Experiences with T3 treatment - part two

As I write this I have a few misgivings. I don't really know what's going on you see. I can only share my own personal experiences and I don't want to mislead anyone and the fact is, at the risk of repeating myself, I really don't know what's really happening with me at the  moment.

However, I promised an update on the T3 situation so here it is. How things appear to stand, right now.

If you haven't read Part One then you probably need to, or this post won't make much sense.

As reported in Part One, on reducing my T3 meds initially I didn't really feel a difference. I was surprised and delighted. As the days went by I noted that really there seemed to be no change. I didn't feel 100% normal but I didn't feel worse than before the change. So far so good.

But over time I began to wonder if my brain had become a little more foggy..... I'm still wondering that.... but I don't know...it's hard to tell.  I am learning that for me thyroid symptoms are subtle and changes take a long time to become apparent.

I have a belief that perhaps T3 medicine helps my brain function more clearly. Partly this is based on my memory of when I started taking T3 alongside thyroxine.  I remember our first British Thyroid Foundation London event back in April 2011 which was a just a day after I started taking 20mcg daily of T3 (for almost a year prior to that I had been on 10mcg which I thought had helped me, but maybe not that much), I was thrilled at the time by how much more energetic and on the ball I felt during that event and yet I noticed that although I was able to stand up straight and talk coherently and manage the event effectively, my brain felt like total mush during Mark Vanderpump's presentation, I literally couldn't absorb information, nothing stuck, facts just bounced off me and it was like I was an untuned TV or something, kind of full of static!

Here I am welcoming everyone to our first event in #April 2011, Judith Taylor and Mark Vanderpump seated on right

But then when we did our next event, when I had been on the increased dose for a while, my brain was working fine, I could understand what was being said easily, as well as doing the stuff I needed to do to make the event go smoothly. I was so happy, I felt close to normal and people there commented that I seemed so much better. 

Sadly I then had my thyroxine reduced (which seemed like a good idea at the time as I believed it was the T3 that was  helping me and with a TSH of less than 0.05 it seemed reasonable to aim to get that up a bit, to avoid long term bone and heart problems) and slowly over the next few months I ended up seriously mushy brained again. Sigh.

Those events are not my only two frames of reference but for me they seem meaningful. Maybe they are, maybe they're not.  The truth is an elusive animal. Evidence can be misleading. There is the whole Vit D scenario to consider, as outlined in previous posts.  Writing this post has made me think it is worth reconsidering the timeline of events and symptom changes to consider whether there are other factors I should be more mindful of.

Anyway, back to 2012 and my new endo recommending we reduce the T3 and see how we go, on the proviso that if I feel worse I get to go back to the original dose. It's now more than 2 months since the initial reduction. I'm now concerned that I seem to be in a bit of a daze. I have been ultra slow responding to comments on this blog, I have been short of work yet not felt able to summon the mental focus to do much about looking for more. I've felt muddled  and slow when doing the work I've had. I had a job interview and was very rambly and waffly in it (which seems like a sign my brain is foggy though could simply be I am out of practice since it was my first interview in 5 years). I feel I have been unbelievably slow and disorganised around my British  Thyroid Foundation admin and communications. Housework and hairwashing have felt like major tasks.

Yet on the positive side, I have lost more than half a stone (this is likely due to dietary changes which I will write about separately) and I am taking regular exercise! Actual exercise!! I'm playing badminton once a week and also going to weekly yoga and tai chi classes. The badminton is quite a full on aerobic work out, but I am  playing with ladies who are all older than me (it's a daytime club so most of my fellow players are retired and we are all women), so it's not as full on as it could be, but it is a proper work out. The yoga and tai chi are both super gentle, also mostly retired ladies in the classes, but the teachers are excellent and I can feel the benefits already. I actually feel quite confident that I am going to be able to increase my physical exercise and fitness levels over the coming weeks and months. Gently does it, pacing myself carefully. Avoiding the classic chronically ill person's pattern of doing too much as soon as I feel better and then knocking myself back.

So, to cut a long story short, am I better or worse??? I don't really know!!

I had more blood tests at the start of June and finally got the results this week (NOT impressed with that time delay thank you, Kent NHS). My new endo has now suggested that I cut out the T3 meds entirely until my next appointment with him in September. Basically the original dosage cut has not really impacted any of my numbers. TSH is still less than 0.05, T4 and T3 are still right at the upper end of the range, in fact they have both increased slightly.  I have decided to follow his advice. Today is day four of thyroxine only. I don't feel worse, I don't feel better, but experience so far tells me that it will be a while before I can really assess the impact. Trusting that he will let me go back on it if I am worse when I see  him next, or if I really feel worse in the meantime, watch this space.....wish me luck!

As always comments are positively encouraged, I'd particularly love to hear how other people have got on with T3 treatment, or just generally compare notes with other thyroid patients, or those suffering from other chronic illnesses

sendiing smiles :)

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.