Monday, 3 December 2012

"Eat yourself fitter" a surprising tale of dietary adjustment

I've mentioned a few times of late how changing my diet has seemed to make a big difference to how well I've been the last few months.

But I haven't told you the whole story have I? Well here it is.

Before we start, I'd also like to share a charming little tune you may like to listen to while you read, "Eat Yourself Fitter", by punk heroes of my youth, The Fall. Okay, the soundtrack is entirely optional and may not be to everyone's taste (pardon the pun), but here's the full unexpurgated tale of what I am almost confident enough to call my recovery....

gluten free and #healthyyum breakfast
I first heard about how going gluten free can be worthwhile for some people with thyroid problems quite early on in my illness, late 2009 when I was so unwell I was desperate for a solution and spent a lot of time online trying to make sense of all the conflicting information out there. I heard about Gluten Free (or #GF) from several different sources, many of which seemed highly unreliable and in the end I kind of wrote it off as unlikely to make a difference and not worth trying.

How I wish I hadn't done that back then.

What I read was that good health is dependent on good gut function and low thyroid hormones will impact gut health which in turn also then makes it difficult for our bodies to use (natural OR medically prescribed) thyroid hormones effectively. Some people don't get on with gluten, for a complex and not fully understood raft of reasons. They may find going gluten free makes them feel a lot better and even if you have a blood test that says you are NOT intolerant to gluten you may find that you actually ARE and that it is worth giving it a try.

But I also read that giving up gluten was really difficult and there is no proof that it is worth doing.

Bizarrely my first ever appointment with an endocrinologist included her mentioning, in passing really, that it might be worth me trying to go gluten free, but she was also willing to prescribe me T3 medicine and I was  focused on that first and foremost. How wrong I now think I was. And I wish she had made more of a big deal about the idea and actually encouraged me to give going gluten free a try.

I started taking T3 meds alongside my thyroxine (T4 meds) in July 2010. Six months later I also started taking Vitamin D supplements after a blood test showed I was deficient. Both of those things appeared to make me feel better than I had done before, but the benefit of the T3 seemed to tail off after a while, even though the dose was increased. My weight slowly continued to increase (by more than 20 pounds over the course of two years, I got quite porky) and I still felt tired and a bit vacant a lot of the time.

Subsequently, at several of the patient information events I have since held for The British Thyroid Foundation in London, we have had several endocrinologists reiterate what that first one said to me - that trialing a gluten free diet seems to help a lot of thyroid patients and is worth trying if all else seems to be failing. Why, oh why did I not heed this advice sooner? The answer is that it was never really emphasised, no-one credible ever seemed very serious about it.

Early in 2012 I got a bug. A really horrible cough that wouldn't go. It lasted for weeks. My doctor tried me on antibiotics and steroids, she gave me an asthma inhaler which I was using, at one point, more than ten times a day, she also said she thought it might be partially allergy related and gave me antihistamines and a high strength nasal spray. I had to keep going back to the doctors, I was really quite worried, nothing seemed to shift this wheezy cough.

Then a random conversation with a pharmacists assistant changed my life.*

The pharmacy operated an allergy clinic. I knew this, I hadn't been. I had had enough of people telling me they knew just what would cure all my symptoms and all I had to do was pay for the benefit of their expertise or witch doctor medicine. When you're visibly poorly this happens a lot and I've become very cynical about promises of miracle cures, especially when there's a price tag attached.  One day I'll write about my experiences of alternative  medicine and you will howl with laughter (or cry real tears) at my past gullibility.

But this girl had nothing to gain. She just worked in the shop, she wasn't on commission. She'd seen me several times over the preceding weeks, picking up different medicines for my cough and expressing frustration that it still hadn't shifted.  I mentioned to her the doctor thought there was an allergy component to the illness and she told me how the allergy clinic at the pharmacy had helped her. Basically she'd been diagnosed with a load of food intolerances by the pharmacist, after years of terrible health, and now she feels radiantly healthy and she recommended I book an appointment. £20. Cheap.

I saw the guy the next day. He said lots of people with unexplained symptoms have food intolerances, usually either to wheat or dairy. He said he recommends avoiding first one then the other potential irritant for two weeks each and after a month of noting symptoms and food intake we would probably know if I was one of those people.

Blimey, it was miraculous. In the first two weeks I ate no wheat. My cough went, my itchy eyes cleared up, I had more energy. I decided that wheat definitely wasn't good for me and I cut it out from then on. Whenever I forgot and ate a bit I would get itchy eyes and feel rotten. It was totally straightforward.

In the second two weeks I also cut out dairy. I didn't notice much difference. I don't eat a lot of dairy anyway. It seems dairy is not really an issue for  me. Everyone is different. At the end of my first wheat free month I'd lost seven pounds. Just like that.

I was delighted. As well as the symptom reduction I was thrilled about the weight loss, which continued at the same rate, slowly and comfortably, in the following weeks. A couple of months later I decided to go one step further and do a couple of weeks of a very low carb diet to see if I could shift a bit more weight. I am very vain and the weight loss was a great incentive. After another month I'd dropped another seven pounds and I realised that I'd accidentally gone gluten free.

Since then I've continued with a gluten free diet which is also pretty low in fast burning carbs. I've lost all the weight I'd gained. I look and feel MUCH better. I don't have itchy eyes or brain fog anymore.

I've read that when you have a food intolerance you can eat a little bit of what you're intolerant to once you've avoided it for 3 months or more. So once in a blue moon now I'll eat a bit of nice bread or flapjack if I'm out and it's being offered. I'm  not rigid about the low carb thing, I'll have roast potatoes with my roast dinner at the weekend, if we go out for dinner I'll have a pudding and eat whatever else turns up on my plate.

I don't eat commercial "gluten free"  food substitutes like gluten free bread or pasta because I know that they are just other kinds of fast burning carbs that I may not actually be intolerant to but will not be good for me.

I think I probably have more low level food intolerances yet to be identified, my skin is still not perfect, I still get a bit phlegmy some days. But basically I'm back to being slim and looking healthy. My digestion is pretty normal. My energy is much better. I'm a hundred times clearer headed. I'm continuing to pay attention to how I feel after I've eaten different things and I hope in time to work out what else might be affecting me adversely to a greater or lesser extent so that I can improve my health even more.  I'm trying to find an expert in the field of thyroid and nutrition to come and talk to our group.

On the whole  I am now a poster girl for going gluten free and low carb. I know it doesn't work for everyone but if you are one of those people who's thyroid blood tests appear to be "normal" yet you still feel unwell I think this is something well worth your while trying. And remember, don't fill up on artificial commercially produced high carb "gluten free" alternatives as they are likely to keep you feeling unwell. Go for natural healthy food that won't play havoc with your blood sugar.

Great sources of more information that I have found useful include the books Wheat Belly and the South Beach Diet.   

