life expectancy

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life expectancy

Postby stevea » Wed Oct 02, 2019 10:34 am

I have been chatting with someone who has read research that life expectancy for patients taking replacement cortisol is shorter than was first thought. anyone read this or have an opinion? i don't know the source of the research
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Re: life expectancy

Postby DerryAcro » Wed Oct 02, 2019 6:42 pm

hi steve a the first thing i would do is go back to this person and get name of author and date paper published the latest paper i have seen is by Dr. André Lacroix, Spring, 2017 i will post his conclusion here to try and reassure you

In conclusion
In order to maintain normal life expectancy and good quality of life, it is very important that patients with adrenal insufficiency and their close ones discuss these issues extensively with the medical team and nurses. Patients must learn to follow very closely the recommended daily timing and doses of hormone replacement, and to make proper adjustments in cases of illness. It is hoped that we will have even better preparations of steroid hormone replacement in the next decade to improve quality of life in patients with adrenal insufficiency.

If there is more up to date information i have yet to find it . will post anything new i come accross.

just found newer peer reviewed paper it can be found here https://www.uptodate.com/contents/adren ... sics/print


no change in life expectancy

ADRENAL INSUFFICIENCY PROGNOSIS

The long-term outlook is good for most people with adrenal insufficiency who are treated and monitored. Most people can lead an active life and have a normal life expectancy. Children with adrenal insufficiency who are treated and monitored carefully can grow normally and experience puberty without difficulty.
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Re: life expectancy

Postby member_41389 » Wed Oct 02, 2019 8:00 pm

Hi
This topic is very controversial for a large number of reasons, not least of which is that death as a consequence of adrenal insufficiency is rarely explicitly identified. For example, last year I developed sepsis from a persistent chest infection and was sent direct to the "Ambulatory Care" unit of the local very large hospital. The consultant had just said I didn't need antibiotics or anything when I collapsed. Fortunately my wife (ex-nurse) said stick 100mg hydrocortisone in him now. Unfortunately they decided to admit me first! 90 minutes later the consultant happened past, by which time I was non-responsive, and said has he had the hydrocortisone yet. The nurse said no we've not finished admission process at which there was a loud bang and I got the jab about 2 minutes later. It still took another 2 hours to get a saline drip running though. If I'd not survived I would have been a victim of sepsis, not gross mis-management of adrenal insufficiency.
The mortality statistics are very confused because all cause mortality for AI patients runs about twice the norm. The excess seems to be due to suscepibility to infections. The key point being we are no more likely to catch one than anyone else. However we are twice as likely to need antibiotics for a chest or urinary tract infection and 4 times more for a gastric infection (latest stuff from paper by Arlt and Wass based on records of English GP practice).
The key message is Sick day rules - Double for temperature over 37.5, treble for over 38.5 and double for the whole course of any antibiotic. My own rider to this is don't be over zealous in dropping back to usual dose as you have to feel better first.
Tim
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Re: life expectancy

Postby plum » Thu Oct 03, 2019 4:18 pm

Hi all

This is a very interesting discussion.
I wonder what other factors are also compounding things. For example I read that lanreotide is linked to the formation of gallstones. So it seems that whatever we take to deal with one problem just seems to bring additional risks.

(Tim - that was a close shave that you had there....)

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Re: life expectancy

Postby member_41389 » Thu Oct 03, 2019 7:30 pm

Yes Plum
Both Octreotide and Lanreotide increase risk of gall stones, paseirotide it's Diabetes Mellitus and pegvisomant it's liver problems as well. It's all a juggling act with possible desired effect versus undesired consequences.
Recently I've been trying to get off Gabapentin; I strongly suspect it's worsened the effects of acromegaly on my heart. I was prescribed it for pain, trigeminal neuralgia, but the aim was a neuro procedure to help without the chemicals. Unfortunately they wouldn't give me an anaesthetic while they tried to manage cardiac symptoms so I was left dangling for almost a year. I'm in my third month of the weaning and it's very dificult, physically debilitating, breathlessness and wrecked sleeping patterns. I don't remember being warned about that, just told don't stop suddenly.
Life's all too often interesting in the sense of the chinese proverb.
Tim
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Re: life expectancy

Postby Mgh » Sat Oct 05, 2019 1:37 pm

A very interesting topic. Thank you Steve for raising it and others for interesting contributions. The administration of the hydrocortisone injection really shouldn't be a matter of luck but it is. Tim's experience as a knowledgeable patient with a knowledgeable wife, in what is not a small local inexperienced hospital, clearly demonstrates the danger an Adrenal Insuffiency patient faces in any hospital situation. I think at the very least we all need a confident and well informed advocate alongside us in times of crisis to help ensure our need for hydrocortisone is met.

Tim makes a very interesting point that if he had not survived (thankfully he did) sepsis would have been recorded as the reason. This of course begs the question as to how reliable the current data is on life expectancy. Delving further into the data on the issues surrounding death in AI patients could make an interesting research project. What part do co-morbidities play? What part does lack of coordination and cooperation between different medical specialisms play in the well-being or otherwise of the AI patient? What issues might be attributable to the actions and interactions of medication?

Tim, keep up the good work! Your contributions are always astute and helpful.
Maria
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Re: life expectancy

Postby Mgh » Sat Oct 05, 2019 3:05 pm

While browsing www.adrenal-insuffiency.nz in preparation for a visit there, I came across an article that may be of interest. Unfortunately I am unable to link directly to it but these are the details. Bruno Allolio examines 'Adrenal Crisis', in the Eurooean Journal of Endocrinology, March 2015. Vol 172 pages R115-R124.
If anyone is able to provide a direct link please do. These days I need to read such articles a number of times to absorb the information initially and then I need to revisit to help me recall what is relevant.
Maria
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Re: life expectancy

Postby DerryAcro » Sat Oct 05, 2019 7:49 pm

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Re: life expectancy

Postby member_41389 » Sat Oct 05, 2019 7:59 pm

Hi
The question of co-morbidities is interesting and the ADSHG past chairman published a number of studies, likehttps://eje.bioscientifica.com/view/journals/eje/162/1/115.xml which showed the range of triggers for needing emergency care. First lesson from this is to be obsessive about hand hygiene!
Tim
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Re: life expectancy

Postby Mgh » Sat Oct 05, 2019 9:07 pm

Yes, DerryAcro, that is it, thank you.
Tim, thank you also for your link too.
Most of the research seems to be done in relation to primary adrenal insufficiency, Addison's patients. We pituitary people are probably too diverse and complicated to fit neatly into a research proposal, too many variables to control. However, we still have much to learn about adrenal crisis issues even if we are not the direct subjects of the research.
Maria
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