I asked how long you slept because your thyroid function could be off and sleeping 12 hours or longer sounds like it could be your thyroid. I don't think this could be causing all of your other problems, but maybe it could be something to ask when you get all of your tests back.
I sure hope you find out soon hun Keep posting and letting us know.
Chantel
Hey Chantel. I do seem to sleep a lot, but I don't want to overstate how much I sleep, either. In general, the length of my sleep isn't too abnormal, I don't think. I seem to sleep ok. I'm more concerned about waking up not feeling refreshed. Someone mentioned that possibly I'm being interrupted in my sleep without knowing it. I don't think that's happening, but I don't know. The only thing that really interupts my sleep is when I have to get out of bed to urinate, which is annoying, but I usually fall right back to sleep anyway. My sleeping schedule is very out of wack, though, and has been for some time.
Thanks for your concern, Chantel. Those smiley faces are oddly soothing.
I had a quick scan through the suggestions, and they all seem to give some good advice. One thing I did not pick up in any replies was the suggestion that you might suffer from diabetes. Many of your symptoms correspond well with the symptoms of Type 2 diabetes, including erectile dysfunction, frequent urination, fatigue etc.
As I haven't read all of the posts in detail, this might have come up. Your tests might have brought up some red lights in this regard as well so it might be ruled out, but in my experience tests are designed to find specific things and often ignores other signs.
So this might be a total misgrab, but it might be worth investigating.
G.
G., thanks for replying. I do seem to have a lot of the same symptoms as Type 2 diabetes. It's never been brought up, though, and I assumed it would have if there was any chance I had it. I'll investigate it. Thanks again.
Susannah, thank you very much for the suggestions. I'll keep them all in mind.
Kerry1, thank you too. About the sleeping. I just responded again to Chantel above this post. I don't want to overstate how much I sleep. I don't think the length of my sleep is too abnormal, although my sleep schedule is certainly out of whack.
I'm sorry that I haven't posted sooner and have missed some of your questions. This thread has gotten a bit "gangly" to deal with and I have definitely missed a lot of new posts despite requesting immediate email notifications.
It's my pleasure to try and help you with this and the greatest reward will be your recovery from whatever is ailing you.
Antoinette, you've been wonderful. Thank you. And you've posted plenty soon. I'm just happy you're replying. Take all the time you want.
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You would be better served by having an internist then a GP. If you're a healthy individual a GP is fine but whenever you have issues or conditions I've found internists to be more knowledgeable and much more helpful.
Ok. I was thinking of changing doctors anyway.
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If you have not been referred to a kidney specialist you should definitely see one.
I think I will definitely see a kidney specialist, because I definitely think something is wrong with how I process fluids. My only worry is that, as I said, I think my kidneys were tested, which is sort of discouraging. Is there any sort of prerequisite for seeing a kidney specialist, like actual bloodwork showing that you have a problem? Do you think he/she will wonder what I'm doing there if they ask have my kidneys been tested and I say yeah, everything came back fine, but I decided to see you anyway?
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Sadly dianostic tests are never completely conclusive. False positives and negatives are a given and there is of course human error to contend with.
So hypothetically I could have something wrong with my kidneys despite having a test that said they were ok?
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It sounds to me like you are suffering from overhydration.
Overhydration is much more common among people whose kidneys do not excrete urine normally—for example, among people with a disorder of the heart, kidneys, or liver. Overhydration may also result from syndrome of inappropriate secretion of antidiuretic hormone (SIADH). In this syndrome, the pituitary gland secretes too much antidiuretic hormone, stimulating the kidneys to conserve water.
Doctors try to distinguish between overhydration and excess blood volume. With overhydration and normal blood volume, the excess water usually moves into the cells, and tissue swelling (edema) does not occur. With overhydration and excess blood volume, an excess amount of sodium prevents the excess water from moving into the cells; instead, the excess water accumulates around the cells, resulting in edema in the chest, abdomen, and lower legs.
Since you are not complaining of any sort of edema in your body chances are your blood volume is normal.
Treatment for this condition is restriction of water to as little as 1 quart per day but this should NEVER be done without the advice and assistance of a physician. Sometimes reduction of sodium is helpful. It's a delicate balancing act. Since you know that restriciting your water intake makes you feel better this should be a HUGE clue to your doctors. If you haven't let your doctors know this yet tell them immediately.
Ok, I'll check it out. And I'll see if I have any questions.
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I'm very sorry that you had such an unpleasent experience with the second urologist. Some doctors are "pigs" as my girlfriend would say. Sadly proper bedside manner is still not stressed in med school.
Maybe I can borrow your girlfriend for moral support when I have my next doctor visit -- what do you think? Calling someone a pig doesn't have the same ring to it when a man says it. But I hope that isn't necessary.
