Let's talk about thyroid patient petitions....

Update to this post: 
The below post talks about two petitions. I've since discovered that the first of the two petitions mentioned is actually completely different from the one I thought I was writing about. I am very embarrassed.  I'll have to go looking for the original petition and add a link to it when I can track it down. 
Since this post was written the authors of the first petition have been in touch and we have been exchanging views. I am very grateful to them for being in communication.
I'm going to have to do another post now I think, with my thoughts on this particular petition - or maybe it will be better to add a long comment to this post. I'll think it through and do one of those two things as soon as I can.

For now I felt it was important to flag up my error and apologise profusely to the Lorraine Cleaver, Sandra Whyte and Marian Dyer, authors of the petition to the Scottish Parliament, for getting them confused with a petition it seems they actually have no involvement with.  

Here is the rest of this post:

Recently I've seen two thyroid patient petitions in the UK, there may be more circulating. These petitions indicate to me that there are a significant number of thyroid patients here who are terribly unhappy with the treatment they are getting from their doctors. I knew that was the case before seeing these petitions. It's a crying shame. Something needs to be done. I believe that quality and consistency of care for hard to treat hypothyroid patients needs to be addressed urgently. However I don't think these petitions take the right approach and so I deliberately haven't got involved with either of them.

I promised the authors that I would share some thoughts on this blog. It has taken me a while but I'm doing it now. I believe the authors are well meaning and open to other people's points of view. I hope this post might be helpful for them and for anyone else who is interested in thyroid patient care and campaigning.

Some people are unhappy with their doctors, sadly that's a fact. However, I know that there are also lots of great doctors out there - and many patients (thyroid and other) who are very happy with the care they get. That's important to remember. Our precious NHS is under attack, good doctors need our support.

(When I was first diagnosed with hypothyroidism I went on a thyroid chat board seeking support and was instantly told "you will have to battle your doctors, they are idiots" - neither of these things turned out to be true and it was very unhelpful, when I was feeling unwell and vulnerable, to have those negative expectations dumped on me.)

The first of these petitions  is here (this link has been added to this post along with the update note above, to which it relates) - and a whole load of information on how it is progressing  is on a Facebook group here

The latest petition I am aware of  is here (since the update note above was added, the rest of this blog post now only relates to this latest petition and not to the petition to the Scottish Parliament)

Let me state my position:

1. I am a "hard to treat" autoimmune hypothyroid patient myself and I have had (sometimes continue to have) a very difficult time with my condition.
2. Through this blog and my volunteering work I talk to a lot of other thyroid patients (hypothyroid and other) and the ones I talk to are often having a difficult time and frustrated with the healthcare they are receiving.  That said, I believe it to be true that, statistically, we are not the majority of thyroid patients - because most are easily treated, don't have any problems and so don't have any need to talk about their condition. 
3. I have also spoken to quite a few endocrinologists, both for  my own treatment and because I organise regular meetings in London, where top class endocrinologists come and give talks to groups of patients and answer questions. Without exception I have been impressed with the knowledge and commitment of these doctors and I learn something new from every one of them. Clearly thyroid hormone function  is a vast subject - and the human body as a whole is vaster still. Medical science is amazing. 
4. I believe strongly that for those of us who do not respond quickly and easily to standard treatment for our hypothyroidism, there needs to be a review - and improved quality and consistency - of care, because too many people are getting a raw deal from their GPs who sometimes refuse to refer patients for specialist help - and sadly sometimes specialist help means an endocrinologist who knows a lot about diabetes but is not as knowledgeable as they need to be about difficult thyroid cases - so a referral doesn't always lead to a solution for the patient.  If your blood tests are "normal"yet you still feel ill and your GP cannot help you should be referred to an endocrinologist, if your endocrinologist can't help you I think they should seek the view of another specialist. 
5. I have lobbied the UK's leading charity for thyroid patients (British Thyroid Foundation) about this issue and they have told me they are now undertaking a strategic project to look specifically at Hypothyroid Care. I have high hopes for this project because I am confident in the professionalism of this charity which has been established for over 20 years. I believe they will go about talking with the medical profession in a way that will enable meaningful dialogue and I am certain that change for patients can be achieved via their methods.I hope to have the opportunity to contribute to that project in some way. 

As I understand it, the majority of thyroid patients are easy to treat. A minority are not. We are not talking about an insigificant minority - it may be as many as 20% according to more than one endocrinologist I have spoken to. 

I think that both of these petitions start from the premise that the standard treatment for hypothyroidism is no good, full stop. When it works for so many people, taking this stance just undermines the credibility of the petitioners. 

