The New Zealand Acromegaly Society Newsletter No. 16 December 2015 Welcome to our final Newsletter for 2015 At this time of year we all seem so busy with the rush of Christmas and work. We would like to thank all the committee members and volunteers for all the hours and hard work they have put into the society this year. Wishing you all an enjoyable and relaxing holiday season. Looking forward to seeing you all next year! (The dates for our Christchurch BBQ & AGM 2016 are on the back page so start planning!) BBQ Auckland & Waikato Members - by Jackie Jeffrey (secretary) Len and I arrived late and found all the hard work had been done. Clark was superman on the day having put up the awning, unloaded the chairs. Kirk was a great chef doing a great job of cooking the sausages to perfection. Many bought a variety of salads which were enjoyed also. We were able to catch up with other group members they d not seen for a while, we also had one or two new members join us. Len and I certainly enjoyed ourselves. Stonefields is a new housing development having formerly been a quarry but is now transformed into a housing and a wildlife area which is starting to mature. It was quite windy on the day which reduced the enjoyment a little, but a great site for a picnic and I think a good get together enjoyed by all.
Steroid Therapy & the Pituitary Part 1 Thank you to Prof Ian Holdaway for expert review of this article Cortisol is a steroid hormone or glucocorticoid, the use of these terms is interchangeable. It is usually known as the stress hormone and is essential for survival. As you can see in the diagram below, under natural conditions the amount of cortisol present in the blood varies, controlled by a part of the brain called the hypothalamus, which sends chemical (hormonal) messages to the pituitary gland and then down to the adrenal glands, where cortisol is made. This pathway allows the right amount of cortisol to be produced depending on the body s requirements, with higher production rates in the morning and less in the evening. The highly regulated production of cortisol is hard to replicate using oral replacement cortisol therapy. Cortisol levels are normally regulated by the hypothalamus and pituitary gland. The hypothalamus sends corticotropin releasing hormone (CRH) to the pituitary gland. The pituitary gland responds by producing several hormones, one of which is ACTH (adrenocorticotropin hormone). ACTH stimulates the adrenal gland to produce cortisol. Cortisol levels in turn help to control the pituitary's production of Acromegaly patients can develop problems with low cortisol levels when their pituitary glands no longer produce enough ACTH, either by direct mass effect of the pituitary adenoma, or as a side effect of their treatment e.g. transphenoidal surgery or pituitary radiotherapy. We term this secondary adrenal insufficiency, primary adrenal insufficiency is when the adrenal glands themselves are damaged and cannot produce enough cortisol. Adrenal insufficiency is treated by taking cortisol hormone replacement, the goal being to relieve the symptoms of hormone deficiency without developing features of hormone excess. Treatment is usually lifelong. With appropriate treatment and precautions people with adrenal insufficiency can lead active lives and have a normal life expectancy. Symptoms of low cortisol levels The severity of symptoms depend on the severity of hormone deficiency and the speed of onset. After transphenoidal surgery for pituitary tumours, patients are usually put on short term hydrocortisone steroid replacement until their steroid levels can be checked, in case surgery has disrupted the normal pituitary gland function Symptoms of low cortisol include:
Fatigue, muscle weakness, inability to cope with stress, palpitations, social anxiety, energy lag particularly in the afternoon, brain fog, mild dizziness, irritability, low blood sugar, loss of appetite, mild nausea, clumsiness, confusion. Hitting the wall patients with low cortisol rely on stored adrenaline to get through stressful events to compensate for the cortisol boost healthy bodies produce. Then when the adrenaline rush finishes, we hit the wall. Severe nausea +/- vomiting, diarrhoea, vertigo, headaches, joint aches, prostration these are signs of an impending or established adrenal crisis. Adrenal crisis refers to life threatening adrenal insufficiency that requires emergency medical treatment with an emergency intramuscular injection of hydrocortisone. The most common symptoms are nausea and vomiting, abdominal pains, fever, fatigue, weakness, confusion, and shock (very low blood pressure with a loss of consciousness). Adrenal crisis usually occurs after