Group Meeting, Saturday 8th October 2022
The group’s latest meeting was held on Saturday 8th October in our usual venue at the University of Birmingham School. The attendance was very good – 22 people came along and another 12 sent their apologies. We had two speakers at the meeting – Dr Helena Gleeson from QEHB and Jay Sheppard, The Pituitary Foundation’s fundraising manager.
Helena’s talk was titled ‘Pituitary Late Effects of Treatment’ – she used the example of treatment given to a cancer patient because there are some overlaps on the long term effects of the treatments given to some pituitary patients.
Helena explained that radiotherapy (RT) carries a higher risk of damaging the function of the pituitary gland. RT takes many years to fully work and monitoring of the patient is required over this period. Patients often become deficient in one or more of the pituitary hormones and will require replacement therapy.
If thyroid deficiency occurs, your T4 level needs to be checked by an endocrinologist – most GPs will only test for TSH but this level is of no use for pituitary deficiency. Replacement therapy is by levothyroxine tablets.
Low sodium levels can lead to diabetes insipidus and/or adrenal insufficiency.
Growth hormone replacement can greatly help with a patient’s quality of life.
Modern RT techniques such as GammaKnife and proton beam cause far less collateral damage to the pituitary gland.
Jay introduced himself and explained his role as The Foundation’s head of fundraising. He told us that a childhood illness which almost killed him was the reason he started fundraising. At the age of 15 he started running marathons because he wanted to give something back. He said that if he is told he is not able to do something, he deliberately forces himself to do it.
He worked as an HR manager in the NHS and, after running the London Marathon, he obtained a fundraising position. He joined The Foundation in 2013 and since then he has helped to oversee the raising of £6 million – an impressive feat by any standard! Steve told the meeting that he had been involved with The Foundation since it started and had seen various fundraising managers come and go. Steve said that he had no reservation in saying that Jay was the best one and his enthusiasm for raising money is incredible.
Jay said that The Foundation is currently developing a new strategy and looking at refreshing the brand. An overdue revamp of The Foundation’s website is also in the pipeline. Future aims are to raise awareness in primary health care, with endocrinologists and with the general public.
Steve
The group’s latest meeting was held on Saturday 8th October in our usual venue at the University of Birmingham School. The attendance was very good – 22 people came along and another 12 sent their apologies. We had two speakers at the meeting – Dr Helena Gleeson from QEHB and Jay Sheppard, The Pituitary Foundation’s fundraising manager.
Helena’s talk was titled ‘Pituitary Late Effects of Treatment’ – she used the example of treatment given to a cancer patient because there are some overlaps on the long term effects of the treatments given to some pituitary patients.
Helena explained that radiotherapy (RT) carries a higher risk of damaging the function of the pituitary gland. RT takes many years to fully work and monitoring of the patient is required over this period. Patients often become deficient in one or more of the pituitary hormones and will require replacement therapy.
If thyroid deficiency occurs, your T4 level needs to be checked by an endocrinologist – most GPs will only test for TSH but this level is of no use for pituitary deficiency. Replacement therapy is by levothyroxine tablets.
Low sodium levels can lead to diabetes insipidus and/or adrenal insufficiency.
Growth hormone replacement can greatly help with a patient’s quality of life.
Modern RT techniques such as GammaKnife and proton beam cause far less collateral damage to the pituitary gland.
Jay introduced himself and explained his role as The Foundation’s head of fundraising. He told us that a childhood illness which almost killed him was the reason he started fundraising. At the age of 15 he started running marathons because he wanted to give something back. He said that if he is told he is not able to do something, he deliberately forces himself to do it.
He worked as an HR manager in the NHS and, after running the London Marathon, he obtained a fundraising position. He joined The Foundation in 2013 and since then he has helped to oversee the raising of £6 million – an impressive feat by any standard! Steve told the meeting that he had been involved with The Foundation since it started and had seen various fundraising managers come and go. Steve said that he had no reservation in saying that Jay was the best one and his enthusiasm for raising money is incredible.
Jay said that The Foundation is currently developing a new strategy and looking at refreshing the brand. An overdue revamp of The Foundation’s website is also in the pipeline. Future aims are to raise awareness in primary health care, with endocrinologists and with the general public.
