By this stage, I was seven years down the road from diagnosis, and I was close to losing my job and my career. I had to do something or give up.
IW: How Did You Get Your Life Back?
PR: I got my life back by beginning to think and act for myself. I took responsibility for my health. I gave up turning up in a doctor’s office and handing over ownership for my health as I entered the room. If I saw a doctor for laboratory tests or to discuss something it was still me who owned my health and had 100% responsibility for it. My doctor might be able to help me, but I was the manager of my destiny.
Time is a critical resource in thyroid disease. Time can disappear slowly in small pieces, one piece at a time. Then one day five years can have gone by or maybe even a decade or more. Going for medical appointments, having laboratory tests, waiting to see if the latest T4 dosage change can be like the ‘death of a thousand cuts.’ Life is far too short and too precious to stay ill when there are perfectly good treatment methods available.
I began to search around for doctor’s who might enable me to try the alternative thyroid hormones that I thought might be helpful to me. I found some doctors who allowed me to do what I needed to do. This would not have happened if I had not taken ownership for my health, though.
Eventually, T4 was stopped, and I was given trials of natural desiccated thyroid medication and, when this did not work, I was prescribed synthetic T4 together with synthetic T3. None of these alternative treatments corrected my symptoms even though my thyroid blood test levels all looked perfect. I remained with symptoms that included: exhaustion, weakness, dry skin, dry hair and digestive system problems. My mind felt like it was in a mist, I could not think completely clearly and had low blood pressure. At the start of my illness I had put a lot of weight on, but as partial adrenal insufficiency became part of my issues, I lost weight, became weaker and began passing out.
I was eventually prescribed T3 only, and then I began to get well, but it took me three years to begin to know how to use T3 correctly. In total it took me about 10 years to recover from the start of my hypothyroidism. I lost a decade of my life when my children were young. It then took me another 10 years to be able to reflect on and communicate my experience with T3 and how T3 could be used safely and effectively. This work has led to the writing of my two books.
Sometimes T3 only treatment is the only one that will work, even if thyroid hormone blood test results look excellent when the patient is taking synthetic T4 or T4/T3 combination therapy. This conclusion is very clear to me from my experience and from communicating over the past six or seven years with hundreds of thyroid patients all over the world. Some issues cannot be seen through blood tests because they occur deeply within the cells of the body. In these cases, the biologically active thyroid hormone T3 needs to be present in high levels in the bloodstream with little or no competition from T4 or reverse T3 for enough T3 to become active in the cells.
The right thyroid hormone treatment alone is also not enough for many patients. Sometimes dietary changes and supplementation with appropriate nutrients are also required. Many systems in the body can begin to be less healthy after years of untreated hypothyroidism. Some of these may have led to the hypothyroidism in the first place. Treating the whole person is often required. Gut health, adequate levels of nutrients like iron, B12, magnesium, mitochondrial health, dealing with toxicity and many other issues may need to be looked at for some people to gain a full recovery.
IW: How do you feel now?
PR: I have used T3 only now for around seventeen years with some limited supported from my family doctor and endocrinologist. Hashimoto’s thyroiditis has destroyed my thyroid gland. Consequently, the 60 micrograms of T3 I take per day in four separate doses produces a rather strange thyroid blood test results even though I am perfectly well. My TSH is near 0 mU/L. My FT3 is between 8 and 9 nmol/L (top of my labs’ range is around 6.5), and my FT4 is near 0 pmol/L. Most family doctors and endocrinologists would be extremely unhappy with these results and say I was hyperthyroid or even suffering from thyrotoxicosis but I am not. At the cellular level, my body is getting just the right amount of FT3 I need, even though in my bloodstream it is high. This raises a fundamental point that is at the heart of many issues in thyroid treatment today. Laboratory testing of thyroid hormones and simplistic diagnostic work based on this is leaving many thyroid patients with chronic symptoms associated with hypothyroidism.The ‘Recovering with T3‘ book presents a safe, effective and systematic process for using the T3 thyroid hormone when other forms of thyroid hormone replacement have failed. This method covers basic diagnostic lab work that needs to be performed, supplementation with important vitamins and minerals and a detailed process that may be followed when using T3. Part of this process includes a radically new protocol for using T3 to regulate the function of the adrenal glands and help them to function properly without the use of any adrenal steroids (like hydrocortisone) or adrenal glandulars. This protocol is called the circadian T3 method (abbreviated as CT3M).
The CT3M corrected my adrenal function and enabled the T3 I took during the daytime to work properly. I got my health back, and in the process, I discovered how to use T3 optimally. The CT3M is a breakthrough, and it is now being used by thyroid patients worldwide, and in many cases, it is allowing them to recover their health after years or even decades of illness. Those patients using natural desiccated thyroid can also use the CT3M, as this also contains T3 thyroid hormone. I have now produced a second book called The CT3M Handbook, which discusses CT3M in far more detail than I presented in my first book Recovering with T3.