There are lots of great websites and groups for swapping healthy eating inspiration online. Since first writing this post I've now set up a #healthyum page on this blog to share some of my own invented recipes and highlight some of my favourite sources of further healthy eating related information and support. Let me know if you have other specific information sources you'd like me to add to the page.

*By the way, there's another great track by The Fall called Mr Pharmacist..... rock on.

with smiles


Wednesday, 21 November 2012

A story from the front line of providing volunteer patient phone support

As many of you know I provide volunteer phone support for thyroid patients.

It’s not something I particularly wanted to do but when I offered myself as a volunteer local co-ordinator to the British Thyroid Foundation, which I did because I was ill and needed a support group in my area and there wasn’t one so I was determined to set one up, it turned out that part of the role was to have my number listed and to take calls. It didn’t appear to be negotiable.

Anyway, I get on average one call a day, sometimes more, sometimes none, and I’d much prefer to be able to manage the time I spend on it it, so that I was only “on call” as it were, say once a month for half a day, or once a week for an hour or two, (I do a lot of other stuff for BTF, it’s all time consuming) but the charity don’t have the resources to set up such a system so instead they list phone numbers for all the different volunteers around the country and people needing help take pot luck ringing these numbers and hope they catch someone at home and able to support them. The list says if there are particular times people are most likely to be available and also what conditions they can talk about from personal experience.

I find that I appear to be providing a valuable service - I think literally everyone I’ve spoken to so far (I’m guessing 500+ individuals) seems incredibly grateful and tells me I have been helpful - and the people who ring are generally so lovely and often so distressed that it seems to be an important thing to continue with.  

Earlier today I spoke to a lovely lady on phone, she has been feeling very tired and unwell for several months, describing lots of symptoms that sound like hypothyroidism but could of course be something else. Her doctor has been monitoring her TSH for 6 months and says he expects that she will soon need thyroxine but he will not prescribe it until she has gone above a TSH reading of 6.9. He has not offered to do ANY other tests (not even T4 to see if that is low in the range, never mind B12, Vit D, calcium, iron, etc...). Her latest blood test results say that her TSH has come down rather than gone up, still around the five point something mark. She still feels rotten.  

Her doctor apparently told her nothing can be done, she's getting old, at 47, and just has to live with feeling crap!  

This is sadly not an untypical call for me. What can I advise? Some GPs may be inclined to give a trial of thyroxine with the symptoms and TSH reading described. It’s a judgement call. If they’re not going to do that - and it is not by any means necessarily the best thing to do as prescribing thyroxine when it’s not needed can cause all sorts of problems - my understanding is that they should certainly be looking for other causes of the symptoms.  I told her that.

I had in fact spoken to her previously and sent her a leaflet I have, about how to talk to doctors, as I know that sometimes you have to be smart with your communication skills to get a doctor to listen to you and be on your side and she had expressed difficulty in getting the man to listen to her before.  On this conversation we agreed that it sounded like she had tried to do everything right on the communications front. She had been clear and specific and non aggressive.

The lady reported that her doctor seems concerned about the cost of everything and unwilling to listen. She described feeling that he just wasn’t interested in her symptoms.

She said she was considering going private because her quality of life is so badly affected and she is desperate to get some treatment that will help.  I hear this a lot from people. It breaks my heart.

I said that she is entitled to a good quality of care on the NHS and shouldn't have to go private. I said I felt the doctor wasn’t following best practice if she didn’t feel she was being taken seriously. I told her it sounded totally unreasonable to me for her to be told she is “getting old” and can’t expect to feel well now she has reached the age of 47 (that’s not “old” is it??). I said that it was not reasonable in my opinion that the doctor was not conducting further investigations to get to the root of the problem. I told her that there are moves afoot in the NHS, with the reorganisation and strengthening of the NHS Constitution, to make doctors more accountable for the service they give their patients and that really it would be a good thing to give some feedback to the practice manager or the PCT as if the doctor doesn't get any feedback he may not realise the negative impact he is having, but that I understood she probably didn’t feel up to going down that route. Complaining is a very scary thing to do when you feel unwell. I know. See my earlier post on this subject.

Ultimately I told her that she is entitled to both further investigations and a second opinion and I would advise her to ask to see someone else - either another GP at that practice or through a referral to a specialist - and that if there isn’t a GP at her practice that she feels will listen to her, if I was her I would be seriously considering switching GP.  She was concerned that another GP at the same practice would likely “side with” his colleague. I hear this concern time and time again from people who ring me. I guess it depends on the individual doctors whether that will apply or not, but the fear amongst patients seems very common. 

She thanked me a lot.  She said the information I was able to share was helpful and that it was reassuring to have someone listen to her concerns. She will talk to her husband and decide what to do from there.

I felt so cross on her behalf I came off the phone and sent a tweet about it.....
 @lojinks: “just spoke to a lovely lady on phone, feeling very tired and unwell, doctor tells her she's getting old at 47 and just has to live with it!”
My next post will show how a conversation then developed on twitter, with both health professionals and patients commenting. It was very illuminating and I’m hopeful that as well as connecting with other patients online I may have made some valuable new contacts within our healthcare system, with whom it will be worth engaging further with, with a view to sharing insights and working towards positive changes for patients with chronic illnesses (not just thyroid patients)

Relevant hashtags are:

 #nhbpm (yes I’m still trying to keep up with this WEGO Health campaign, posting more in November than I usually do, though I haven’t managed every day!)

and #NHSChange (a new conversation I discovered today, check it out)

I’ve written enough for one day but have much, much more to say– will follow up soon. Tomorrow if I can manage it. 

Au revoire for now, my lovelies. If this story has struck a chord for you I’d love to hear your thoughts. 

Wednesday, 14 November 2012

Advice for dealing with negativity in online health communities

I'm happy to say I've not to date encountered any negative feedback on this blog. Generally I've found the online space one filled with warm support and a great sense a fun. However I've been in a couple of online health chat rooms where things have gotten very negative and once or twice I've found myself being "attacked" for something I've said....sometimes stuff like that can happen.

the prompt for Day #14 of WEGO Health's Health Blog Post Month (#nhbpm) is Give advice for dealing with negative feedback in an online health community.   