Steve
Group Meeting, Saturday 11th June 2022
Our second face-to-face meeting after lockdown was held on Saturday 11th June 2022. The meeting was held at our usual venue of The University of Birmingham School although not in our usual location. The area where we used to meet has been re-allocated and we were offered the 6th Form area on the ground floor. The area was spacious and light and well suited to a group meeting. Twenty-four people attended the meeting.
Nigel kicked off the meeting by bringing us up to date on things. We then watched a recorded session between a Foundation staff member and our favourite endocrinologist, Prof John Wass.
Sherwin was going to give a talk about adrenal insufficiency and a refresher on how to administer an emergency injection. Unfortunately, Sherwin was unable to make it and deputised Miriam to fill in for him. Miriam was unwell at the last moment and nurses Ofelia and Zondie stepped in – many thanks to them for taking it on at such short notice.
They gave us a talk about adrenal insufficiency, hydrocortisone replacement and the sick day rules. We then broke into small groups and practised giving an emergency injection. Steve handed out an instruction sheet on how to give an injection which can be kept in your emergency kits.
Don’t forget that there is a section on adrenal insufficiency on our website and this also has links to the relevant pages on The Foundation’s website.
David and Nigel are arranging a meal at The Vine for the end of August – details to follow.
They are also planning a meeting to coincide with Awareness Week in October – again, details will follow.
Steve
Our second face-to-face meeting after lockdown was held on Saturday 11th June 2022. The meeting was held at our usual venue of The University of Birmingham School although not in our usual location. The area where we used to meet has been re-allocated and we were offered the 6th Form area on the ground floor. The area was spacious and light and well suited to a group meeting. Twenty-four people attended the meeting.
Nigel kicked off the meeting by bringing us up to date on things. We then watched a recorded session between a Foundation staff member and our favourite endocrinologist, Prof John Wass.
Sherwin was going to give a talk about adrenal insufficiency and a refresher on how to administer an emergency injection. Unfortunately, Sherwin was unable to make it and deputised Miriam to fill in for him. Miriam was unwell at the last moment and nurses Ofelia and Zondie stepped in – many thanks to them for taking it on at such short notice.
They gave us a talk about adrenal insufficiency, hydrocortisone replacement and the sick day rules. We then broke into small groups and practised giving an emergency injection. Steve handed out an instruction sheet on how to give an injection which can be kept in your emergency kits.
Don’t forget that there is a section on adrenal insufficiency on our website and this also has links to the relevant pages on The Foundation’s website.
David and Nigel are arranging a meal at The Vine for the end of August – details to follow.
They are also planning a meeting to coincide with Awareness Week in October – again, details will follow.
Steve
Social get together, Sat March 5th 2022
At last we have held our first face-to-face meeting since lockdown started.
Twenty group members met up at The Vine in Harborne for a chat and a meal.
The food at The Vine was very good and the staff were polite and attentive.
Everyone said how much they had enjoyed the event and it was certainly great to get to talk to people we haven't seen for two years.
We are now looking at organising a normal face-to-face meeting - watch this space!
At last we have held our first face-to-face meeting since lockdown started.
Twenty group members met up at The Vine in Harborne for a chat and a meal.
The food at The Vine was very good and the staff were polite and attentive.
Everyone said how much they had enjoyed the event and it was certainly great to get to talk to people we haven't seen for two years.
We are now looking at organising a normal face-to-face meeting - watch this space!
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June 12th 2021 Zoom Meeting
We were very pleased to welcome back Prof John Wass and we thanked him for giving up some of his free time to talk to us.
Prof Wass always gives interesting and informative talks and he is always willing to answer questions from group members.
After a few teething problems such as hearing but not seeing some members and a high-pitched feedback which had us all reaching for the mute button, the meeting got under way.
He started off by telling us that he has now completed a 9-month audit of the 127 pituitary centres in England. He said that some centres are good but others are not so good. His team have formulated various recommendations to address these issues.
He told us that there has been a 130% increase in pituitary referrals and one of the aims is to ensure patients have pre-testing before attending a clinic.
There are 23 centres carrying out pituitary surgery and Prof Wass stressed that endocrinologists should be referring patients to one of the good surgery centres – one where the surgeon(s) performs a minimum of twenty operations a year. One of the recommendations made was that some of the smaller surgical centres should merge with larger ones to ensure patients get a better service.
