Light, air, space, time, breath

I haven't blogged on here for ages. I've been mostly quite well, that's why! So there is light at the end of the tunnel for anyone feeling rotten with hypothyroidism. I've got various projects on the go these days so very little time for thyroid stuff but I still intend to post on here from time to time and in particular I want to get closer to the hypothyroid care strategy project which BTF are undertaking and where I see lots of opportunities to make things better for thyroid patients. I feel I've learned a lot on my journey and believe those lessons can be put to some use to help others - as and when I have time around the edges of the rest of my life.

There was a point when my work with the London Group and handling telephone support calls for BTF was taking up a huge amount of my life. My husband was alternately proud of what I was doing and horrified that I was doing so much and not getting paid for it! As I slowly got back to a degree of reasonable  health it was a bit like having the structure of a job and I really appreciated having the responsibility for something that felt important and where I felt I could be of some use. But it got to the stage where it was taking up more hours than I could justify so I had to take a big step back.

I am so delighted and thankful that the group is ongoing and so thankful to the Team for continuing with it. And much as I very much enjoyed talking to other thyroid patients on the phone, as a support contact for the charity, I'm very relieved not to be constantly having those kinds of conversations any more as they are emotionally quite draining, especially when I was effectively on call all the time and listed as the main contact for the whole of London, the most densely populated part of the country!

I'm very happy to be able to flag up to you that the group have now announced a whole series of dates for meetings in London this year, which is brilliant. You can get details on the link at the top right of the side navigation, or here. Precious space and time for thyroid patients to come together, support each other, learn about our conditions and what we can do to help ourselves-and just have a nice time with good people who have some insight into what we're all going through.

I can't make the Feb meeting but will be at the one in March. I hope to see some of you there.

Signing off for now with gratitude to you for reading and being with me on my thyroid journey. It has meant the world to be able to connect with so many other people going through similar experiences and I intend to stay connected and continue to share both my own experiences and anything else I think might be of use to others with hypothyroidism. Because it's a tough old game and we all need all the support and reliable info we can get - right!

One thing I will do this year is write up the notes from the various talks we've had that I haven't had a chance to report back on fully yet.  If there's one in particular you'd like me to do first let  me know.

Sending smiles to you and yours.

And a nice beach photo taken this chilly February morning here in Broadstairs. I won't say anything about how cold it was but doesn't it look pretty!

Viking  Bay, just 1 hour 22 mins from St Pancras on HS1 

two steps forward, one step back...

I'm starting to feel like I'm doing a little dance. Two steps forward, one step back, you know the one.

I put on my (ancient) dancing shoes and.....

I saw my new doctor on Friday. He seems very nice. What a relief.

He thinks I might be anemic again.  Blood test done, awaiting results of that, full blood panel and thyroid function test, which is due again around now.  I'm  hoping that somewhere in these test results will be some clue as to what to do next... Less thyroxine? More? Iron tablets? Something else?

Because I'm tired, so tired, again. And it feels like I've felt like this a lot of this year which is passing me by in a bit of a blur. It's now October 2013. I was diagnosed August 2009.

My old doctor said that quite often people with hypothyroidism do not find their symptoms go away after diagnosis. She apologised that I had been told I could expect to feel well once treatment is optimised, she said the sad truth is that may not happen.

Well she's in the blummin bin as far as I'm concerned.  I won't be seeing her again, not because she said that but for all the other reasons already shared in previous posts. But I can't help but wonder if perhaps she was speaking the truth there. Is there perhaps not going to be a return to "full health". Do I just have to accept that my energy levels and cognitive function will be for ever a bit under par now?  Or was her saying that, just one more sign that she is in fact an uncaring and unsympathetic GP who does not take enough care of patients with chronic health challenges and I am better off not having her as my doctor anymore, because she is clearly not going to be much use to me with an attitude like that?

I have no idea.

I got an email from one of my fellow BTF London Group volunteers today. She said "the more I know the more I realise I don't know". Her and me both.

The Scottish Thyroid Petition ladies seem to be making some progress getting the Scottish Parliament to take some notice of the plight of those thyroid patients who are not easily returned to good health.  I'm impressed with their energy and tenacity, still have not got my head round all the science they are putting forward. I find it complicated. Still I feel their efforts are helping raise awareness amongst policy makers and health professionals and I think that's a good thing.

BTF also appear to be making progress with their hypothyroid care strategy project and I must speak to the lady leading that soon, to see  how/if I can help. Their approach sounds thorough and promising.

Our next London Group event is in a couple of weeks. There's a load of stuff to do to prepare for it. We haven't yet planned any events for 2014. I'm wondering if I really want to continue after the November meeting. I value the group but there's so much involved in making it happen. I wonder if I should be shifting my focus.

