Anyone ever been to a nephrologist?

[greatcook]

Hey all:

As you may remember-I had hypolekia several months ago (abnormally low potassium levels) and unfortunately medication has not helped. I'm going to be seeing a specialist (for my kidneys) and am not sure if anyone has had any experience with them.

Must admit I'm a little concerned-since they think my body is not absorbing potassium. Diet and health are in tip top shape too-just so strange.

Appreciate your thoughts!

[Pony]

Hi there.

I've never been to one, but I work with them :D . I am a dietitian at a dialysis center and work very closely with the nephrologists. All the docs I have worked w/ have been great. Just make sure you ask questions and get them answered, just like if you were going ot any doctor. I am not sure where you live, but I know nephrologists in Chicago and Northern VA in case you need a recommendation.

Good luck.

Michelle

editting here, b/c as I reread your post, it looks like you have already been to one? or was it your primary care doctor that did the hypokalemia work up?

[greatcook]

thanks pony-I've been referred to a good one from my family doc. I've read that diuretics and eating disorders (neither of which relates to my situation) can be the cause. I guess I'm just really nervous in a way that something could be wrong. I mean I'm a healthy gal-kidney problems shouldn't be happening, right?

[Pony]

I'm glad you are comfortable with the doctor. I understand your concerns. I usually work w/ people experiencing the opposite, hyperkalemia.

Sorry, might get a bit personal :D Do you urinate a lot or experience diarrhea? Those are two other causes of hypokalemia. I'm assuming you were compliant with taking the potassium supplements? Did they discuss your blood pressure with you? Have you been trying to eat foods high in K+? Bananas, Tomatoes, OJ, Potatoes, Avocado, etc?

Not an expert here :), but just trying to come up with some things that I'm familiar with.

Good luck at the doctors!
Michelle

[Beth]

I haven't been to a nephrologist, but the fainting episode I had last year was apparently caused by low potassium. My low level was thought to be caused by a virus in the prior week, because it went right back up when they gave me supplements.

Just wanted to offer my concern and support. It can be a scary thing (my fainting was behind the wheel on a highway -- only some saplings died to keep me safe, but could have been so much worse). From all I was told, low potassium is very uncommon and most often attributed to heavy water loss (athletes and outdoor workers sweating a lot) and dieting (with or without diuretics). Matters are made worse if you drink a lot of water but don't get the soduim replaced. I drink a lot of water, so I wondered if that made my situation worse.

Hope you soon have an answer, and do take care until you do.

[yorkshirepud]

Pony/greatcook,

Would you elaborate a little on these conditions. I am currently undergoing tests for some recent health issues. I have/had an eating disorder (both anorexia/bulimia) and am worried I may have caused some damage. I also abused diuretics/laxatives, both as a late teen and a few years ago (though not the diuretics).

I was at the doctors recently due to passing twice within 5 minutes (the second time falling down stairs). When I went to the doctor she noted that my blood pressure dropped when stood up. She did blood work and ordered an ECG. I haven't heard anything back regarding the results so I'm assuming nothing was out of the ordinary (though I got back Sept 2nd for a recheck).

I pee an awful lot (i.e. probably every 30 minutes), I also get occasional 'twinging' in my heart and sometimes my kidney area aches. I am also very fatigued.

TIA.
Adele

[yorkshirepud]

Oh, and I should add that I'm constantly thirsty. Quite often I never feel hydrated.

In fact, my doc mentioned that usually when your BP drops when stood, it's mean dehydration. I explained that the day I actually passed out I have drank lots and lots of water and could never quench my thirst.

[Pony]

Hi Adele.

Oh I wish I could help you more and offer more advice. I do not have experience with eating disorders and how it effects your body after recovery. How long has it been since you experienced a bulimic/anorexic episode? When you went to the doctors was your potassium low like greatcook? If you are still vomitting or not eating then your body is not getting the electrolytes it needs to sustain and one of the first things you see is a drop in potassium as well as some other electrolytes. Potassium effects your muscles especially your heart, so your comment about your heart "twinging" sounds consistent w/ potassium and other electrolyte issues.

How are you blood sugar levels? Some of the symptons sound also like blood sugar control issues. Was this discussed?

I'm glad you are seeing a doctor and I really wish I could help you more but like I said, my experience is working w/ dialysis patients. Keep me updated and keep asking questions, I will see what I can do to help or find info out for you..

Michelle

[yorkshirepud]

Thanks Michelle,

My doctor didn't inform me of what tests she was going to run on my blood work so I'm not sure about the potassium levels. Same is true of my blood sugar levels. I don't know.

As fair as vomiting, when it came to my bulimia, I had the form where you purged on excessive working work, not vomiting.

