Dehydration, Dry Mouth & Eyes & Dry Everything

1

I wanted to see if you guys had anything thoughts on what could be causing me to be dried out. And yes, I did see a doctor – yesterday was my third visit with him & he told me he couldn’t do anything to help and good luck figuring it out.

It started with a dry mouth about 2 years ago around when my thyroid went kaput. I read that is common with Hashimotos. I also read about Sjogren’s, but at the time, nothing else fit. I never made the connection, but my BUN levels have also been elevated the last 2 years – I don’t have kidney issues so that is a sign of dehydration. In Oct, I started having severe fatigue. In April, my eyes started getting really dry so I started reading up on Sjogren’s and this time, more things really pointed towards that being the cause. I made an appointment with a rheumatologist to get tested for that.

I found a rheumatologist that was supposed to be good with Sjogren’s and saw him in June. He did blood work and that came back negative. From what I have read, only about 40% test positive and people with other autoimmune problems will test negative. I saw him a 2nd time at the end of June. He didn’t seem too thrilled about scheduling a lip biopsy, but referred me to an ENT to have one done. I had that in July and the ENT called several days later to tell me that was negative. I have since learned that they should take at least 4 glands and I “think” the ENT only took 2 of mine. I need to get a copy of that report yet to verify that.

I saw the rheumatologist for the 3rd and final time yesterday when he told me there was nothing he could do. He kept insisting it was probably diabetes causing the problems. I told him that I am pretty active in the DOC and have not seen anyone saying that unless their BS is high. Other than an A1c in Feb of 6.1, mine have all been in the 5s the last 3 years. I test my BS 18 times a day. I eat about 60 grams of carbs. I know it is not my BS.

I had to wait awhile to get in with my eye doctor & just saw him today (eyes are still dilated so pardon all the typos!). They did the Schirmer test and my eyes are really dry. I was really tired and forgot to ask the number, but there was one little blue bar at the end of the paper and the tech said the whole thing should be blue. My eye doctor said that just because I tested negative for Sjogren’s doesn’t mean I don’t have it. He said that the only thing that tells me is that I tested negative for it. He said it could also be some other kind of immune response. He gave me some Restasis and I am to see him again in about 3 months. He said it will take awhile for the Restasis to actually feel like it is helping so not to give up thinking that it isn’t working.

Besides the elevated BUN, dry mouth & dry eyes, my skin and hair is super dry. I started drinking some Gatorade that has 7 grams of carbs in once a day to try and help. I can’t put enough moisture on my skin to make it feel OK. I know my thyroid is at optimal levels so that is not causing it. I spend very little tine outside and 99.99% of my day is spent in AC.

I don’t know if I should try to get an appointment with another rheumatologist and see where that goes. I have read that it can take up to 6 ½ years to get a Sjogren’s diagnosis. I am not sure what other things can cause all this so I don’t know what other kind of doctor I should try and get in with.

2

Sounds like you already got treatment for dry eyes from the eye doc. What I read said the only other treatment for Sjogren’s would be prescription meds for dry mouth with immunosuppressive medication only given if serious internal organ damage is happening.

Do you think your PCP would prescribe the meds for dry mouth? Then at least you are getting the treatments recommended while you further work up if Sjogren’s is really the cause.

Besides knowing for knowing sake is there any other reason to have the actual Dx of Sjogren’s? I am the kind of person who needs to have a correct name put on any malady I have so I would push too but just wondering if you have read something that would suggest having it as an actual Dx would be helpful?

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The rheumatologist did give me a script for Evoxac, which is for the dry mouth. He said yesterday just to ask my PCP to prescribe it for me in the future. I am sure my PCP will do it. If not, the doctor I see for my foot would help me out - he is willing to help in a pinch if i need it.

I don’t need an actual diagnosis if I can get treatment for something. The fatigue is unbearable and that is a big part of this also. The dehydration itself could be causing that too. It isn’t just my eyes and mouth but internal stuff also so I need to do something about that.

I do know from reading a Sjogrens board, the current treatment is actually to use Plaquinel (not sure of the spelling) which is mostly used for malaria.

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Forgot to say thank you MossDog!

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Interesting. So do you suspect any organ damage at this point? Do they usually just do screening labs to see if this is happening or not? Do know if it is ACTUAL dehydration with Sjogren’s? I guess my question is if you increase your water intake will it help?

I am always fascinated to learn about something new!

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I am having some bladder problems that I do think are being caused by the dehydration. That is the only one I suspect so far. I have not been officially tested yet, but they think I have Interstitial cystitis.

I did read one paper that said actual dryness but most of the stuff out there does not state that. One other thing that I forgot to mention, I have had low white blood cells off & on. When I originally Googled that, I did not find much other than cancer, which I think I can be pretty sure i don’t have. When I started looking specifically at Sjogren’s, I did find that is another one of the things that goes with Sjogrens.

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I had very dry & scratchy eyes a few years back, for other reasons I started taking fish oil supplements, & my eyes improved over time. I asked the eye doc about this & she said yes, fish oil would help dry eyes.

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Have a you tried a humidifier to counteract the dry skin? I know it would only be helping with one symptom, but maybe it’s a start. Also, AC pulls moisture out of the air, so it might be contributing to the problem. You can buy a cheap humidifier for around $30-40. I use one in the winter when my skin really dries out. I’ve found that the ones that warm the water vapor are more effective than the ones that don’t. Also, I think you can by Rx moisturizers … maybe see a dermatologist?