I was invited to speak on a panel at an event for Doctors developing their use of information technology. I had to decline. It was the Saturday after the above event. I will likely be tired. I need to take care of me. A shame though. I'd have liked to have participated. But I can't do everything.  I have to accept that.

I've had two long calls with people this week with tricky thyroid related health challenges and while I was able to help a bit by chatting to them and sharing my experiences I felt a bit overwhelmed with the responsibility and in both cases they sounded like  they really needed specialist help from an endocrinologist which they are struggling to get on the NHS. I feel a bit like Canute in the face of the ocean. So many people who need help and support and seemingly so little structure in our healthcare system to provide it things do not go as they perhaps should at GP level.

Hey ho.

I did manage to go dancing this week, that was fun. I was invited to a lovely charity do for Children in Need, because I'm managing a fundraising partnership that will hopefully raise a lot of money for them and some other good causes next year. It was inspiring to hear about some of the work they are doing, there were lots of great acts, a lovely dinner and thanks to a coffee and two chocolate truffles at the end of the meal I had energy to dance to Billy Ocean who sounded as fresh and upbeat as ever at the end of the night! A thoroughly uplifting evening.

So I guess I'm pondering my options at the moment.  Wondering what my next steps will be on this fascinating journey I'm on.  Lots to think about, meanwhile I keep dancing.

Billy Ocean, Pudsey Bear, Children in Need, Evening with the Stars, 2013

200 miles later...

This weekend I met an inspirational lady.

Jill Liddington has just walked over 200 miles to raise awareness of thyroid disorders and fundraise for the British Thyroid Foundation.

Yes, you heard right, 200 miles. From Yorkshire to London.  How amazing is that?!

Along with some of her friends and family and members of the British Thyroid Foundation London Support Group, I met her at Granary Square, St Pancras, this Sunday, on completion of her epic challenge.

Though footsore, Jill was in great spirits, every step of the way she had been accompanied by friends, family and supporters who popped up along the route to walk with her at different stages. I think the whole thing has been quite an incredible experience for her, she spoke very movingly about how touched she has been by everyone's support and she has already raised over £2000 for the charity, with donations still coming in.

The photo above shows her at the finish line, along with those who had walked the last leg with her, including Karen George of the London Group and her partner, Rich -  and some young relatives who brought a special home made banner.  Well done Jill!

It's not too late to make a donation and leave a cheering message on Jill's fundraising page. Every penny raised will go to British Thyroid Foundation to help them do more for thyroid patients.

Click to visit Jill Liddington's Just Giving Page

Patient Voices on Managing Symptoms, May 2013

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

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

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

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

Managing Symptoms, Discussion Group Notes:

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

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

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

  

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

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

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

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

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

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

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

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

•         Exercise helps to regulate temps
•         Wearing layers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Other things that were mentioned in breakout group:

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

 Other things that were mentioned, but maybe in wider group

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

Confusion - you just won't believe me.....

From time to time I like to roll out Auntie Margaret's disco ball so you can have a jolly soundtrack while reading this blog.

Confusion - New Order

I hope you will enjoy New Order's Confusion. It's a tune from my youth, rather stuck in my head at the moment, read on and you will find out why.....

The NHS changed on 1st April 2013. I went to a conference last year where I found out quite a bit about the vision and commitment behind the changes and actually came away feeling cautiously optimistic. I could see the strong desire to become more patient focussed. There were a lot of fine words. The new NHS Constitution really makes a lot of sense.

My concern was that NHS resources are so stretched, the system so Byzantine and the changes being pushed through at such a fast pace that it may prove very difficult to realise the ideals supposedly being pursued. Also, my natural suspicion of politicians' motives made me wonder whether actually the whole restructure project is really in service of a totally different agenda - basically the dismantling of our NHS by creating something so totally unworkable that staff and patients will simply exit the system in ever increasing numbers. Is it really possible that our government could be so cynical they would actively seek to destroy this wonderful institution which we all care about so passionately and which has so much going for it? My optimistic soul hopes fervently this cannot be the case.  But you know, sometimes I can't help but wonder.

So what is going on? Total and utter bloody confusion on one hand. Some very determined, intelligent, committed individuals trying to do something really good on the other.

I went to another meeting yesterday - the board meeting of the governing body of my newly created local clinical commissioning group (CCG). It was open to the public, in the spirit of transparency and welcoming patient voices. It was interesting and yet again I came away feeling cautiously optimistic.

