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*erica* 04-29-2009 12:46 PM

I have extreme thirst all of the time, I have to have something to drink constantly or I feel ill. This has been going on for about 2+ years. I was tested for diabetes before I was diagnosed with lupus and the tests were negative. My rheumy won't look into it further and says it's nothing. This may not be lupus related but I'm not sure where to post. Has anyone ever experienced this or have any ideas of what could be causing this? I appreciate any responses, have a great day :)

goldenwings 04-30-2009 05:47 AM

Re: question
Hiya Erica,

I have the same thing going on. Does the dryness only affect your mouth? I ask because a number of years ago diagnosed with Sjogrens Syndrome. I personally find articificial saliva works for me. A lot of the time if I have not got the preparation, I do tend to devour - literally - iced lollipops which I find better than drinking lots of water.

The thing with Sjogrens though is that it doesn't only affect your mouth, it affects other parts of your body. The other 'main' one being your eyes. Here is a brief overview of it - I hope I have made it clear to understand :-

It is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Although the hallmark symptoms are dry eyes and dry mouth, Sjogrens may also cause dysfunction of other organs. Extreme fatigue and joint pain can also be experienced.

About half of the time Sjogrens syndrome occurs alone, and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma. When Sjogrens occurs alone, it is referred to as 'primary Sjogrens'. When it occurs with another connective tissue disease, it is referred to as 'secondary Sjogrens'.
So it is not because a person has lupus that they can develop Sjogrens. As previously said, it can occur without any autoimmune problems.

I'm sorry to say but your rheumie seems a bit dismissive to say it is nothing. If the 'dryness' is affecting you in other ways, then a few simple tests would be all that was needed to confirm or discount Sjogrens.

If you need any more help on this, plese let me know.

goldenwings :angel:

*erica* 04-30-2009 12:55 PM

Re: question
Hi goldenwings,
Thankyou so much for the reply. It doesn't really affect my mouth, I never have I guess what you would call dry mouth, it's more of just a general feeling that if I don't get something to drink I'm going to faint. My eyes are never dry. I get overheated and dehydrated very easily but the winter doesn't make my thirst any different. It's odd, even if I take a hot shower I get flushed and faint and need water immediately. I agree with you, my rheumy is rather dismissive. His practice is very busy and it makes you feel more like a number than a human being. I wanted to switch rheumy's but the lupus foundation says he's the best in my area and many of the local chapter members see him and say he's great. Sadly, I haven't seen that side of him, if it wasn't for my persistence I probably would have died and he wouldn't have seen it coming. Sorry about the rant lol but thank you so much for replying, I really appreciate it. I hope you have a nice day :)

Buzzy523 05-01-2009 05:23 PM

Re: question
Erica, Have you been diagnosed a diabetic. Extreme thirst is a symptom.

*erica* 05-01-2009 11:43 PM

Re: question
Hi Buzzy523,
I had originally thought that I was, but I had the test done before I was diagnosed with lupus and it came back negative. After that I wasn't sure what it could be that's causing this.

harka 05-02-2009 08:05 AM

Re: question
[QUOTE=ebunselmeyer;3970251]I have extreme thirst all of the time, I have to have something to drink constantly or I feel ill. This has been going on for about 2+ years. I was tested for diabetes before I was diagnosed with lupus and the tests were negative. My rheumy won't look into it further and says it's nothing. This may not be lupus related but I'm not sure where to post. Has anyone ever experienced this or have any ideas of what could be causing this? I appreciate any responses, have a great day :)
I completely agree with goldenwings, the other thing is diabetes insipidus (as opposed to the more common mellitus). If you don't drink water, you said you feel "sick"--what do you mean by that? Also, along with drinking all that water, do you find you're urinating all the time?

goldenwings 05-02-2009 08:46 AM

Re: question
Hiya Erica,

got me scratching my head on this one. "Excessive thirst may be a symptom of high blood sugar (hyperglycemia). It can be an important clue in detecting diabetes". You know this and have been told this is no the case with you, but........