Both petitions also appear to blame "endocrinology" for poor treatment of hypothyroid patients. This makes no sense. Endocrinology is the discipline which studies and treats the endocrine system, while some endocrinologists are doubtless be better or more knowledgeable than others, and clearly there is a need for more research so that more can be known about our condition, to criticise the profession as a whole is desperately  unhelpful.

There are some private practitioners who appear to target hard to treat hypothyroid patients and promise to treat them differently from mainstream medicine and thereby make them well. I have not personally consulted any of these practitioners, because I do not see them as credible and I have spoken to several people who have consulted them and who have not had good experiences. Having said that I know that some people do have good experiences with these practitioners and that's great for them, I'm not against trying unproven treatments when evidence based medicine has no answers, providing the patient is informed and knows the situation. But when a practitioner puts themselves forward as a guru, claims to have all the answers and says that other doctors are ignorant fools -  I get very suspicious.

I know that much more research is needed in order for the medical profession to know more about hard to treat hypothyroidism and all the specialist doctors I have spoken to freely admit they do not have all the answers. And, perhaps because the science is not conclusive, it seems there is not a consensus within the medical profession about what treatment protocol makes most sense for these patients. Some endocrinologists will trial treatment with T3, combined T3/T4 or indeed Armour (porcine dessicated thyroid gland pills - thanks to the reader who corrected my earlier mistake saying they were bovine), others won't and their reasons, when I've discussed this with them, have actually been compelling. As a patient, my own experience tells me that there is perhaps more to many people's symptoms than just thyroid hormone levels and I'd like to see a more holistic approach being taken. 

I took T3/T4 combined for a while, it seemed to help me at the outset but after a while I went back to thyroxine only and actually felt better. As I've written previously, I now think the key to me feeling well was more about getting the right balance of thyroxine and also addressing other health issues (in my case a Vitamin D deficiency and gluten intolerance). The whole T3 thing now feels like it was a massive diversion and waste of time for me. And I've spoken to many others who have also tried T3 and not got on with it. Granted I know that for some people it does seem to be the only thing that will help them. The doctors I have met who are open to using T3 tend to say that research has not proven it is an effective treatment and there are concerns about it's safety, but with hard to treat patients you often have to go with trial and error to find the best treatment regime for them as individuals - and that's the fact of the matter, life is not perfect, medical science does not know everything.  Good doctors will listen to patients and do their best for them.

As patients we need to work in collaboration with our doctors, with respect for each other and open minds. That is what I'm committed to and I firmly believe that is the only way that makes any sense.  So I didn't sign the first petition and I won't be signing the second and these are my reasons.

Let's discuss.....

Patient Voices on Managing Symptoms, May 2013

An earlier post introduced the Patients Voices meeting we held in London on 11th May 2013. This post shares the notes from the breakout discussion group which looked at managing symptoms. 

With many thanks to Group member, Hannah Elbourne, who has kindly typed these up and who also kindly took several lovely photos of this event.

NB: These notes must not be interpreted as medical advice, they are simply things that individuals have tried and found helpful to them if you are experiencing any symptoms which cause you concern - speak to your doctor. 

BTF London volunteer, Theresa, with the Expert Patient Programme course book:
 Self  Management of Long Term Health Conditions

Managing Symptoms, Discussion Group Notes:

Everyone in the group explained a bit about who they are and why they have chosen this particular group to participate in. We went on to talk in general about coping with having a chronic illness as well as discussing our perspectives and questions we had on how to spot and manage the emotional, mental, and physical symptoms related to thyroid disease.

Everyone in the group was hypo rather than hyper, so this is what we focused on, although it was acknowledged that hyper and hypo symptoms can be quite similar and difficult to detangle - and also that symptoms can vary from person to person and may not always be down to our thyroid condition as we may also have other things wrong with us. 

There were some approaches that came up which people felt help them in general, and also techniques for coping with specific symptoms.

  

Common symptoms and things people in the group said help them:

Muscle pain/ swelling: especially lack of upper limb strength makes it difficult even doing simple exercises that use arms or puts pressure on shoulders:

•         Magnesium spray on the muscles
•         Not eating salty foods
•         Seeing an osteopath
•         Massage therapy (human contact) – one person goes for a massage and talks through it so it’s like a two in one therapy session!

 Difficulty sleeping/ insomnia: really need sleep to be able to function (more than before having thyroid issues) but find it much harder to get off to sleep, plus wake up a lot more during the night:

•         Don’t exercise too late as the body should be winding down, not up
•         Switch off computer/ electronics
•         Don’t eat too late
•         Try to be in bed early and at the same time each evening

 Immune system issues: we all seem to catch more colds and viruses and they seem worse and take a long time to recover from making life difficult:

•         Olive leaf tea
•         Echinacea drops
•         Vitamin C as it helps to strengthen the immune system
•         We discussed supplementing separately instead of all in one multivitamins and researching to find the right products
•         Flu jab – this helps one participant but made another feel very unwell
•         Avoid people with colds like the plague!