You hear a lot about how the internet is full of nasties. However, my experience is that so far it has been mostly easy to avoid them and fairly simple to deal with anything that has arisen. Am I just lucky? Of course, "Lucky" is my middle name. *winky face.*

I do have a clear intention about how I choose to navigate the online space though - and I think it mostly works. I'm happy to share: 
  • Firstly, be true to yourself. Speak your truth. Say what is important to you. Be self expressed. That is your privilege and it is what people will love you for.  It is the value you can give to your online community.  
  • Secondly, honour everyone else. Everyone you encounter is an extraordinary human being, they may not all behave impeccably all the time, they may sometimes express themselves in ways you find objectionable, they may react to you in ways you don't like, but be gentle with them. Everyone has a hard path, most people are doing their best. Anyone being unreasonable most likely has problems and those problems are unlikely to be about you.  When you speak your truth, always try to do it kindly and with consideration for others. 
  • Thirdly, if you find yourself under attack - don't react. Don't get drawn in to other people's dramas. Protect yourself, be prepared to withdraw / detach with love / however you want to think of it. give yourself time to calm down before responding to anything anyone writes or says that upsets you. Walk away from conversations where people are being unreasonable, you are not obliged to participate. There's a lovely phrase "don't feed the trolls", it means don't engage with attention seekers who choose to try and upset you. Pity them, sure. Wish them well. Hope that they will overcome their present difficulties and stop feeling the need to abuse others. But you don't have to try and fix them and you certainly don't have to play their game by getting involved or returning their nastiness in kind. 
  • Fourthly, see feedback as a gift.  Even feedback you think is unfair can be useful, sometimes it's the most useful of all, if you just give yourself time to reflect on it and decide what value there may be in it for you.  Recognise that feedback is not the truth, it's just one person's perception, but by listening and seeking to understand what people are trying to say to us, we can sometimes learn something useful about ourselves, we may learn how to communicate more effectively with difficult characters, we may realise that we have been being difficult ourselves, we can learn what kind of thing is likely to trigger others, or we may sometimes simply learn better how to protect ourselves and what places we perhaps don't want to hang out in any more.
  • Finally, don't internalise negativity. Don't ever feel trapped by it. We all have choices what conversations we choose to engage in. Some people sadly find themselves in family or local community situations which may be limiting and that's really hard, but the internet is "virtually" endless *another wink* and if you find yourself stuck in an online community where negativity reigns - you can always go and find another.
Take care of yourself and take care of others as far as it feels reasonable to do. 

Stay safe out there. 

Friday, 9 November 2012

A memory I can still taste, a future yet to unfold #nhbpm #9

I remember sitting on a bus, at the back, downstairs, I was 15 or 16.  I was day dreaming about my future. It was 1983.  I had spiky hair and baggy trousers and pointy shoes. I wore my Dad's old jumper, cut down, an old man's jacket from a charity shop, lots of eyeliner and I was clutching my acid dyed, pink denim bag from Chelsea Girl that I loved. It was the days before mobile phones so I was just looking out the window. Going through town, Glasgow city centre. It was raining outside.

I think I'd just go some preliminary exam results or something. Or maybe a teacher had just said something nice about me being clever. Something had happened, I don't remember what, but it must have opened a door in my mind to the future and it suddenly looked really rosy. The thing I remember the most is the feeling I had. A feeling of excited anticipation, like the night before Christmas.  I was thinking to myself, "I'm going to do really well in all my exams, I'm going to go to university and then I'm going to get a good job and then I'm going to be really successful and then I'm going to be a freelance consultant and not have to work full time but people will come to me for advice and it's going to be great." Where on earth did I get the idea from, at 16, that I would end up a freelance consultant??  My Dad was sometimes freelance, otherwise I don't think I'd have even had the vocabulary. I liked the idea of not being tied down.

I wasn't dreaming of babies or a husband or a beautiful house. None of that entered my mind. For some reason I was dreaming about what I was going to do. And I just had this rush of certainty that I could do a lot and it was all going to go really well - and I felt incredibly happy.

Fast forward to now. Bizarrely I have indeed become a freelance consultant and I did have that glittering career, kind of, that I'd dreamed of. I did some interesting stuff at any rate, before I got ill. I guess I envisaged becoming more senior than I actually managed to do when I was employed. (Hell when I was eleven I thought I might have a shot at being prime minister one day - I had  HIGH hopes!) I do think that the illness kind of cut me off a bit in what might have been my prime. I know I was getting ill for a long time before it reached crisis point and I had to, for a short time, "give it all up". I believe now with hindsight that it was affecting me more than I realised for a long time before I was ever diagnosed and I do feel a bit aggrieved that perhaps it may have held me back a bit.

But hey ho, here I am.  As the John Lennon song goes:
"Life is what happens to you while you're busy making other plans." 
I did some of that stuff I dreamed of and somehow, where I've ended up is where I was aiming for all along, despite many unexpected predicaments, distractions and deviations that arose along the way. I always longed to live by the sea and now I do. My freelance career is very new but it is going well. My health,  having totally collapsed, seems to be slowly but fairly steadily coming back. Total bonus I have an adorable husband too, I never expected that!

Life so far has been nothing if not interesting and it continues to be so. I love that little memory. Thinking back to the naive yet supremely confident little thing that I was at that moment, makes me smile.

Who knows what the future holds now. I intend for my health to get better and better and I intend to bring more opportunities in to my life where I can express myself and make a difference for others. Ooh, my mind just went off on a tangent there, thinking of possibilities and I've got a little bit of that feeling again!

This is my latest post for WEGO Health's Health Blog Post Month #nhbpm, using prompt  #9: Tell a descriptive story about a memory

Wednesday, 7 November 2012

A waiting room in need of a rethink.....

I'd like to redesign a waiting room I know as follows:

Firstly, I would ensure there were enough seats for waiting patients to sit on.  It doesn't seem too much to ask really, that instead of having to stand or sit on the floor patients could sit on a seat, particularly given the sometimes lengthy waiting times between appointment slot and actual consultation with a doctor.

The last two times I visited this clinic there were not enough seats, it's such a basic thing. I sat on the floor, it felt ridiculous and it wasn't comfortable.  I felt quietly outraged on behalf of other, older, in some cases seemingly sicker patients than me who were having to stand, or slump against the walls, if their self consciousness or wonky knees would not allow them to hit the floor with me.

Secondly I would allow reputable patient groups to display posters and medically approved literature that might be of interest to people waiting.

As a representative of such a group I once asked the endocrine nurse at this clinic if they would display a poster for an information event I was organising. He said it wasn't possible as the hospital doesn't own the walls. How very strange I thought and didn't push. I didn't have the energy to squabble. But if I was redesigning things I would ensure that the walls were available to be used for informational purposes to benefit patients. I know how much I longed for information and support in the early days of my illness, I know I'm not alone.

Those are the main things. I don't want much.

I know that hospitals have to be very careful about hygiene so I would have a nice laminating machine available somewhere in the hospital for such posters to be laminated easily before being  put up.

Thirdly I might have computer terminals in the waiting room where patients could post free text feedback about their experiences of the clinic and perhaps also post questions that they would like answers to or suggestions for improvements that could be made. There are currently terminals allowing patients to fill out a questionnaire but it is all tick box A, B or C and clearly designed in order to generate sterile statistics rather than actually intended to gather meaningful comments. I would change that.

I might even make those terminals dual purpose - so that as well as giving feedback people could look up information about their conditions, browse FAQs, or - hey how about this - provide answers or other input to qualitative research projects that the lovely medics in the clinic might be involved with.

Oh my, I'm getting fanciful, stop me before I go overboard.

