• Tom Robinson

Voices of Courage: the thyroid gland and its essential role in mood and functioning. Maddie's story

A couple of months ago, I gave a talk at pony club camp for a group of young children and teenagers.


I shared some of my miraculous bipolar disorder recovery and remission story and gave them lots of information about warning signs of mental illness, triggers, danger points, and coping strategies.


The talk went really well, and they listened intently which was fantastic. There were also lots of questions afterwards which was especially gratifying, because young people today must feel comfortable when openly talking about their struggles with mental health and illness.


But there was one conversation which resonated most deeply when a young girl who was helping there, called Maddie, approached me afterwards wanting to know more about the high dose thyroid treatment, which essentially saved my life. For full details see here.


She shared her own thyroid story and explained how it had caused huge disruption to her life. I found it fascinating because her experience draws so many parallels to my own nightmare battle, and raises many of the same themes and contentions.


We were both amazed to find that we had eventually been treated by the same endocrinologist who works in conjunction with my incredible psychiatrist in London.


Miraculously, we are now both fully functioning, symptom-free, and back to our authentic selves; we owe these incredible doctors a huge debt of gratitude for getting us better.


I asked Maddie if she would write something for me to include on this site, and she very kindly agreed.


It has taken me a while to upload this post because I have been suffering with the aftereffects of shingles... Revisiting the horror of the past through my writing has clearly been too traumatic! I am now much better and pleased to be adding this post today.


The following is an account of Maddie’s experience in her own words.









Introduction


I was diagnosed with an overactive thyroid (autoimmune hyperthyroidism) when I was 8 and was prescribed a drug called carbimazole to stop my thyroid working.


I was then given a drug called levothyroxine (which is a synthetic form of thyroid hormone) to supplement the dosage of hormones I needed.


My blood levels were monitored through regular blood tests and my dose was adjusted up or down if my levels weren’t quite right. However, I never hit a perfect dosage and I naively assumed that it was normal to be regularly increasing or decreasing the amount I was taking.


Compared to other children my age, I got run down a lot more easily and this prevented me from doing some of the things I wanted to do. Despite this, I carried on, acting as though I didn’t have a condition, and didn’t suffer from too many other symptoms.


When I got to the age of 16, we were told by NHS doctors that carbimazole can’t be taken if you get pregnant later in life and therefore it was the perfect time to have my thyroid removed.


I was given the choice between drinking radioactive iodine, or having it surgically removed (a full thyroidectomy). The surgeon assured me that it would all be very straightforward and once the thyroid was gone, I would just take the same dose of levothyroxine for the rest of my life, and everything would be normal.


With hindsight, I just cannot believe that we went along with this very drastic suggestion, but, as is the case for many others, we trusted doctors, and at the age of 16 I had my thyroid completely removed.









Side effects and problems


The last 8 years since surgery have been a total rollercoaster. During this time, I’ve known that my thyroid hormone levels were wrong because I’ve felt either hyperthyroid (as if everything in your body is in overdrive; hot all the time, fast heart rate, losing weight, on edge, anxiety, not sleeping), or hypothyroid (underactive thyroid; slow movement, no energy, depressed, weak skin and hair, just wanting to sleep all the time).


This has resulted in many return visits to my GP, having blood tests, and then being told to adjust my dose.


It was only in the past few years that I started to lose my faith in the healthcare that I’d been receiving all those years because I never found a happy dose where everything was stable as I’d always been assured it would be.


I saw a couple of different doctors who had nothing useful to suggest. So, in the end, I put it to the back of my mind, and tried to get on with my life.









Breaking point


Sadly, sometimes it takes for you to get to your lowest point before you finally say something isn’t right, and I finally reached that stage in the autumn/winter of 2020.


The combination of a stressful time in a graduate job that didn’t work out for me, along with being told to lower my dose (despite feeling horrendously hypothyroid and as if my dose should have been increased), combined with being prescribed the pill by my GP, was the mix of elements my body needed to shut down like never before.


I have since learned that the pill lowers your absorption of thyroid medication so shouldn’t be taken at the same time of day - this wasn’t mentioned by the GP and I’m pretty sure she didn’t know this either.


I didn’t leave the house for about a month and spent most of my time in bed feeling absolutely miserable and as if nothing mattered anymore.


I’m the type of person who can’t go a day without exercise, it keeps me sane, and being active makes me happy, so feeling this low and lethargic was a sign that something significant had to change.





Finding my own way


My thyroid ‘epiphany’ came when I started doing some online research into the condition and found a very concerning amount of other people struggling with the management of their conditions as well.


