Tuesday, 27 March 2012

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 3rd 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 5th 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.

4 comments:

  1. WOW! It really looks like you are doing some amazing things there with your group. If I wasn't 5000 miles away, I would love to come to your meetings :) In the meantime, I will just read these wonderful accounts. Your two speakers sound great. I love the idea of personalizing treatment based on genetic composition. That is exciting and I hope to hear more about that. Expert Patients seems so empowering and I think that is most helpful in healing.

    Wishing everyone there perfect health!

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  2. Hi! You have a brilliant blog! I'm hypothyroid and a bit new to all this - have desperately been trying to get better this past year. So glad respectable physicians and researchers are taking us seriously. Thyroid patients really do need a personalised approach - a one-size-fits-all approach is completely wrong and even harmful. Hope you're doing OK.

    Jess

    thyroidfun.blogspot.co.uk

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  3. thank you!!

    Zenthyroid it's so fantastic you can look in on us from so far away and I'm glad you enjoyed hearing about the meeting even though you couldn't be there. I love your blog too!!

    Jess, it's great to hear from you and I look forward to reading more of your blog, the first post giviing the basics about thyroid disease is really good. So many thyroid patient sites are highly critical of the medical profession and I can understand that a lot of people are VERY frustrated as many do have bad experiences, but I have met some great doctors through my own treatment and via the British Thyroid Foundation. there is hope for all of us!!

    sending wellness wishes xxx

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