Patient Voices on Psychological Wellbeing, May 2013

"I could talk about psychological wellbeing all day on this lovely couch"

The previous post introduced the Patients Voices meeting we held in London on 11th May. This post shares the notes from the breakout discussion group which looked at Psychological Wellbeing with a thyroid condition. 

With many thanks to the participant who has kindly typed these up and included the links to the two articles which help illustrate some of the points the group explored.

Psychological Wellbeing, Discussion Group Notes:

We talked about coping strategies people have for helping manage their psychological wellbeing with thyroid conditions.  

One person has been on anti-depressants for just under 6 months and it has transformed her life.  She did have adverse effects the first couple of weeks but was warned about this by her doctor and stuck with the prescription.  One interesting note is the antidepressant has a warning note it should be not be given to thyroid patients but the doctor is still prescribing the medication. 

A couple of people talked about concerns if long term lack of treatment for thyroid conditions might affect brain function generally.  Some in the group had suffered untreated for years, they think in hindsight. 

Also when the doctor does realise there is an issue with the patient's thyroid, they don't say enough about coping with how people may FEEL with this condition. 

There was a bit of a discussion about the differences people are feeling between overactive and underactive thyroid conditions, but we didn't talk a lot about that, and I don't have any detailed notes about it.

One person talked about her issues with general physical weakness.  She talks a lot to herself to keep her spirits up.  Also she's learned to pace herself to bank her energy.  

Working and raising children is an added stress.  If people have the opportunity to not work, then they can rest more during the day.  Also if you work, you'll try to hide your symptoms from co-workers which is an added stress.

For many, there was a feeling of years wasted.  Too often people compared themselves to others and thought they hadn't accomplished as much.  One person keeps a journal listing anything she does and completes.  She refers to that to help her realise she is getting things done.

I mentioned research I've seen in the past where the human brain is wired to remember negative experiences much more prominantly than positive experiences. The theory is this goes back to caveman days where that memory trait helped people to survive.  One way to combat this bias is to keep a scrap book of positive things you did or experienced. That way you can read that to balance out your memory better.  I can't find the original article anymore, but here's 2 articles on the internet I found just now that indicate similar technique:

Article One - Journaling and sharing can enhance happiness 

Article Two - The memory bias

 Someone mentioned that coping techniques generally for any chronic illness can be useful, so don't just look for articles about thyroid conditions.

Relaxation and exercise are really helpful to people in the discussion group.  Also breathing and meditation were found to be helpful.  Trying to 'be in the moment' was good too.   I mentioned some research I've seen that walking and getting outside in nature is really good for health and mental wellbeing.  There's research indicating the effect of walking can be equivalent to taking antidepressants.  Also a friend of mine and I realised as part of losing weight that the biggest battle with exercise is getting out the door initially.  Once you pass that hurdle you do exercise like walking and you enjoy it - even 5 or 10 minutes is good.  So we thought you have to do whatever you can to facilitate getting out the door - like keep your walking shoes and exercise clothes handy/nearby the door.

Coming back to doctors, people said that doctors generally don't explain enough what could happen with regard to thyroid conditions.  They don't seem to pool knowledge.  Also advice is not holistic - you have to advocate for yourself.

It's also variable how people's conditions are picked up correctly by doctors.  With some patients the doctor figures things out quickly and with others they wait years for the condition to be recognised correctly.  It also makes a big difference if the doctor is supportive. 

There seem to be lots of different opinions amongst different doctors and also lack of follow through by doctors on other related health issues.

When doctors more clearly say what's happening or what to expect with the condition, then the patient feels more psychologically stable because they understand more what is happening to them. 

Sadly  some doctors  don't seem to be concerned about quality of life for patients with thyroid condition.  Also thyroid conditions are not viewed as a major illness. 

Lastly, it was noted that the group on Saturday is really rare and very treasured by attendees.

Patient led workshops, how we did it....

We held a meeting at the Royal Free in Hampstead on 11th May 2013. We called it Patients Voices and we had about 35 thyroid patients attending, with a range of thyroid conditions and varying levels of experience and knowledge about them. Most were London based but others travelled from as far afield as the Lake District and Liverpool.

