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

self scrutiny, not always recommended......
(pic from 2010)

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

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

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

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

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

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

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

Feb 2010, not looking fabulous, feeling small and sickly

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

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

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

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

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

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

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

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


with love and light


Hope (Lorraine)

A brave new world, giving feedback to my doctor

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*waving and smiling*

Getting better all the time. :) 

Hope

Event press release, 10th Nov, Thyroid and Pregnancy

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

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

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

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

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

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

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

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

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

Where and when

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

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

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

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

Danielle's story - congenital hypothyroidism

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

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

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

Danielle and baby Joseph, 2011

"I was diagnosed with hypothyroidism when I was around 6 weeks old, at a time when testing at birth wasn't carried out. My parents were concerned that I wasn't active or growing quickly, and the GP suggested a test. 

As a baby I was given thyroxine in liquid form, but I only remember later on, having 2 pills crushed and put in with cereal and milk. I quite liked the little ritual and though I was aware of my condition, I didn't see it as an illness, and certainly didn't feel I was different to my friends.

However, when on holiday, for example, I was frustrated when being made to get completely dry after swimming and before I could go and play, as the difficulty in keeping warm would make me shiver uncontrollably. On the whole, I had no fear of doctors, hospital or needles, and apart from a brief phase of getting almost hysterical, I was happy to go for blood tests- I still have an interest in medicine which I think started then. I certainly felt well-informed and was never worried by the idea of having hypothyroidism as it was always clearly explained that it is treated very simply with daily tablets. 

As a teenager I had phases of poor compliance, which were serious enough to affect my health. The resulting forgetfulness probably exacerbated the problem and although the doctors wanted to manage my hypothyroidism carefully during that time, in retrospect I don't feel I took the condition seriously. In my 20's I was still guilty of forgetting a dose here and there, although I
never felt the symptoms of under-replacement particularly badly. On one occasion the GP remarked that he was very surprised to see a very lively and energetic person in front of him given the very low t4 and very high (20 to 50) tsh levels on the recent blood test.
 When we were trying to conceive, I discovered that it could take longer as a result of the condition, though I was pregnant within a year of trying, and I found it helpful to read about other womens experiences of being hypo and having children. Of all the things I could do for my baby's health, being diligent with taking thyroxine would be the most important and since I
conceived, my attitude has been different as it's no longer just myself I'm responsible for.

 I was under consultant care throughout pregnancy and had frequent blood tests and extra growth scans, which thankfully showed that the baby was growing and developing normally.

In February I gave birth to Joseph, a perfect little baby boy (7lb 13 oz). When it came to his heel prick test results I was confident that if he did have hypothyroidism, it would be fine and we would know how to make sure he was healthy. He isn't hypothyroid, and I've since found out that the form I have isn't thought to be hereditary. 

With good gp care and access to clear information about the condition, and how it affects pregnancy and the growing baby, starting a family has been the same adventure as anybody else's, and hypothyroidism hasn't caused us any worry. Joseph being successfully breastfed for 6 months and is a very healthy boy with no allergies or other issues, and is an exceptionally smiley and good-natured baby! We're very lucky.” 

Thank you Danielle - it is so good to hear your experiences and Joseph looks adorable! He must be getting bigger now, time flies.  I finally posted this today in response to a question about congenital hypothyroidism elsewhere on the blog. I think Lisa will be really interested to read your story and something tells  me that it will be really helpful for others to read too - it is very good of you to share it. 

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

Hope

Hints and tips for poorly hypothyroid patients

It's now more than 3 years since I was diagnosed as hypothyroid. What have I learned in that time? Quite a bit. How have things changed? Beyond measure. How is my health these days? A LOT BETTER - HURRAH!!! For those who are currently feeling rotten, there is light at the end of the tunnel. I firmly believe I can promise you that. 