It was encouraging to hear that 64% of endocrine departments issue their steroid-dependent patients with emergency hydrocortisone injection kits and that support for patients by endocrine specialist nurses has greatly improved.
Prof Wass said that he is also working with a Department of Health group to ensure the continuing supply of all the pituitary drugs – apparently, 80% of them are imported.
He also mentioned that it is important for pituitary patients to have the two covid injections and that side effects are rare. He added that a decision was awaited on whether to give a top-up covid injection in the autumn along with flu injections. Nigel asked if we should increase our dose of hydrocortisone prior to having a covid injection. Prof Wass said that taking paracetamol was a better option but, if side effects are encountered, then take extra HC.
For those of us on replacement hydrocortisone a new steroid-dependent emergency card is now available (this can be downloaded from our website). New websites should become available in the next four months and all A&E departments will be made aware of the importance of emergency hydrocortisone.
Prof Wass said that growth hormone replacement is important for those who need it and any side effects are minimal. A large percentage of patients on GH replacement have reported an improvement in quality of life. GH replacement needs to be regularly monitored.
He told us that new drugs for acromegaly and Cushing’s will be coming onto the market soon. Surgery will remain the principal option for acromegaly but more patients will be treated biochemically.
Vitamin D is very important to the body and most people in the UK are probably deficient. Pituitary patients should ideally be taking 2000 units of daily replacement – tablets or sprays are readily available from chemists.
One for the men – testosterone replacement does not cause testicular or prostate cancer but can have an effect on it if it already exists. It is important that you have your PSA (prostate-specific antigen) level tested annually.
Prof Wass went on to answer several questions from members.
Another excellent Zoom meeting – thanks to our co-ordinators for organising it and to Prof Wass for giving us his time.
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We were very pleased to welcome back Prof John Wass and we thanked him for giving up some of his free time to talk to us.
Prof Wass always gives interesting and informative talks and he is always willing to answer questions from group members.
After a few teething problems such as hearing but not seeing some members and a high-pitched feedback which had us all reaching for the mute button, the meeting got under way.
He started off by telling us that he has now completed a 9-month audit of the 127 pituitary centres in England. He said that some centres are good but others are not so good. His team have formulated various recommendations to address these issues.
He told us that there has been a 130% increase in pituitary referrals and one of the aims is to ensure patients have pre-testing before attending a clinic.
There are 23 centres carrying out pituitary surgery and Prof Wass stressed that endocrinologists should be referring patients to one of the good surgery centres – one where the surgeon(s) performs a minimum of twenty operations a year. One of the recommendations made was that some of the smaller surgical centres should merge with larger ones to ensure patients get a better service.
It was encouraging to hear that 64% of endocrine departments issue their steroid-dependent patients with emergency hydrocortisone injection kits and that support for patients by endocrine specialist nurses has greatly improved.
Prof Wass said that he is also working with a Department of Health group to ensure the continuing supply of all the pituitary drugs – apparently, 80% of them are imported.
He also mentioned that it is important for pituitary patients to have the two covid injections and that side effects are rare. He added that a decision was awaited on whether to give a top-up covid injection in the autumn along with flu injections. Nigel asked if we should increase our dose of hydrocortisone prior to having a covid injection. Prof Wass said that taking paracetamol was a better option but, if side effects are encountered, then take extra HC.
For those of us on replacement hydrocortisone a new steroid-dependent emergency card is now available (this can be downloaded from our website). New websites should become available in the next four months and all A&E departments will be made aware of the importance of emergency hydrocortisone.
Prof Wass said that growth hormone replacement is important for those who need it and any side effects are minimal. A large percentage of patients on GH replacement have reported an improvement in quality of life. GH replacement needs to be regularly monitored.
He told us that new drugs for acromegaly and Cushing’s will be coming onto the market soon. Surgery will remain the principal option for acromegaly but more patients will be treated biochemically.
Vitamin D is very important to the body and most people in the UK are probably deficient. Pituitary patients should ideally be taking 2000 units of daily replacement – tablets or sprays are readily available from chemists.
One for the men – testosterone replacement does not cause testicular or prostate cancer but can have an effect on it if it already exists. It is important that you have your PSA (prostate-specific antigen) level tested annually.
Prof Wass went on to answer several questions from members.
Another excellent Zoom meeting – thanks to our co-ordinators for organising it and to Prof Wass for giving us his time.
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