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If you're suppose to follow-up with the 3rd urologist then do so and tell him about feeling better when you restrict your fluid intake and how poorly you feel when you don't restrict it. If he doesn't bring it up suggest the possibility of overhydration to him. Also, ask if you can be referred to a kidney specialist.
Ok. So initially you think it's better to work this thing from the trouble-processing-fluids angle by seeing a kidney specialist, as opposed to working it from the ED and hands-changing-color angle by seeing a vascular surgeon? I guess I could do both, too. I know you may not have a specific answer, since you don't know what's wrong with me, but even just your best hunch would be appreciated.
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Do a search online for overhydration so you will be familiar with the condition before you see your doctor again. In the meantime try cutting back on salting your food and high sodium foods and see if there is an improvement
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Ok.
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I'm sorry if I missed any of your questions. We might want to think about starting a fresh thread.
Keep us posted. I'm VERY curious to see what your physician will say. If the diagnosis of overhydration is correct it would explain quite a few of your other complaints.
Good luck.
Sincerely,
Antoinette
I'm not sure what the board etiquette is, but if it would be helpful for me to start another thread, I have no problem with that. Thanks again, Antoinette.
Oh yeah. One more thing. About the bloodshot eyes. I feel like maybe I put too much emphasis on that. I stressed that in the beginning because I knew my story might make people reasonably suspicious. And because the bloodshot eyes, along with the hand-changing-color thing, can actually be seen I made a point to mention that. And although my eyes do sometimes become extremely and abnormally bloodshot--and I'm not just looking for the slightest red vein in my eye so I can say "Aha, I knew I was sick!"-- they aren't always bloodshot when I'm feeling very sick. I drank too much the past couple days, for example, and today I felt really horrible but my eyes weren't bloodshot. In other words, my eyes do become extremely bloodshot and it does have something to do with how much I drink, but they don't always become extremely bloodshot when I've had too much to drink -- I don't know why though. But I do ALWAYS feel sick when I've had too much to drink. That part is consistent.
Hey Chantel. I do seem to sleep a lot, but I don't want to overstate how much I sleep, either. In general, the length of my sleep isn't too abnormal, I don't think. I seem to sleep ok. I'm more concerned about waking up not feeling refreshed. Someone mentioned that possibly I'm being interrupted in my sleep without knowing it. I don't think that's happening, but I don't know. The only thing that really interupts my sleep is when I have to get out of bed to urinate, which is annoying, but I usually fall right back to sleep anyway. My sleeping schedule is very out of wack, though, and has been for some time.
Thanks for your concern, Chantel. Those smiley faces are oddly soothing.
Hey again hun
I'm glad that I could at least make you feel better with some cute little smiles. I know what you are going through here because I went through something similiar about a year ago. I had to run so many tests and it gets exhausting at times and you just want to give up. Well, don't give up. You know how your body works and only you can tell if something is wrong. Keep trying to find out what it is k? I wish you all the luck in the world. I'm going to keep following this thread and see if you find out anything. All of these people give wonderful suggestions.
You haven't gotten anywhere approaching this problem from the ED and hand color angle so I would definitely come at it from the fluid intake issue. Personally, I would hold off on the vascular surgeon until your fluid problem is resolved.
I think if you were to explain to the urologist and / or the kidney specialist how you feel better when you drink less and how you feel significantly worse when you up your fluid intake they would explore the issue of overhydration with you. I don't know what tests they might conduct that they haven't already but since your doctors, so far, have not been made aware of these symptoms they may have misinterpreted some results or not ordered certain tests because they were deemed unnecessary.
If you're NOT dealing with an HMO, getting a referral to the kidney guy should be pretty easy. Ask your urologist or your GP. Chances are good that the urologist will refer you out since he can't really find anything wrong with you to treat. If there are any pre-requisites to see him or her that will depend a lot on the doctor. I don't think there are any hard and fast rules. They're all very happy to take your money. i don't think you'll have any problems given your symptoms.
Let your doctor know why you didn't mention these symptoms earlier if he seems skeptical in the least.
Hypothetically, there is always a chance that something is wrong with a body part despite negative test results. A lot depends on how good a particular test is at detecting a particular problem and if it was administered correctly.
Sometimes when tests don't confirm a diagnosis a physician will use common sense and go by the symptoms his patient is experiencing. It's like the old saying if it walks like a duck, sounds like a duck and looks like a duck, chances are it's a duck.
My girlfriend can be quite formidable and she definitely isn't shy about letting anyone know exactly what she thinks. Lately she's had a lot of problems with doctors so she would be more then happy to put in her two cents worth.
As far as the bloodshot eyes I would mention it to the docs just so they have all the information. It could be yet another clue for them to confirm a diagnosis.