"There is light at the end of the tunnel." Pic from activerain.com 

I have a lot of conversations these days with other thyroid patients who are at different stages in their recovery from a hypothyroid diagnosis. I thought it would be useful to post a summary of the advice I now pass on, based on my own experiences and what I've learned from reading, from other patients, from my various doctors appointments and from the wonderful talks with leading endocrinologists I've been lucky enough to attend through the British Thyroid Foundation London Group meetings. 

I have learned that hypothyroidism in the UK is mostly caused by an autoimmune disorder called Hashimotos Disease. Whether or not the doctor talks about Hashimotos makes no difference. Some doctors name it, some don't. Most people respond well to treatment with thyroxine via their GPs, but around 20% are harder to treat. I am one of the 20%. 

I have learned that thyroid hormones govern a lot of functions in the body: food metabolism, weight, brain function, feeling the cold, emotions, hair condition, skin and nails, they also impact on heart and bone health. When our thyroid hormones are unbalanced we can feel and look pretty dramatically terrible. It's not much fun. 

I have learned that anyone exhibiting mental health issues should have their thyroid tested.  I experienced extraordinary tearfulness and low emotions for a while when my thyroid hormones were clearly badly out of kilter. It was pretty strange but fortunately very temporary. Generally I'm a happy soul, explaining that to my doctor as I found tears welling up when I was talking to her helped her to understand that my tearfulness was a thyroid symptom and not the depression it may have looked like to begin with.  

I have learnt that sadly some doctors are not very on the ball when it comes to thyroid conditions. However there are plenty of good doctors out there and there is no need to tolerate one who is either unsympathetic or  ignorant about our conditions.  BTF is working with the BTA, the endocrinologists professional body in the UK, to help raise the standards of GP care for hypothyroid patients.  I'm not sure how well that project is going as I haven't had an update for a while but I am determined to do what I can to support it to progress as it's very clear from various websites and conversations I have with patients at meetings on the phone that action needs to be taken. In the meantime, if your doctor isn't giving you the care you need - change them. Ask around to find a doctor in your area who has a good reputation. 

I have learned that often patients who don't feel right when their blood tests are in the normal range may feel better when their TSH is at the lower end of the range and their T4 is at the upper - end and GPs have the flexibility to adjust thyroxine doses, within the range, until their patient feels better. 

I have learned that the official treatment guidelines for hypothyroidism state that if a patient still feels unwell when their blood tests are normal and the GP has done as much as they feel confident to do around tweaking the dose of thyroxine, they should be referred to an endocrinologist who can do more tests and may suggest alternative treatment. 

I have learned to always insist on being given my blood test results and to take my results and a brief symptoms summary to every doctors appointment. 

I have learned that a suppressed TSH can cause serious heart and bone problems and that's why doctors don't want to risk prescribing too much thyroid hormone and are mostly not keen on prescribing T3 meds. (my TSH was less than 0.05 for quite a while and I now know it wasn't wise to let it stay that way, hence my recent dosage reductions).

I have learned that taking T3 (liothyronine) medication alongside thyroxine did not solve my thyroid problems although it seemed to be helpful for a while.  I have found that ultimately other factors seem to have been more significant in my recovery.

I have learned that symptoms can be down to causes other than thyroid, if we have one autoimmune condition it basically means we have a weak immune system and will be prone to others. Aren't we lucky. Other possible causes should be investigated as a priority when a patient isn't responding to hypothyroid treatment as expected.  It was discovered that I had a vitamin D deficiency, when this was addressed I quickly felt  lot better and now I take vitamin D every day, as well as my thyroxine. 

Absorption is a big issue with thyroxine. We take tiny amounts, micrograms of the stuff and if it's not helping us feel better there's a good chance that we're not absorbing it properly. Lots of things can impact absorption: first and foremost thyroxine should be taken well away from food and caffeine, even just a cup of tea drunk alongside your medicine, can really have an effect. The BTF guidance for hypothyroid patients says to leave at least 30 minutes before eating or drinking anything other than water after taking your meds. 

It can be worth switching when we take our medicine, to evening instead of morning so that it can be absorbed over night in an empty tummy. This can have a really profound effect on how well we feel.  There is some recent research in favour of this and I have lots of anecdotal evidence from people I've spoken to who've done it and been surprised and delighted with the results. 

