This is The Story of How Paul Robinson Recovered from Hypothyroidism, Became a Thyroid Patient Advocate and Wrote His Books
I’ve had Hashimoto’s thyroiditis for about thirty years. I have now turned 60.
During the first seven years of my illness, I was on Levothyroxine (T4, Synthroid) only and my symptoms hardly changed at all, i.e. I still felt chronically hypothyroid.
I saw about five or six endocrinologists during those early years and received the same response: I was told my TSH, FT4 and FT3 were all normal and that my symptoms could not be due to the thyroid treatment – which was apparently fine.
The fact that my health was perfect before the Hashimoto’s thyroiditis and was dreadful since the ‘treatment’ with T4 seemed to elude the specialists I saw.
I felt that this really very simple logic was totally lost on them – very frustrating!
I was offered anti-depressants because they thought that my distraught pleadings with them to get to the bottom of my problem were obviously psychological in nature. I was offered a place in an ME patients’ support group because I was clearly going to have to live with my symptoms and accept that I had ME as well as thyroid disease. For any USA based reader, ‘ME’ is what we call chronic fatigue syndrome (CFS) in the UK.
I was offered a lot of things but no solution and no real explanation (that I believed).
The so-called specialists that I went to see (some paid for by myself), said very unhelpful and I thought quite stupid things to me:
“Your lab test results are in range, so there is nothing wrong with your thyroid hormones.”
“You are on the correct treatment, so your symptoms are due to something else.”
“It is chronic fatigue syndrome or ME, so you are just going to have to learn to live with it.”
“No, you don’t need extra t3 to get your level higher – it is already in range.”
“FT3 in the lower part of the reference range is still fine.”
During the end of that period, I began buying endocrinology books, using the library and borrowing books from one or two friends on endocrinology and the thyroid.
I began educating myself. I had to.
My health had deteriorated by this point because the T4 medication was not working. I had severe fatigue and weakness. My career, which I loved, was close to ending as I was more often not in work due to my worsening health.
Things got worse. I was not able to walk far and spent most days laying on my sofa or in bed. I could barely get up the staircase at home. I had to go to sleep for at least four hours in the middle of each day in order to cope. I felt so ill and dizzy with low blood pressure that I used to blackout regularly (most days). I had digestive system issues. I was weak. I had lost over 30% of my body weight due to low cortisol. My bones were sticking out. My doctor and the doctor at work both had concerns about how my health might deteriorate further. No doctor could understand what was going on or how to help me.
I began to believe that I was actually dying and that it would be only a few years at most before this happened. I was forced to put plans in place so that when I died my family would be looked after as well as possible. This was when I was about 36 or 37 years old! I did lose my job and my career. Everything was black.
My life at home was also a train-wreck. I was married and I had two young children. I felt too exhausted and too ill to be a good parent and as a consequence, I lacked the patience and the ability to provide my children with the care and attention that they needed. It was an extremely bad time for all concerned. There have been terrible long-term consequences of this impact.
I had to find out how to get myself well because the medical profession had failed to help me.
The gradual increase in knowledge paid off because I began to develop an understanding of what I thought might be happening. I began to use the Internet to see what relevant research might have been published.
I realised that something had fundamentally changed within my body after the advent of Hashimoto’s thyroiditis. The change had altered the way my body is able to process and utilise thyroxine (T4).
I knew that I needed to confirm this with a trial of liothyronine (T3). In fact, I knew that a trial of T3 was the ONLY way to confirm what I thought was happening, as there was no test for it.
The deterioration that had already occurred had sabotaged my career and my family life. In fact, the medical professionals I had spoken to previously told me quite clearly that I would just have to accept my ill health as it was.
After a lot of my own investigation, I managed to find a doctor who was prepared to offer a series of trials of alternative thyroid hormones.
After trials of natural thyroid, T4 + T3, and some adrenal support proved not to help one jot, I began to use T3.
Within two weeks of getting on a moderate dose of just T3 (and no T4), I began to see some small improvements.
There was almost no useful information on using T3 available at that time. So, it took me nearly three years to finally arrive at a T3 dosage that made me feel really well again. I only managed to do this because I kept believing that I could get well. I also learned very quickly that I had to be very organised, collect data and not make rapid changes. I began to learn that I would make mistakes along the way but I could rectify these. In working through this, I developed the basis of the protocol that is now described in The Recovering with T3 book.
During those years my knowledge of T3 and all issues surrounding its use grew exponentially. I gained information from numerous sources including my own personal experience with T3.
