Who are we with thyroid disease?

Sisters in law, Angela and Tracy, with Tracy's super supportive husband, Angela's brother, Gerry,
who all traveled from Hastings to our meeting in May

The London Team held a meeting with a difference on British 5^th May 2012.

Since we began last year we have wanted to do a meeting without an external speaker, to allow the maximum time for members to talk amongst ourselves. However, we felt that it might be challenging to structure such a meeting and ensure that everyone’s voice was heard and all would have a positive experience.

In the end we worked together to create a format that worked really well. We were delighted with the largely very positive feedback from attendees.

On arrival everyone was given a copy of the programme and a set of “ground rules” which the Team had worked out in advance and which proved to be popular with everyone:

We are all patients here

We ask everyone to be mindful of the following guidelines for this meeting:

·        Be supportive of each other – don’t be critical

·        Allow everyone in the group to have their say   

·        Don’t give medical advice

·        We are here to share our experiences and learn from each other but remember that what works for one person, may not work for others – so don’t try to push solutions onto others

·        No pushing un-orthodox treatments

For the first half of the meeting we all sat in a big circle (there were 33 of us) and everyone had a chance to introduce themselves to the group as a whole and to say how they found out about the event, what they were hoping to talk about in the meeting and anything else that they wanted to say about their condition and how they were feeling.  This worked really well, people were very open and supportive of each other.  

After this we had a relaxation session before the break. This consisted of a short guided meditation from the Expert Patient Programme course book, read by Team member, Allison Duggal.   Many of us have learned how using relaxation techniques such as meditation can help us to feel better on a day to day basis and we all enjoyed having the opportunity to sit quietly for a few minutes together and the meditation script, which described walking in a beautiful garden, was a lovely way to relax.

During the introductions several key themes had emerged as things that people wanted to talk about. These were:

·        Managing Symptoms

·        Psychological aspects of thyroid disease

·        Getting the most out of our health professionals

·        Living with Graves Disease.

We invited people to choose one of these topics during to break and to register for one of four smaller discussion groups that would take place in the second half of the meeting.

We had created some guidance notes in advance for the volunteer facilitators from the Team who led these groups. And we agreed in advance that each group would feed back to the wider group at the end.

The group discussions seemed to go really well. Everyone was keen to listen to everyone else and we all had lots to share.

The groups fed back as follows:

Managing Symptoms

This group talked about:

·        How in some cases a Vitamin D deficiency diagnosis and subsequent treatment had made a big difference for some of us and we encouraged others to ask for a Vitamin D test if they hadn’t had one already.

·        Many in the group found managing their weight could be very challenging though some hypothyroid patients reported they found it difficult to put weight on, most of us struggle to lose pounds.

·        The benefit of gentle exercise, particularly walking. We all thought the BTF Big Summer Walk campaign was a great opportunity to get groups of thyroid patients walking together and how nice it was to go walking or do other exercise with others rather than alone.

·        Ensuring medication is taken at the same time each day.

·        Avoiding alcohol as it seems not to agree with so many of us.

·        Good diet, although we were unsure what constitutes the best diet for thyroid patients and to what extent we needed to be mindful of goitregen foods such as soya.

Getting the most out of health professionals

This group talked about:

·        Using the guidance in the EPP leaflet to get the most out of consultation time.

·        Changing doctor is an option

·        Trying to see the same practitioner on each occasion can help as you can build up a relationship

·        Describing symptoms clearly rather than talking too much about feelings helps the doctor understand what is going on

·        Being assertive, without being aggressive

·        Asking questions and taking responsibility to understand our own conditions

·        Exploring different treatment options and asking for a referral if the GP has done as much as they can and we still feel unwell.

·        Kelp tablets can interfere with thyroid medication and do more harm than good.

·        How discovering shared symptoms in the discussion made them feel much less alone.

Psychological aspects

This group talked about:

·        GPs, colleagues and family members tend not to understand the emotional aspects of thyroid disease.

·        Mental slowness and memory problems are very worrying, we find ourselves wondering are they a sign of dementia or something else.

·        Difficulties around being a parent

·        Routines are helpful

·        It can be difficult to plan events

·        Concerns about appearance

·        Confidence often suffers

·        Walking, Yoga, Tai Chi and pacing ourselves can be helpful

·        Anxiety is worth overcoming – there is pay back

·        Group members were keen to have more access to relaxation, life coaching, dietician support and help with memory strategies to help manage the mental and emotional aspects of thyroid disease.

Graves

This group talked about:

·        There are lots of knock on effects of having Graves, such as: sinus problems, other autoimmune conditions, joint pains, palpitations and other symptoms

·        In many cases Graves Disease went unnoticed for years before being diagnosed.

·        Doctors often didn’t take patients seriously

·        Be persistent to get optimised treatment

·        Treatment for Graves is not a cure and people often don’t realise that at the outset.

·        Other autoimmune problems can manifest over the years

·        Doctors don’t give you this information, which creates confusion when further problems arise as they are not anticipated.

·        Not everyone gets the same symptoms.

While one person mentioned afterwards that she wasn’t comfortable talking about feelings without focussing on positive solutions, on the whole almost everyone said that they found the groups enjoyable and useful. We now plan to do more of this kind of thing at future meetings.

All of the groups reported that the discussions made them feel less alone. Peer support is a wonderful thing.

The groups also wondered whether BTF or BTA might consider funding some work into thyroid disease and nutrition in the future as this area is of such interest to patients and yet seems to be under researched.

We are excited that since this meeting we have been able to confirm Professor Colin Dayan as our speaker for our February 2013 meeting, on the subject of Thyroid Function and Psychological Wellbeing.