I know you said you were tested before. Before your diagnosis of lupus you mean? Being this way for 2+ years as you say is something that needs to be looked at again. What is it with some of these rheumies/doctors? Are you in a position where you live to have a one off consultation with a doctor you find yourself and have the appropriate testing done? Or do you have to 'stick' with a certain practitioner?

I only ask because in the past I have had been completely dissatisfied with statements made to me by doctors and have taken things into my own hands and found someone else and had tests done - the outcome of which for me proved, on more than one occasion, to be life savers. Once I was told the pain in my side was because of my spine. Oh so wrong, it turned out I had pre-cancerous polyps in my tummy and had I not taken matters into my own hands, the specialist said he would not been talking to me 12 months from then.

I only cite this incident because it is why I personally feel so strongly about the lack of attention/caring which can be shown to us by some doctors - not all of course, just some. I always advocate that we should push ourselves and ask and ask questions and don't give up asking until we get the answers to everything we need to know.

When the general doctors/rheumies are looking into things, they are normally only going to look for something specific to what 'they' feel is wrong with you. This will put you at a disadvantage because they might miss something as they are not going to be looking for anything other than what they 'think' it might be and if they don't find the thing they set out to find, then everything else can get missed. If you get to see a specialist in just the field you feel the problem lies, then you are assured that the appropriate tests will be done.

You do seem to have a dismissive rheumatologist though. Out of the door this one would be if it was me. I do so hope this is sorted out for you soon. Take care.

goldenwings :angel:

*erica* 05-02-2009 11:53 PM

Re: question
Hi, and thank you so much for your replies :)

cgranulomatis: By sick I mean that I get extremely light headed like I'm about to faint, I go bright red, feel nauseous, I can hardly stand up, and then start to feel like I can't breathe. And yes I am urinating all the time, about three times an hour.

goldenwings: Yes, before I was diagnosed with lupus I was tested for diabetes and it was negative. You're completely right about the rheumy, he only does tests for what he feels it may be and it really doesn't matter if all my symptoms fit or not. Sometimes I feel as if he has a God complex like he is all knowing and everyone else is ignorant. Since I've been prodding him about these problems and had no progress whatsoever I am ready to see another doctor, the only problem is I have no idea what kind of specialist I should see. He obviously has been of no help in that department lol.

Again, thank you both for your replies and I hope you're having a great weekend! :)

harka 05-03-2009 07:46 AM

Re: question
Polyuria/polydipsia is a very important medical syndrome and it needs to always be investigated. Sure hyperglycemia can cause it, but many other things can cause it as well. Diabetes INSIPIDUS is a cause (which is NOT the same as diabetes mellitus) as is hypercalcemia among other things.

Have you ever been on the drug lithium in the past?

VeeJ 05-03-2009 01:27 PM

Re: question
Erica, the others who've posted have mentioned various causes for excessive thirst. To add a few more: I *think* parathyroid & adrenal problems may be possibilities, also kidney cysts. For first two, I think endocrinology would be the specialty, and nephrology for kidney issues.

Does your rheumie call for urinalysis to be done regularly for you?

And is your BP normal, high or low, do you know?

Could your med(s) have an impact?

As for flat-out urology issues: is your excessive urination accompanied by pain? Hesitation? Does your bladder really empty, or is flow seemingly diminished? Before I was Dxed with lupus, my urologist was considering doing the "knock-out" test for Interstitial Cystitis. I was quite thirsty back then, but whether from excessive urination or GI malabsorption, I don't know. Plus I sometimes formed "grit" (very tiny stones) and had some total blockages (awful). In the long run, I was lucky because my urinary problems turned out to be lupus cystitis, probably exacerbated by GI problems, which both resolved like magic with Plaquenil.