 Body temperature: not being able to regulate our temperature, either too cold or hot, and not being able to cope with being in the sun:

•         Exercise helps to regulate temps
•         Wearing layers

 Hair thinning/ falling out: this can be very upsetting for people:

•         Coconut oil to help dryness
•         Trichologist, but expensive
•         Not to get upset about changes in appearance, there is more to you

 Fatigue: both physical and mental fatigue can make us feel isolated, disconnected and depressed and stops people from being able to live their lives:

•         Learning to say no and not take too much on is difficult but important
•         75% rule – trying not to use all your energy each day, even on good days when you might want to do lots – factor in rest each day
•         Being gentle on yourself and not beating yourself up when you can’t do so much
•         Coming to terms with the changes and understanding your new boundaries

 Anxiety: as with fatigue this can make us feel isolated and inhibit our lives and affect our self-esteem.

•         Deep breathing and yoga breathing techniques
•         Gentle yoga practice and other gentle exercise such as Thai Chi and walking  
•         Meditation
•         Being around nice, genuine, caring people helps!

 The above coping techniques for fatigue and anxiety crossed over a lot and came up a lot with helping to manage thyroid symptoms and a chronic illness in general.

Nutrition is also big factor in taking control and managing ourselves but although there are some general points that seem to work for a lot of people, such as going gluten free sometimes helping with brain fog and fatigue, or vitamin D and Iron levels needing to be optimal for thyroid to function well, it is all very confusing. We touched on this briefly but there is a lot of conflicting information especially as what works for a person with underactive thyroid doesn’t necessarily work for someone with an overactive thyroid, or autoimmune thyroid, or for people who do not have a thyroid! [note from Lorraine - we are continuing to seek more information on this subject for group members and will have speakers from the University of Surrey Msc in Nutritional Medicine giving talks in November 2013]

We have all had to make life changes and have to keep adjusting. The changes in ourselves, our personalities and our constantly changing boundaries are a struggle to understand and to cope with, not only for ourselves but also for the people around us.

Support from others is a very important factor for our wellbeing but it is very difficult for others to understand how debilitating this illness can be because:

•         Symptoms can be so variable
•         It is seen as an easily treated illness
•         So many symptoms are similar to what people think they can relate to when they are actually very different i.e. thyroid fatigue is very different from just being tired, or brain fog is not the same as having a lack of focus.

It would be useful to build a template for how to explain our symptoms and the things we go through that others don’t see (‘walk in our shoes’)

We also talked about how it can be difficult to spot thyroid symptoms as they can be similar/ confused with many other things, for example problems such as fatigue, depression, and anxiety may or may not necessarily be because of the thyroid and could be an indicator for something else. So being around other people with a similar illness can really help with recognition and understanding of what is happening to us, and although each person is different there is still a lot of common ground.

I’d like to add and I think others agree that the events at the Royal Free are very emotional (in a good way!) and informative, it makes such a huge difference to be around fellow thyroid patients as it can be such an isolating illness and being able to chat with people in a supportive environment is a great relief and really helps me to feel less disconnected from people in general. Thank you!

Other things that were mentioned in breakout group:

• Heart palpitations – we did talk about this with anxiety but I think although they can be connected, palpitations are also a separate issue on their own.
• Not a cure but how to cope for now
• Variability of symptoms limits you
• Alcohol seems to disagree with us
• Blood tests don’t necessarily show how you feel

 Other things that were mentioned, but maybe in wider group

• Time of day for taking thyroid medication vis-à-vis other pills 
• Reducing carbs, esp sugar
• Keep book of successes
• Not the same person as pre-illness

Tips for communicating with your doctor (Guest Post)

I have been sent a wonderful guest post for this blog, by someone with some great advice for anyone having a difficult time engaging with their GP - who kindly wrote it up following an earlier article I wrote on here - where, amongst other things, I mentioned that I sometimes find my GP's communication style a little challenging to deal with. You can read that original post here (it has a great soundtrack too!)

A lot of the suggestions were things I think I already know and believe I am already doing, but there are some extra little gems in there too, things I might not have thought of before. Here are the tips I have been sent which you may also find useful:

Tips for talking to your doctor:

Just as you have off days, or are more emotional at certain times, so too your GP may experience similar.  She's human like everyone else.  So if she seems hostile put it down to her having an 'off' day.  But make a note of the day of the week and time of your appointment for future reference.

