Making Connections - why my normal TSH levels didn't mean I wasn't hypothyroid!
Hypothyroid diagnosis and wellness.
During my experience with Hypothyroidism I had many years of taking levothyroxine and yet still feeling unwell, or being completely unable to function well, whilst being told that my thyroid levels were 'good'. This is not so uncommon, and is experienced by a significant number of people whose blood tests commonly suggest that their TSH levels are “within normal limits”, even with levothyroxine supplementation.
I was prescribed levothyroxine after being diagnosed in 1995 – and gradually my dosage was increased over the following twenty years of my being hypothyroid, until me dose was finally equivalent to 150 micrograms per day in 2014, when I finally came off of the thyroid medication.
However, during most of those 20 years, my symptoms never fully eradicated and for many of those years, I silently continued to suffer the symptoms of hypothyroidism whilst being told by my GP after each blood TFT result that my thyroid was 'normal'. I complained that I still felt tired all the time, or forgetful, but was told my bloods were fine!
I know that there are a significant number of people whose medication really does work for them, and that really is great! I am sure that if my tablets had stopped my symptoms, I would not have continued over the years to try to find alternative ways to improve or heal my condition. It is indeed the failure of the T4 medication to change my symptoms that preceded this ongoing search for wellness that led me to look at alternatives – in nutrition, supplementation, alternative and holistic therapies and eventually to the energy techniques that enabled me to source the root cause of my own disease, and overcome the stress triggers that kept me ill for all of those years.
I assume that for the people who find that levothyroxine works for them, that it means that they do not experience the symptoms that I lived through for so long and outline below. I also acknowledge that if that tiny little synthetic T4 tablet had worked for me, I would possibly have walked a very different path in my life, not searching for alternative methods of supporting my body or looking for the elusive healing my symptoms continued to demand!
However, as I say, my symptoms did not go away, not even noticeably reducing for me to any degree that changed my experience of hypothyroidism from one of dully shuffling through life to living it dynamically and being fully engaged in it as I now am!
If, after being diagnosed as hypothyroid and prescribed levothyroxine you do continue to experience hypothyroid symptoms, whilst being told by your GP that your thyroid blood results are normal, please do continue to visit your GP and insist on further testing!
Arm yourself with the knowledge and information to show that you understand your condition.
Whilst this may be slightly intimidating or annoying to a minority of doctors, most will be prepared to listen to your thoughts and concerns!
Try to make a connection with your doctor whereby they will support you in trying to discover the underlying issues of your symptoms. A supportive doctor makes all the difference in trying to find the underlying causes of your condition. If you continue to ask for support and over time, do not feel supported or listened to, look for a second opinion - ask to see an alternative doctor within your current surgery, or to be referred to an endocrinologist, or if all else fails, consider changing to another doctor in a different surgery who might be more sympathetic to your needs.
Most importantly, remember that you alone know your own body and you know if you are functioning at your correct level of wellness or not!
Suffering ongoing Symptoms whilst on T4 - Levothyroxine
Whilst taking levothyroxine, the following symptoms continued for me personally:
The weight gain continued, despite my efforts to reduce calorie intake, follow diets and eat healthily.
Daily tiredness continued, afternoons increasingly became monumentally difficult to drag myself through – I often felt like I was walking through treacle backwards, with little or no physical energy at all to complete the most basic tasks. Even remaining awake from lunch onwards was increasingly difficult.
Additionally, I awoke each day as tired as if I never had slept a wink!
More physical symptoms included:
My hair falling out in handfuls (although thankfully I had tonnes of it, which made that harder to notice – unless you were my Denman brush!)
My eyes constantly drying out and later becoming affected by a further autoimmune disease! I was told I should expect to have further autoimmune problems – as one (Hashimoto’s) apparently was not enough – and doctors forewarned me that I, like all autoimmune disease sufferers was predisposed to having more!
My periods all but stopped
My sex drive diminished to almost non-existent!
The Brain Fog was a difficult addition to the physical tiredness, and I would frequently find myself only partially aware of what I was doing, or why I was doing it! Sometimes, I barely knew what was happening in my day until after an event occurred. To pre-frame this, I would remind you that this was before the advent of mobile phones and ‘alerts’ and ‘mobile phone alarms’ – which are, quite frankly, a god-send to hypothyroid people who find themselves running on a frosty brain-fog mental acuity!
Pins & Needles in my fingers, hands and up my arms
Temperature fluctuations - mainly towards being either 'cold' or 'freezing'!
