Kidney Disorders Community

Hi Beth,

I'm so sorry that you have to deal with this balancing act of a syndrome. I found your post when I was doing a google search to see if there was any updated info on Gitelman's. I have been living with this for about 10 years now and have used both amiloride and spironolactone as treatments at one point or another. I remember when I was on amiloride I would feel really tired and down and realized that I was becoming hyponatremic-I was losing too much salt and not compensating for the loss in my diet. This is where it gets really complicated because as you know sodium can make you lose potassium-our most precious and needed ingredient but amiloride and spironolactone are already at work to save it and they are both diuretics so they are making you lose more salt. I would discuss with your doctor a supplementation plan to comp for those salt losses-you don't want to do it yourself or you might overdo the salt and the potassium & magnesium will be lost. I found that as soon as I added some salt into my diet I felt like my old self again. There is a wonderful website that addresses gitelmans: barttersite.org and a really great yahoo support group if you haven't come across them: You can find them on that site. Whenever I get down about this syndrome I just remind myself that maybe us gitel"women" are just mermaids who have to survive on land...because really if we lived in the ocean our cells would be balanced naturally by all of the beautifully balanced ocean salt water. It's a way for me to turn something sad into something magical and it will make your kids think that their mom is even more special.

Feel better mermaid and good luck to you.

hi ive also been diagnosed with gitelman,s syndrome about two months ago after having symptoms from the age of 21 after the birth of my first child. ive been in and out of hospital for years with severe low levels of potassium and calicum . i,ve had operations cancelled because my potassium was so low i was told my heart might have stopped on the operating table resulting in my huge fear of any procedures.i to get very tired and get very bad pins and needles from my head to my toes and they could last for hours .the medication i am currently taking is slow k 8 a day for the potassium and alpha d for my low calcium but nothing for my low magnasium.i to hate having this condition finding out a real name for what ive had for nearly 15 years is good but it does not seem to be making me feel any better cause im still waiting on the kidney specialist giving me an appointment to explain more about this condition. lynz

Hello Beth: Let me start by stating that I have normal potassium. It's my wife Laura who has had the problem for several years now, starting in 1980, then ok until 2005. At that time, she was hospitalized for 53 days during Oct-Dec. Then, her problem with hypokalemia disappeared and only this year did it return. In May of 2009, she was hospitalized with a potassium blood level of 1.8. This, as you probably know, is dangerously low. It is now the 3rd week of August and she is still receiving treatment. She is being treated on an out-patient basis twice a week and on those days, she receives infusions of potassium. These infusions usually take about 8 hrs of her day, but is much more convenient that staying in the hospital for 3-4 days a week. Laura has a very good kidney specialist and hopefully she (lady doctor) will resolve our problem soon. Good luck with your health and please keep in touch. Laura is reading over my shoulder as I type this and she would like to hear back from you. Thanks/bill

hello Beth....

I am a 30 year old female diagnosed with Gitelman's syndrome a few years ago. I have the same symptoms and deal with the same challenges you do in daily life. I keep strong and take it one day at a time. I have 2 kids also. I took 5 years off work and I just recently started working again this week. its going to be tough after 5 years but I am determined to give it a try. I work in the medical field as a medical assistant. I never came across a person with the same condition I have. it would be great to keep contact with you and not feel so alone. I see you have been recently diagnosed. it is really tough in the beginning but you will learn to accept and live life with these challenges. I still have a hard time dealing with being different than others but things are alot better for me now that its been a years since being diagnosed. I currently take more than 30 pills daily, 23 of them being potasium. I take 23 potasium pills (20 meq's) each. resulting in a total of 460 meq's a day. did you know that in the death penalty they use 100meq's to stop a persons heart before being put to death. well I guess that wouldn't work on us huh lol. I also take magnesium daily and spirinolactone which is a potasium sparing diuretic. I take altace for blood pressure, multivitamins, and even reglan to help me eat. well if its any comfort you can feel free to email me at cfeeder79@aol.com whenever you would like or just to ask questions being that I have had this condition longer. I would love to help you get through this. I don't often come on this site so I would prefer you email me. you know , I used to think I was losing my mind with all the confusion I was having , but then I learned that it was part of gitelman's. it is a life changing experience, for everyone not just yourself. my family has come to learn alot about Gitelman's just to understand me better. it is important to have support from friends and family. it helps a great deal. and even though we do not know eachother I am here to offer you my support. by the way .... have you ever had potasium given intravenous with an IV....isnt it painful. the first time I got it intravenous the didn't dilute it with saline and I cried and cried until I couldn't take it and disconnected my own IV, i am a nurse so i know how to lol. well please write back to me. i would love to hear how you are doing. what doses of the meds do you take ? and how often ?

Hi, My name is Lucinda! I am also a sufferer from Gitelmans., since i was 4 yrs old. I am now 23yrs. Like the above- similar experiences as stated above. Just worried now about bearing child?? Anyone had trouble having their own which is linked to Gitelmans?

Any way... Just letting you know- your not alone. Oh i currently on 48 tablets per day! Anyone else taking this exterme amount?

