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 stor