Why am I so thirsty?

[Notverygruntled]

I went to the GP last week for the second time in six weeks (rarely go) and following 3 blood tests. GP not sure what to suggest, has said they will call me after consulting colleagues so, whilst waiting, thought I would consult the hive mind.

Shortly after Easter, I became quite thirsty.
Became particularly keen on juice. I had a blood test scheduled as I hadn't been feeling great for a while (I presumed it was anaemia
as I'm prone to that), and asked that they also test for diabetes. Bloods came back clear.

Thirst persisted, so I went back to GP, who suggested testing for calcium in case levels were high. Had another blood test, no issues. He also asked me to keep a bladder diary before returning.

I am now at the stage of drinking 6-7 litres of fluid a day, most of which seems to end up down the toilet! I am waking 3-4 times at night thirsty and needing the loo and the cycle is repeating (I get through a minimum of 2 x 500ml bottles of water a night and generally 2-3 glasses of juice, squash or milk).

I am shattered and really not sure how to get through a pending very busy few weeks at work. I am having to time drinks/loo breaks around travel and meetings and having to choose between being thirsty or needing the loo. Haven't heard back from GP so will chase on Monday.

Her suggestion was Sjögren's syndrome, but I don't have any joint pain. I am wondering about diabetes insipidus, but she didn't raise that. I am 50 but because I have regular periods and no hot flushes, apparently I can't be in peri menopause (she is the second female GP to say that to me, but that's something else to sort once this is....).

Any suggestions? She's said that it is not normal but doesn't know where to refer me to. Feeling somewhat down about it and no idea how/if to raise it with work as it just sounds a bit odd!

Thank you, @Cattyisbatty, I would agree re the peri, and can't quite believe 2 female GPs have said not! Lots of symptoms to address there once I work out which of th tiredness etc etc is caused by the mad thirst.

Slightly annoyed with myself for being fobbed off when I first when to ask about HRT last august.

Feeling a bit more positive now I have an appointment. Hugely grateful to this place for giving me a shove. And for all the replies.

Oh op you 100% should not have to pay. Yes I get it for things like knee replacements etc when quality of life is bad snd people can't wait but you have a serious problem that is imo urgent and necessitates an immediate referral to at least a medical consultant for tests.

If money isn't an issue and you can do this comfortably fine, but if it is a stretch then do rethink it. See a different GP and state 'I clearly have a significant issue as I'm drinking litres a day which will be doing my kidneys no good at all please do an urgent medical or endocrinologist referral now'. As I say, if you're ok with private fine but you have been absolutely mismanaged here. Wtf is your GP thinking .

@Janiie thank you and I agree. Fortunately we have some cover through husband's work, so I'm limited to the excess. Which is likely to be more than the appointment/tests but at this point, I just want it sorted and at least follow up will be covered. I'm not entirely convinced about timescales for urgent referrals in anything locally either. I will probably go back to GP once appointment completed though, as I'd feel more comfortable back in NHS system. And will raise my concerns at the delays in this, but just really want it sorted now.

Hi, I have idiopathic diabetes Insipidus and developed it when I was a child for no reason. No other pituitary or endocrine problems. Without desmopressin which I take 3 x daily I experience extreme thirst and need to drink constantly. Makes me feel tired and horrid. Hope you get it sorted soon. If it is DI, you’ll feel so much better when you get the desmopressin. Good luck.

Hi @PleasePickMeToWin, thanks so much for your post and sorry that I've only just seen it. I appreciate you taking the time to reply, particularly as you have first hand experience of this.

I had an endocrinologist appointment last week and am returning for further tests this week. Hoping to get some idea of what is causing this next week.

I'm pleased that your DI is being managed, it must have been awful to have as a child.

Thanks again!

Hi no problem. I hope you get the answers you need soon. When I was diagnosed I was just really thirsty a lot of the time- super thirsty- felt like my tongue was dry although it wasn’t. I would drink anything. This hot weather is awful when you’re already thirsty so I hope you’re alright. Good luck and if you do get diagnosed with DI feel free to message me for any advice if you
wish.

Thanks, @PleasePickMeToWin, I shall see how the next set of tests go and may take you up on that. I have a fasting blood test tomorrow, so nothing to drink after 9pm tonight until 9am tomorrow morning. Having spent the night chugging water every hour, am not looking forward to that! Worth it if it gives an answer either way, though!

I am pleased someone suggested Diabetes Insipidus. I was going to suggest this also. I would have suggested stalking A&E if your symptoms worsen also.

The test I had for DI was a water deprivation test where they remove water for a few hours and see if you lose weight (water) whilst not drinking. Blood tests can check sodium levels. I’d ask for a water deprivation test for DI if I was you. Good luck.

Thanks again for the replies, I had seen that a water deprivation test was how it was diagnosed and really hope it's not required as well as the fasting blood test I had. 12 hours without drinking last week was not fun (although I was half a stone lighter than the previous day when I woke up!).

Will call consultant re results this week and see what he says. I paid for this appointment but (finally!) saw a very good GP a couple of weeks ago and have an NHS appointment at the end of the month which I will cancel if I get some answers but is at least there if I have ongoing concerns or no diagnosis. Up again 5 times last week before a full day's work today so really hope I can get this sorted.

You must be beyond exhausted getting up so often. I hope you get answers soon.