We now have an excellent format for these kinds of meetings which you are welcome to copy if you want to do something similar yourself. Here is the programme:

British Thyroid Foundation support meeting, 11^th May 2013 

10am – Registration and refreshments 

10:05 – Introductions – Who are we with thyroid disease?
·       Everyone is invited to sit together in a circle and share: our names, how we found out about this event and what we are hoping to talk about today, those who wish to can also share what thyroid condition we may have and how we are feeling today.    

11:15 – Relaxation session – those who wish to are invited to participate in a short guided meditation before the break. 

11:20 – Announcements 

11:25 – Break, refreshments will be served and you are invited to choose a breakout discussion group to join after the break 

11:50 – Discussion groups – we will break into smaller groups to explore those issues which have been identified as being of most interest. Eg: Psychological Wellbeing, Getting the most out of our doctors / Managing symptoms...Questions for future speaker topics etc.   

12:40– 1pm The groups will feed back on the key things they discussed and any actions they have agreed which they’d like to share with everyone, for inclusion in a report for the British Thyroid Foundation website and Lorraine’s blog.

1pm – close   

In the first session we identified several common themes that were of interest to most of us and so the discussion groups after the break were as follows:

• Diet and Lifestyle
• Psychological Wellbeing
• T3 - what's it all about? And how do we access reliable health information?
• How to get the most out of our doctors
• Spotting and managing Symptoms

We used volunteer facilitators from within the group who had appropriate skills and had agreed in advance to lead the break out discussions.

Each discussion was lively and fruitful. I will be sharing the notes from each of them in posts to follow. 

Comments welcome and please share these posts with anyone you think might find them helpful, whether they are a patient or a healthcare professional.

One zillion questions related to nutritional science and thyroid function....

Good news, I’m happy to announce that we now have a wonderful programme confirmed for our November British Thyroid Foundation patient information event in London:

2^nd November 2013: Nutritional science and thyroid function - We will have two speakers from the Department of Nutritional Sciences, University of Surrey: 

• Dr Sarah Bath will give a talk on: Thyroid function, iodine and goitrogens
• Professor Margaret Rayman will give a talk on: Selenium and thyroid autoimmune disease.

Full details are on the BTF website.

I am very happy indeed to have managed to get these speakers. The topic is one that comes up time and again at our meetings – many thyroid patients, me included, are really crying out for reliable information on how nutritional factors might influence our wellbeing.

my supplement drawer, sigh

My own experience has been that making dietary changes has been exceptionally helpful in relieving symptoms which I had assumed were thyroid related. And I take various supplements, but I’m never entirely sure which, if any, are really helping me. I'm quite embarrassed about my monthly expenditure on supplements actually. But what's a girl to do??

While there are lots of opinions and many people who can talk from personal experience about what may have worked well for them, or for other people they may know, I never know who to believe or what it’s sensible to act on. Often, just a little bit of probing will uncover that nutritional advice being merrily doled out may not have a scientific basis. Mind you that doesn’t necessarily mean it definitely won’t work.  

My experience with going gluten free proves, to my mind, that just because science doesn’t understand everything, that doesn’t mean that trying something leftfield may not sometimes be effective. I’ve spoken to enough people who have had experiences of being very unwell who seem now to be radiantly healthy, and attribute their recoveries largely to dietary changes, to know that those people are doing something right!

Oh but the thyroid is a funny old thing and so interlinked with so many other things. I want hard facts. I want to hear from proven experts. I won’t just believe what I’m told just because someone else is sufficiently confident about their own opinion or personal experience that they will tell me it’s the truth for me too. I know that if I do the wrong thing it can have profound and sometimes very slow to materialise unfortunate outcomes. I have a zillion burning questions and I want a proper scientist to answer them. I know we won’t have time to cover everything that I and the rest of the London Group want to know. But I am looking forward to learning as much as I can from our two very eminent and generous speakers, who are kindly giving up their Saturdays to come and talk to us about what they know.