But these are just random thoughts from a dumb patient...! More to the point, I hope you can get your rheumie and/or some other specialist(s) to look into this NOW. You mentioned your age recently, and I'd HATE to think, with you clearly being extremely bright & having so many years ahead of you, that you couldn't get someone to SHOW SOME CURIOSITY and TAKE SOME ACTION. My GP ( a specialist himself) once instructed me, when he sent me out to other specialists, that however awful I felt, to DOUBLE or TRIPLE it. Be adament, he meant; don't let them dismiss you out-of-hand.

And if you were to see a specialist, and it turns out the problem isn't in that field, SO WHAT? Choosing the the "wrong" specialty can nevertheless get you ahead, by ruling one specialty out & possibly getting a pointer toward some OTHER specialty. Let us know how you're doing, OK? Good luck with this, with warm wishes to you, from Vee

*erica* 05-03-2009 04:22 PM

Re: question
Hi Vee,
Thanks for replying :) Yes, my rheumy has urinalysis done at every office visit, once a month. My bp is usually always normal, however recently it's been fairly low. Again, the rheumy said it was nothing to worry about--big suprise lol.

I don't believe my meds would have any impact, mainly because my problems haven't worsened or gotten any better since I started it. I'm currently only on meloxicam and plaquenil. My frequent urination is never accompanied by pain or hesitation. My bladder really empties, quite alot actually. Also my urine is completely clear, it looks just like water.

Thankyou again for your reply, and for the advice. I'm going to look into finding a specialist and a new rheumy while I'm at it. Have a good one :)


*erica* 05-03-2009 04:23 PM

Re: question
Hi cgranulomatis,
No, I have never been on lithium before.

harka 05-03-2009 04:49 PM

Re: question
Hey Vee and ebuns,

You're right about hyperparathyroidism causing polydipsia/polyuria--it does so by causing hypercalcemia which results in the two. Adrenal insufficiency won't really cause excessive thirst; rather, it causes people to crave salt because of chronic volume contraction (mostly in primary as opposed to secondary adrenal insufficiency). Finally, was there something specific about kidney cysts you know about that causes polyuria/dipsia? They don't directly cause either of those.

Lithium, by the way, I was asking about because it can cause a sort of nephrogenic diabetes insipidus which, in many cases, is irreversible.

There is something called the water deprivation test which you need to have to get a diagnosis ebuns...they'll do a bunch of blood/urine work along with this too. If you are still urinating like crazy after you've stopped drinking water, it suggests diabetes insipidus. If the urinating stops with administration of dDAVP, then it's central DI, and if there is no response to dDAVP, it's nephrogenic DI.

mindy1974 05-03-2009 08:35 PM

Re: question
I have had that at times. Finally I was tread about low constant anxiety symptoms, and my need to drink all the time came up as very common. I drink so much that I spend half my day peeing! It a park of my anxiety disorder, knowing that has helped my not over drink liquids.

VeeJ 05-04-2009 09:50 AM

Re: question
Ebuns & cgran (I like these new nicknames)---

There's something (from waaaaay out in left field) called medullary cystic kidney disease (MCKD), which, when bad, can cause extreme symptoms (major vomiting, etc.), I'd imagine. (Only said that because I have a friend who had *some* kidney cysts---miserable stuff.)

I think our "patient's minds" went to the best-known & common causes, like diabetes, etc. I bet the awful thing is that a HUGE number of less-known causes are probably possible---rather like the # of things that can cause a temperature, meaning a WHOLE LOT.

Ebuns, did you say whether you have a chronically dry mouth? During my flares, I have that, I suspect due to my being an "anti-Ro" patient, where dry mouth is common. (Anti-Ro is seen in lupus &/or Sjogren's syndrome, I think.)

Ebuns, from my own history of urinary frequency/urgency, I know it's worrisome, plus it impacts your daily activities. Personally I started with a urologist, but after kicking problem around with my GP. Do you even have a GP? If you do, maybe GP can suggest a logical choice as to which specialty you try first? Hang in there & keep us posted, OK? Sending you my best wishes, Vee

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