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Dr. Steve Ball Dr Ball opened his session with the welcome offer of a non-lecture format Q & A session, which pleased all present. Here are the questions patients asked: Q | Patient has Diabetes Insipidus (DI) only and suffers with excess fluid on legs; should patient stop/change DDAVP dosage? | A | It's said that if you stop DDAVP any excess fluid accumulated due to DDAVP especially in the circulation will go, but it doesn't address the specific problem of ankle/leg swelling that may well be due to other local causes - so don't look for an answer by omitting or changing your dose of DDAVP |
Q | I find taking Desmospray makes me bloat up, so I stop the dose for 3-4 days. | A | It's not normal to bloat up with DDAVP; if you've been on the same dose for years and are otherwise well it may be worthwhile thinking of other causes. |
Q | Could it (my DI) get better? | A | DI is for life, with the exception of temporary DI due to some surgeries. You may not have to retain the same treatment, nor may it have the same impact it had on your life in the early days. Over the years you also become more used to how much you drink - the usual standard input says 2 to 3 litres per day, but some people with mild DI can drink up to 4 litres of fluid. You may need less DDAVP, as you may cope better with your DI as time goes by. Or you may become more sensitive to DDAVP and so need to take less. Some DI patients take no DDAVP at all, they just manage their condition better. |
Q | I had head surgery 12 months ago, but still have DI. | A | If after 24 months it is probable you'll always have DI, but it may be mild enough to not have treatment. |
Q | Is DI hereditary? | A | Some familial forms of DI can occur, although this is unusual. |
Q | Could my daughter inherit DI from me as I have Sheehan's Syndrome [childbirth onset of DI]? | A | No. |
Diabetes Insipidus - making it more straightforward Dr. Ball used the analogy below to help patients understand their condition better: Think of a bath - the body likes to keep the level of the bathwater the same (and there are lots of mechanisms in the body keeping the water at the same level). Only one way of water into the bath = taps (mouth). Only one way of water out of the bath = the plug (kidneys). What regulates the tap - your thirst. The part of brain to sense dehydration makes you thirsty (makes taps come on) so you drink. The plug goes in to stop you losing bath water Vasopressin is released to keep the bathwater (body) balanced. The tap (thirst) goes off. In a patient with DI the plug doesn't fit, partially or wholly depending on the severity of your DI - due to less or no vasopressin released from the pituitary. Diagnosing Diabetes InsipidusMost of the patients present had undergone the 'infamous' Water Deprivation Test to diagnose their DI. A lively discussion included the following points: - The worst experience many had endured - the dehydration was unbearable, making you feel extremely ill.
- You'd have to be a saint not to cheat (i.e., sneaking water from somewhere).
- Clinicians had suggested patients couldn't possibly pass these huge amounts of urine without sneaking drinks.
- The test took too long and it seems antiquated in these modern times.
- A parent felt hopeless and frustrated watching their child suffer through this test.
- Surely a simple blood test could diagnose DI? - a thought for the future.
Methods of TreatmentThe three typical types of replacement DDAVP vasopressin (synthetic) hormone are: Desmo Tabs - Oral tablets. Easy to take, carry and store. Desmospray - Bottle with specific dosage which is sprayed up nostril. Don't need to store in fridge, but dose can be too much within each spray for those with mild DI. Dr. Ball advised that his hospital pharmacy can dilute the Desmospray liquid to suit the individual. Desmopressin Intranasal - Bottle with thin plastic tube you insert into opening of bottle to fill to desired dose, then place one end of tube in nostril and other end between lips to 'blow and sniff'. Takes practise but allows individual dosages. Must be refrigerated. Some patients find if they have a cold, allergy or hayfever the spray and desmopressin doesn't work as well. This is due to poorer absorption within the nostril. You could try alternating nostrils or asking your GP for Desmo tabs. DDAVP is a bit of a 'blunt instrument' says Dr. Ball, as people's absorption and sensitivity to the medication can vary. Overdosing on DDAVP - Many people don't take their treatment once a week (approx) to ensure good fluid output. This is due to cautions expressed by their clinicians on taking too much DDAVP. Dr. Ball suggests that increasing our DDAVP on a very regular basis would be dangerous. We should be guided by our thirst, as this is the most powerful stimulus. Many people in our society drink excessively to their needs, just by socially drinking say tea and coffee etc. through the day - even if not particularly thirsty. If you have DI and not taking medication (for whatever reason) you would be very safe with free access to fluids. Our session with Dr. Ball was informative and extremely helpful; we felt he had a great empathy for the daily struggles we often have, having DI. Many thanks, Dr. Ball. The Pituitary Foundation produces a leaflet about Diabetes Insipidus. If you would like one, please email helpline@pituitary.org.uk or phone our HelpLine on 0845 450 0375.
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