Here are some of the questions I'm hoping we may get answers to:

•  Do we need to be careful not to eat too many goitregens? Are some worse than others?
•  I became more hypothyroid after I replaced dairy with soya for a period of months, might that have been a factor?
• Although I tested negative for celiac (while eating gluten) I feel much better since mainly cutting gluten and other fast burning carbs from my diet –  can you explain why that might be?
• I take 200 iu selenium every day, is that a good idea? what is a sensible dose and should my levels be monitored?
• Many individuals with borderline thyroid blood results, who are not prescribed thyroxine, consider taking iodine but we are told this could make them unwell, what advice would you give?
• I seem very sensitive to sugar but I’m not diabetic, is there an autoimmune connection?
• What moves are there to integrate nutritional science into the NHS  treatment of hard to treat thyroid patients?
• How big an issue might food intolerances be in relation to autoimmune conditions in general?
• How can we as patients help ourselves?

What questions would you add to the list?  We’ve got plenty of time before the meeting. This is a good opportunity to build a comprehensive list of what we’re all longing to know..... The likelihood is we will have at least one follow up talk nutrition after this initial one as it's such a big topic, although I've no idea who will be the best person to get, it's taken over a year to find Professor Rayman and Dr Bath. But by hook or by crook we will learn as much as we can, so that we can help ourselves to feel as well as possible!

Please post your thoughts below.

I'm also fascinated to hear from you if you have had an interesting (good or bad) nutrition related experience...

With love and light.

Foggity fog, damn creeping fog.....

I have been quiet on here again, did you notice? I didn't! Ha ha. No really, I didn't notice what was happening to me. I was slowly getting a bit hypothyroid again the last few months. It crept up on me. Slowly like a snake. it wound it's way around me and squeezed and I didn't notice I was fading away.....

This illness is nuts. Seriously. I think I've cracked it then it's like I've fallen through another trap door and there's a whole new set of lessons to be learned, assumptions to be adjusted, new stuff to be taken on board. And I just pick myself up and carry on.

So, to update you all...... Remember I told you I had my meds reduced in September last year? After going gluten free I was feeling so much better. I'd been able to come off T3 meds and was taking thyroxine only and feeling good and then became concerned I was actually becoming over active so was actually able to reduce the thyroxine dose slightly. And I was SO PLEASED!! It was like, hurrah, hallelujah I am on the mend. I have cracked this thing.

Well I carried on feeling pretty good for a few months. Over Christmas I abandoned my gluten free diet and I felt a bit rubbish again but I was relaxed about that. I just though, hey ho, festive season is here, I shall eat what I like and put on a couple of pounds and then go back on the straight and narrow afterwards and it will be fine.

cakes and mulled wine at Christmas

Then after Christmas we had a death in the family and I had to go overseas for the funeral and obviously while I was there I just ate whatever came my way because I wasn't going to be fussing about my diet when my family were grieving. And we all got into comfort eating a bit. Why not, right? Hard times call for desperate measures. Cake and chocolate is good medicine sometimes.

I got home towards the end of Jan and I just put the fact that I felt brainfoggy and tired down to the poor diet over a few weeks and I assumed it would sort itself out as I got back on track with eating well again.

It was mid March before I realised that something was wrong. I had been tired for weeks. It was getting worse not better. I was becoming forgetful and a bit clumsy. I would be walking up the hill to our house and feel like gravity was pulling me back down it. Ooh, err, better get my thyroid checked.

I'd had it checked before my trip abroad. It, (my TSH, I won't bore you with my other numbers), was 1.7. Up from 0.9 the previous September. Up from the very suppressed 0.01 or thereabouts it had been for the previous 18 months. I thought 1.7 was a pretty good number. If I felt good at 1.7 then  hurrah. My endocrinologist reckons being between 1 and 2 is probably optimal and that makes sense to me. I'd been too suppressed when I was taking T3 and it looked like it was slowly adjusting to a more sensible level.

But in March it had jumped to 3.4. And I felt awful. So now my dose has been ever so slightly increased again. And I am slowly starting to feel better. Phewwew.  Hopefully it won't take long before I am properly back on track.