I'm not going to even dream of seats of different sizes and heights, etc, to accommodate different people's comfort requirements. I'm not thinking about art or entertainment options, or fancy lighting or anything like that.  Though it would be nice to have some nice pictures to look at. I'm happy to take a book and sit quietly, but there are such things as basic needs and I would like to see them being met when people are sick and have to go to an outpatient clinic.  There I've said it. I've not been to that clinic for over a year but it still makes my blood boil when I recall how it was the last two times I went.

That's today's post for WEGO Health's Health Blog Post Month, #nhbpm, sticking to the prompt - "redesign a doctor's waiting room"

I'm not sure if this blogging every day is such a good idea. I feel like this post might come across as just a bit of a negative rant.   I'm also now wondering if I ought to share it with the clinic in question as it's about them. What do you think? Thanks for reading anyway.


Tuesday, 6 November 2012

Breaking news about thyroid disease

Today's prompt for Health Blog Post Month (#nhbpm) is to write a news style post, here goes:

Read all about it! 

This Saturday, 10th November, leading endocrinologist Stephen Robinson, will give a talk on the issues around pregnancy and thyroid disease at the Royal Free Hospital in Hampstead.*

The meeting is organised by The British Thyroid Foundation (BTF), a tiny charity with a massive challenge..  

Many families are directly affected by thyroid disease. It is very common - one in 20 of us in the UK have a thyroid disorder - yet they will have seen little in the media about it.  It is largely a hidden disease though in some cases has a devastating impact on people’s lives and can lead to miscarriage or pre-eclampsia if not properly treated in pregnancy. 

Anyone wishing to attend this meeting should contact Lorraine Williams to book a place. 

High profile thyroid patients have included the popular writers and broadcaster Clare Balding and boy wonder of the 2012 London Paralympics, Josef Craig.
The thyroid gland in your neck produces hormones for the cells in your body to work normally. When it goes wrong it can have wide-ranging effects.  Up to 20% of patients have symptoms that prove difficult to resolve.  Thyroid disorders can run in families; they tend to occur mainly in women, but anybody - men, teenagers, children and babies - can be affected. 
While often these disorders are easily managed, this is not always the case and many specialists agree there is still a great deal more we need to know about the thyroid and how it works.
Recent research has highlighted the very real hardship and distress that can be caused by thyroid disease, yet many doctors admit they are not as sufficiently well-informed as they need to be to fully help their patients. The internet can be full of rogue information and scare mongering about thyroid disease which can lead to confusion and distress among those affected.

Raising awareness about thyroid disease and supporting patients is vital. Most people would benefit from being better informed and prepared to deal with thyroid disease, should it happen to them or someone they are close to. 

Set up 21 years ago and still operating from a tiny office in Harrogate, North Yorkshire, heavily reliant on a team of volunteers around the country, BTF operates on a shoestring budget.  The charity desperately needs more funding to grow; to support the increasing numbers of thyroid patients who contact them, by providing information about their illness they often cannot find anywhere else, and to help fund more research into thyroid disease.

BTF works closely with the medical profession and other organisations[1], funding and supporting crucial research projects, doing their best to influence medical practice on thyroid disorders, ensuring patients’ voices are heard and creating a strong nationwide volunteer network.  But more needs to be done to meet the growing need from patients for information, support and advocacy, as well as to provide more funding and support for further research.

To find our more, or to make a donation click here to visit the BTF's website. 
*For details of how to register for Saturday's event click here

[1] BTF is a National Institute for Health Research (NIHR) partner organisation and collaborates with the following: British Thyroid Association (BTA), Society for Endocrinology (SfE), Association for Multiple Endocrine Neoplasia Disorders (AMEND), Butterfly Thyroid Cancer Trust, Cancer 52, Thyroid Eye Disease Charitable Trust (TEDct), Thyroid Eye Disease Amsterdam Declaration Implementation Group UK (TEAMeD), Addison’s Disease Self-Help Group (ADSHG), Hypoparathyroidism UK, and Sense about Science.

Monday, 5 November 2012

Health Activist Soapbox

Today I can hardly clamber on my soapbox. My bones are weary. I had a dream last night about being so tired I was dragging myself around and when I woke up I was indeed exhausted. I've been tired all day.  Wondering if it was something I ate yesterday. It seems I have some food intolerances, not yet fully understood, I've cut some stuff out of my diet and overall I feel much better, but I still have the odd day like this and my skin is a bit crap too and that makes me think it could be a food thing.

boiled egg, celery and peanut butter
eggy breakfast with celery and peanut butter, #healthyyum
But I'm not writing about food. I'm writing about health activism. Where was I? Oh yes, I keep forgetting. Then I remember. And I carry on.  So I'm tired, forgetful and a bit spotty today, but I'm on a mission. I have a soapbox. Here I am, I'm on it. Are you listening?

Through becoming unwell and being one of life's natural campaigners I have become a health activist. What does that mean, what do I do apart from write this blog?

Mainly I set up and run meetings in London for thyroid patients.

When I got ill I wished there was a meeting I could go to, to get good quality information and support. There wasn't.

I spent quite a bit of time in the early days on an online support group but I kind of grew out of that. There was a lot of misinformation and bad feeling being bandied about, alongside some lovely warm support.  There were some great people there, some I'm still in touch with, but ultimately it wasn't enough and it wasn't quite right.

As soon as I was well enough I started putting wheels in motion to set up a group that would provide what I was looking for. I chose to work with the British Thyroid Foundation as they seemed to be the most credible thyroid patient charity in the UK. It's been brilliant. Along the way I've been supported by a fantastic team of fellow volunteers and we've done several events which have all been mostly extremely well received. We try and make each event better than the last and do our best to learn from all the feedback we've gotten so far.

I also provide telephone support for other thyroid patients. People call me and I talk to them and I find I have a lot of information I can pass on, stuff that their doctors seem not to have the time to tell them, or may not even know themselves sometimes. I share my experiences and it seems that the people who call really appreciate being able to speak to someone who can understand where they're coming from and I can sometimes shed some light on their situations by talking about how it was for me. I obviously don't give medical advice, I'm not a doctor and often people who call me might have all kinds of health stuff going on that's way beyond my limited knowledge. But it seems that making myself available in this way is helpful.

I try to raise awareness of thyroid disease, I talk to journalists, etc, regularly. I tweet my little socks off having been introduced to twitter by social media queen and dear friend @claireboyles.

(Warning if you're not on twitter yet, it is addictive, but it's also a great way to connect with like minded people so why not just go for it!)

I get involved in a bit of fundraising, not too much, I have to manage my energy levels, there's only so much I can do. I figure I'm giving a lot in terms of time, so fundraising feels like less of a personal priority.

I'm also always trying to gen up: on the illness, on related conditions, on our ever changing National Health Service and treatment guidelines. It is my aim to influence UK health policy and health professionals around how thyroid patients are treated. At the moment I just do that in a small way, via networking with doctors and policy makers via our events and other conferences I get to go to, as well as online platforms etc. In time I hope I can become more effective at this. I'll find a way. I'll make a plan. I'm getting there.