Slow pulse / heartbeat
Along with these symptoms, my experience was one of being "partially aware that I was feeling only half-present". At one time, it became a frequent and unwelcome surprise that dates and appointments I had checked and registered in my various diaries at the beginning of the day had already occurred without my remembering to attend them! Sometimes within an hour of having checked and got ready for an appointment, I would ‘awaken’ from a type of mental coma and realize that the appointment time had passed!
I really understood in those days what life for a goldfish was like!
Although a goldfish didn’t feel the disappointment and self-disdain that I then experienced!
I can tell you that it is very difficult to explain to other people exactly how or why you have missed an appointment or date with them! More so if it occurs more than once!
I did however find that connecting with people and openly explaining my condition meant that occasionally my honesty was met with surprising compassion and understanding by a small minority of people - I encountered a couple of wonderful secretaries and individuals who took it upon themselves to personally telephone me to kindly remind me of my upcoming appointments!
Those simple deeds were real acts of kindness – and meant a huge deal to me at those times! Not only because it meant I got to my appointments, but because it connected me with the human race again! It allowed me to stand up and feel I was a real person, and not the shadow of myself that was constantly upsetting or annoying people!
However, there were also people who completely disregarded my apologies and felt justified in belittling me because of those lost appointments! Not that I blamed them for their frustrations – but I can honestly say that their frustrations paled in comparison to mine!
Sometimes I would cry at my inability to ‘function’ like a “normal human being!” and other times I scolded myself and told myself what a useless waste of a human life I had become!
The combination of brain fog and tiredness meant that my time-keeping and time awareness was increasingly impossible to maintain. This caused me consistent problems, because as we all know, modern life operates on a time structured basis – work, children’s activities, school drop off and pick up times; doctors and dentist appointments - the list goes on.
Our lives are defined and compartmentalised by our activities that sit within the boundaries of units of time that divide and define our day to day lives.
I often felt that my life was running in a parallel universe, outside of the usual experience of time.
I brought a small diary for my handbag. A larger diary for my desk at home, when phones began to have 'calendars' - I began to use them!
Despite all my efforts, I still would forget a large proportion of the time, in the space between 'preparing' for an event, and its execution!
Experiencing T3 and finding options
Throughout most of my hypothyroid journey, I was diagnosed and treated under my GP, with only a couple of months under the specific care of an endocrinologist. Specialist care was given to me once through my pregnancy and another time when I asked to be referred to an endocrinologist when I strongly felt that my GP was suggesting inappropriate care (but that’s another story!!)
My THS levels were monitored by regular blood testing, and were kept “within normal” range. Small increases over the years from 1995 to 2011 led to an increase in my levothyroxine dosage from 50 to 150 micrograms.
My GP was generally happy with my bloods and said no more needed to be done!
The only other support I received for my thyroid condition was found through my own research and experimentation in the areas of diet, nutrition and holistic therapies. (See other blogs: reflexology and thyroid disease. Reflexology and gall stones / gall stones and the thyroid). Mainly due to the need I felt to become well again - not only because I believed my body could and would get well if given the right circumstances, but because my daily experience of life was not as joyful and dynamic as it had been before my illness.
Then something amazing happened, when thankfully in 2011, I went to the USA for a few months.
Whilst there I discovered Armour thyroid!
WOW!
Armour thyroid completely changed my symptoms and for the first time ever, I sensed myself awakening from the brain fog and even began to lose a couple of pounds of weight without any change in eating or exercise habits!
The difference I felt within my body and my mind was incredible!
It was noticeable immediately I started to take the tablets, and I felt that I was able to function not only like a normal person once again, but with a renewed energy and a life-force that I had not experienced in a long time!
The difference in this medication was that as a natural supplement it combined the thyroid hormones I required in both T4 and T3 form.
The uptake of T3 into my cells was a revelation to me!
I truly realised that my body and my cells were able to function correctly if they were getting what they needed!
Two months later, on my return to the UK, I was prescribed levothyroxine again, which sent me right back to my earlier symptoms!
It was hard for me to accept this backward step, and I visited my surgery to discuss my experience, but my GP said that we were not able to get Armour thyroid in the UK, and sent me away with my same old prescription.
Luckily at that time, a friend of mine, who was also hypothyroid, told me about a new drug she had just discovered that was available in the UK: liothyronine!
I went back to my GP armed with the information on liothyronine – and asked if he would prescribe it for me.
