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.

Walking for thyroid patients - we did it!

setting off from Pierremont Hall for our epic walk to Ramsgate
L-R: Anna, Lorraine, Jamie and Karen

The walk was today! We had a great time, anyone who would still like to sponsor us can on:

Just Giving BTF London Team page

There are photos of the walk on that page too.  Don't we look delightful in our stunning BTF tee shirts!

I'm pooped now.

Would just like to say we will do this again next year, it was brilliant fun and such a great way to fundraise, get some exercise and enjoy good company. Let me know if you'd like to join us in June 2013.

We have raised over £600, I am completely overwhelmed by how supportive people have been. If you are one of the people who have donated, I know we've thanked you already, but thank you again. BTF is such a tiny little charity your support means the world. :)

I would encourage everyone to do a Big Summer Walk for British Thyroid Foundation if you want to do something positive to help thyroid patients in the UK. Details of how to organise your own walk can be found on the BTF site. 

Walking for thyroid patients - background

Last year we promised ourselves we'd do a sponsored walk to raise money for the British Thyroid Foundation, to help them support more patients, work collaboratively with the medical profession, provide more good quality, reliable information and to fund research into thyroid disorders... but we didn't manage it. We were too ill, too tired, trying to do too many other things, etc. It was a shame.

But THIS YEAR we are doing it. Our walk is this coming Saturday, 23rd June, from Broadstairs to Ramsgate, along the beautiful coastline in Thanet, East Kent, South East England, approximately 8 miles round trip.

Thanks to my fellow volunteer, Karen George, we are registered with BTF and all set to go.

I have been overwhelmed with the wonderful support we have had from friends, family, colleagues, fellow patients, not just in London but worldwide, we've even had a donation from the wonderful Mark Vanderpump, leading endocrinlogist who spoke at our first ever meeting!

If you would like to support us, with cash or a message, the Just Giving page is here.

Any amount given will be put to very good use and we will be beyond grateful!

If you would like to do your own walk for BTF check out their website for their Big Summer Walk campaign. Lots of people are getting involved and it's a wonderful way to get some exercise and raise money for a much neglected and very important cause.

We are really looking forward to our stroll, hopefully the weather will hold! Afterwards our walk I will post some more pics. The one above shows the last stretch, coming into Ramsgate with the Royal Marina in the distance..... I think we'll be quite tired and thirsty by this bit! Wish us luck!

Sending love and light

My experiences with t3 treatment.... part one

To anyone who's noticed how quiet I've been on here since moving house, okay, I'll come clean, it's because I've not been brilliantly well.

This post will only make sense if you know what TSH, T4( FT4) and T3 (FT3) are. So if you don't but are curious, all that is explained here.

I had my thyroxine dose reduced in September, by a tiny amount, didn't notice much difference, then moved house, started to feel a bit rough, put it down to the move, had my thyroxine reduced again and slowly started to sink into a bit of a muddle of unwell-ness, hello again bad hypothyroid symptoms.

Why was it reduced? Well, since I started taking T3 (liothyronine) alongside thyroxine my TSH reading  has been around 0.03 which is very low. My doctors in London seemed pretty relaxed about this but I'm aware that there are long term risks to my bones and heart of having a suppressed TSH, especially after Professor Graham Williams' talk to the BTF London Group last October so I was slightly uncomfortable about it. And although I felt better than I had before starting to take the T3 meds, I still didn't feel 100% well so was hoping that some sort of a tweak might make a positive difference.

So it turned out that reducing the thyroxine did not make me feel better, it made me feel worse. In fact, I ended up feeling quite lost in space. Brain fog descended, I seemed to be in a muddle a lot of the time,  constantly tired and short of time, occassionaly a bit tearful and low in mood, which is not the normal me.

Reporting all of this to my new endocrinologist and looking at my blood test results when I first saw him, which showed my FT4 had become very low in the range, he promptly put me back on my original dose and also suggested reducing the T3 medicine instead - but I protested!!

"No please!", in fact I cried a little bit, I was very, very scared that if my T3 was reduced my cognitive function would go completely down the tubes again, because before I took T3 I simply couldn't think straight, I was really in a mess back then. I didn't want to end up like that again, it's too scary to contemplate. Seeing my distress the doctor agreed just to change one thing at a time and we just upped the thyroxine.

That was back in February. Last week was time for another check up. My TSH is still too low. I still don't feel properly well. I've been ruminating on the stuff I learned at Graham Williams' talk (I am overdue to write more about this event and I will soon, promise) I really don't want my bones to crumble away or to have a heart attack so I was kind of open to the possiblity of reducing the T3, but also still very anxious about the idea.

Clever doctor pointed out to me that when I felt like a cabbage I had an undiagnosed vitamin D deficiency. This has since been picked up on and addressed. My vitamin D is now replete (nice word :) ) When I started taking Vitamin D supplements I noticed a profound improvement in my wellbeing and particularly my mental function. Perhaps that was the problem all along and it may be that T3 medicine is not actually required after all.....

