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!

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 :) 

New thyroid research techniques and future treatment....

My loves, it has been too long, I won't bore you with excuses as I have something much more interesting to share..... new news from the cutting edge of thyroid research!! Read on....

On 3^rd March 2012 the London Group held our third Information Event at the Royal Free in Hampstead. The meeting was well attended once again, with two great speakers.

Dr Peter Taylor, BSc MBChB MRCP SCE, based at the Centre for Endocrine and Diabetes and Sciences, University Hospital Wales and recipient of the 2011 BTF Research Award gave a fascinating talk about new thyroid research techniques and future treatment.

Peter explained that treatments for thyroid disorders have not changed for around 40 years and doctors tend to think that this is fine as they are easy to treat, however a significant number of patients are not seeing good results from the standard approach and the focus on TSH levels alone may not always be sufficient.

Dr Peter Taylor addressing the London Group of the British Thyroid Foundation

In some respects, by not addressing this issue, the mainstream medical profession could be seen to have lost control of the situation and there are now a lot of alternative practitioners who are not qualified endocrinologists, particularly on the internet, who may just be out to exploit patients, by offering dubious treatments to those who feel let down by their normal doctors. In some cases these alternative treatments can do more harm than good, particularly in the long term.  

Equally misdiagnosis of thyroid illness as depression or vice versa leads to inadequate treatment and dissatisfied patients. Given thyroid function tests are relatively inexpensive, it is important to make sure the diagnosis is correct, by repeating tests if necessary; as many working hours will be lost to undiagnosed or poorly treated thyroid conditions.

The UK leads the world in the field of public health research, yet there has been a lack of good research in this field. It is clear that more steps are likely to be needed in diagnosis and treatment of some thyroid disorders. The reference range for “normal” TSH is based on population ranges and may not be be an optimal range. Studies have shown that variation within the reference range influencing pregnancy outcomes, lipid levels, blood pressure and risk of cardiovascular disease.  Factors other than thyroid disease can affect TSH readings, such as smoking, or being unwell.

The good news is that some exciting new research, made possible by recent advances in genetics, may mean that patients who are currently difficult to treat could be helped in the future by new treatments that could be available in the next ten years. It is likely that thyroid disease could be one of the first non cancer illnesses to benefit from personalised medicine, where treatments are tailored to the individual’s genetic profile. Already studies have identified new genetic variants that may impact thyroid function, beyond hormone levels.  These may enable us to predict if people may feel better if treated with a combination of T4 and T3. Some patients find that Thyroxine treatment can cause them to feel worse initially. It is possible that in some rare instances thyroid hormones aren’t reaching the brain properly so that blood test results can be misleading.

As an area of research, the thyroid is starting to gain more interest, particularly as public health professionals are realising that both high blood pressure and heart disease risk can be improved by treating borderline thyroid function. Recent successes in optimal use of Thyroxine to improve fetal development and pregnancy outcomes are also helping to generate interest in the research community.

Inevitably medical research is slow and new treatments will take time to filter through but it was heartening to all of us in the room to know that there are researchers taking our conditions seriously and working hard to make things better for us and other patients.

Peter also answered questions for more than an hour, on almost every aspect of thyroid disease and everyone found him to be most sympathetic and knowledgeable.

Our second speaker, Sheila Sturgeon of the Expert Patient Programme CIC gave an excellent talk on self management of chronic illnesses and getting the most out of health professionals. Several of the London Group have now signed up to do Expert Patient Programme courses.  

Our next London event is on 5^th May, 10am – 1pm at the Royal Free once again. I'm hoping to confirm our speaker(s) in the next couple of weeks.  Visit the British Thyroid Foundation website for details of the programme nearer the time and to find out if there's a group near you if you're not in London. As always if you want to come to our next meeting, just let me know. Everyone is welcome.


Sending smiles.