I have learned that trialling a gluten free and generally low carb diet seems to be helpful for quite a few thyroid patients, even when we haven't tested positively for celiac disease. It doesn't help everyone and it can be a bit of a controversial area but my view now, on going gluten free, is that it is worth a try - and it has made a big difference for me. I have spoken to several endocrinologists who agree that patients who are struggling would do well to see how they get on without gluten. I cut out wheat first, for a month, that definitely helped me so I went the whole hog and 2 months later I have lost a stone and feel much better.  It's still early days but I feel very positive that this has been something I've been able to do for myself and seems effective. 

Finally I've written a lot in other posts about mindfulness and gentle exercise and all that good stuff. On the Expert Patient Programme I learned that we are always managing our  health, whether we do it positively or negatively.  I know that when I allow myself to get upset about stuff I am exhausted afterwards, so I cultivate serenity. I treat myself and others nicely. I communicate clearly, I take time out when I need it and I accept that I can't always do everything that I want to do. I'm only human, everyone has their limitations, I count my blessings, literally, regularly - and when I do that it always makes me smile. 

I hope this summary of things I’ve learned on my journey with hypothyroidism has been helpful.  Let me know what you think and if you have anything to add.

With Love and Light and Hope

Experiences with T3 treatment - part two

As I write this I have a few misgivings. I don't really know what's going on you see. I can only share my own personal experiences and I don't want to mislead anyone and the fact is, at the risk of repeating myself, I really don't know what's really happening with me at the  moment.

However, I promised an update on the T3 situation so here it is. How things appear to stand, right now.

If you haven't read Part One then you probably need to, or this post won't make much sense.

As reported in Part One, on reducing my T3 meds initially I didn't really feel a difference. I was surprised and delighted. As the days went by I noted that really there seemed to be no change. I didn't feel 100% normal but I didn't feel worse than before the change. So far so good.

But over time I began to wonder if my brain had become a little more foggy..... I'm still wondering that.... but I don't know...it's hard to tell.  I am learning that for me thyroid symptoms are subtle and changes take a long time to become apparent.

I have a belief that perhaps T3 medicine helps my brain function more clearly. Partly this is based on my memory of when I started taking T3 alongside thyroxine.  I remember our first British Thyroid Foundation London event back in April 2011 which was a just a day after I started taking 20mcg daily of T3 (for almost a year prior to that I had been on 10mcg which I thought had helped me, but maybe not that much), I was thrilled at the time by how much more energetic and on the ball I felt during that event and yet I noticed that although I was able to stand up straight and talk coherently and manage the event effectively, my brain felt like total mush during Mark Vanderpump's presentation, I literally couldn't absorb information, nothing stuck, facts just bounced off me and it was like I was an untuned TV or something, kind of full of static!

Here I am welcoming everyone to our first event in #April 2011, Judith Taylor and Mark Vanderpump seated on right

But then when we did our next event, when I had been on the increased dose for a while, my brain was working fine, I could understand what was being said easily, as well as doing the stuff I needed to do to make the event go smoothly. I was so happy, I felt close to normal and people there commented that I seemed so much better. 

Sadly I then had my thyroxine reduced (which seemed like a good idea at the time as I believed it was the T3 that was  helping me and with a TSH of less than 0.05 it seemed reasonable to aim to get that up a bit, to avoid long term bone and heart problems) and slowly over the next few months I ended up seriously mushy brained again. Sigh.

Those events are not my only two frames of reference but for me they seem meaningful. Maybe they are, maybe they're not.  The truth is an elusive animal. Evidence can be misleading. There is the whole Vit D scenario to consider, as outlined in previous posts.  Writing this post has made me think it is worth reconsidering the timeline of events and symptom changes to consider whether there are other factors I should be more mindful of.