I'm not 100% clear on the posting rules here either when it comes to starting a new thread when you have a big long one going already. You might want to start one with Overhydration. If there are others suffering from the condition that would definitely get their attention. Probably be best to post it in the kidney forum.
Take care and as always keep us posted. I'm very optimistic that you will get to the bottom of all of this.
I haven't forgotten about you, dude... it's just that there doesn't seem to be much more that we can discuss on message boards that will help you.
I DO believe it is a GREAT idea for you write down your history for the next doctor. I also think you should have a list of questions for him with you on your next visit.
I feel the only way you are going to start finding answers is to take a more aggressive approach. If a doc tells you that nothing is wrong or that he can't figure out what is going on, ask him for a referral to a specialist. If a doc won't give you a referral because he doesn't know which specialty you should next explore, KEEP TRYING and go to a different doc who WILL.
DO NOT keep any bits of information from your doc. You mentioned that you saw a urologist and didn't discuss the ED with him. Why not? If you want to find a solution, you have to present ALL THE FACTS.
I am aware that most doctor's visits last just a few minutes and that this is a huge complaint from many patients. Knowing that going in, however, gives you an edge. When you make an appointment tell the receptionist that your situation is complicated and that you will be bringing with you a list of questions and a written history for the doctor. Suggest that she schedule your appointment for a time when the doctor has some availability to have a more in-depth conversation with you. This way, it is known before you even arrive that you will need more time. If they tell you this is not possible, tell them you feel that you would prefer in that case to give your business to a physician who is willing to devote more time to you!
YOU have to follow up on these things. Docs see dozens of patients each day. You are not special to them, unfortunately. But docs sometimes enjoy a patient who is prepared and who is helpful. Your written history and list of chief complaints, along with a list of questions, just might impress a doc enough for him to take more than a cursory interest in your case.
Good advice from Scruff. Write all this stuff down and read it, point by point, to the doctor. Don't let him shoo you out the door until all points have been discussed. These days you have to be almost as educated as the doctor to successfully get results from one. Alas. But fortunately you seem very intelligent - you spell everything right - although I know it's probably very hard to think clearly when you are feeling so sick and tired. That's what lists are for!!
All of your fans here will want to know what the diagnosis is, good or bad. We're here to support you.
Everyone's been great and I appreciate all the advice. I'm still going to post the results from all my bloodwork once I get it from my doctor. Other than that, I'll probably wait to post again until I've seen another doctor and can update all of you on how things are going. But if anyone else reads this and has any more ideas or suggestions, let me know because I'll still be checking back. Thanks again everyone.
I don't know what blood work you've had but with a multi-system causing what seems to be Raynaud's a vasculitis or collagen vascular disease seems a possibility
omg bro, I think I have the exact same problem as you.... I started noticing problems when I was 16 that my libido was never existent. Unfortunately, it got worse and worse. Now, I am 20 and have no libido- I'm impotent actually!
I'm to the point where viagra doesn't work.... Like you, I had some frequent urinary problems so I asked my doctor to prescribe me some detrol... I was still 16 at the time and after that, my potency seems to have went nothing but downhill ever since.....
It's hard for me to tell if the detrol actually did this to me or the problem would've occured naturally anyways....
I'm in the world of no answers and doctors aren't helping.... Having ed at 20 is unheard of.....
I feel like the Scruffy Guy. I think you have a lot more going on than a bunch of "Physical Problems". Maybe you should seek counciling. I always heard that if you wake up in the morning with an erection, then your erectile disfunction has something more to do with whats going on in your mind as apposed to down there.
Hello everyone, in case you're still interested, I was just diagnosed with hemochromatosis.
Thanks for the update. ...Another conformation that we should trust our instincts and keep pushing for answers, when we know there's something really wrong. How was the cause of all this eventually found?
I switched doctors and she ran some blood tests on me and nothing showed up. She sent me around to some other doctors and I had some other tests performed but to no avail. At my last appointment, after she had sort of given up, she decided to test my iron levels. The results weren't normal. She had me wait a little while to be tested again and this time I was tested for hemochromatosis as well. She called the other day and said that I tested positive for hemochromatosis. I haven't seen her since I've been diagnosed, but I will soon. Yesterday I had an mri performed on my abdomen.
So glad that you finally have at least a clue here as to what may be causing your symptoms.what do they plan to do as far as treatment,or haven't you found that out yet.i do believe that my great uncle had this and it required him to donate blood quite frequently to get rid of the excess iron.Other than that,i don't know what other things they would actually be able to do for you.Please keep me posted.FB
i don't think you'll have any problems given your symptoms. 
Lately she's had a lot of problems with doctors so she would be more then happy to put in her two cents worth. 