At around the same time, I discovered a genuinely life-changing book called ‘Be Your Own Thyroid Advocate’ by Rachel Hill, which I would highly recommend to anyone with a thyroid problem.


Rachel experienced great difficulty in getting a hypothyroidism diagnosis and then went through the same problem of not feeling well on the prescribed medication but being told by her GP that she was fine.


In her book she discusses the factors that can affect thyroid medication absorption, including: the best ways to take blood tests, how taking T3-containing Natural Desiccated Thyroid changed her life, as well as many other essential insights for those suffering with thyroid problems and complications.









A warning to others


Having had a thyroid condition since I was 8 years old, I sadly don’t remember a time when I was ‘normal’ and didn’t have to take medication. As a result, I don’t have the ability to compare my current feelings to how I ‘used to feel’ which has probably made this whole process more difficult to manage.


However, having become more educated about my condition in recent years, and since I now feel so much better, I can now clearly see how mismanaged my condition had previously been.


For example, I have now learnt that calcium and caffeine greatly affect the absorption of thyroid hormones and it is also best to have a blood test for these hormones before you’ve eaten anything or had any caffeinated drinks first thing in the morning. For the most accurate results, it is also important to take the bloods before you’ve taken your thyroid medication.


Over the sixteen years that I’d been having blood tests to monitor my hormone levels, none of this was ever mentioned to me. I would wake up in the morning and have a coffee, along with breakfast and take my pills at the same time, so it is no wonder that my blood results have never been stable. They may have looked in the right ‘range’, but I won’t have been absorbing anywhere near as much as I should.


I have also since read about people putting hyperthyroidism into remission through lifestyle changes such as adopting a gluten free diet. I’m now perturbed that, instead of trying such simple things that could have worked and allowed me to have a functioning thyroid, doctors told me that the only option was to remove it.


This is something I will now have to manage and live with for the rest of my life, and I will always have to take medication – I try not to dwell on this, but it concerns me when I think about how many people this has already happened to, and, without warning and education, will happen to in the future as well.


I also now know that the NHS thyroid blood tests I’ve had since I was 8, measure the TSH and T4 hormones only and, without getting too complicated, T4 is the dormant hormone that gets converted into the active hormone called T3 that your body can use.


T3 is never measured in NHS blood tests and so even if your blood levels look perfectly ‘in the range’, your body may not be converting much of it at all to T3 and therefore you’re barely functioning. This is because T3 is required for essential processes like metabolism, heart function, bone health, digestion, and brain function, along with many others.


Although our conditions are different, this is exactly what happened to Tom too, since his thyroid conversion problem (the underlying cause of his bipolar disorder) went undetected for two decades on the NHS.


It only hits me now how important thyroid hormones are for the body and mind to function and how many things can go wrong if you aren’t getting the right level. I know, for the sake of other sufferers, that it’s important to share our stories.





A fresh approach


I eventually decided to take matters into my own hands and did some finger prick blood tests at home (from Medichecks) that measure T3 levels. As expected, mine were on the floor while my other levels were within range.


From this, I decided I needed to be prescribed T3 but would require a doctor who would be able and willing to prescribe it. I was referred to a specialist endocrinologist from a doctor who specialises in integrated health whom I found through my extensive internet research and, after months of trying, I finally started taking T3 at the beginning of this year.


With my body so starved of the right hormones for so long, it took a few months to feel completely better but I can honestly say it has changed my life.


Looking back to how sad and lost I was for such a long time, I am so thankful that I finally found a doctor willing to prescribe me the medication I needed. I could go on about this subject for far longer than most people would read this, but the difficulty to get prescribed T3 is what needs to change and the entire subject of prescribing this medication is contentious, but I feel very passionately that it could transform so many people’s lives.


After hearing Tom speak at Woodland Pony Club, I was fascinated to learn how the thyroid is implicated in bipolar disorder too. I’m not comparing my hyperthyroid and hypothyroid symptoms to the extremes of bipolar disorder and other mental illnesses, but there are certainly parallels that can be drawn and, from hearing about how thyroid medication has helped Tom, I feel strongly that our stories speak for themselves.


We both believe that these types of treatments would benefit hundreds of thousands of other people and hopefully this can be achieved.


Thank you for reading this, I haven’t spoken about my story in this way before, but I hope it can bring some help or hope to those people who need it.


***



A huge thank you to Maddie for bravely speaking out for the sake of other suffers.


If you would like to know more about this story or about my own and the thyroid/bipolar connection then you can contact me through the homepage of this site.


Please share this story so that it can help to warn others of the importance of specialist care and treatment for thyroid related conditions.


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com






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