Diabetes can cause dry eyes, dry skin, and fatigue. Here is a link to an article about Dry Eye Disease on DLife: http://www.dlife.com/diabetes/complications/eye-care/chous_sept2006

I hope you find some answers soon!

9

Are you on any other medications other than insulin? Some medications can make you really dry. Check the leaflets in any of your other medications and see if they come up with dry mouth etc.



I am not a doctor and of course I cannot diagnose. My first thought would have been diabetes, but since you are doing well in your control, obviously it is not. My second thought was Sjorgens. But it looks as though that has been ruled out too. I do not know what BUN levels are.



Have a chat with your dentist - for the mouth part he will certainly be helpful. Could be salivary gland problems, though I am not sure if this would have anything to do with the eyes and skin and hair.



Have you had your hormones checked? Cannot telll from your pic whether you are male or female but certainly ladies of a certain stage in their lives can be affected by hormones. Maybe men can too. I do not know.



All I can say otherwise is, keep trying to find a doctor who might be able to throw some light on the cause and possible solution. Sorry I cannot be of further help.

I have dry eye syndrome - was experiencing a lot of pain in my eyes when moving them and the optician took a swab and said that they were too dry (despite the constant running!) and told me to keep using artificial tears. I do this now when I get pain and the gritty feeling. I also had to have stronger glasses - in less than 6 months! But that does not solve the other problems.

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Thanks Annabella. I actually do take fish oil, but maybe I should increase my dose of it some.

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Thanks Nici. I don’t have a humidifier, but I guess I better get one. I will look for one with the water vapor. I was actually thinking I should see a dermatologist, so I guess I better find one!

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Thanks Alan! I knew the bladder was but did not realize that the dehydration was. I knew that you guys would come up with the answers for me!

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I forgot that I do have problems with autonomic neuropathy that does affect the pupils of my eyes. I didn’t realize that the dry eyes could be caused by that. I actually started a discussion a week or so ago about autonomic neuropathy so I am going to link this thread to that one. You guys are great!

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Thanks Latvianchick! There is one medicine that I take that could cause dehyration but I have been taking it for about 10 years so I don’t think that is the cause (although anything is possible I guess!).

BUN is Blood Urea Nitrogen. When I did the lip biopsy for the Sjogren’s, they did take the salivary glands to examine so that should have been ruled out as a problem. I still need to get the copy of that report though to see exactly what it says.

I am female and haven’t had my hormones checked – I have actually asked several doctors but they have not done the right tests. I am 52 so at the age that those need to be tested.

I was using the over the counter artificial tears. I didn’t think they were helping but my eye doctor said even if you don’t think they are, they really are. He said it might be necessary to use them every hour. He did give me a prescritption for something to help me start producing more of my own, so we will see how that works.

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Ooooh yes! Definitely the right age! I had a problem with a very early menopause - at 32 and there was no way i could persuade them that I was menopausal - simply because of my age! Turns out I was. They also diagnosed me as Type 2 after 10 years of symptoms because of my age! Turns out I was type 1 all along! Ridiculous that they either make presumptions because of age or not.

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If it was just the dry eyes, I probably wouldn’t think twice about it - it is everything else being dry. My mother has very dry eyes and does drops every hour.

My doctor wanted to try the Restasis first and if that is not helping, then try the tear duct plugs. I am not sure I want to try those - I can’t stand the thought of anything being in my eyes like that. Call me chicken! I never had problems with dryness, other than my feet. Even after I had my cataract surgery 3 years ago, he told me my eyes would probably be dry for awhile & they weren’t.

I only used the pump for 8 months so I don’t think that could be a part of it. I used Levemir before going on the pump & went back to it went I got off. I wasn’t doing as low carb as I am now, but that was till low compared to most people - about 90 grams a day. Before the 90, it was 115, so the lower carb has been for probably 10 years! Yes to the menopause - that is what Latvianchick asked also. I will have to get my hormones checked.

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I read that early menopause is common with diabetes but that was the one thing that I didn’t get hit with! They shouldn’t base stuff on age. I have a friend in her 20s and having problem getting her hormones checked because she is “too young” to have problems. If someone has a problem, they have a problem.

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As far as menopause goes…{been there, done that, all ‘done’ at age 48}…a ‘hot flash’ is really just a short, private vacation to the tropics!

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Hi Kelly:

As far as the fatigue goes, have you had your Vitamin D level checked recently? I was severely deficient and needed a prescription to get me to a normal level. Now I just take 2 D supplements daily. One of the symptons was extreme fatigue.

Sue

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Vareena, I started the Restasis in Aug and just saw my eye doctor last week. He had told me that it takes about 2 months for the Restasis to really kick in. I didn't ask the number on the Schirmer test in Aug but only had one little blue bar at the end. My eyes were bone dry last week so they were even dryer than they were in Aug. I can't really say that the Restasis is helping but he wanted me to stay on it for awhile longer. My eyes are also really burning and very sensitive to the light. He told me that Restasis is not enough by itself and I need to continue using OTC drops. Fortunately I just have a small copay for the Restasis, but the OTC drops are killing me money wise. I haven't noticed any change in my BS - I am someone that tests 18 times a day so would notice if something was off.

I hope you post back what your endo says!