Lessons learned:

1. Meds adjustments can take a long time to reveal their full effect on the body. That's why it makes sense not to make lots of changes in a short space of time. We  need time to adjust. 
2. Small adjustments can make a big difference. I was taking alternate doses of 100 and 125 micrograms back in September and we dropped down to 100mcg every day. That was, in hindsight too big a drop for me. My endocrinologist has now suggested I take 100mcg 5 days a week and 125 at the weekend. I am hearing more and more about people on very finely balanced doses. We really need thyroxine to be available in smaller doses.  (this is something the BTF is talking to drug companies about and can hopefully influence) 
3. I need to listen to my body more and take action more quickly if I think I might be going hypo. My husband actually said to me in January he thought I might be getting ill again, but I poo pooed  him. I was so focussed on a positive view of the situation "I'm fine, I'm fine, I know what's going on here, I just need to eat less cake/ get over this lingering virus"  (oh fool me, there probably never was a virus, hypothyroidism was creeping up on me again). So as well as listening to my body more I also need to listen to my nearest and dearest who knows me so well and is so sensitive to what's going on with me. I hate going to the doctor because I don't want to be seen as a sickly person. But I am a sickly person and I need to pay attention and go for help when it's neccessary as help is at hand and I am going to be fine now. I know it. :) 

Hey ho, that's what's been going on with me. What's been happening in your world? Send me some #thyroidlife love please. I feel like I need it! 

#Hope :) 

Never Give Up - Thyroid patients London meeting, Feb 9th 2013

So I woke up late, precisely 20 minutes after I was supposed to be on my train on the way to London for our event. And there’s only one train an hour. Yikes.  Fortunately I’d been aiming to be there very early, so I still got there before kick-off, just.

the pretty Kent countryside, seen from my train, 9th Feb 2013

My wonderful fellow volunteers had everything under control when I arrived. I am so lucky to have found such an amazing bunch of people to help run the BTF London Team. I always get a bit worried beforehand because I’m never sure how many other volunteers I’ll have but so far it has always worked out perfectly, we don’t always have the same people on the Team, as some have to reduce their involvement due to health or other commitments from time to time, which is totally fair enough, but other people always seem to come forward and lend a hand. I love the Team. They are all amazing.  I do worry though that the group is such a fragile thing, held together purely by our collective good will.

We had 76 attendees confirmed so there was quite a bit to do, setting out the literature,  putting up signs, registering everyone who arrived, manning the information table, testing the A/V set up, etc. Fortunately the Royal Free catering team were taking care of our refreshments. Doing drinks for so many people at these events would just be too much for us to handle ourselves so we bite the bullet each time and pay for catering on arrival and in the break, counting on donations to cover the cost. 

 

Professor Colin Dayan arrived just after me, as did our other patient speaker. Phewwew. We started more or less on time and the next 3 hours flew by, seeming all to go very well.

I did a talk about my own experiences of psychological symptoms and managing my psychological wellbeing with thyroid disease then our other patient speaker did the same. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while.

Then Colin Dayan gave his talk which was excellent and well received, though it had a lot of graphs and data in it which were sometimes a little challenging to follow. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.

He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that research in this area is a global effort, with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients.

It seemed that his team have a particular interest in a subgroup of patients which initially I felt I belonged – hard to treat hypothyroid patients.

As far as I understood the data that was being presented, it seemed that there is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general.  Some of the questions researchers are asking are:

• Is this coincidental or somehow linked to thyroxine treatment?
• Could combination treatment (with T3 and T4 meds) be better for these patients?
•  Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?

The BTF London group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.  The applause his talk received was heartfelt.

Colin is seeking funding for more research. I don’t know how much he needs, it’s probably lots. As some of you know, in a previous life (oh, it seems so long ago now), I did some significant fundraising for cancer research. Maybe one of these days helping thyroid researchers get the funds they need to do more work in this area might be something I could do. To be honest though it seems like a daunting and not particularly appealing task. I know from my past experience just how expensive serious medical research can be. And fundraising really doesn't float my boat as much as doing other things does. Still, food for thought.

The other thing is, while I recognise the value and importance of work like this and I applaud those who do it, it seems to be just scratching the surface and I know how long it takes for medical research to deliver changes for patients. There are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.

For myself, I know that treatment with Vitamin D and subsequently changing my diet have been highly significant in my recovery. Everyone is different of course, what worked for me is not necessarily going to be helpful for someone else. But so few patients are steered to consider dietary changes or even tested for Vitamin D deficiency by their healthcare professionals. And so few are offered counselling or CBT, or if they’re offered it the potential benefits may not be explained properly and it can come across as if they’re being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a vast gap in proper medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections.