Anyway, back to 2012 and my new endo recommending we reduce the T3 and see how we go, on the proviso that if I feel worse I get to go back to the original dose. It's now more than 2 months since the initial reduction. I'm now concerned that I seem to be in a bit of a daze. I have been ultra slow responding to comments on this blog, I have been short of work yet not felt able to summon the mental focus to do much about looking for more. I've felt muddled  and slow when doing the work I've had. I had a job interview and was very rambly and waffly in it (which seems like a sign my brain is foggy though could simply be I am out of practice since it was my first interview in 5 years). I feel I have been unbelievably slow and disorganised around my British  Thyroid Foundation admin and communications. Housework and hairwashing have felt like major tasks.

Yet on the positive side, I have lost more than half a stone (this is likely due to dietary changes which I will write about separately) and I am taking regular exercise! Actual exercise!! I'm playing badminton once a week and also going to weekly yoga and tai chi classes. The badminton is quite a full on aerobic work out, but I am  playing with ladies who are all older than me (it's a daytime club so most of my fellow players are retired and we are all women), so it's not as full on as it could be, but it is a proper work out. The yoga and tai chi are both super gentle, also mostly retired ladies in the classes, but the teachers are excellent and I can feel the benefits already. I actually feel quite confident that I am going to be able to increase my physical exercise and fitness levels over the coming weeks and months. Gently does it, pacing myself carefully. Avoiding the classic chronically ill person's pattern of doing too much as soon as I feel better and then knocking myself back.

So, to cut a long story short, am I better or worse??? I don't really know!!

I had more blood tests at the start of June and finally got the results this week (NOT impressed with that time delay thank you, Kent NHS). My new endo has now suggested that I cut out the T3 meds entirely until my next appointment with him in September. Basically the original dosage cut has not really impacted any of my numbers. TSH is still less than 0.05, T4 and T3 are still right at the upper end of the range, in fact they have both increased slightly.  I have decided to follow his advice. Today is day four of thyroxine only. I don't feel worse, I don't feel better, but experience so far tells me that it will be a while before I can really assess the impact. Trusting that he will let me go back on it if I am worse when I see  him next, or if I really feel worse in the meantime, watch this space.....wish me luck!

As always comments are positively encouraged, I'd particularly love to hear how other people have got on with T3 treatment, or just generally compare notes with other thyroid patients, or those suffering from other chronic illnesses

sendiing smiles :)

Who are we with thyroid disease?

Sisters in law, Angela and Tracy, with Tracy's super supportive husband, Angela's brother, Gerry,
who all traveled from Hastings to our meeting in May

The London Team held a meeting with a difference on British 5^th May 2012.

Since we began last year we have wanted to do a meeting without an external speaker, to allow the maximum time for members to talk amongst ourselves. However, we felt that it might be challenging to structure such a meeting and ensure that everyone’s voice was heard and all would have a positive experience.

In the end we worked together to create a format that worked really well. We were delighted with the largely very positive feedback from attendees.

On arrival everyone was given a copy of the programme and a set of “ground rules” which the Team had worked out in advance and which proved to be popular with everyone:

We are all patients here

We ask everyone to be mindful of the following guidelines for this meeting:

·        Be supportive of each other – don’t be critical

·        Allow everyone in the group to have their say   

·        Don’t give medical advice

·        We are here to share our experiences and learn from each other but remember that what works for one person, may not work for others – so don’t try to push solutions onto others

·        No pushing un-orthodox treatments

For the first half of the meeting we all sat in a big circle (there were 33 of us) and everyone had a chance to introduce themselves to the group as a whole and to say how they found out about the event, what they were hoping to talk about in the meeting and anything else that they wanted to say about their condition and how they were feeling.  This worked really well, people were very open and supportive of each other.  

After this we had a relaxation session before the break. This consisted of a short guided meditation from the Expert Patient Programme course book, read by Team member, Allison Duggal.   Many of us have learned how using relaxation techniques such as meditation can help us to feel better on a day to day basis and we all enjoyed having the opportunity to sit quietly for a few minutes together and the meditation script, which described walking in a beautiful garden, was a lovely way to relax.