I'm still battling with my ED and only eat 1 main meal a day as a rule, though I do tend to snack at night on occasion (habit from my bulimia binging days). So, I can't say I'm over it.

I plan to discuss this disorder with my doctor just in case she hasn't considered it. I did run a web search and was shocked to discover I could pretty much cross off every sympton relating to it.


greatcook, my apologies of hijacking your thread, but I do thank you for bringing this disorder to my attention. It would be such a relief to put a name to something as I constantly experience symptons that never get diagnosed.

[Schmee]

My friend just became an RN and her first job is in the nephrology ward at a hospital. I will ask her for any advice and info.
Good luck with your doctor.

[Pony]

Adele....

I'm glad you have a plan down for eating. Any type of plan is so helpful w/ ED's. I was going to suggest a websearch as well. Your symptoms definitely sound like they are due to loss of nutrients or low blood pressure issues resulting from the ED. It is such a horrible disease and I have known many many people who have had health issues from ED and know a lot of people who have successfully overcome it as well.

As fair as vomiting, when it came to my bulimia, I had the form where you purged on excessive working work, not vomiting.

I think you mean you purged w/ working out, exercise. So, w/ excessive working out and using laxatives/diuretics, your body was probably in a state of malnutrition for quite some time leading to some of the things you are dealing with now.

I plan to discuss this disorder with my doctor just in case she hasn't considered it

So does your doctor not know about your ED? I think that is what you are saying? If she doesn't I would HIGHLY recommend you mentioning that, b/c it will probably help clear up some things for her. I sure hope all goes well at the doctors and I'm so glad you are open and honest about your ED. That is soooo very difficult to do and is such a healthy step for you in this long healing process. Even when you get over just some of it, like you aren't purging w/ exercise and you are focusing on one meal and snacks, it is such a nice sense of freedom one feels when they begin to overcome their ED. I am sure you have felt that.

Anyways, keep me posted!!!

[yorkshirepud]

Michelle,

I'm sorry. I think I've confused you a little. Yes, my doctor does know of my eating disorder. This all started back a few years ago so I went through the treatment at a clinic (though didn't finish it).

[Pony]

Got it. :D

Again, feel free to PM me if you want to ask me anything when you get back from the doctors.

Take care!
michelle

[cher48603]

Greatcook,

My daughter has had the same problem.

Low potassium can be caused by a tumor on the adrenal gland. Kidney problems tend to cause high potassium levels.

If your nephrologist doesn't find anything, an endocrinologist might be the way to go.

PM me if you have any questions.

[lisalee]

Greatcook,
I see a nephrologist every three months due to a kidney transplant and have seen one for 17 years. My only advice is to make sure you get all your questions answered and nag them if you don't thik you have. My potassium level is low, but I'm working on it by eating high potassium foods and if I have to take potassium pills (they are horse pill size!) Often the nurses in the office are great resources and will talk to you more than the doctors.

Good luck and let us know how you are doing.

Lisa

[mbrogier]

I have had low potassium, but it always showed up in me as horrendous leg cramps. I would take potassium pills and that would alleviate the pain. This thread has cleared up something for me...at the time of the leg cramps, I had undiagnosed Interstitial Cystitis. I was peeing every 30 minutes all day. I drank lots of fluids, but obviously my levels were off. Once I was diagnosed and treated, everything got much better. My disease does not affect my kidneys, but I was warned to be careful with low-carb diets. The extra protein that my kidneys would deal with could damage them. That would be a question I would have for a nephrologist...how diet affects my kidneys. I also drink lots of water and eat extra salt because of low blood pressure. I thought salt was evil, so I was not eating a normal amount, and it turned out I needed extra. I've not needed a nephrologist, but I learned a lot on this thread. I will tell you from personal experience that the best doctors I have had were at University medical centers. They seem to be on the cutting edge of research.

[greatcook]

hey gals-your advice and thoughts are greatly appreciated:)

I got diagnosis today that I have a very rare disorder called-Gitelman's Syndrome. It is a rare inherited defect in the renal tubule of the kidneys. This defect causes the kidney to waste magnesium, sodium, potassium and chloride in the urine, instead of reabsorbing it back into the bloodstream. This syndrome does not cause kidney failure nor does it cause the kidneys to function abnormally. The kidneys are normal. The problem is the reabsorption of important electrolytes and minerals.

So-good and bad-it's something that is treatable-but I will also need to pay close attention to it across the next 3 months in particular until they get me back up to speed. I'll also be seeing an endocrinologist because my cortisol levels are WAY high.

The doc is great-and was very knowledgable and gave me a very good prognosis as long as I take care of myself.

Thanks again for all your support-I'm definitely not out of the clear-but feel much better knowing why I've been feeling this way.

[mbrogier]

I'm glad the doctor found the problem and that it can be treated. I hope you feel better soon.