This week was International Thyroid Awareness Week (ITAW).  Thyroid disease is massively under-diagnosed with over half of patients undiagnosed and aware they have a treatable condition.  The symptoms of untreated thyroid disease can be debilitating and even fatal in some cases.  The symptoms of hypothyroidism, which include depression, fatigue, brain fog and weight gain, are sometimes simply put down to “depression”. This is inexcusable in my view – a simple blood test is all that is needed for diagnosis.  Without treatment symptoms get worse and patients suffer needlessly.

To celebrate ITAW I supported The Thyroid Trust run a tweet chat, #ThyroidTrustChat.  It was a very interesting chat and there were a few key insights for me:

HCPs join patient chats

I had known some physicians were going to join the chat but I was pleasantly surprised by how many actively engaged.  They really contributed to a great discussion and were able to provide answers to some of the questions patients were posting.  Given the bad experience quite a few patients have with their own physicians around thyroid disease it felt great for people to see that there are physicians out there who understand the disease and the patients’s point of view.  With the physician participating it felt like a very balanced chat too.

Patients need to keep pushing

Not surprisingly we heard time and time again of patients suffering as a result of thyroid disease.  Unfortunately too often local GPs and endocrinologist are ignoring guidelines, which state that it is also important to focus on wellbeing and not just blood results.  This means that if a patient still has symptoms, but the blood results are within range, the doctor should continue to explore options and potentially amend dosage.  However too often doctors inform patients they are “fine” because they are in range, regardless of how the patient feels (which is often far from “fine”).  The message we gave was do not give up and keep pushing until you have your symptoms under control.

Ignoring the autoimmune side of the disease

This is one of my pet peeves in the UK.  I have hashimoto’s which is an autoimmune thyroid disease and I see myself first and foremost as an autoimmune patient, not a thyroid patient.  I never call myself a hypothyroid patient as what I have is more than just a thyroid disfunction.  However in the UK there seems to be very little focus on the autoimmune side of the disease.  There seems to be no focus on going beyond treatment, for example exploring lifestyle changes.

Many autoimmune patients (thyroid or other) will tell you that it is important to focus on a healthy lifestyle to reduce flare ups. Medication alone does not have an impact on whether you have an autoimmune flare up.  Autoimmune patients also can have food intolerances that cause flare ups.  In my case gluten is a trigger and I have seen my health return to near normal since I switched onto the Autoimmune Protocol Diet.  Patients are therefore suffering unaware that they may have more control than they realise.

#ThyroidTrustChat tweet

Provide more instructions

During our tweet chat I was quite disappointed by how few people appeared to be participating.  This is reflected in the analysis of the chat too.  However when I was putting together a report for the Trust I spotted that there had actually been a great deal more engagement – but by people not using the #!  This meant that neither I or anyone following the chat had seen their responses, and also their engagement was not captured in our analytics.  This was very frustrating as there were some great comments shared.

The lesson from this is to provide a great deal more in terms of instructions and keep posting them during the chat too.  We had provided a tweet chat guide based on the one I wrote a few weeks ago.  We had also shared instructions again at the start of the chat.  However clearly people had not read these.  Firstly there were people who just jumped in with their own questions, rather than answer the one’s being posted by the Trust.  Then there were those essentially having a 1:1 conversation with the Trust because they were not using the #.  We did share a reminder half way through but by then it was a bit late.

#ThyroidTrustChat tweet

Despite this however the feedback from participants has been really good and there have been requests to run another tweet chat.  I see great value in these chats.  They help patients share their experiences and advice.  Tweet chats are also a great way to raise awareness and share information, such as guidelines.  Finally they offer a great way to network with other patients or interested physicians.  I think we will definitely run another one – but this time sharing plenty of # reminders!

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