"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

Lorraine

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. 

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. 

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

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.

*waving*

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.

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.

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)