Nice to hear from someone-

hi i'm lyndsay i'm 28 yrs old and have had gitelmans synrome for a year and a half. I have been in and out of hospital over this time getting infusions i take amiloride daily at the max dose i can. I am now pregnant! about 14 weeks baby looks and seems normal so far and i am feeling well potassium has stabilised at abou 2.3 which is really high for me!

good luck

x

hey, my name is Roya and I am 22 years old. My doctor's discovered I had gitelman's syndrome last year when I was 6 months pregnant with my son. I was taking a blood test and my OB happened to look at my electrolyte levels and saw my potassium and magnesium were extremely low. She immediately called me and had be hospitalized for 4 days on IVs. Not fun at all. After I was released from the hospital I started taking 15 pills a day, which increased to 22 pills as my due date got closer. Every week I would go in and have my blood drawn for them to check my levels, and the doctor would either increase my dose or keep it the same. Other my son was born, I was able to decrease by pill intake to 14 a day, getting periodic checkups with a kidney specialist.

If I think back I did used to be tired a lot and get that pins and needles feeling from head to toe, but I just thought it was all normal and nothing to worry about. I am so thankful for my pregnancy because it made me discover I have this condition.

I would like to have a second child but am trying to lose a bit more weight because I find that the smaller I am, the less pills my body needs. I just have to except I will be taking pills for the rest of my life.

Does anyone know if the condition gets worse with age?

Roya

Hey Beth ,

about a year ago i was diagnosed with the same thing and almost all the symptoms you have .I found drinking gatorade has help a little and the whole tired thing when you figuer out a solution let me know i have to take at least at 2-3 hour nap everyday .It kinda takes up alot of time .As for the meds you r on i am on all thats pluse mag. potaassium tabs and and a few other (max dose) i found a doctor at UNC that i am going to go see about this becase my nerphologist said he could do nothing else for me my levels stay between 2.1 3.5 i have been to the hosptial a number of times . Potassuim I.V. hurt like crap i know you can relate .well i hope to hear more from you now i dont feel so alone in this thanks.

I have been suffering with various systoms since 2005 when I was admitted to the hospital for low potassium and have had several other episodes. I was refer to see a fourth Nephrologist at Johns Hopkins hospital in Baltimore who ran several exam and then explained that I have Gitleman Syndrome. I am now in shock to know that I have to continue to take pills for the rest of my life. I am now taking 38 pills daily and it seems like they continue to add more each time. No one understands when you say every day that you feel like crap. My limb feel like they are falling off daily and I sometimes wonder if I am really feeling this bad or is it my mind playing tricks on me. I really appreciated reading each story so I know I am not in this all by myself.

I have been suffering with various systoms since 2005 when I was admitted to the hospital for low potassium and have had several other episodes. I was refer to see a fourth Nephrologist at Johns Hopkins hospital in Baltimore who ran several exam and then explained that I have Gitleman Syndrome. I am now in shock to know that I have to continue to take pills for the rest of my life. I am now taking 38 pills daily and it seems like they continue to add more each time. No one understands when you say every day that you feel like crap. My limb feel like they are falling off daily and I sometimes wonder if I am really feeling this bad or is it my mind playing tricks on me. I really appreciated reading each story so I know I am not in this all by myself.

I have gitleman syndrome I have been diagnosed now for almost a year. Yes, it is a daily challenge to get up everyday and yes your family does suffer. I just try to say a am going to do a certain task and try to complete it to the best of my ability. My disease is bad I actually became paralyized from the disease before we found out what it was. I now do have function in my legs, but it is still really hard. I was on Amiloride and spironolactone with no luck I now take high dose potassium and magnesium levels and still require to go to the hospital about every 2 weeks for Iv potassium. So, I know how you feel with this disease. It first showed up when I was 16 we fought to find a diagnosis until I was 20. I am now 21.

I am coming late to this discussion, but so happy to find others with Gitelman's. I take 240MEQ of potassium, 2000MG magnesium, 15MG amiloride and am on the high sodium diet.

Having Gitelman's for 15 years...I thought I knew all there was to know, but reading here about the fogginess and confusion. I thought I just lost brain cells...especially from my pregnancy!

I just ran across these posts when I googled Gitelman's and Pregnancy. My 21 year old daughter was diagnosed with Gitelman's two weeks ago. We had known her potassium levels were 2.8 for about 5 months and couldn't get them to rise with potassium supplements. They then determined her magnesium was low as well. She started the Slow-Mag, but made her legs feel weird so she stopped taking it. She had been going in for blood work quite often, when they called the day after a test and told her to go to the hospital for an iv. They said her potassium was 2.6, but when she got to the hospital it was 2.3. I think her magnesium was 1.3. The Nephrologists diagnosed her with Gitelman's. She is the first person diagnosed with this syndrome at this hospital. They prescribed 120 meq/day of KDur, 240mg/day Magnesium-Oxide, and 5mg/day of Amiloride HCL (13 pills a day). She called the doctor's office one morning because she was having a racing heart the night before. The nurse told her to go on a low-sodium diet. (This worries me now because I see alot of posts say that they are on high-sodium diets!)

I have read that you can't breast feed while taking Amiloride which isn't too disappointing, but has anyone had any problems becoming pregnant, going to term, delivery, etc.? We are going to the Nephrology Clinic in about a week, so I will be asking a lot of questions then. I was just curious as to what to expect that I might hear. I don't want to get upset in front of my daughter if it's bad news.

Would love to hear from anyone that has information that might help me!

Thank you!
Debbie