To my great surprise and happiness he agreed to prescribe the liothyronine, and for the next couple of years I took a combination of levothyroxine and liothyronine.
It was a good balance for me compared to taking levothyroxine alone, the introduction again of T3 into my system, all be it in an artificial form, improved my symptoms substantially, but it didn’t give me quite the amount of energy I had experienced with Armour thyroid!
However, it took me out of my worst symptoms, and into a period in my life where I felt I was able to function as a fairly 'normal' human being!
Liothyronine vs Levothyroxine (T3 vs T4)
Thyroid supplementation is normally in the form of ‘levothyroxine’ in the UK, which is a synthetic form of T4 only.
It does not contain any form of T3.
Liothyronine is a synthetic form of T3 (triiodothyronine), which can be used instead of, or in addition to T4 (thyroxine) for hypothyroidism, myxedema coma and is also sometimes used as an augmentation to antidepressants for depressive disorders.
T3 is the active form of the two tyrosine-based hormones (T3 & T4) that are both produced by the thyroid gland.
T4 is the less active form, with T3 being approximately 4 times stronger than T4 when working at the active cellular level.
TSH levels should normally indicate if there is not enough thyroxine in the bloodstream, and acts in a negative feedback loop between the thyroid, the pituitary and the hypothalamus, to read if there are sufficient levels of hormones in the blood. If the thyroid hormone levels are too low, the release of the TSH hormone is triggered by the pituitary, indicating to the thyroid gland that it needs to create more T3 and T4.
Therefore, if the TSH count is registered as ‘normal’, the assumption from most GP’s is that there is no thyroid issue.
However, this is only a correct assumption if for that individual there is no other problem in the conversion process of their thyroid hormones or elsewhere in the endocrine chain of command.
Specialists are learning more and more about the functioning and complex interactions of thyroid hormones within the body; how different enzymes, minerals and other hormones interact and can potentially interfere with the production, conversion and utilization of the thyroid hormones in our metabolism and bodily functions.
Understanding T3 to T4 Conversion
Before looking at the different aspects that can affect T4 to T3 conversion, we should quickly look at a couple of the key factors and differences between these two thyroid hormones:
The thyroid requires Iodine to create the thyroid hormones. Whilst a lack of Iodine is a factor in less developed countries, it is less likely to be a causing factor of hypothyroidism in 1st world countries; however, with more and more intensive farming it may be more important to ensure you are incorporating good quality Iodine sources in your diet. There are differences of opinion between experts about whether iodine can be a cause of 1st world hypothyroidism.
The thyroid cells are the only cells in the body that can absorb iodine. They then utilise the iodine absorbed from food and water combined with tyrosine, which makes T3 and T4.
These thyroid hormones (T3 and T4) are essential in our metabolic processes (the conversion of oxygen and calories to energy at a cellular level) and are used in every cell throughout the body. This 'use' of the thyroid hormones to produce energy is what we mean when we discuss their importance in our 'metabolic processes'. It is what we mean when we describe the hormones as being 'active' - simply, it means that they are working at a cellular level in the body.
The thyroid produces about 4 times as much T4 as T3 (in a ration of 4:1), but the T3 is approximately 4 times the strength of the T4 when 'active'.
There is a larger proportion of T4 in the blood stream, as this form of the hormone is less active – and in normal circumstances, it should be the T3 which is taken up at the cellular level in order to utilise the hormone to convert the incoming substances of oxygen and calories etc. into energy. The T4 is almost a ‘reservoir’ of the hormone that the body creates in a less useable form. This means that it is ready in the blood stream to be converted into T3 when the body requires an increase in energy at the cellular level, such as in high stress fight or flight situations where the blood does not have a big enough supply of T3 immediately available. This conversion of T4 to T3 can happen in various places including the thyroid and the liver. This is how the body works cleverly to 'bank' the important enzymes and elements required for metabolic processes, ensuring we have a reservoir of hormones available for whenever we might need them, whether that be for normal day to day activities, or in extreme circumstances, such as extreme physical activity or unexpected stressful situations.
Free T4 IS a useable form of the T4 hormone, which is why it is sometimes measured in blood tests after any abnormal TSH results.
We now know that the TSH is only a very small part of a much larger picture and it is fair to say in todays medical world that the assumption that TSH will provide sufficient information about our bodies use of the thyroid hormones is a naïve measure, which assumes every other organ and function is working 'normally'. However, unless you are lucky enough to have a GP who is very knowledgable about thyroid issues, or you are referred to an endocrinologist, or you undertake private testing, the chances are, in the UK, that you will only be assessed by your TSH levels.
