A patient’s point of view

I was recently involved in a workshop for a pharmaceutical product and one element we talked about was the emotional journey a patient goes on, and how digital tools played a role in that journey.  This really resonated with me as a patient.

We are of course all patients at some stage or other, but some of us are patients with chronic or long term illness which require on-going treatment.  In my case I have Hashimoto’s, which causes hypothyroidism, and I will need to take thyroid hormones the rest of my life.  My journey as a patient with a thyroid condition has been highly emotional, distressing and sometimes extremely difficult.

A patient will experience a whole array of emotions as they go through their own journey.  Mine started with joy when I was told I had hypothyroidism – I finally had a reason to my sudden and excessive weight gain.  Unlike in some other conditions I never really felt isolated, in part because I was very open on Facebook about my hypothyroidism, and this resulted in a surprising number of other friends also identifying that they had the condition. I also initially did not have many problems, it was only in the last year or so that things got worse and it was at this point that I would have been in danger of feeling very alone with my condition had it not been for Facebook.

As my condition and health deteriorated, the journey became more emotional and more distressing.  I put on weight again, felt lethargic and was constantly tired, and I felt depressed and low.  I was very miserable.  I also got increasingly desperate.  As an educated woman, working in the healthcare industry, I knew that something was not right with my health – something was wrong.  As per my previous post I received absolutely no support (informational or emotional) from my then doctor.

In the days of old I would have been totally alone at this point in my journey.  I would not have known that it was not right that I was feeling this ill. I would have been totally dependent on my doctor’s response (good or bad). I have no idea how I would have coped with the despair, the depression and the fear (and believe me thinking that you may spend the rest of your life feeling exhausted and listless is very frightening).

Fortunately today we have the internet and social media.  It really was a game changer for me and my disease. I already knew that my symptoms were common for hypothyroidism but what confused me was that I was already on a very high dose and should have felt fine and full of energy.  I was terrified of lowering my dose and feeling even worse (and putting on yet more weight) and yet this is what my blood results indicated I needed to do.  I was also scared that it was just me – that other patients coped fine and it was just my body not working properly.

Through a support group on Facebook I very quickly found out I was not alone.  In fact far from it.  It turns out there are many patients on treatment but having issues with their health, their symptoms and their doctor’s response to their concerns.  It was such a huge relief to find out I was not alone and to have fellow patients to share my story with and to be able to connect with people who felt exactly like me.  The emotional support that this virtual engagement provided was immeasurable.  I no longer felt alone and the feeling of despair went down as I felt there were answers and there was hope.

It was through this support that I found the strength to question my previous doctors’ response and seek further treatment.  I paid, out of pocket, to see an endocrinologist in the UK and I armed myself for that appointment with as much knowledge as I could, from the internet, in order to ensure I received the optimal treatment for me.

My appointment with Dr Morris was like chalk and cheese compared to the Spanish endocrinologist.   He was supportive, listened to me and provided some solid advice, which included bringing my dose down.  The way he advised me took some of the fear out of lowering my dose.

The rest of the fear was taken away because, through my online searches, I had found out that in a very small minority of patients being on too high a dose can cause the same symptoms as hypo even though they are hyper.  Turns out I was one of this small minority.

The other thing Dr Morris did was confirm what I had suspected – my hypothyroidism was caused by Hashimoto’s disease.  Following the Spanish endocrinologist’s failure to tell me what was causing my hypothyroidism I had gone online and done my own research using my blood results.  Through this research I had self-diagnosed Hashimoto’s but it was also great to get it confirmed by a physician.

Armed with this confirmed diagnosis I did more research.  Through support groups and blogs I found out that most Hashimoto patients have some form of gluten intolerance and that eliminating gluten could help improve health outcomes.  Not one of the doctors I had spoken to over the last couple of years ever talked to me about my diet and the impact lifestyle changes could have on my disease.  It was only through interacting with other patients online and doing my own research that I found out about the changes I needed to make to my diet and lifestyle.

As a result of my online research, I now no longer eat gluten and I have reduced the amount of goitrogenic food such as cabbage.   I am also very careful about getting enough sleep and staying healthy.  The impact this has had has been huge.  I feel relatively normal again now, and whilst I still get tired easily I no longer feel depressed or listless.

My emotional journey has now come to a point where I feel confident and hopeful.  Some fear still remains, for example how my need for ten hours sleep will impact my work and the fear that I may feel ill again in the future.  But for now, thanks to resources and information I found online, my main emotions are relief, happiness and hope.   I do not know where my patient journey will take me to next but I am certain I will find the support and resources I will need online.