During the introductions several key themes had emerged as things that people wanted to talk about. These were:

·        Managing Symptoms

·        Psychological aspects of thyroid disease

·        Getting the most out of our health professionals

·        Living with Graves Disease.

We invited people to choose one of these topics during to break and to register for one of four smaller discussion groups that would take place in the second half of the meeting.

We had created some guidance notes in advance for the volunteer facilitators from the Team who led these groups. And we agreed in advance that each group would feed back to the wider group at the end.

The group discussions seemed to go really well. Everyone was keen to listen to everyone else and we all had lots to share.

The groups fed back as follows:

Managing Symptoms

This group talked about:

·        How in some cases a Vitamin D deficiency diagnosis and subsequent treatment had made a big difference for some of us and we encouraged others to ask for a Vitamin D test if they hadn’t had one already.

·        Many in the group found managing their weight could be very challenging though some hypothyroid patients reported they found it difficult to put weight on, most of us struggle to lose pounds.

·        The benefit of gentle exercise, particularly walking. We all thought the BTF Big Summer Walk campaign was a great opportunity to get groups of thyroid patients walking together and how nice it was to go walking or do other exercise with others rather than alone.

·        Ensuring medication is taken at the same time each day.

·        Avoiding alcohol as it seems not to agree with so many of us.

·        Good diet, although we were unsure what constitutes the best diet for thyroid patients and to what extent we needed to be mindful of goitregen foods such as soya.

Getting the most out of health professionals

This group talked about:

·        Using the guidance in the EPP leaflet to get the most out of consultation time.

·        Changing doctor is an option

·        Trying to see the same practitioner on each occasion can help as you can build up a relationship

·        Describing symptoms clearly rather than talking too much about feelings helps the doctor understand what is going on

·        Being assertive, without being aggressive

·        Asking questions and taking responsibility to understand our own conditions

·        Exploring different treatment options and asking for a referral if the GP has done as much as they can and we still feel unwell.

·        Kelp tablets can interfere with thyroid medication and do more harm than good.

·        How discovering shared symptoms in the discussion made them feel much less alone.

Psychological aspects

This group talked about:

·        GPs, colleagues and family members tend not to understand the emotional aspects of thyroid disease.

·        Mental slowness and memory problems are very worrying, we find ourselves wondering are they a sign of dementia or something else.

·        Difficulties around being a parent

·        Routines are helpful

·        It can be difficult to plan events

·        Concerns about appearance

·        Confidence often suffers

·        Walking, Yoga, Tai Chi and pacing ourselves can be helpful

·        Anxiety is worth overcoming – there is pay back

·        Group members were keen to have more access to relaxation, life coaching, dietician support and help with memory strategies to help manage the mental and emotional aspects of thyroid disease.

Graves

This group talked about:

·        There are lots of knock on effects of having Graves, such as: sinus problems, other autoimmune conditions, joint pains, palpitations and other symptoms

·        In many cases Graves Disease went unnoticed for years before being diagnosed.

·        Doctors often didn’t take patients seriously

·        Be persistent to get optimised treatment

·        Treatment for Graves is not a cure and people often don’t realise that at the outset.

·        Other autoimmune problems can manifest over the years

·        Doctors don’t give you this information, which creates confusion when further problems arise as they are not anticipated.

·        Not everyone gets the same symptoms.

While one person mentioned afterwards that she wasn’t comfortable talking about feelings without focussing on positive solutions, on the whole almost everyone said that they found the groups enjoyable and useful. We now plan to do more of this kind of thing at future meetings.

All of the groups reported that the discussions made them feel less alone. Peer support is a wonderful thing.

The groups also wondered whether BTF or BTA might consider funding some work into thyroid disease and nutrition in the future as this area is of such interest to patients and yet seems to be under researched.

We are excited that since this meeting we have been able to confirm Professor Colin Dayan as our speaker for our February 2013 meeting, on the subject of Thyroid Function and Psychological Wellbeing.