Hmmmm, well perhaps, but I am scared, I am really scared. I am scared of being taken off this medicine that I believe is helping me and I am scared that if I stop taking it but then want to go back on it I won't be allowed to.

So I tell him my fears and he listens and he says, "T3 medicine seems to help some people but we don't really like giving it because it's not physiologically right - your body should be converting the right amount of T3 from the thyroxine you are taking - and because of the problems it can cause, particularly as your TSH is so low. Let's try reducing it, if that goes okay let's try stopping it altogether, let's take things slowly and if you feel unwell again you can go back on it."

Which I thought seemed very fair. So I agreed. He also told me to increase my thyroxine a little, to make up the difference.....

It's now day 5 of no T3 medicine. Guess what, I feel pretty good, possibly better than before in fact....... hmmmm, watch this space.

I'd love to hear from other people who have or are taking T3. It's great to be able to compare notes. Comments on here are always welcome.

Learning all the time. Ever hopeful. Sending smiles.

x

New thyroid research techniques and future treatment....

My loves, it has been too long, I won't bore you with excuses as I have something much more interesting to share..... new news from the cutting edge of thyroid research!! Read on....

On 3^rd March 2012 the London Group held our third Information Event at the Royal Free in Hampstead. The meeting was well attended once again, with two great speakers.

Dr Peter Taylor, BSc MBChB MRCP SCE, based at the Centre for Endocrine and Diabetes and Sciences, University Hospital Wales and recipient of the 2011 BTF Research Award gave a fascinating talk about new thyroid research techniques and future treatment.

Peter explained that treatments for thyroid disorders have not changed for around 40 years and doctors tend to think that this is fine as they are easy to treat, however a significant number of patients are not seeing good results from the standard approach and the focus on TSH levels alone may not always be sufficient.

Dr Peter Taylor addressing the London Group of the British Thyroid Foundation

In some respects, by not addressing this issue, the mainstream medical profession could be seen to have lost control of the situation and there are now a lot of alternative practitioners who are not qualified endocrinologists, particularly on the internet, who may just be out to exploit patients, by offering dubious treatments to those who feel let down by their normal doctors. In some cases these alternative treatments can do more harm than good, particularly in the long term.  

Equally misdiagnosis of thyroid illness as depression or vice versa leads to inadequate treatment and dissatisfied patients. Given thyroid function tests are relatively inexpensive, it is important to make sure the diagnosis is correct, by repeating tests if necessary; as many working hours will be lost to undiagnosed or poorly treated thyroid conditions.

The UK leads the world in the field of public health research, yet there has been a lack of good research in this field. It is clear that more steps are likely to be needed in diagnosis and treatment of some thyroid disorders. The reference range for “normal” TSH is based on population ranges and may not be be an optimal range. Studies have shown that variation within the reference range influencing pregnancy outcomes, lipid levels, blood pressure and risk of cardiovascular disease.  Factors other than thyroid disease can affect TSH readings, such as smoking, or being unwell.

The good news is that some exciting new research, made possible by recent advances in genetics, may mean that patients who are currently difficult to treat could be helped in the future by new treatments that could be available in the next ten years. It is likely that thyroid disease could be one of the first non cancer illnesses to benefit from personalised medicine, where treatments are tailored to the individual’s genetic profile. Already studies have identified new genetic variants that may impact thyroid function, beyond hormone levels.  These may enable us to predict if people may feel better if treated with a combination of T4 and T3. Some patients find that Thyroxine treatment can cause them to feel worse initially. It is possible that in some rare instances thyroid hormones aren’t reaching the brain properly so that blood test results can be misleading.

As an area of research, the thyroid is starting to gain more interest, particularly as public health professionals are realising that both high blood pressure and heart disease risk can be improved by treating borderline thyroid function. Recent successes in optimal use of Thyroxine to improve fetal development and pregnancy outcomes are also helping to generate interest in the research community.

Inevitably medical research is slow and new treatments will take time to filter through but it was heartening to all of us in the room to know that there are researchers taking our conditions seriously and working hard to make things better for us and other patients.

Peter also answered questions for more than an hour, on almost every aspect of thyroid disease and everyone found him to be most sympathetic and knowledgeable.

Our second speaker, Sheila Sturgeon of the Expert Patient Programme CIC gave an excellent talk on self management of chronic illnesses and getting the most out of health professionals. Several of the London Group have now signed up to do Expert Patient Programme courses.  

Our next London event is on 5^th May, 10am – 1pm at the Royal Free once again. I'm hoping to confirm our speaker(s) in the next couple of weeks.  Visit the British Thyroid Foundation website for details of the programme nearer the time and to find out if there's a group near you if you're not in London. As always if you want to come to our next meeting, just let me know. Everyone is welcome.


Sending smiles.

