London Pituitary Life The London Pituitary Patients’ Support Group newsletter November 2016 – Volume 16, Issue 4

www.pituitary.org.uk

Next LAPPS Meeting Hammersmith Hospital 10am for 10:30am Friday 9th December The next LAPPS Meeting is at 10.30am on FRIDAY 9th December at Hammersmith Hospital. Once again Professor Karim Meeran has kindly invited us back to the Multidisciplinary Endocrine Symposium. It is an annual event, now in its 11th year, and serves to update Endocrine Surgeons at Hammersmith Hospital and Endocrinologists - keeping them at the forefront of their field. Professor Meeran has organised a special programme for the LAPPS group, in our own room, to run parallel with the main meeting. Unfortunately, Dr Niamh Martin is unable to be our speaker this year but she is arranging an alternative who will talk about “Hydrocortisone Replacement”. After the coffee break the session will start with an update of the Pituitary Foundation by Sammy Harbut, the Patient and Family Services Coordinator. This will be followed by “Ask the Doctor” session. Finally, there will be a demonstration on using the emergency Hydrocortisone injection. As in previous years, LAPPS members can chose to attend the Doctors’ lectures during and after our meeting. It must be noted these lectures are complex case studies, for the medical professionals and we can attend as observers only. This is our 5th visit to this event and every year has been amazing, very informative and enjoyed by all who attended. I apologise to all those who cannot make a Friday meeting but it is an opportunity too good to miss.

To attend the meeting and enjoy the lunch and coffee provided you need to register with me as I need to forward your name and anyone accompanying you, so that you can have a badge printed to enable access to the venue and to give the caterers an idea of numbers. Please email, ring or write to me by Friday 25th November so I can forward all the names of everyone attending.

Dates for your Diary  Friday 9th December – Hammersmith Hospital 10am for 10:30am start  Saturday 18th March 2017 – Royal Free Hospital Saturday 11th June – The National Hospital

Sat LAPPS is a branch of the Pituitary Foundation – registered Charity no: 1058968 All views contained in the Newsletter are those of the author and not necessarily those of LAPPS ©LAPPS 2016 – Hammersmith Hospital

Hammersmith Hospital is equal distance between White City and East Acton Stations on the Central Line. From East Acton Station it is easiest to walk along Du Cane Road, past Artillery Lane (the road between the prison and the Hospital) and walk PAST THE FRONT of the hospital past outpatients) to the very end of the building. Enter the hospital premises at the East Gate. The meeting is being held in the Wolfson Conference Centre at the back of the Hospital – LAPPS signage should be in place. I am informed that there is a pay and display car park

LAPPS Programme

General Session at the end of Artillery Road, behind the Hospital. So if you plan to come by car don’t forget to bring coins for the metre. Post code W12 ONN The programme for Doctors will be available on the day. LAPPS members are free to join these sessions as observers. You can decide on the day which lectures you want to attend. Please remember you are welcome to join both or either of our LAPPS sessions and any of the others listed on the programme.

10:30 - 11:30

But whatever you chose you must contact me by 25th November to reserve a place. “Hydrocortisone Replacement”Joy

11:30 - 12:00

Coffee break

12:00 - 13:00

Sammy Harbut: Update of the Pituitary Foundation.

10:00 - 10:30

Arrival and coffee

Q and A session & Demonstration of Emergency Hydrocortisone Injection 13: 00 – 14:00

Lunch

Calling All Pituitary Patients! A company called PassPACES needs Pituitary patients to help qualified Doctors to pass their Practical Assessment of Clinical Examination Skills (PACES). This is part of the MRCP exam for the Royal College of Physicians. The courses are held in central London venues, including Guy’s, UCLH and Bart’s campuses. You will be seen by Doctors who will ask questions and maybe examine you in an attempt to diagnose your condition. You will be required to attend for the whole day, starting at 8am. You will receive an honorarium plus travel costs on public transport. If interested please ring 07791791000 for further details.

