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.

Shifting sands

I’m now in my new house by the sea and loving it. We moved at the end of October. I’m so excited to be here and everything appears to have gone pretty smoothly. But I must admit the move has taken it out of me a bit; that and the fact that I am now working, on a freelance basis, for two different clients, so work has gotten a whole lot busier. I’m pretty tired at the moment.

Mindful that it’s winter again and the last two winters my health went rapidly downhill. Wondering if there’s something up with my Vitamin D levels again, I went to my new GP to ask her to test it which she was happy to do but the results may take up to a month to come back!! That’s living outside London for you. So I’m unsure whether to just up my Vit D dose by myself in the meantime, in the hope it might do me some good, after all it’s just a supplement from the health food store I don’t think I’m likely to do myself any harm, or hang on and find out what the test says.  I want to do things properly and wait for a steer from my doc...

Also torn between changing to an endocrinologist close to home, which is an option, or to stick with the one(s) I see in London. The clinic in London is pretty shambolic, (patients waiting to be seen sitting on the floor / blood test and follow up letter mix-ups, not good really) and I generally see a different registrar each time I go there. But I know them now and they know me. I have a lot of anxiety about moving doctors in case the new ones don’t agree with the regime I’m on and I end up worse off. I’m also totally unsure about whether what I’m on is actually the right thing for me. It’s tricky, there seems so much controversy around thyroid treatment and here I am, over two years after diagnosis and still not wholly well, not knowing if there’s something else that could be tried that might make a big difference for me, I really don’t know what to do for the best...

Oh and my blog is under attack from spammers promoting desiccated thyroid supplements and like most thyroid patient who ever go digging around online for help for their condition and end up bombarded with people pushing this stuff, I do wonder a tiny bit whether that might be something worth trying.  If you see a two line comment with a link to an online shop in any of the comments on here, before I spot it and delete it, please be aware that this is the standard format for these spammers and is just someone trying to sell us all something. Bah, bad spammers, go away!

I spent yesterday talking to some endocrinologists as I was volunteering at the British Thyroid Association’s annual meeting, manning an information stand for the British Thyroid Foundation. 

Happy smiling volunteers on the information table at the BTA Meeting 2011, l-r: Judith Taylor - BTF Editor and Trustee, me - for BTF London Team and Lin Welch - from Thyroid Eye Disease Charitable Trust

They are a friendly bunch, the BTA people and no-one was trying to push anything on me but a couple of them were questioning my treatment to date and they have really got me thinking.

I mentioned in my last post that Professor Graham Williams’ talk at our last London meeting had challenged some of what I thought I knew about thyroid hormones.

I haven’t posted in detail about his talk because with the house move and work stuff I just haven’t had the chance to write it up, yet.

The key thing that he was saying that really got my mind working was that he would NEVER prescribe T3 for hypothyroidism. I am one of those people who takes T3 as well as T4 (click here for more info if you have no idea what T3 or T4 are). The official UK guidelines on treating people state that T3 can only be prescribed by an endocrinologist. I thought that was just because it’s a volatile substance and needs to be managed by a specialist, some GPs apparently were over prescribing it and this can cause bone and heart problems, hence the guidelines.

But Graham’s position, as I understood it, (and he is a world class expert) is that most T3 used by the body is converted in the organs, rather than in the blood stream, and those organs can only use T3 that they have converted themselves, from T4 in the blood, as they only have specific T4 receptors, so having extra T3 in the bloodstream (via meds) is probably not going to have a positive impact on wellbeing.  This despite my experience and belief that it has made a difference for me. 

Plus which, he made a very compelling case for the danger to the skeleton of thyroid hormones being out of kilter. He showed us photographs of healthy bones and bones that are weakened by both hyper and hypo thyroid states.  It wasn’t pretty.

So I said to him, back in October, how would you have treated me then? I was topped up to the max with thyroxine (T4), TSH as low as you’d want it, T4 right at the top of the scale, but I still felt rotten. He said he would have looked for other causes, such as vitamin D deficiency. Well lo and behold, about 8 months after I was started on T3 meds I was also diagnosed with that and lo and behold again, starting Vit D supplements appeared to have as profound an effect on me as the T3, perhaps more!

So now I’m wondering if the Vit D on its own might have sorted me out, with just the thyroxine. But I’m scared to consider coming off the T3 incase my brain goes back to being fuzzy mash it was before I was put on it and I then can’t get a doctor to agree to put me back on it!!

What to do??

Anyway, lots more discussion at the meeting yesterday has got me thinking even more. I will have to post again to share the rest. Sorry this post has got very medical. Let me know if you’ve been in a similar quandary and if you have any insights to share....

Ever hopeful, sending smiles.

Lorraine J