Postby member_31784 » Wed May 15, 2019 9:39 am

Recently had an 8 day spell in hospital with low salt levels. It came on very suddenly with violent vomit followed by severe tremors. Myself and the six medics with me ( I was at family party) thought it was an Addisons crisis and administered my emergency cortisol. After that I felt better, slept and was ok until around 11am next day when the violent shaking started. Went to A&E ( RVI in Newcastle as I was on holiday) they too identified adrenal crisis brought on my mild UTI and sent me home. Next day exact repeat of symptoms taken to A&E, again identified as adrenal crisis, stabilised and admitted onto investigation unit, they identified low salt and took me off Desmopressin and interestingly insisted I kept my hydrocortisone at normal daily dose. Eventually salt went up and I was allowed to return to London where they’ve made me an emergency follow up with my endo. Now in totally confusion ( not the confusion and word slurring I was suffering under low salt) over my condition.

Wondered if anyone else suffered similar low salt and how it was resolved.

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Re: Hyponatremia

Postby Carl » Thu May 16, 2019 9:12 am

Hi Karen

Thankfully I've only had one crisis which landed me in hospital, mine was because of infections (tonsillitis, laryngitis) and vomiting and although I didn't realise until I was admitted, Hyponatraemia.

I was in hospital for 5 days until I was stabilised and it sounds to me like you were discharged too early. I was on high dose intravenous Hydrocortisone and fluids for several days until I started to feel better. The high-dose Hydrocortisone sorts out the adrenal crisis very quickly, but the IV fluids were necessary to sort out my sodium levels which were so bad when I was admitted, I was nearly unconscious. Obviously an adrenal crisis is life threatening, but so is Hyponatraemia. Here are some guidelines on dealing with an adrenal crisis https://www.endocrinology.org/adrenal-crisis and Hyponatraemia https://cks.nice.org.uk/hyponatraemia#!scenario

I found it took me many weeks to get over my hospital admission even long after the infections had cleared up. I was on a higher dose of HC because of the strong antibiotics being used to clear the infections and although I had 'transient' Diabetes Insipidus for a while, I didn't have it during my hospital admission so this will be an added complication for you trying to get your fluid balance correct.

I think I would have a chat to the Pituitary Foundation nurse helpline see https://pituitary.org.uk/support-for-yo ... -helpline/ because this is a bit of a complicated scenario, and they will hopefully be able to give you some pointers on the kind of questions to ask your doctors. Good luck and hope you feel better soon.

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Re: Hyponatremia

Postby Pat » Thu May 16, 2019 10:00 am

Hi Karen

as Carl says, Pauline will be very helpful in guiding you.
Meanwhile if anyone not seen this, I hope it's some help:

Living with Diabetes Insipidus
Pat McBride, Head of Patient & Family Services, The Pituitary Foundation

Diabetes Insipidus
Diabetes insipidus (DI) is caused by a problem with either the production, or action of the hormone vasopressin. If you have DI, your kidneys are unable to retain water. This leads to the production of large volumes of urine and in turn, an incredibly increased thirst. Some patients with DI do not experience thirst normally, but this is unusual. DI can occur at any age but is mostly found in adults. It is a rare disorder, and affects about 1 in 25,000 people. Appropriate treatment is given using desmopressin (replacement hormone medication).

Impact of having DI

A person with diabetes insipidus has a thirst that cannot be quenched by any amount of drinking, and they pass copious and very regular amounts of urine. It is understandable for people who don’t have DI to imagine that passing urine and drinking fluids couldn’t possibly be a problem or have such an impact - everyone passes urine, everyone drinks fluids, everyone has a toilet and there is plenty of water in the tap!

It is really difficult to do justice to the impact of these symptoms. If you can imagine having a completely dried up mouth after eating 4 or 5 dry cream crackers, one after the other. If you can imagine having to be near a toilet so you can pass urine every 20 minutes – 24 hours a day. Sleep is very much interrupted, not to mention trying to work, or even have a social life. Some DI patients can drink 10 litres of fluids each day and pass almost this amount in urine too.

Thankfully, desmopressin eases these symptoms until breakthrough, which happens about twice or three times a day, then the symptoms as described above come back with a vengeance.

What is the right dose?

Desmopressin is generally taken twice daily (morning and night time) but this of course can vary depending on the individual, and the advice of their endocrinologist.

In an ideal world, one dose would suit all - the same dose could be taken, at the same time each day, to produce normal amounts of urine and control your thirst.
For individual patients though, trying to prescribe an optimum dose of desmopressin can be difficult, because each patient experiences different absorption, day-to-day needs and routines.