The only issue with all of this is that I'm knackered and I can't always keep on top of it all quite to the extent that I would like. (Maybe I need to eat more, or fewer, eggs!) Also that I have to balance doing what I do around thyroid stuff with earning a living.  It's a shame there isn't an organisation that would employ health activists to do what we do (part time, flexi hours, with excellent rates of pay to reflect our skills and experience, of course).

So I'm not doing a lot of ranting from my soapbox today, just not got the strength to be particularly rousing or oratorial. But hopefully I've given you a bit of a window into my world and what being a health activist means to me.

Any hints and tips from others doing similar stuff would be very gratefully received.

Meantime I'd just like to share a link to another #nhbpm post I read today - a fairy story about online support communities, everyone should read this before they get sick and go online! "Joy's story"  from Chris Dean - I loved this. Am discovering so many amazing health bloggers this month.

November is Health Blog Post Month, this is my 5th #nhbpm post - find out more on the Facebook site for the campaign

with love and light

Hope (Lorraine)

Sunday, 4 November 2012

Deciding what to share - a drive to be more open #nhbpm #4

The #nhbpm prompt for this post is "Disclosure" 

...hence masked ball photo, yes it's me... 
I started this blog anonymously. I felt very anxious about the idea of anyone who knows me in "real life" seeing me revealing my vulnerabilities and fears about my illness. I was particularly concerned about this from a professional point of view. I felt that my thyroid condition and my career had to be kept strictly separate.

I "came out" in Jan 2011 with a post entitled "Adventures in Social Media and Who am I Anyway". I think doing that was part of a process of acceptance and coming to terms with the fact that my illness is not something I need be ashamed of, it's just something that has happened to me and that by communicating openly and honestly about it I can help myself navigate the experience and feel better - and potentially also help others.

The truth sets us free.

So these days I am pretty open. You know my name and what I look like. I even shared a couple of most unflattering pictures of me looking extremely sickly on one of my earlier posts this month. Pictures I would previously have hidden and felt a bit embarrassed even to have.  I took them in an effort to see how ill or well I looked. They are a strange little archive, covering a few months of my life when my world was being rocked and I felt very insecure. I would peer at myself down the camera phone lense and then peer at the picture and wonder what the image meant. I have considered doing a post which is made up of all those sad little faces, but I haven't done it as I'd worry what such a post might say about me!

So what do I disclose now - and what do I keep hidden?

I don't blog about my relationship, except to say how adorable my adorable husband is, which he is.

I don't say much about my work, I have never mentioned an employer or client by name.

I keep my Facebook separate, that's a play space for me and I tend not to connect my blog or most of my social media friends (there are a few very special exceptions to this, you know who you are).

Likewise my Linked-in is purely for career networking.

I am vague about my precise location. Safety first.

I don't name my doctors.

I don't name anyone else by name without their permission.

Interestingly, having become a health advocate through the illness and my voluntary work with the British Thyroid Foundation I am starting to consider possible related employment opportunities and in those cases I find I'm showing the blog to potential employers, which may or may not be a good idea but it's a decision I've taken and we'll see where it leads me. Certainly it's not something I'd have done a year ago. Now I feel a profound sense of the value of my experiences of chronic illness and my ability to write about them. I'm driven to being more open. It feels important.

What do you think about how much I share, too much, too little or about the right amount? Have you written about this subject too? I'm so interested in what other health bloggers and readers think about this. Comments as ever are positively encouraged. :)

with light and love


Saturday, 3 November 2012

I wish I knew about this, but I don't.... Day 3 #nhbpm

Woo hoo, look at me, posting 3 days in a row for @wegohealth's health blog post month. No comments on any of the articles yet though, which is strange as I can see people are visiting the site. Anyway.....

Today's prompt is: "I don't know about this, but I'd like to...." 

I don't know about biology, I was so uninterested in the subject at school, can you believe, I didn't get it's relevance to me at all! How can teaching be so bad and/or curricula so ill thought through that a reasonably bright young biological being, who was let's face it as self obsessed as the next teenage girl, could go to school every day for how ever many years it was and just not clock that biology had anything to do with me?

In the UK we get to choose what subjects we will study after age 14. Up until then you just study what they tell you and in the first two years of secondary education you do all the sciences. At least that's how it worked in my school days, a zillion light years ago. I think it's still about the same.

My Mother died when I was five, not sure if I've told you that before. That has been a major thing in my life, as you can imagine. Being without a mother growing up was tough as hell. My Dad brought me up on his own. Many traumas: he bought me terrible nylon stripey jumpers to wear and wouldn't sew my Brownie badges on my uniform because he thought cowgum glue was perfectly adequate and was completely disinterested and un-supportive of my regular lobbying to go to dancing classes or majorettes because he knew that meant that he'd then have to do tricky things with sequins and ribbons on shoes for end of year shows and he was having none of it. I got my own back by becoming a punk at the earliest opportunity. I digress, that's all another story.

The reason I mention it in this post, is that I think it's pretty weird, given that my mum had some mystery illness and died so young, that I never had the urge to find out about what makes the human body tick. It's like I had some mental block.

The main reason I refused point blank to consider studying biology is because I knew that if I did they would make me dissect a bulls eye and a dead rat. Everybody in the school knew that was what biology classes entailed. No way. It was never going to happen.

I can't believe it wasn't possible to make the subject more appealing and relevant to me and all the other kids who dropped it at the first opportunity. I feel let down now. So many of my hours and days years at school were spent bored out of my tiny mind. And now I'm so filled with curiosity and awareness of my ignorance. I wish I knew more about how my body works.

I've learned a lot about thyroid disease since my diagnosis three years ago. But there is still lots that I don't know and I learn new stuff all the time. The human body and medicine is this vast and fascinating subject. Even doctors don't know it all, far from it. And I've come to realise that my symptoms have sometimes been alleviated by things other than thyroid hormone treatments. That my condition isn't as simple as being just down to one thing with one simple cure (for a long time I hung my hopes on T3 treatment because so many thyroid patient sites are so focused on that and I kind of caught the bug, but now I realise, that for me, T3 appeared to help a bit for a while but ultimately other things have had a bigger impact on my improving health.

The doctor at the fatigue clinic showed me a fascinating diagram of how all the different systems in the body are interlinked and affect each other. I got the principle but I wish I understood the detail more. I particularly wish I understood how things like nutrients and trace elements work and I wish I could identify a magic supplement I could take that would bounce my health back to being fully functioning. Ha ha, if only it was that simple.

Maybe one day I'll know all the answers..... I'll keep looking for them anyway. I know more than I used to at least, that's a start. Learning all the time.

With smiles. Thanks for reading. Feel free to share any thoughts below.


Friday, 2 November 2012

Day 2 #NHBPM, Inspiring Quotes

We go Health are encouraging health bloggers to post every day in November.  Check out the hashtag #nhbpm on twitter to see how the campaign is buzzing along.