I was quite excited to meet a chap on the board who's a professor of endocrinology and was very encouraging about the British Thyroid Foundation getting more involved in lobbying CCGs around the country to improve standards  and consistency of care for thyroid patients. He even indicated there  may be some funding available to help the charity do this. He said that GPs should have greater access to specialist knowledge to help their hard to treat thyroid patients, under the new structure. And he kindly offered to send me some documentation that will help me understand where things are going, with (I'm  hoping) the potential for the charity to influence things going forward.

(I hear on the grapevine that BTF will soon be launching a three year Hypothyroidism Care Strategy, more on this in future posts....)

He and all the other CCG governing board members who were there appeared to be bright as hell, highly motivated and very much focused on  improving patient care, listening to patients and effective resource management in order to provide the best possible quality of integrated care. Impressive.

Rewind to the real world - a month ago I asked my GP to find out why my endocrinologist had sent me a blood test form which was a duplicate of one I already have which he had previously told me to use before my next appointment with him (due in about 5 months time).  It had arrived via the post with no accompanying note so I don't know if I have it in order for him to monitor me between appointments, perhaps depending on how I feel ( that would make sense)  or if it's just a duplicate been sent in error (perhaps more likely). A month later I chase for a response because I have a sneaking suspicion I should possibly be having the test fairly soon, particularly as I still don't feel quite right (about 6 weeks after my last test), the receptionist confirms that the GP sent a letter to the endo the day I spoke to her but no response has come back. Apparently the letter was sent via COURIER.

The last time I tried to ask a question of my endo I had gone direct to his secretary (naively assuming that was the best way to contact him) and had quite a weird experience as she ended up telling me to reduce my medicine without seeming to take his advice on the matter and I ended up (a few months later) quite unwell because the dose reduction was too much. It was a bit of a complicated scenario. I was feeling over medicated so thought a reduction was the right thing to do and after trying and trying to get the docs view on it I finally gave in and just did as I was told by his secretary, she basically capitulating to what I was saying I thought I probably needed to do. Subsequently (many months later when I saw him and by which time I was proper hypo again) the endo said he would have advised a more subtle adjustment.  Not good really is it? He also told me if I had any questions in the future I must go via my GP as she would be able to get an answer by going through the correct channels.

Anyway - the learned professor, at the forefront of the brave new NHS, with all it's efficiencies and openness and patient-centric approach,  had told me that GPs can now access information from specialists via the Choose and Book system. Apparently it's not just for booking appointments, it's also a communications channel that should enhance the quality of the care we patients get. The key to quality care for thyroid patients, according to the Prof (and I agree) is GPs listening to symptoms, not just looking at blood test results - and conveying quality information about those symptoms to specialists, who can advise them on what tests to order/treatment to try, if they are unsure themselves what to do. The key to success is quality information.

My GP's surgery have never heard of Choose and Book being used in this way. Perhaps it's a new thing coming in and has not actually started yet. Anyway. The fact is that last September because I was unable to access specialist advice I started taking a lower dose of meds than I should and by March this year I was very unwell again. And I am still not as well as I was before so I still want some specialist support for what to do, or not to do about it and my GP has been unable to get a simple to answer to a simple question of whether or not I am supposed to get my blood tested for over a month.  The chances of there being any transfer whatsoever of quality information relating to the actual symptoms I am experiencing being relayed to my endocrinologist seem remote. the last time I saw my GP she appeared so dismissive and almost hostile seeming, with no interest whatsoever in hearing about any of my symptoms I am almost at a loss to know how I should approach her to try and get her on side and helping me work out what I should be doing now.

And I'm so mystified about why she seems this way because I honestly think she's mostly a good doctor and very conscientious - she sent the query to the endo the same day I saw her. I know she works long hours and takes a lot of time with many of  her patients, she obviously cares about her job and often gets rave reviews.  I don't know if there's something about the way I present in surgery that gets her back up. I try not to be a nuisance but at the same time I am probably a bit more challenging as a patient than perhaps she's used to. I ask questions, I have opinions, sometimes I get tearful, usually when my thyroid hormones are out of kilter.  I don't know. I appreciate that the long hours she works just might mean she sometimes feels under pressure and her communication style suffers as a result. I try to be understanding of that.  I stick to the facts and do my best not to get emotional. But it's hard, being ill. I wish the system was a little bit more supportive of that than it sometimes seems to be.

So today I'm confused. thank heavens for early '80s classic pop, always a comfort in times of uncertainty. :)

How are things with you, what do you think of the NHS changes? What's your experience been recently of navigating the system? What do you think of the latest offering from Auntie Margaret's disco ball?

In solidarity.

Thyroid Hope.

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.

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 :) 

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

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.