Hi All,

Wanted to update on where I've got to, not least as everyone was so helpful. As per my last update, I saw an endocrinologist who advised that my blood tests indicated diabetes insipidus and that the next step would be a water deprivation test. I needed
a referral back to the NHS for this but fortunately still had an appointment with the NHS pending, so he wrote to the consultant advising this.

I saw a member of the consultants' team at the end of July who was AMAZING. Referred me on for tests and, had I not had a holiday booked, would have had the water deprivation test, more bloods and MRI scan done within the week! Due to my holiday dates, I was only able to have bloods and MRI done end July, WDT scheduled for next week.

I spoke to the consultant yesterday who has advised that it looks very likely that I have DI so, if confirmed by the WDT next week, they will sort treatment straightaway which should address the constant thirst and, erm, output (8 litres in, 8'litres out per day...). This in itself will be an absolute game changer as I am
beyond shattered due to night time wake ups.

They have also found a possible cause in the MRI, a lesion on the pituitary gland. I'm being referred on so that this can be further assessed and treatment discussed. Am somewhat apprehensive about this but on the plus side, all my other hormone readings are fine and I am at least thoroughly in the system as/when treatment is required.

So a huge thank you to all those of you who took the time to reply and made me push for a referral. Very pleased that in the short term I should get some relief from the thirst symptoms (I have visited many, many toilets this summer.....). Hopefully I will then be feeling better to tackle whatever comes next!

I will also be writing to my GP to thank them for the (emergency) referral they finally gave me.

And thank you all again for your support.

Hi I’m so pleased you got the answers you needed. As I mentioned, I have idiopathic DI too. The demopressin takes the thirst away immediately- within seconds, and makes me feel human again. I take it three times a day and have done for almost 40 years. It’s absolutely fine, I live a totally normal life and I’m sure you will too.if you have any questions, feel free to get in touch. Otherwise, wishing you all the best for the future. Ps.there is a group called ‘The Pituitary Foundation’ with helpful info.

I'm glad you're getting answers. Who are you being referred to re the lesion? If they don't suggest it, do push for a repeat MRI in some months time so they can check the relative size.

Thank you, @PleasePickMeToWin, I didn't want to trouble you until I had a proper diagnosis but may take you up on that if that's ok (once testing is over)? I had thought it would just be a case of getting meds and moving on but can see that there may be more to it than I thought!

@BlackSwan, I'm being referred to a multi disciplinary team in a neighbouring trust (Oxford). Not sure who as yet but will see what happens when I have more info.

Thank you both for replying. I haven't updated anyone IRL as yet, partly because not yet sure what next and also as I spoke to endo on Thurs when DD1 had just collected her GCSE results and I didn't want to spoil her day. Looking forward to some sleep and can then see what next!

Of course, no problem.

I have a microadenoma which has caused diabetes insipidus. I'm sorry you're going through this, it's incredibly draining.

I honestly don't know how I managed before I was prescribed desmopressin. For me, it's an amazing drug.

Just a quick update. I had my test on Tuesday and received a diagnosis of diabetes insipidus. Fortunately they stopped the test after 3.5 hours as results were apparently quite conclusive and I was feeling unbelievably rough. I had an agonising wait (the longest 20 mins ever!) whilst they attempted to extract a shot of desmopressin from the hospital pharmacy which was then followed by a mug of lukewarm tap water which was quite possibly the best drink I have ever had .

Had a full night's sleep on Tues night but could not get over quite how much better I felt overall until the shot wore off yesterday (meds were out of stock, so collecting tomorrow). Who would have thought being thirsty/needing the loo would have such an impact. It really reminded me of that stage when you've had a run of non-sleeping children and then get a couple of nights' sleep and realise quite how dreadful you've been feeling!

Thanks again for your support.

@poppym12 I'm pleased to hear it has made such a difference to you and am very much looking forward to collecting my prescription! The strangest thing was going shopping yesterday morning and not being fixated on the juice aisle!

Can I just ask re your microadenoma? I have been told that there is some sort of lesion in/around the pituitary gland, although doctor thinks more likely to be a craniophrangioma. Is yours monitored or have you had any other treatment?

Appreciate it's personal information, so quite understand if you don't wish to reply openly or would rather DM.

Thanks again for taking the time to reply.

I'll PM you later, if that's ok? Everything crossed for the desmopressin.

This has just popped up on my active and as soon as I read it I was like DIABETES INSIPUDUS!!
Because I have it.
It's very rare and no one in my life new what it was and were like, oh is it type 2??!!
Anyway, just wanted to reach out and say any questions, ask away. Mine is idiopathic (no known cause)

There don't seem to be many of us around @Highflow! I've even had trouble explaining to some medical professionals that it's nothing at all to do with sugar as that's mellitus. Maybe they need to improve their Latin.

And don't get me started with life insurance .

Thanks, as ever, for your replies! It was very noticeable that none of the GPs I saw, not even the massively helpful one, had any idea what it could be once we'd ruled out T1 or T2 diabetes or high calcium levels.

Whilst very sympathetic towards you both, I am very pleased to learn there are a few more of us out there!

Should be able to collect Desmo tomorrow morning which I am very much looking forward to after having to plan my journey to work today via multiple loos!

And, @Highflow, I may take you up on that! It's things like insurance, as @poppym12 mentioned, plus what I should advise work,
ongoing prescription charges etc.

Hoping my juice/soft drink expenditure reduces too!

It’s a long term condition so you are automatically eligible for free prescriptions. I think I downloaded the form from online then take to GP surgery to sign off. It was a very quick process, I had my card within the month