For example, on a daily, weekly or monthly basis, a DI patient could find a variation in:
• Diet
• Physical activity
• Wake and sleep cycle
• Stress levels
• Hot weather

Any of the above can have an effect on the length of time your usual dose will work for, until ‘breakthrough’ occurs.

What does ‘Breakthrough’ mean and how does this affect you?

This is the period when your dose of desmopressin medication has run out; symptoms of excessive peeing and thirst start, which means that your next dose is due.
Earlier breakthrough can sometimes occur several hours before your next normal dose is due.

Choosing the right product

The particular desmopressin product and dose given at diagnosis should be seen as a base for you and your clinician to work from, for best future management of DI. Things to consider:

• The product version or dose might be too strong or too weak for you
• It may take too long to work, to relieve your symptoms appropriately
• Inconvenient to take - your lifestyle may suit a more unobtrusive delivery, for example by changing from the rhinile or spray to the Melt, or the tablet
• An inflexible dose - the product given may not be adjustable in delivery, so that if you ‘breakthrough’ too quickly before your next dose is due, you may take too much over 24 hours, leading to retention of water
• The patient may not be able to use their usual product, for example due to dexterity, or a blocked nose because of a cold.

Choice of products available:

Name of DDAVP® product Dosage/strengths available Recommended initial dose: How it is taken Comments
(Ferring) 60 mcg; 120 mcg; 240 mcg 1 x 60mcg Melt three times a day.
Place under tongue. Dissolves within seconds, no unpleasant taste. Convenient to store, carry and discreet to take. Works within 30 minutes to relieve symptoms.
desmopressin nasal spray
(Ferring) 100 mcg/ml 1 or 2 sprays (10 -20mcg) once or twice daily, sprayed up the nostril. Does not require storing in a refrigerator. Works within 30 minutes to relieve symptoms.

DDAVP® desmopressin intranasal solution
(Ferring) 100 mcg/ml 10 – 20mcg once or twice daily; using thin rhinile tube to ‘sniff’ the solution up the nostril. Does require refrigeration. Dose can be flexible; works within 30 minutes to relieve symptoms.
DDAVP® tablets
(Ferring) 0.1 mg and 0.2 mg 1 x 0.1mg tablet three times a day. Take orally with water. Convenient to store and carry. A dose might take up to an hour to relieve symptoms.

Having a day off from desmopressin

Some clinicians may advise patients not to take their desmopressin for one day each week, to ensure they pass any retained fluid which could affect their sodium levels. This could be a nightmare for some DI patients.

If the patient is informed of their choices of product and helped to manage their dose for their individual needs, a period off their medication might not be necessary, unless of course directed by their clinician. If a patient is well informed and supported to take responsibility for their DI, this could achieve better management, rather than allowing the condition to ‘manage’ the patient.

How to improve management of your DI

When breakthrough occurs, the symptoms will drive you to take your dose, usually at whatever time this breakthrough happens:

• Severe thirst as soon as you start to pee
• Passing pale coloured or colourless urine very frequently
• Feeling irritable
• Dehydration
• Feeling cold and shivery

To manage an earlier breakthrough, (as it feels when you normally breakthrough) it can be necessary for symptoms to be relieved, without disrupting your usual dose regime too much.

If a whole dose is taken several hours early, say in the middle of the afternoon, your next dose (bed-time) will be pushed back, which could interrupt sleep. If for example you’ve broken through in the afternoon, a half measure of your usual dose could be helpful e.g. ½ tablet; one spray instead of two etc. This could cover symptoms up to your evening or bed-time dose. Tablets, Melts and the intranasal tube might offer more flexibility in doses.

Certain types of food, alcohol, stressful situations, (even menstruation), exercise or hot weather might impact on balancing your dose. It is helpful to discuss with your endocrinologist or GP, the options of desmopressin products that can offer the best delivery and appropriate dose for you.


Weigh yourself: A good test of satisfactory management of fluid levels is to weigh yourself each morning. A varying body weight on a day-to-day basis can help you monitor fluid balance when you start treatment. One litre of water weighs one kilogram. An ideal aim is for a patient to pass around two litres of urine over 24 hours whilst taking their desmopressin.

Thirst: Always be guided by your thirst. You will quickly get to know the ‘breaking through’ thirst which can appear quickly. It is an intense, uncontrollable thirst, and you’ll probably crave ice cold water (or any ice cold fluids – some DI patients prefer sparkling drinks to still). Children, when very thirsty, may smack their lips together irritably, and adults may do this too. Time for the next desmopressin dose.

Regular bloods: It’s sensible to have your sodium levels checked every 6 or 12 months. The normal range for your serum sodium is 133 – 146 nmol/L. Before blood is taken, let your doctor or endocrinologist know when you last took your desmopressin dose.

