The group goes on.... and why TSH is like the Richter Scale

Our meeting on 10th May went really well. When I get the time I will write up of some of the controversies discussed in Mr Lynne's talk and the Q&A session.  He talked for over an hour, was very open and shared a vast amount of information with us, we all learned a lot and it was a very enjoyable event.  He was a lovely man and brought along his equally lovely practice nurse, Patsy, we all really enjoyed meeting them both and are very grateful to them for giving up their Saturdays to support thyroid patients in London.

One of the biggest "wow" moments for me was learning that the TSH scale is logarithmic, like the richter scale, which would seem to explain why, for me, a seemingly tiny shift in TSH value = a massive difference in how I feel.

TSH log scale slide from Mr John Lynne's talk at the Royal Free, May 2014

I have now stood down as London Group Coordinator and would like to thank the remaining Team members who are commited to continuing.

What a relief that London will still have a support group for thyroid patients.

Upcoming events include a teddy bears picnic in Central London on the day of the London 10K run, on 13th July, which several group members, are running and the next Information Event is scheduled for 13th September.  Onwards!

"Thursday, Thursday, Thursday...."

I had a meeting with my GP this morning, also the practice manager and a professional mediator. I found it quite harrowing but I'm hoping good things will come of it. Get me, ever the optimist....

I'm not dead yet!*

The background is that we had a mix up a couple of months back, I won't bore you with the details now, I may follow up with them in a later post. As well as the mix up I was getting fed up that I often find it really difficult to talk to my GP. She often interrupts me and doesn't let me finish what I'm saying and she often appears impatient. It's frustrating.

As a patient with a chronic health condition I need to be able to talk to my doctor. I need to feel she is listening and I need to have confidence I am receiving a good standard of care. When I don't feel listened to I become concerned that any treatment recommendations being made may be ill considered and that important factors may be being overlooked. I am mindful that as an autoimmune hypothyroid patient I will typically have multiple symptoms which may be linked to my thyroxine dose, or something else needing to be addressed - and I am liable to pick up other conditions too. Symptoms can be caused by the thyroid condition and also by other things which may be wrong.

I am fiercely determined to be as well as I can be and to advocate for myself to receive the best possible healthcare. I also feel passionately that many other patients with chronic health conditions also deserve the best of care and may not be in a position to advocate for themselves as strongly as I, with my years of experience as a professional communicator, can. So I am committed to holding medical professionals to account to provide a good standard of care for everyone.  Oh and of course, when I am not as well as I am now, my own communication abilities are debilitated and I simply can't be doing with every conversation I have with my doctor being a struggle.

Today's meeting came about following a series of letters exchanged between myself and the practice. Each letter I sent was hard work for me to write and was only done because I felt I had no option. I had kind of reached the end of  my tether with them. To their credit the practice have been totally on the ball and responsive with each communication. I have faith in their good intentions. I recognise they work with systemic difficulties which are not their fault.  I have faith that my doctor is a good, knowledgeable and committed doctor. But she unfortunately is working under extreme pressure so is constantly having to prioritise and work as swiftly as she can and that means the service she can provide may always be somewhat compromised.  In addition, I think that after today the penny has dropped for me that her sometimes unfortunate communication style is nothing to do with me but comes of being someone who is intellectually super bright but doesn't have strong interpersonal skills.  I had been worried that her behaviour towards me meant she thought I was a waste of space. I'm reassured after today that I don't think that's the case.

While I would love to have a doctor who is warm and empathetic I feel it is more important that I have one who is efficient and on the ball. Ideally I would naturally like to have both but at the moment, with the NHS in the mess it's in, I fear that might not be possible. I just don't know. Are my expectations too low? Certainly changing doctors, while an option, is no guarantee that I will end up with anything better than I've got now. *sad face*. Actually I'm being unfair, she is genuinely empathetic, she just isn't always great at expressing that empathy.

We had a big chat. I reached the conclusion that she will probably always be quite hard work but that she knows her stuff, medically and that she does have my best interests at heart.  We agreed to work at the relationship and hopefully over time it will improve. As this is what both sides want I am hopeful we can make it work.

The mediator and practice manager were both helpful and also seemed committed to achieving the best possible outcome.  I made it clear I will change doctors if I decide I need to and she said she hoped I wouldn't, as she'd see it as a professional failure and she cares about providing a good standard of care.

The whole thing was bloody hard work. A bit like life I hear you cry! Well yes, maybe. Maybe that's just how things are. It could certainly have been worse.

The "Thursday Thursday Thursday...." thing is the sticking point. I said - "I need to know you hear what I'm saying, it doesn't work for me when you interrupt me", she said "I need to filter all the different things that patients say to me, identify what's important and respond to that, if you were to sit in front of me and just say Thursday, Thursday, Thursday I wouldn't respond to that because I would know that it wasn't important". Hmmm, if I'm saying something important and she's hearing it as "Thursday, Thursday Thursday", that's no good is it? That's no good at all. And I don't go to the surgery to say things that don't matter, my time is worth more than that.

Do I trust her judgement on what is "Thursday" and what is important? That, for me, is perhaps the crux of the matter. I recognise that she knows a lot more than me about mecicine and she acknowledged that I will know more about my condition than anyone else.  She said that she values my input in decision making, which is a good thing. Hmmm. The theory is that after clearing the air today we have built some mutual understanding and she will listen to me more in future, mind you she didn't actually say she would. The "Thursday" comment was possibly quite telling.

After the meeting I felt quite frazzled. My lovely husband gave me a big hug and a bar of chocolate and my Twitter friends rallied round, one tweeted me a beautiful oil  painting of a tranquil sea he'd just finished, another took me out for coffee and a flapjack - and brought me home made honey and freshly laid eggs too! People are amazing. I feel supported. I'm grateful for that.

I have some more thinking to do and will post again about next steps, when I've had more chance to reflect on what they're going to be....

How about you, ever complained? Ever switched doctor? Ever wanted to? Ever used the NHS Mediation Service, or posted your experience on Patient Opinion, or pursued any other avenues to make things better between you and your doc? I'd love to know. You can comment below if you'd like to, I'd love it if you did.


*My friend from twitter who kindly took me out for coffee today suggested we meet by the Halloween display in The Range, Westwood Cross, there's actually quite a nice coffee bar there and she had some business to attend to nearby. I thought the gruesome display was hilarious - and kind of apt for today's post - at least I'm not dead yet and I've got lovely friends and I can still have a laugh! 

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 :)