Many hormones follow a circadian rhythm with a pattern of secretion that is repeated every twenty-four hours and is typically linked to our cycles of sleeping and waking, or daylight and night. Cortisol is secreted by the adrenal glands, with a steady rise in production during the last four hours of sleep. For someone who gets up out of bed at 8:00 am, this means the highest level of cortisol production occurs between the hours of 4:00 am and 8:00 am. It is the rising level of cortisol that helps us wake up in the morning, with the highest level of cortisol in the bloodstream at around 8:00 am (for a typical person who gets up at 8:00 am). Cortisol levels then fall gradually during the day and are at their lowest between midnight and 4:00 am in the morning. The exact times may vary depending on when someone gets up in the morning (e.g. shift workers may experience a different circadian rhythm).
The Circadian T3 Method (CT3M) utilizes the circadian natural action of the adrenal glands and requires thyroid medication that contains pure T3 (so natural desiccated thyroid may also be used). Once the low adrenal function has been confirmed (ideally with a twenty-four-hour adrenal saliva test), then the CT3M may be used. The CT3M will not work if the thyroid patient has Addison’s disease or hypopituitarism (these conditions usually require lifetime treatment with adrenal steroids).
The basic idea behind the CT3M is to address low levels of the active thyroid hormone (T3) in the adrenal glands when they are producing their highest volume of cortisol. Once this process begins to work and the adrenal glands begin to function well, then the quality of the sleep that follows this circadian dose is often far better than the thyroid patient has been used to experiencing.
In recent years there has been research that confirms that T3 thyroid hormone peaks in the body when the adrenal glands begin to work hard in the early hours of the morning. These research findings support the ideas behind the CT3M. The research article is titled “Free triiodothyronine has a distinct circadian rhythm that is delayed but parallels thyrotropin levels.” and is published in J Clin Endocrinol Metab. 93(6):2300-6. June 2008. The research says that after TSH has peaked each day around midnight, that FT3 also peaks some hours later.
So, in a healthy person with a normal working thyroid gland, their free T3 levels will peak in the early hours of the morning. For those thyroid patients on thyroid medication, this is normally not the case, and thyroid hormones will be at a low point in the early hours of the morning. The CT3M is aimed at replicating nature and restoring a good level of T3 when the adrenal glands begin to produce high levels of cortisol.
A large number of thyroid patients have successfully used the CT3M over the past few years. Many of these patients had previously found that the only way they could cope was through the use of adrenal steroids like hydrocortisone or adrenal glandulars that contain steroids at lower quantities. When adrenal steroids are employed this causes the pituitary to demand less work from the adrenal glands. The consequence of this is often that the thyroid patient’s adrenal glands become sluggish and less able to work on their own. The CT3M often works well enough to allow these patients to slowly reduce and then stop the use of all adrenal steroids.
I’ve produced a post on my blog, which includes a video that explains more about CT3M.
IW: What is your advice for other Hashimoto’s patients?
PR: My main pieces of advice are
- Learn as much as you can – knowledge is power. Read books. Look at websites. Talk to other thyroid patients.
- Take ownership for your health. If you do not respond to standard thyroid treatment then recognize this as soon as possible and take back responsibility for your health – don’t just hand it over with a list of symptoms to your doctor and hope that they can fix you. The reality today is that most doctors who treat thyroid disease continue to rely heavily on thyroid laboratory tests to tell them what level of T4 based medication their patients should be using. For many thyroid patients, this will leave them being symptomatic. Thyroid blood tests show the levels of thyroid hormones that are circulating in the bloodstream. Thyroid blood tests do not show how effective the main biologically active thyroid hormone T3 is being within the cells (in the cell nuclei and the mitochondria). Only symptoms (like energy level) and signs (like body temperature) can show how the body is responding to thyroid hormone.
- Be prepared to have trials of other thyroid hormones like natural desiccated thyroid or T3 (liothyronine).
IW: What Kind of Resources Do You Provide for Thyroid Patients?
PR: Here are some resources available for thyroid patients considering using T3
- The Recovering with T3 book, which is available on Amazon, The Book Depository, Barnes and Noble and other Internet booksellers. This book provides a comprehensive background on T3 and its safe and effective use in the treatment of hypothyroidism that has not responded to T4 based medications (even though blood test results might be normal).
- The CT3M Handbook, which is also available from Internet booksellers. This book provides more information on the Circadian T3 Method of treating partial adrenal insufficiency (adrenal fatigue).
- My website: http://recoveringwitht3.com/, which contains a range of information on T3, my books, patient success stories and my blog.
- My Facebook patient forum/discussion group for thyroid patients who want to talk about the T3 use (and the use of CT3M if this is relevant to them):
- My book Facebook page, which is used to communicate any new information posted on my website and any new information regarding my books or my work: http://www.facebook.com/recoveringwitht3
- My YouTube videos and audio recording
The full list of blog posts can be found here.
The full list of patient success stories can be found here
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