Today I've been prompted to write about an inspiring quote. What I'm actually going to do is share a few different quotes that inspire me and also share a few different sources of further inspirational words, so that if you like the philosophy these quotes come from, you can tap into it yourself. Follow your bliss.

Here's my first quote:
"If you change the way you look at things, the things you look at change." Wayne Dyer (via @innerdelight
This is so true, I know, especially through being ill that we cannot always control our lives, shit happens, sometimes and sometimes it's hard to deal with. I get a little cross with those relentless "positive thinkers" you come across sometimes who clearly have never had to deal with anything they can't control and can be so lacking in compassion or understanding for people they perceive as weak or defeatist, who may struggle with health issues or other difficulties. But I try not to let their ignorance get to me, if I have the energy and it feels important sometimes I'll engage them in a little light debate and try and to broaden their view of the world. Other times I've learned that just letting some comments go and not taking on responsibility for trying to change everything that's wrong in the world gives me more peace of mind and lets me focus on the stuff that matters more - and where I can make a difference.

But there's a grain of truth in what those people believe. When I look at my illness from a poor me perspective I feel bad, when I actively choose to look at the positive things it has brought me -new friends, wisdom, a calmer more balanced lifestyle, opportunities for creative expression and the chance to support others, a greater appreciation of the love and support I get from my adorable husband, a whole new level of knowledge of how my body works and how to take care of it.... well I start to feel better. In fact I can get a real happy little glow going.  Honestly!

Taking time each evening before I go to sleep to consciously count up all the things I have to be thankful for that day means I snuggle down with a happy smile on my face and drift off into a pleasant sleep. If I allowed my mind to fret and wrestle over the things that had not gone to plan, or issues from the past, or worries about the future, I know I would not feel so tranquil, I would probably not get sleep so easily or sleep so well, I might have different sorts of dreams.  If I don't sleep well the chances are I will feel bad the next day. Good quality rest is important for my wellbeing.

And I know too that allowing myself to get stressed and upset about stuff creates fatigue, it can even create pain in my body as I tense up physically around my tense and angry thoughts. There are times of course when I do get wound up and angsty. Observing myself, afterwards, I now recognise that when that happens the effect is very clear. Angry emotions = feelings of exhaustion later. I seem to be a sensitive soul. When I cultivate serenity, compassion, empathy and acceptance of reality, I feel better and I achieve more.

Every day in every way, my thoughts and the way I look at the world truly shape my reality. I am not in total control, far from it, but I am a conscious being and my consciousness is what I experience and I have choices around where I put my consciousness and what I do with it.

Here's another quote I find inspirational :
"observe yourself, do not judge yourself, that is the highest form of human intelligence" from Jivamukti (? - source uncertain)
I keep coming back to these words. there's something about observation without judgement, acknowledging reality, including the reality of difficult emotions or situations, that somehow can bring about transformation. I got into meditation a few years back. The art of sitting. There are lots of different meditation techniques you can use, the simplest just to sit and observe your breath flowing in and out of your body. It's extraordinary how that simple observation process, switching off the judgmental chatter that flows naturally through our brains, can leave people feeling refreshed and energised.

If you follow the link above and here to the meditation site I built for the group I used to help run in Camden there a few more nice quotes and poems along the same lines as the one from Inner Delight and the Jivamukti one.

Here's a final quote I love and hope you will like too:
"Don't find time for wellness. If you value yourself, MAKE time to move and breathe and feel alive." @soulseedz 
Gorgeous, never a truer word spoken, what an inspiring world we are lucky enough to habitate, so many wonderful people sharing so many beautiful words and ideas we can benefit from.

With love and light.

I hope today's posting  has been worth your while to read. I'm very grateful for you stopping by. I'd love to know what quotes you find inspiring, feel free to share any below, or let me know if you are also writing on this topic for #NHBPM. I'd love to discover your blog if I don't know it already.

Thank you for for being there.

Thursday, 1 November 2012

A health bloggers challenge - Why do I do this? #nhbpm

self scrutiny, not always recommended......
(pic from 2010)
This blog is about to go turbo charged boys and girls, stand by, hold on to your hats, a deluge, a veritable whirlwind of health blogging is about to be unleashed. Not just on this blog - health blogs everywhere are ramping up to take part in @wegohealth's National Health Blog Post Month (#NHBPM)...

Read all about the challenge here. You can even sign up to take part, how much fun would that be? All of us writing like dervishes, sharing our stories, raising awareness, rocking the world, making a difference. That Frankensandy got nothing on us! 

As it happens I could do with it not being called "national" health blog post month because I'm not in the nation that's being referred to and I suspect many other participants won't be either - hey Americans, your nation is not the whole world, the internet is bigger than your country! But never mind that, it doesn't really matter.  I'm in the UK, for what it's worth. 

The idea is that we all write a blog post every day during November. Considering I usually write about one post a month, or, erm, okay less than that sometimes.... this will be a stretch I know, but I'm up for it and I'm also excited about reading other bloggers posts. While we're all being so prolific I will make a point of reading more blogs by other people than I usually find time to do.  

The good peeps at We Go Health are providing prompts for each day. I might not always use them as I actually have quite a lot of ideas for things I want to write about, but today, as it's day one, I will stick to the script.

Today's subject is: "Why do I write about my health?"

Back when I was ill-er than I am now I used to sometimes take pictures of myself to try and gauge how ill I looked and whether or not I was getting any better.  As you can see above and below, those are not good  photos! 

Feb 2010, not looking fabulous, feeling small and sickly

April 2010, can you believe I thought I felt better so took this to see how well I looked!  Aaargh!

Not only did I look  like shit. Pardon my language. But I was totally confused. I was used to being this fairly together kind of a person. I was good at getting things done. I was articulate, successful, busy in my life. Okay so for years I'd known that something wasn't quite right about my health, I needed to pace myself more than others, I knew my immune system wasn't great, I was prone to get more colds and stuff than other people. I'd been a sickly child, had allergies and stuff. But basically up until 2009 I was doing pretty well thank you very much. Then I got the diagnosis of hypothyroidism and I thought this was a good thing, that I'd start taking the pills and could expect to feel better than I had done for years because the thyroid disease must have been causing all my previous  low level health and energy issues and now we'd found the cause and tra la la, I could keep on motoring.


Well sadly it wasn't that simple, what happened then was that I got a whole lot worse before I started to get any better. It's fair to say it's been emotional and life changing. Three years down the line I'm still  not as well as I aspire to be. But to be  honest I'm now not far off it. I've learned tons of stuff about thyroid disease which  has been fascinating and I now know some good techniques for how to manage a chronic health condition and deal with adversity in general. Bizarrely I'm now living in a beautiful house right by the sea which would never have happened if I hadn't got ill and had time to reassess my hectic life, working all hours in London, as I was. So I believe that every cloud has a silver lining and I always try to look on the bright side when I can.