On next appointment, try starting the appointment by briefly asking her how her day has been going.  You'll get a sense if she's stressed or not, before launching into your health issues.  Also she might appreciate you asking her how she's doing, and so she'll mirror your attitude possibly for the rest of the appointment. 

If hostility continues at that 2nd appointment, double check afterwards if appointment week day and time is similar to last appointment - if so, then something might go on with her on that day and time frame each week and so make a note to yourself never to make appointments around that time frame in future.  If timing is different, then just note the day and week again.

On third appointment definitely pick a totally different day and time - maybe morning appointment.  Might be a bit of an inconvenience for you, but she might be fresher and not so worn out.  Start again by asking how she is doing before getting in your health issues.  If hostility continues, then mirror her posture.   So if her hands are folder, then fold yours, etc.  Then once you are locked in similar position, slowly start to relax your body and position of hands, arms, etc.  She will mostly likely subconsciously mimic you, and that may get her to relax.

One other thing, don't talk to her with arms folded or slouched.  It's subconsciously picked up by the other person that you are close minded and stubborn.  May or may not be true, but brain interprets it as a hostile position.  I personally like to sit with my arms folded, because it warms up my hands, and didn't realise how this might be interpreted.

I'm aware of this stuff because I've been on negotiation training courses where they give body language tips on face to face negotiations.  You can read some info about this here.   

A couple of other tips:

if hostility continues on third visit, bring someone along with you next time as an advocate (e.g. your husband or close relative like sister/brother/mother/father).  Just by having another person in the room, it might make GP a little more objective and less subjective.  Also if you interpret hostility, you can ask the person with you afterwards if they interpreted similar or not from GP.  You might find out their interpretation is different to yours, and because you trust them, you can talk openly with them about perceptions and maybe there's something you can communicate or think differently when with your GP in future.  If they agree GP is hostile, then consider changing GPs - you are the consumer after all.

 you might want to buy a voice recorder to bring with you to GP visit - assuming GP is OK with you recording the visit, then just switch it on during the visit.  This is good for 2 reasons - (1) you can concentrate on the visit and asking questions without getting distracted about taking notes on her advice which you can listen to later on at your leisure, and (2) you can listen to the appointment at a later time to see if your impression of hostility holds or changes (after a cooling off period you might find she wasn't hostile but it was something you incorrectly latched onto during the appointment)

get comfortable with silence and use it to your advantage.  Don't think you have to keep talking.  Ask a question, and then just wait for the GP to answer.  Sometimes they need 30-60 seconds or so to think and answer properly.  Don't rush that, just sit quietly waiting.  30-60 seconds will seem like a long time but it is only a minute or less.  If they ask a question to you and you need time to think it through then delay talking back until you've thought out your answer thoroughly in your mind, even if that means a bit of a delay when you answer. 

Another I learned about only a few years ago, but it's extremely powerful and really simple.  It's a male/female thing.  Men tend to talk in 'you' statements.  Women tend to say 'I' - problem with that is women tend say things like I have a problem, or I need help, etc.  Subconsciously the other party interprets that as they don't own this issue or problem.  But if you subtley turn your sentences into using 'you' then the other party will then subconsciously take ownership of the issue or find a solution.  I read about this in a book about managing workload.  I thought it was a bit of mumbo jumbo, but I was in a really desperate work overload situation with my boss so I decided to try it.  We'd had several conversations before but nothing ever changed.  What I did after reading that tip was outlined on paper all my work tasks, how many hours it would take to get them finished vs my normal work time, and then I handed the paper to my boss and asked 'what will you be doing about this?'  The topic about my work and tasks was not new but the response was totally different just by tacking on that last 'you' question - the response I got from my boss was he would take away my information and come back to me with a solution.  Two days later, he reassigned 25% of my work projects to someone else.  Absolutely amazing!  A couple of months later, my husband was having a problem with an unreasonable client who wanted more work done than what was originally agreed and without paying extra fees.  I told him about this 'you' tip, and he did similar - he outlined the options which were basically to pay more for extra requests or stick to the original brief and original costs.  He finished by asking 'what choice do you prefer' - the customer totally backed off and was much more reasonable after that.  I now tell everyone if you have to complain, or you are in disagreement with someone, try not say statements with 'I' - flip it around to incorporate 'you'
Last tip - practice the conversation you plan to have with your GP ahead of time - think through possible couple of ways she might respond (both good and bad from your perspective), and then think through how you might respond to each of those responses.  Just by visualising the conversation ahead of time in all it's various ways it might go, you'll feel more comfortable to handle whatever happens during the real appointment. 

(With many thanks to the guest author of this article who wishes to remain anonymous) 

This was one of the topics discussed at our May meeting in London and I hope to have notes from that session to share soon too. Watch this space! 

Thyroid Hope