I obviously went back to see my endocrinologists and doctors when I first began to respond to T3. I was exuberant when I first felt the effects of the T3 thyroid hormone. I knew instantly that it was what I was missing. I nearly burst into the doctors’ offices. However, I was met with scepticism.
This scepticism was quite profound and there was little interest in my use of T3. I suspect that either I wasn’t believed (the ‘patients lie’ view) or I was viewed as a ‘statistical anomaly’.
One of the endocrinologists actually said I should not be on T3 at all, that It wasn’t needed. He said my symptoms had been caused by some other condition! The fact that they had gone completely on the T3-Only therapy didn’t shake his view! I found this type of thinking difficult to understand as it just is not logical. I never saw him again and I did not go back to T4.
I have been on T3-Only treatment for well over 20 years. After the first 3 years of working out a safe and effective protocol for its use, I began my real road to recovery.
I have witnessed huge numbers of people make full recoveries on T3 without any T4.
I take 60 micrograms per day of T3 and no adrenal medication, as I have corrected my cortisol level using my protocol for T3.
I have no FT4 in my blood test results and my TSH is suppressed to near zero. My FT3 levels are over the top of the population reference range but I am neither hyperthyroid nor thyrotoxic.
Blood tests – well, I could carry on saying a LOT about them. As soon as I was on only T3 and no T4, it became apparent to me and my new family doctor, and my new endocrinologist, that the conventional method of managing dosage via TSH, FT3, FT4 was not going to work. The fluctuating levels of T3 in the bloodstream from the individual T3 doses and the effect that this has on TSH, make using TSH or even FT3 too unreliable and unhelpful. I use a different method, all of which I will discuss on another occasion.
Oh! The other interesting thing is that if I take any T4 now it just interferes with T3 treatment and I go hypothyroid very quickly – something is still broken! I now know what that is – I will return to this another time.
One thing is very clear though that this is not a unique problem. I’ve spoken to thousands of thyroid patients all over the world with this type of problem who have resorted to T3 or T3/T4 combinations in order to get over issues like mine.
One of the most horrifying things is that NONE of my hypothyroidism problems were obvious through thyroid BLOOD TESTS.
All the problems were going on inside my cells and were never visible through the use of any laboratory blood tests.
I was not depressed.
I wasn’t psychologically disturbed.
I didn’t have ME, chronic fatigue syndrome (CFS) or Fibromyalgia.
I didn’t have to accept my ill health and just ‘live with it’!
All of the above ‘diagnoses’ that were given me were just plain wrong and if I had accepted them then I would still be ill now. They were more than ‘wrong’ – they were bad science, bad diagnostic work and not in the interest of the improvement of medical practices.
I had a problem with thyroid hormones that simply could not be seen through blood tests.
This problem was not diagnosed. The family doctors and endocrinologists that I saw in the first few years of my illness did not treat it and did not know how to treat it.
I personally lost what could have been my very best years. These were the years during which I could have developed a really successful and satisfying career.
More importantly, my young children were born and grew up during that time. I was not the father I wanted to be. There have been consequences to this that have been hard to deal with.
I will never, ever be able to consider thyroid disease without also thinking about the emotional damage that it can do on the person involved and all of those around them.
I doubt that I will ever completely get over the emotional damage that was done to me through lack of timely and correct treatment.
Very little appears to have changed in the intervening years. In fact, from talking to other patients, I’d say it was harder now to get believed and get treatment than it was back then – this is certainly true in the UK. Hopefully, this will improve over time and I am hoping that my book ‘Recovering with T3’ will play its small part in doing that.
It is a disgrace that so few people get adequately treated if T4 does not work. Even though I’m a guy, I have to admit that it brings me to the point of weeping to be in contact with so many people that are suffering unnecessarily.
Yes, many people do get better on the standard T4 treatment, but so many, in terms of pure numbers, are cast aside and have wasted lives as a result.
I am pleased for those people that do get well using T4 only. However, many people require natural thyroid or T4/T3 or pure T3 to actually recover their health.
All the various thyroid treatments do need to be available.
However, due to a variety of reasons most endocrinologists and family doctors still refuse to use all the available treatments at their disposal. Many of these medical professionals can be arrogant, inflexible, narrow-minded and unhelpful. The exceptions are rare and some of these are wonderful but they are needles in haystacks.
I will keep speaking about all of this. My books Recovering with T3, The CT3M Handbook and The Thyroid Patient’s Manual and this website are a part of my continued effort to communicate better ways to treat thyroid patients.
(Updated in January 2019)