I started to write this blog to share my experiences, to reach out to others and to try and make some sense of what the hell was happening to me. It's been great to have this outlet and wonderful when people have commented that they can relate to how I've felt, or that information I've shared has been useful to them.

I keep writing because it helps me and other people sometimes tell  me it helps them too and that makes me happy. 

Thyroid disease is a bit of a hidden illness. One in twenty of us will get it yet many of us don't even know what a thyroid is until the day we are diagnosed, even then we often get very little info about our illness, how to manage symptoms, or how to keep as well as possible.  

As well as reaching out to other patients I also have a deeply held ambition that I can make a difference to how health professionals view and treat those of us who are unlucky enough to have a hard time with thyroid disease. I love it when a doctor or health policy person tells me they've read my blog and I actively seek out other opportunities to reach those people and get them to think differently about hard to treat thyroid patients. Because we deserve to be taken seriously and we both need and deserve to be supported back to good  health.  I believe that by speaking my truth I'm shining a light on a condition that has been terribly neglected for too long.  That makes me feel good. 

So there you go. My post number one for November, "#NHBPM", I will post again tomorrow. Yes I will. You can hold me to it. If you're doing the challenge too please let me know so I can visit your blog too. Whether you are or not I hope my gruesome pics haven't scared you off. Ha ha. Let me know what you think of this and previous posts. I love feedback. 

with love and light

Hope (Lorraine)

Friday, 26 October 2012

A brave new world, giving feedback to my doctor

Today I did something I've never had the confidence to do before.

Let's start by reminding ourselves who I am. A fairly assertive woman on the whole. Some might say more assertive than most. I'm Scottish for a start and after more than twenty years living in England I've come to realise that culturally the Scots are generally more upfront than the English tend to expect. If I've got something to say I think of myself as someone who will generally say it. Occasionally friends will thump me on the back and say how impressed they were that I spoke out about something other people had been keeping quiet about and that needed to be said. Naturally outspoken, that's me. And I believe passionately in the power of giving and receiving feedback as a fantastic way of bringing about positive change. 

Yet, I have held back on giving a great deal of feedback to my various doctors over the last three years because I have been too afraid. 

I've been afraid that if I gave feedback or complained about things I was not happy about, that my treatment will be compromised, that I will be viewed as a complainer rather than as a vulnerable patient with valid care needs. That the professionals I perhaps should complain about will resent me, that they may even spitefully discharge me and refuse me treatment. I've been afraid that the precious and very limited time I get with my health care professionals could end up becoming an adversarial discussion, focused on their insecurities and need to defend themselves rather than working to find solutions for my debilitating symptoms.

This may seem silly, but I have spoken to so many thyroid patients who sadly have had very bad experiences when they have tried to raise concerns about their care. I have treated all the healthcare professionals I have dealt with with the softest of kid gloves. As I've said before, I find my self using "every inch of my professional communications skills" in each appointment, to try and keep them on side and not allow them to feel threatened by my stubbornly hard to treat condition. Call me a scaredy cat, I don't care, I've been ill, I needed to take care of myself. 

I think on the whole most doctors are good and do their best by patients. I am vehemently against the scaremongering and doctor bashing that goes on on many so called thyroid patient advocacy sites. We need to have good relationships with our healthcare professionals and to respect their expertise. However, I acknowledge that there are too many cases (one case would be too many) where patients who desperately need help are treated, frankly, appallingly, for whatever reason. In some cases it seems that some GPs are not as knowledgeable as they should be about the treatment guidelines for hypothyroidism, in many other cases it seems that doctors are highly stressed and short of time and not giving the attention to the individual patient's care that is needed. Often patients feel fobbed off and frustrated and in some cases years can go by with their activities of daily life severely affected as they languish under ineffective treatment and lack of support. This needs to stop. 

I've had a few unfortunate experiences since my diagnosis. Some I've shared on here (remember the outrageous letter I got from UCH that couldn't go unchallenged as they'd put in writing that I was so tired and forgetful I'd stopped taking my medication entirely, which was nonsense!), many I haven't. Like I said, I don't want to be seen as a complainer and if I complained about everything that has not been right this blog would perhaps have rather a different flavour to it.  I know the effect that reading endless complaints from other people (usually on those other negative sites referred to earlier) has on me, it makes me feel anxious and comes across as counter productive. Negativity is not the way to improve anything. People have a tendency to stop up their ears to criticism, if given it has to be given carefully and selectively, if you want the other person to take it on board. 

So now, ta daaa! I feel much better. And I have my new endocrinologist in part to thank for this (new since the start of this year). He is the one who persuaded me to trial a reduction in my T3 medicine and then to stop it entirely. He did this very gently, taking into consideration my fears of becoming unwell again as I believed the T3 was helping me. He explicitly told me I can go back on it if my health deteriorated without it and he gained my trust. So far so good. I am glad I listened to him. Coming off T3 meds has been a revelation.  I realise that I have less joint pain and I my energy levels and temperature both feel more normal without it. I hope being on it for so long has not set me up for long term bone problems

I say I only thank the endo in part because I also believe that changing my diet has had a very significant impact on my health overall and it is coincidence that the two major changes happened around the same time. When I was on thyroxine only before (aug'09 - July'10) I was not well at all. Now I am on thyroxine only and also gluten free, low carb and eating very little sugar I feel pretty good, so I think the extrapolation that the dietary change is significant makes sense (though I accept it's not proven and I may be wrong).  And I'm none too impressed that this course of action was never seriously suggested to me by any of my doctors, I had to discover it for myself. But that's not what I complained about today!

The reason I complained today is because I recently read the new NHS Constitution and also had a couple of very interesting conversations with the newly appointed Director for Public and Patient Voices at the new NHS Commissioning Board.  You may scoff but I found both totally inspiring. I am very concerned about resource levels in the NHS but I believe that the new constitution outlines a vision and determination  to transform it in a way that has a chance of turning out to be very positive for all of us. And one of the things that this transformation is dependent on is a culture of feedback.  Patient voices need to be heard and can make a real difference.  Doctors and patients should work in respectful partnership and both sides need to take responsibility for what they can change and make better. 

I'm not even going to bother telling you what I complained about. Not in detail anyway, it's not that interesting. I'll just say that I had an experience of trying to contact my doctor which was frustrating because he basically didn't respond and I ended up being given medical advice by his secretary which I believe was perfectly good advice and was in line with what I believed was the right thing to do, so I'm doing it, but I felt that as a level of care from the clinic the whole thing was not what it should have been. And while I'm an assertive and relatively knowledgeable patient and so was able to navigate the situation and come away with a solution which I believe will be fine, I dread to think how someone less confident or knowledgeable may have fared, or felt. So I told his secretary to give him the feedback that I was not impressed (which I doubt she'll bother to do) and I also told PALs, to be sure he got the message.

I did it because I felt well enough to do so, whereas in the past, when I was a little soggy brained poorly thing, complaining was just beyond my capabilities, and because the NHS Constitution tells me it is my duty as a patient to give feedback so that doctors can reflect on the care they are giving and perhaps change how they operate in the future. It's all about trying to make things better for everyone. 