Pituitary Foundation Christmas Merchandise Have you bought your Christmas cards? The Pituitary Foundation has a great choice of cards this year. You have the choice of 9 different designs. They come in packets of 10 for £4.95 including P&P. Each card is 13cm X 13cm and it says: “Best wishes for Christmas and The New Year”. There is also a range of merchandise that would make lovely gifts. Go to website www.pituitary.org.uk to view and buy online or contact the Foundation for a catalogue on 0117 370 1311 You can then post your order and cheque (made payable to Pituitary Foundation) to the 86, Colston Street, Bristol BS1 5BB

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Question & Answer Session with Dr Gilbert Q. I am told I have Empty Sella Syndrome and that my pituitary is replaced with a large cyst. I have never heard this conditioned mentioned in articles or talks. How often should repeat MRI scans be done if annual blood test results are OK? What symptoms might I expect if there were any changes to this cyst or is it a case that cysts don’t change but may increase in size? A. In empty sella syndrome, the sella (space created for the pituitary) is either partially or completely filled with cerebrospinal fluid. As a result, the pituitary gland is often compressed and flattened so that the sella appears empty. Many individuals with empty sella syndrome do not have any associated symptoms: The "empty sella" may have been discovered incidentally on a scan whilst being evaluated for other reasons. Provided that your hormone profile remains normal, the scan appearance would not be expected to change and does not need to be repeated routinely. Q. Once the hydrocortisone is started at a dose in the case of hypopituitarism will it have to be continued for life? If so, as I get older, will there be a need to change the dose? A. If clear cortisol deficiency requiring regular hydrocortisone has been confirmed; it is most likely this will need to be continued long term. Age alone should not influence directly the dose requirements. Some medications e.g. Phenytoin and Rifampin, may increase the metabolism of hydrocortisone and patients taking these medications may need to increase their corticosteroid dose to achieve the desired response. Q. Is it safe to exercise whilst still trying to find out the right level of cortisol replacement? If so what would be an acceptable amount? A. It is safe to exercise whilst corticosteroid doses are being fine-tuned. Taking into account the nature and intensity of exercise that you aim to do, it would be reasonable to stagger and gradually increase your activity levels. If you experience challenges reaching your former fitness baseline, it may be helpful to review other pituitary hormone replacement requirements. Q. I have Diabetes Insipidus. Are fluid retention, swollen legs and ankles common in patients with DI and hypopituitarism? If so, is there anything I can do to relieve these symptoms? A. As swelling of the legs and ankles can occur due to a variety of causes, it would be important that these are systemically explored. Recent changes in medication, related to pituitary hormone replacement or other conditions e.g. high blood pressure, may prove to be relevant. An up-to-date cardiac evaluation may be helpful if not recently performed. Q. When I have my annual Growth Hormone review I am always asked if I have pain in my joints. Up until this last year I never had, but now I do but how do I tell if it is old age or the growth hormone? A. If you have been prescribed Growth Hormone for many years, without untoward side effects and your growth hormone levels remain stable and satisfactory; it is more likely that the new joint pains have a different cause.

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September Social Trip to the Royal Albert Hall In September 50 members participated in our social trip, to the Royal Albert Hall. We met in the Vivaldi restaurant where tables were reserved for our party. We enjoyed the coffee and Danish pastry as well as the chance for everyone to sit and chat with fellow members for nearly an hour! We were divided into 3 groups each with our own excellent guide. The tour covered many areas including the magnificent auditorium and its impressive organ. It looks even bigger and more impressive in real life than on TV! We sat in the ‘best seats in the house’ and listened to all the fascinating facts and figures of the place – its colourful past, distinctive architecture and unrivalled entertainment history. We were also taken to have a peep but not enter, the Royal Box and other Royal areas not usually open to the public. Finally, we went to the top of the house and looked down on the auditorium – what an impressive sight! It was a great day, everyone seemed to enjoy the visit. The passing comment was “where are we going next year, Joy?” My reply was ”Any suggestions?” Joy

Update On Apps There have been problems with apps advertise. Firstly, there was an error for the toilet app - the correct link is: http://patient.info/press-releases/new-find-toilets-app-makes-spending-a-penny-free-easy In terms of the iCortisol App - this app is unfortunately not currently available to download from the Apple store. The reason for this is that the operating software for the app is now very old and not compatible with the current Apple software. The Pituitary Foundation is looking into the cost of updating the app so they can reissue it on the Apple store, but it depends on the cost as to whether or not this is feasible. In the meantime if anyone has the app on their phone, it should not affect them, unless they either delete the app or get a new phone, in which case they would not be able to re-download it from the Apple store. 4

Pituitary Foundation Awareness Campaign Awareness Month 2016 I mentioned in the last Newsletter that Awareness month this Autumn was improving opticians’ awareness about Pituitary Tumours. Many pituitary tumours are being diagnosed through routine eye tests, so making sure opticians are aware of tumours will help prompt earlier diagnosis for patients. The Foundation has produced this excellent poster. They are asking all patients to take one to their local opticians and ask for the poster to be given to the optician, or better still ask if it can be displayed on their staff noticeboard. I have checked and it is not too late to get involved. To obtain a poster email [email protected] or ring 0117 370 1310 – give your name and address and one will be sent to you.

