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HEART UK NORTH EAST OF ENGLAND PATIENT SUPPORT GROUP MEETING SUMMARY
HEART UK – The Cholesterol Charity held their 3rd Patient Support Group Meeting on Thursday 30th May
2013, between 6-8pm at St John the Baptist Church Hall, Grainger Street in Newcastle upon Tyne. The
meeting was hosted by Dr Dermot Neely, Head of the Lipid Clinic at the RVI in Newcastle. Attendees
were welcomed by refreshments and a selection of healthy bakes kindly provided by laboratory staff at
the RVI, which included muffins, oatcakes, carrot cakes, cookies and flapjacks, and a wide selection of
HEART UK information and publications .
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Dr Neely opened the meeting with “Cholesterol News”, a review of events and news, which included an
overview of new medications in the pipeline to treat raised cholesterol and the clinical trials currently
being carried out at the RVI. He explained the network of lipid clinics in the North East which aimed to
improve standards of care for patients with FH and other lipid disorders, and mentioned a new lipid
clinic starting up in Middlesborough, which would be joining the network from September. Dr Neely
also spoke about HEART UK’s Annual Conference in Bristol in July, and that the focus of the conference
this year was on FH. He mentioned the availability of travel bursaries for patients and how the
conference offered patients the opportunity to meet and hear from lipid specialists from all over the UK
and abroad, and to meet other patient attendees.
The first guest speaker was Dr Dan Bloom, a trainee GP who spoke to the group about his thoughts on
being diagnosed with FH on cascade DNA testing, from his perspective as both a patient and a medical
professional. Once his brother was diagnosed with FH, Dan was keen to have a DNA test (which he had
done in Scotland) which confirmed his diagnosis. He described to the group how he was surprised how
easy it was to have done (mouth swab), and how he felt about the fact he now had to take lifelong
medication. He spoke of his shock at finding out how common FH was, how he felt current knowledge
and awareness was not particularly good, his thoughts for the future and what his diagnosis meant in
the long term.
Traci Good, our second guest speaker, had kindly travelled all the way from South Manchester to talk to
the group about her experience of being diagnosed with a different type of inherited high cholesterol,
Type 3 Hyperlipidaemia, or Dysbetalipoproteinaemia (a condition where both cholesterol and
triglycerides are raised, cholesterol level usually being higher). This type of inherited high cholesterol is
less common than FH and occurs in 1 in 5000 people. Traci spoke about finding out her readings were
high after having a point of care test before she was referred to a lipid clinic, where she was initially
diagnosed with FH before this was changed to Type3. She talked about her problems with medications
– she was put on both a statin and a fibrate but was unable to tolerate the statin. She then told the
group of her dramatic change in diet, where her dietitian put her on a very low fat diet (15g/day), how
she lost weight and how this, in combination with fibrate treatment, was able to bring her lipid levels
down from a total cholesterol level of 14.8mmol/l and triglyceride level of 14.4mmol/l to total
cholesterol level of 3.6mmol/l and triglyceride level of 1mmol/l.
Traci found out that there was very little information available on Type 3, but she was able to find a
support network in HEART UK and has since become a HEART UK Ambassador, keen to raise awareness
and empower other patients. She is also an active member of HealthUnlocked, HEART UK’s online
community and has attended HEART UK’s Annual Conferences.
When Traci pointed out the lack of information on Type 3, HEART UK and Dr Neely put together an
information sheet which can be found on the HEART UK website at the following link:
http://heartuk.org.uk/cholesterol-and-health/type-3-hyperlipidaemia
Question and Answer sessions: during the meeting a variety of questions and discussions arose:
When was the best time to get children tested?
Children should be tested between the ages of 2-10 to get a definite answer as it is harder when they
get older due to the growth spurt during the puberty years, where cholesterol is used more in cell
growth and can be falsely low. After this they are affected by the influences of adult behaviour. Dr
Neely mentioned that point of care testing would become more common with more children being
referred for testing
When was it safe to introduce cholesterol treatment to children ?
Dr Neely referred to the NICE Guidelines for FH which stated that if LDL cholesterol levels are raised in
children, it is safe to introduce cholesterol treatment with a statin from the age of 8.
Diet and FH:
Dr Neely pointed out that diet usually had little effect in lowering cholesterol in FH. He referred to
studies in China which showed that the Chinese had naturally lower cholesterol levels which increased
to as high as 9mmol/l and above when they moved to countries such as the USA.
What was Traci’s favourite meal?
Chips and gravy ! failing that Mediterranean vegetables with grilled chicken.
Facts regarding Type 3 Hyperlipidaemia
Total cholesterol level will normally be higher than triglyceride level which is also raised
There is an increased risk of developing pancreatitis when triglycerides are severely raised
1 in 100 people with the condition have type 2 diabetes
Statins usually work well with a fibrate to speed up remnant particles
Outward physical signs/stigmata can include yellowing of the creases of palms (marriage lines)
Date of next meeting
We are pleased to announce the date of our next North East Patient Support Group Meeting. This will
be on Thursday 14th November 2013, same time and place (6-8pm, St John’s the Baptist Church Hall,
Newcastle). If you would like to attend, please contact Tina Dawson via the HEART UK Helpline (08454505988) or email [email protected] . A full programme will be sent out in the near future. We look
forward to seeing you all again.