I'll let you know if he discharges me, or gives me a hard time about it when I see him next! (in January.)  I do have a teeny bit of residual fear but hope that I'm just being silly. Hopefully it won't be an issue and perhaps the next patient may have a better experience if they have a concern and contact the clinic about it as a result of me speaking out. 

What do you think? Have you ever complained to your doctor? What was your motivation? What response did you get? Was it worthwhile? Have you seen the Patient Opinion site and considered using that as a way of giving feedback? Have you read the NHS Constitution or otherwise tried to get your head round the massive new structural changes taking place in our NHS? Please feel free to comment or leave any other feedback below. 

*waving and smiling*

Getting better all the time. :) 


Monday, 15 October 2012

Event press release, 10th Nov, Thyroid and Pregnancy

Welcome to my blog. This post consists of the press release for an event I'm organising next month - perhaps you could share it, it's on an important topic - thyroid and pregnancy.... read on..... 

The London group of the British Thyroid Foundation (BTF), a national patient charity, is organising an event for thyroid patients and people with an interest in thyroid disorders - and particularly their effect on pregnancy - at the Royal Free Hospital, London on Saturday, 10th November 2012.

Thyroid disease is very common and usually easily treated - one in 20 people in the UK have a thyroid disorder - yet it is largely a hidden disease and some cases can have a devastating impact on people’s lives.

Thyroid disorders are prevalent in women of child-bearing ageUncorrected thyroid dysfunction in pregnancy affects both fetal and maternal well-being. 

We need more thyroid hormones during pregnancy and in some cases a previously unnoticed thyroid disorder can be worsened when a woman becomes pregnant, risks include pre-eclampsia and miscarriage. 

All women considering pregnancy, and all health care professionals working with pregnant woman, should be aware of possible thyroid related issues.  Patients with thyroid disease need to be closely monitored during pregnancy.

The effects of thyroid dysfunction can also extend beyond pregnancy and delivery to affect intellectual development in the early life of the child.

The speaker at this event will be consultant, Dr Stephen Robinson, of St Mary’s Hospital in Paddington, who will be talking about “Thyroid disorders and pregnancy,” and will also answer questions from the floor on all aspects of thyroid disease.

Dr Stephen Robinson has a breadth and depth of experience in endocrinology and general internal medicine. He has contributed to specialist working groups at the Royal College of Physicians and Obstetricians, contributed to the confidential enquiry into maternal health and is also Chair of the thyroid cancer tumour working group.

Where and when

The event will take place on Saturday, 10th November, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital. For more information or to book a place, contact Lorraine Williams on Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

The Royal Free Hospital is six minutes walk from Belsize Park underground station, 14 minutes from Hampstead underground station, and just four minutes walk from Hampstead Heath railway station. The meeting will be held in The Atrium which will be clearly signposted from the main entrance. Parking space is extremely limited in the local area so attendees are encouraged to use public transport.

Notes for editors

The BTF London group was launched in 2011 and this will be our sixth event. We usually get around 40 attendees and feedback on all events so far has been very enthusiastic. For more information about this event or future activities, or to access thyroid patient case studies and feature ideas, contact Lorraine Williams on:

Lorraine writes a popular blog about her experiences with thyroid disease and running the BTF London group Thyroid Hope

TheBritish Thyroid Foundation (BTF) is a national patient support charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. It has been established for 21 years and works closely with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website

More information on thyroid and pregnancy can be found via The British Thryoid Foundation, Thyroid in Pregnancy Campaign  

Monday, 17 September 2012

Danielle's story - congenital hypothyroidism

Danielle very kindly shared her story with me last year. I hope it will be helpful and reassuring for anyone else diagnosed with congenital hypothyroidism, or who has a child with this condition.  

British Thyroid Foundation website also has telephone support contacts dedicated to talking about children's thyroid disorders so you may also want to follow up with them. 

Here is Danielle's story, as told to me in 2011:  

Danielle and baby Joseph, 2011
"I was diagnosed with hypothyroidism when I was around 6 weeks old, at a time when testing at birth wasn't carried out. My parents were concerned that I wasn't active or growing quickly, and the GP suggested a test. 
As a baby I was given thyroxine in liquid form, but I only remember later on, having 2 pills crushed and put in with cereal and milk. I quite liked the little ritual and though I was aware of my condition, I didn't see it as an illness, and certainly didn't feel I was different to my friends.
However, when on holiday, for example, I was frustrated when being made to get completely dry after swimming and before I could go and play, as the difficulty in keeping warm would make me shiver uncontrollably. On the whole, I had no fear of doctors, hospital or needles, and apart from a brief phase of getting almost hysterical, I was happy to go for blood tests- I still have an interest in medicine which I think started then. I certainly felt well-informed and was never worried by the idea of having hypothyroidism as it was always clearly explained that it is treated very simply with daily tablets. 
As a teenager I had phases of poor compliance, which were serious enough to affect my health. The resulting forgetfulness probably exacerbated the problem and although the doctors wanted to manage my hypothyroidism carefully during that time, in retrospect I don't feel I took the condition seriously. In my 20's I was still guilty of forgetting a dose here and there, although I
never felt the symptoms of under-replacement particularly badly. On one occasion the GP remarked that he was very surprised to see a very lively and energetic person in front of him given the very low t4 and very high (20 to 50) tsh levels on the recent blood test.
 When we were trying to conceive, I discovered that it could take longer as a result of the condition, though I was pregnant within a year of trying, and I found it helpful to read about other womens experiences of being hypo and having children. Of all the things I could do for my baby's health, being diligent with taking thyroxine would be the most important and since I
conceived, my attitude has been different as it's no longer just myself I'm responsible for.
 I was under consultant care throughout pregnancy and had frequent blood tests and extra growth scans, which thankfully showed that the baby was growing and developing normally.
In February I gave birth to Joseph, a perfect little baby boy (7lb 13 oz). When it came to his heel prick test results I was confident that if he did have hypothyroidism, it would be fine and we would know how to make sure he was healthy. He isn't hypothyroid, and I've since found out that the form I have isn't thought to be hereditary. 
With good gp care and access to clear information about the condition, and how it affects pregnancy and the growing baby, starting a family has been the same adventure as anybody else's, and hypothyroidism hasn't caused us any worry. Joseph being successfully breastfed for 6 months and is a very healthy boy with no allergies or other issues, and is an exceptionally smiley and good-natured baby! We're very lucky.” 
Thank you Danielle - it is so good to hear your experiences and Joseph looks adorable! He must be getting bigger now, time flies.  I finally posted this today in response to a question about congenital hypothyroidism elsewhere on the blog. I think Lisa will be really interested to read your story and something tells  me that it will be really helpful for others to read too - it is very good of you to share it. 

Love and light to all reading this. Comments are warmly welcomed, as ever.