Less is more: It’s safest to take as moderate dose of desmopressin as possible, to ensure no build-up of fluid. Once your dose has been taken, drink as guided by your thirst until the dose has started to work and then limit fluid intake to ‘normal’ amounts.

Management of your DI when ill or in hospital

If you are unwell at home with a common illness, such as a cold or flu your usual dose routine is fine to continue on. However, if you are vomiting it is important to seek medical help; this is important too of course, for those patients also taking hydrocortisone.

If you are in hospital for elective surgery or on a medical ward for non-pituitary care, please do wear an appropriate medical emblem with ‘diabetes insipidus’ engraved on, stating you have DI and carry The Foundation’s DI Care Card and Diabetes Insipidus booklet with you. Take your DI medication with you (and any other pituitary medication you might take) and keep this with you if at all possible. If hospital policy states you cannot keep your medication with you, make sure the ward staff understand that your medication dose times may not be consistent with medicine rounds on the ward and you may need your desmopressin on demand and quite quickly. If they have any queries about this, request they contact your endocrinologist, or the endocrinologist on call in the hospital, as soon as possible.

Your relatives or friends visiting could also speak to the ward staff and ensure you have access to fluids (unless specifically nil by mouth for a procedure) and your DI medication.
Please see the ‘Hydrant’ bottle to order, from our website, which has a discount for our patients.

One of the most common things we hear from patients is that hospital staff believe they have diabetes mellitus or that DI is linked to this. On our DI emergency card it states clearly that the two conditions should not be confused. We suggest that you say you have ‘cranial diabetes insipidus’ or ‘pituitary diabetes insipidus’ to help hospital staff understand more quickly.

The NHS has implemented a safety alerting system which should help to minimise the risks for DI patients being denied their desmopressin when in hospital. This can be downloaded here for you to keep with you. https://www.pituitary.org.uk/news/2016/ ... rt-system/

This guidance has been recently produced and the link can be opened and shown to any health care professional looking after you:
Society for endocrinology clinical guidance: Inpatient management of cranial diabetes insipidus http://www.endocrineconnections.com/content/7/7/G8.full

Other resources for you:
• Toilet facilities access card – to help access toilets which aren’t usually allowed to be used by the public.
• DI Patient Care Card (October 2018) - a tri-fold card which clearly explains your needs in emergency and hospital care, plus has space for all your personal and endocrinologist/GP details.

High and low sodium

Hypernatraemia – high blood sodium

Almost always due to excessive loss of water (dehydration) without enough water intake.

This can include insufficient doses/poor management of desmopressin, with too much fluid being passed and not enough fluid taken in.

Symptoms include:
• dry mucous membranes (mouth, eyes etc.),
• thirst
• agitation, restlessness
• confusion
• weakness
• loss of appetite

Hyponatraemia – low blood sodium

Due to either too much sodium loss, too much water intake, fluid retention or accumulation in the body.

This can occur if you take too much anti-diuretic hormone (desmopressin) which will retain fluid in the body. An ideal aim is for you to pass around 2 litres of urine over 24 hours whilst taking your desmopressin.

Some people can run into problems if the balance of treatment means that they are taking in more water than they are passing out; this can lead to the gradual development of water overload and a drop in the level of sodium in the blood stream (hyponatraemia). This is best addressed through re-balancing treatment, through looking at how much desmopressin is given and how much fluid is being taken in.

Common symptoms include:
• weakness
• fatigue or low energy
• headache
• nausea and vomiting
• muscle cramps or spasms
• confusion
• irritability

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Re: Hyponatremia

Postby member_31784 » Thu May 16, 2019 12:13 pm

Thanks Pat and Carl

What’s worrying me is I’ve controlled my DI successfully for 10 years since my second op and suddenly gone haywire. Am seeing my own endo next week.

Thanks for the support.
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Re: Hyponatremia

Postby Pat » Fri May 17, 2019 8:48 am

Possibly with them taking you off desmo recently for low sodium, the good regime you had was thrown, but should settle soon. Your endo I hope will be helpful next week and reassure you. These episodes of crisis are awful and upset everything for a bit. I had one in March.
take care
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Re: Hyponatremia

Postby member_31784 » Fri May 17, 2019 11:50 am

Thanks, will keep you posted.
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Re: Hyponatremia

Postby member_31784 » Fri May 24, 2019 5:51 pm

Saw my own endocrinologist this week, frankly she was a bit bemused as I’m normally so well controlled. Lots more bloods and urine and she’s changed my Desmopressin to Desmomelts - so far not seen much difference, still peeing for England and very tired. Should get my blood results next week.
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