Equally, perhaps mainly because of stretched resources and cultural issues, the experience that so many patients seem to have of not being listened to and not having their experiences properly acknowledged, never mind effectively addressed, by their doctors,  was reported by attendees yesterday as being a huge factor affecting their psychological wellbeing while ill.

As another thyroid blogger (@hypo_man) put it to me on twitter the other day: 

“being denied treatment has impacted my psychological wellbeing. Self-doubt this has caused is unforgivable”

I know the new NHS Constitution is supposedly working towards a massive culture change in healthcare delivery in this country which sounds great and I believe needs to happen, but I have many misgivings about whether that whole agenda is actually just a smokescreen for government cuts. And anyway, the issue here is not just about the paternalistic and dismissive attitude that some doctors exhibit towards some patients, thereby making their situations worse not better in some cases - it’s actually about knowledge standards and consistency of care for patients who’s lives are being impacted to a ridiculous extent, in some cases over a very prolonged period of time.

It was interesting that Colin’s research measured only depression. Brain fog, which is entirely distinct and seems to be a major concern for almost every thyroid patient I talk to, didn't appear to have been considered at all.  I had very foggy brains for at least a year, but did not score on any measure of depression, because - amazingly - I was never actually depressed. 

So I feel a little sad after yesterday. Although thrilled the event went so well and feedback was so generally positive. And although I’m incredibly grateful for Colin’s work and to him for giving up his Saturday to come and talk to us and for being such a total super star, sharing so generously and answering so many questions so thoroughly and charmingly. He really was a great guy.

It just seems medical science is a long way from being able to make a very meaningful difference for thyroid patients who struggle and we simply have to continue fumbling in the dark, doing the best that we can, trying different things, thinking positively, keeping an open mind and being patient, for the foreseeable future. At least I can happily report that, for now at least, by doing all those things I seem to have recovered a good degree of physical and mental wellbeing. I can think clearly, I have lost weight, I can exercise, I feel good overall.  I celebrate that.

At least the good doctors will acknowledge that they don’t have all the answers and are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.

With thanks and good wishes to those good doctors I’m referring to and very special thanks to Professor Colin Dayan for yesterday.  Let’s never give up. 

Thyroid function and psychological wellbeing – Event

Hello dear friends, today I'm sharing a press release for an event I'm organising for thyroid patients in London. Thank you so much if you can share this link to help spread the word:

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 psychological wellbeing - at the Royal Free Hospital, London on Saturday, 9^th February 2013.

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. 

People with thyroid disorders often have psychological as well as physical symptoms, yet these are seldom talked about and they can be very confusing and upsetting for patients who are unlikely to be prepared for them.

The main cause is often abnormal thyroid hormone levels. Hyperthyroidism can cause anxiety, irritability and mood swings, while hypothyroidism can cause mental slowing and memory problems as well as depression. For some people symptoms can feel like the onset of dementia which can be very unnerving both for patients and those around them. 

When properly treated psychological symptoms usually clear up, but this can take quite a long time. One thyroid patient said: 

“I feared I would never work again my thinking had become so muddled but now I am back to my usual bright and productive self – it’s a huge relief!”

The speaker at this event will be Professor Colin Dayan, Director of the Institute of Experimental and Molecular Medicine at Cardiff University School of Medicine. Professor Dayan and his team have conducted extensive research into thyroid function and psychological wellbeing and are at the cutting edge of understanding this little understood medical challenge. 

Where and when

The event will take place on Saturday, 9^th February, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital. For more information or to book a place, email lorrainewilliams@btf-thyroid.org. 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 seventh event. We usually get around 40 attendees and feedback so far has been very enthusiastic. For more information about this event or future activities, or to access thyroid patient case studies, images and feature ideas, contact Lorraine Williams, email: lorrainewilliams@btf-thyroid.org.

Lorraine writes a popular blog about her experiences with thyroid disease and running the BTF London group www.thyroid-hope.blogspot.com 

The British 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 www.btf-thyroid.org 

More information on thyroid and and psychological wellbeing can be found via The British Thryoid Foundation’s excellent guide to Thyroid and Psychological Wellbeing 

"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