an infection, trauma, or another stressor. Given the dangers of an adrenal crisis, acromegaly patients with adrenal insufficiency on long term steroid use should wear a medic alert bracelet, and should always have a vial of hydrocortisone injection at home, at work, and especially when travelling. It is also wise to share this information with family and friends so that they can identify signs of trouble and be prepared to act. Effects of excessive levels of cortisol Acromegaly patients who need to take cortisol replacement faces the challenge of finding the right replacement dose, in order to avoid both (1) symptoms of low cortisol and (2) side effects of taking too much. Excessive corticosteroid dosing can have the following adverse effects: Metabolism. Corticosteroids affect glucose metabolism and increase the likelihood of high blood sugar levels and the development of diabetes mellitus. Steroids increase appetite and can result in weight gain. Excess steroids affects protein metabolism causing muscle wasting, proximal muscle weakness, weakening of connective tissues causing stretch marks (striae), and easy bruising. Effects on fat metabolism causes trunk obesity, increase fat in the abdomen and liver, moon face, and buffalo hump (fat deposition between the shoulder blades) Osteoporosis thinning of the bones leading to an increased risk of fractures Inhibition of inflammatory responses and impairing white blood cell function. Prolonged excessive steroid dosing can cause reduced healing and increased risk of infections. Memory - long term excessive steroid dosing results in damage to cells in the hippocampus region of the brain involved with memory. Psychological effects range from mild irritability and depression, to euphoria and psychosis. Steroids can inhibit pain. Remember, for those with secondary adrenal insufficiency steroids are essential for life, therefore reducing the dose after long term treatment, if thought to be indicated, needs to be done very carefully. Steroid dosing should be done with care and using guidance from your endocrinologist in order to avoid the adverse effects of excessive replacement, and the dangers of under replacement. Part 2 Treatment of adrenal insufficiency will be published in our next newsletter If you have any questions on steroid therapy, please email it to catherine@acromegaly.org.nz and we will endeavour to have it published in our next newsletter (questions will remain anonymous)
Resources: The NZ Acromegaly Society has produced some useful resources including: Information booklet on Hydrocortisone advice for patients, including how to make up an emergency injection kit / resources/information_booklet Contact Us Email: info@acromegaly.org.nz Emergency Sheet (new) ideal to have at home and in your car. Available to download as a Word document and fill in your own details including next of kin contact, medical history and medication list. /resources/steroid-therapy Wallet card this is free for all members, please email catherine@acromegaly.org.nz if you would like one posted to you Address: PO Box 302, Morrinsville 3340 Chair Catherine Chan chair@acromegaly.org.nz 021-293 5506 Secretary & Waikato Rep Jackie Jeffrey secretary@acromegaly.org.nz 07-889 4466, 021 889 446 Disclaimer: All information in this article is compiled for the benefit of members. The NZ Acromegaly Society does not hold itself to be in any other capacity other than that of providing support to its members. All medical advice must be checked with a medical professional. AGM 2016 - Save this date! AGM 2016 will be held in Sudima Hotel, Auckland Airport Saturday 30th April 2016 Further details to come with our next newsletter Treasurer Wayne Holtham treasurer@acromegaly.org.nz 027 859 0761 Newsletter Editor & Grants Manager Clark McPhillips clarkm@acromegaly.org.nz 027 609 8516 South Island Rep Matt Cuthill matt@acromegaly.org.nz 027 859 0761 Member Support David Liebezeit david@acromegaly.org.nz 0272378565 Subscription Have you paid your subs lately? They are only $20 per annum. If it has been more than 12 months then they will be due!!! Please send your payment to: The Treasurer, New Zealand Acromegaly Society 5 Gingko Place Witherlea Blenheim 7201 Or use online banking A/ C W estpac Queen Street A/C No 03 0252 0840639-00 (Don t forget to put your name in the reference fields so we know who it is from) Check us out on Facebook! www.facebook.com/ acromegalysociety LIKE us on Facebook. Keep connected and stay up to date and connect with fellow members of our great little society!
South Island Members Sat Feb 20th 2016 at 3pm Matt Cuthill s house, 111 Ruskin Street, Addington, Christchurch RSVP to : 0278590761 by 13th Feb 16