Your involvement could mean that others do not have to go through the frustrating long diagnosis that many patients experience.

Pituitary Foundation ‘Texting Service’ The Pituitary Foundation is developing an exciting project in response the requirements and needs Serv of the people they strive to help every day by providing the information and support services. To reach as many people as possible they have decided to introduce a ‘texting’ ‘Text Service’. The development is in direct response to internal analysis drawn from recent surveys and data fed back from conferences, general comments from their Helpline and Website that has outlined the need to address a gap in the services. In particular, for younger patients but also for all age groups. Text messages are now widely used for communication in everyday life and interestingly, used by many other charities. Although the service will be available to all, the Pituitary Foundation particularly wants to extend their reach by appealing to young people. They are often more at risk of being isolated or excluded as some may feel they don’t fit into the support group environment or don’t feel comfortable making a phone call to the Helplines. The project will be managed by staff members, Pat McBride and supported by Sammy Harbut, with trained volunteers being involved in the running of this project. The service will provide practical Information and support in the following areas:    

Caring emotional Support Information – signpost to relevant publications and resources and information on medication and treatment options. Education – signpost to information to give to GPs and other healthcare professionals. Community – bring people together by recommending Local Support Groups or a telephone buddy with appropriate experience.

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The costs of training staff and volunteers, the set up costs, new software, marketing/publicity and equipment costs do add up but it is felt it is a crucial development in accessing the services particularly for the currently unrepresentative groups of younger people. You only have to look at the average age of LAPPS members attending our meetings and it is obvious we don’t seem to attract nor retain young people. So, the Pituitary Foundation is asking for members of Local Support Groups to donate to help make the project happen. No donation amount is too small – all donations would be greatly appreciated. Please send cheques, made payable to the Pituitary Foundation, to me and I will forward them. Many thanks Joy

Professor John Wass – An Endocrinologist’s View The following article was written by Professor John Wass for Pituitary Life. It is being reproduced here with the kind permission of the Pituitary Foundation. Patients and doctors are equal. Only the patient knows the symptoms and the doctor knows about endocrinology – and so can the patient know about endocrinology. Going to outpatients is like preparing for a meeting. You need to prioritise the symptoms that are topmost and make sure these come out first. Chest pain is obviously important but loss of the outer third of the eyebrows is not going to affect quality of life or life expectancy. Take a list if necessary. You should know what you want to get out of the meeting with your doctor. It also helps to take a relative or a friend. All patients are different. If you are organised about the outpatient clinic appointment, they are more likely to be. You need to feel empowered. I think taking an interest in your condition is important. You should check your doses and your results. You should probably see your results and make sure they are satisfactory. You can get copies of them together with the copies of the letter your consultant has written; there should be a clear plan with your consultant of what you are going to do, and what the plan for monitoring treatment is. This should be clear to you, as well as to the person looking after you. If you are not happy, then you can politely but firmly do something about this. The consultant or registrar should listen and act. If you are seeing the registrar you can ask to see the consultant or you can see another consultant. This is all within your rights. This can be done non-aggressively. These are some of the ways in which you can ensure that there is a satisfactory outcome to your consultation and your satisfactory progress generally. This was one of many excellent articles written by the members of the medical profession in the latest Pituitary Life. If you want to read the many informative articles, updates and patient stories in the 3 times a year Newsletter then contact the Foundation today and become a member. Annual subscription is £20 (£10 concessions). For more detail contact Emily Mullen on 0117 370 1319

Contact Us LAPPS 153 Crookston Road, London, SE9 1YG T: 020 8850 7888 E: [email protected]

Area coordinator: Joy Ginn Treasurer: Tara Singh Newsletter Editor: Erica Purvis Committee Members: Alan Hanley, Anne Hastings 6