Experiencing hypothyroid symptoms when the TSH reads as normal often means that there is a problem in the conversion from T4 to T3, from the inactive form to the active form of the thyroid hormone.
There are other hormones and disorders which are intricately connected with the conversion of these thyroid hormones and can therefore affect the conversion process.
So if for example, you find that you are experiencing hypothyroid symptoms and your TSH levels appear normal, it may be well for you to address some of the possible associations below. Some of these you can address by making lifestyle changes, whilst others may need additional professional guidance, or further blood tests. It might also be wise to ask your GP to do further adrenal testing, as raised cortisol levels will have significant affects on your thyroid functions - as seen below:
Looking after your liver can be beneficial for T4 to T3 conversion, as the liver is largely responsible for this conversion! Your liver may not be diseased or show any problems, but if it is working very hard to detoxify harmful substances in your food, for example continuously working to rid the body of excessive alcohol or pesticide residues, or any combination of these factors, the thyroid hormone conversion can be adversely affected.
Regular liver flushes and eating fresh organic produce is beneficial to support the liver. It is well worth getting professional advice on how to perform a liver detox supported by a herbalist. There are also online support groups and liver detox guides available.
Supporting your gut by addressing any digestive issues is also essential, as the minerals and micronutrients in our food are part of the conversion process and assist the release of energy from our foods and oxygen into the cells. Also, T3 does not become 'active' until it is activated by the enzyme called 'intestinal sulfatase'. This relies on healthy gut bacteria. Eating alkaline forming foods and plenty of fresh healthy vegetables can help with keeping the digestive tract in good order. Add pro-biotics and ensure that you are taking in your fibre requirement and addressing any issues such as candida or leaky gut.
Inflammation in the gut can reduce T3 by raising cortisol levels. Cortisol decreases active T3 levels, whilst increasing levels of inactive T3.
Selenium is especially important in helping the body to convert T4 to T3. It is used in the activation and deactivation of the conversion process of T4 to T3, using the rare amino acid selenocysteine. Similar to cysteine, the selenocysteine has an addition of a selenium atom in place of the usual sulphar. Proper nutritional advice is required as selenium poisoning can occur if too high doses are taken.
Impaired neuronal deoidinase activity can affect the Hypothalamus-Pituitary-Thyroid axis and deiodinase activity follows circadian rhythms - therefore varying with body tissue and seasonal changes. For this reason T3 and T4 therapy is suggested by some, but it is worth checking whether we might introduce individual lifestyle interventions to support our own biology within the natural circadian rhythms.
Different body tissue conversion of T4 to T3 occurs at different rates - therefore this is another indicator that for some people, combined T3 and T4 therapy may be preferable.
Raised cortisol levels inhibit deoidinase activity, interfering with conversion, and therefore ultimately leading to low T3 levels as the T3 reserves are used up and conversion impairs replenishment of the active T3.
Hormone receptor insensitivity is also caused by raised cortisol levels, meaning that even if T3 is in the blood, it is being inhibited from accessing the cells and becoming 'active' on a cellular level.
High Cortisol levels also increase the excretion of iodide from the kidneys - reducing the amount of iodine available within the body.
Adrenal fatigue is a key area to assess before looking at thyroid health - as cortisol can have such a high impact on many areas of the thyroid hormone production and conversion and uptake processes.
Key areas to address for self-regulation
Essentially we may need to address lifestyle issues that relate to
The effectiveness of our liver function: reducing alcohol consumption & increasing water consumption
Toxins in our Food
Toxins in our hair care and skin care products & even our makeup
Fluoride in Water & Toothpastes
Pesticides on our food
Chemicals in our food and drinks: specifically processed foods
Our Circadian Rhythms: becoming more attuned to the natural 'flow' of time and aware of how we can align to it
Reducing Cortisol production: May mean addressing lifestyle or work-related stresses & adopting stress-reduction solutions
Improving our Nutritional Intake through high quality supplementation
We may also need to address other medical issues, such as:
Liver Function
Gut Health: Leaky Gut
Inflammatory Bowel disease
Autoimmune issues
Resources
http://www.thyroiduk.org.uk/tuk/research/T4-T3_Combination_Therapy.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC185993/pdf/jcinvest00018-0293.pdf