Thyroid talks

I've spent the last few days looking for a speaker for our next British Thyroid Foundation information event in London (3rd March). Last year we asked attendees what topics they would like us to cover in the future.

Here are the results of our poll:

What topics would you like to see covered in future events?

How get the most out of your doctor when you have a thyroid disorder – including power questions you can use, 19 votes

Nutrition and thyroid disorders – listening to and knowing your body, 16 votes

Mental health and thyroid disorders, 13 votes

Thyroid disease and bones (confirmed topic for 15th October event), 9 votes

Patients sharing their stories, 6 votes

Thyroid facts and fables, 6 votes

NDT (natural dessicated thyroid) research, facts, fiction, why do the USA use it and not us?, 5 votes

Thyroid disease and pregnancy, 3 votes

Thyroid Surgery, 3 votes

Thyroid Cancer, 2 votes

Radiology, imaging and the thyroid – radiology and imaging innovations are at the cutting edge of medical research, 1 vote

So, in response to this poll, we were looking for a speaker to cover the most voted for subject: how to get the most out of your doctor.

We also wanted to get someone to talk about cognitive behavioural therapies and techniques  (CBT) that thyroid patients can use to help us manage our conditions. We felt the two topics could potentially sit well together.

Suprisingly, while there are specialists who use CBT to support patients with chronic illnesses there doesn't seem to be anyone who is a thyroid specialist doing work in this area or focusing on thyroid and mental health issues. Not that I've been able to find so far anyway.

I speak to quite a lot of thyroid patients these days and so many of us share the experience of struggling with our memory, sometimes our emotions and often our ability to think clearly. A lot of people are very concerned about these symptoms and often they don't know that they are not alone in experiencing them. Just knowing that other people have similar experiences is in itself enormously reassuring for many people.

I've heard an endocrinologist say that he and his colleagues see thyroid patients as a "difficult bunch" because they can be over emotional and snappy in consutations.

Frankly I'm surprised that there isn't more medial support for this aspect of the illness. 

I left my last job because my brain just wasn't working the way I needed any more, to be able to continue to function in a demanding work environment. More than twenty years of building a career that was important to me has kind of gone down the drain. I'm lucky, my adorable husband is able to support me and I've regained sufficient mental capacity to be able to now do some  interesting paid work again on a freelance basis. I don't have children so when I'm tired or feeling foggy I can just rest.

I'm incredibly lucky. But there are people out there who are not so lucky, who are seriously impoverished and in many cases desperately unhappy as a result of not being able to work because they can't think straight and / or don't have the required stamina.

Personally, as well as being in good circumstances (which I'd just like to point out I have created for myself I wasn't born with any silver spoon in my mouth, far from it), I've found that I have been able to help myself a lot by practising cognitive behavioural techniques. Being aware of how my mind works and the impact of what I'm thinking and doing on my wellbeing, thinking and acting mindfully. Eating well, exercising, getting fresh air, not dwelling on anything that upsets me too much (because I've learned how exhausting that is!).

Like anyone else with a health condition I'm highly sensitised to the suggestion that my symptoms, particularly fatigue, could be caused by my mind. It's an outrageous and offensive suggestion and doctors need to learn to be super careful about how they broach the subject of the mind body connection. However I recognise that I am both a mind and a body and I've seen powerful demonstrations of how the two elements are bound together and can have extraordinary impacts on each other. I like the idea that I can help myself in some ways and I understand that my body is a complicated entity with potentially more than one cause and more than one possible solution when problems arise. So I'm open to this stuff.

Lots of people aren't though. Mental health issues and labels are scary. People are afraid of talking, doubt that it can help them, see it as a diversionary tactic by the  medical profession. Understandably in many cases, following years of misdiagnosis and mistreatment, some thyroid patients are highly suspicious of the medical establishment. This is so wrong!

We need doctors to be able to help us.  We need acknowledgement that our illness can affect our mental capacity and we need advice on how to handle this and what we can expect with optimal treatment. And we deserve the best possible treatment to return us to the best possible state of health so we can be contributing members of society and not have to live our lives on the sidelines.

We don't want much!

It seems that research and specialist treatment in this area is very limited.

I'd love to hear from doctors who treat patients with thyroid disease. Do you find thyroid patients difficult sometimes? Do you consider that their illness could be making it difficult for them to communicate effectively with you? What do you think patients could be doing to help themselves get more out of their consultations with you and your colleagues. What are the best questions you've ever been asked by a patient and why was it so effective? What do you think is the best way to address the mental health and cognitive function aspects of thyroid disease, or is it something you basically ignore and don't see as relevant?

And I'd love to hear from patients, what do you think of this topic and what else would you be interested in learning more about, in relation to your thyroid disorder? If you're in London you can come to our information events and help shape the programme by saying what interests you, shall I set up a poll?

Thanks for reading, I'll let you know next time who I've booked as a speaker for Marchy. As long as we have breath we have hope.

:)