Liddle Syndrome

[foreverinfaith60]

I have Liddle Syndrome,and it is a very rare kidney disease. Very few Doctors know about it. It is passed through families and can be deadly, as I found out a month ago. I would like to get Docs and people to know about this. Kidney Docs usually know but I found out that most MD's don't have a clue.The hospital where I was had to Google it to find out about what I was telling them  and then they had to transfer me to a larger hospital to save my life.

[Ashnicole741]

I am so glad I found this site. I have dealt with blood pressure issues and low potassium for about 7 years now and no one has been able to give me an answer until recently. I just saw a nephrologist who is concerned that I have liddle syndrome. I'm so thankful I found him because no one has seemed to understand why I can't keep my potassium levels up even though I'm on tons of klorcon. I've done a ton of research on everything such as bartter's syndrome, Gitelman's syndrome, Cushing's syndrome, conn's syndrome, and liddle syndrome. I do believe the dr is correct about me having liddle syndrome. I am testing soon to see if I have the gene mutation for this disease. My father passed away ago 7 years ago from brain cancerand had high blood pressure when he was in his 20's even though he was thin and active. As I reflect on his younger years with blood pressure issues I recall him ending up in the ER quite a few times with blood pressure issues that no one could control. My mother has had some blood pressure issues off and on and was recently diagnosed with type two diabetes and proteinuria, blood work for her kidneys continues to decline so I'm concerned she could perhaps have this as well, however her potassium level is 4.0.
As for me, I have ended up in the ER more times than I can count with severely low potassium levels. I still can't get my potassium into the normal range even though I'm on high amounts of pottasium supplements. This have been very distressing for me because I feel exhausted all the time and I'm concerned I could end up it the ER again with chest pains or worse I could end up dead. I have to take xanex to deal with the anxiety and the dr just put me on amiloride so hopefully this will work. As for short stature, I'm only 5 foot 1 and my mother is 4 foot 10 so I'm curious if this is why I failed to grow. I am anxious to get this genetic testing behind me and move forward with a true diagnosis. It's sad that there is so little out there on this disease. I'm thankful that I came across this site and feel not as alone. I hope that we can all raise awareness about this terrible disease and hopefully make a difference in others lives that are suffering silently with these issues yet they have had no diagnosis. I will keep you posted on my results. I will keep you all in my thoughts and prayers!!! Thank you all for listening to me ramble!!

[Ginger8376]

Hi, i was diagnosed with liddle syndrome for almost 2 years now. My mother has it as well but didnt know she even had it until i was tested positive for it. Liddle syndrome is a rare desease in the kidneys caused by a mutation in one of of the genes that help keep potassiam in your sodium channel. Because of the mutiation your sodium channel dosent know when to "close" up. This means potassium is constantly running through your sodium channel because the sodium is eating away the potassium. Before i knew about the syndrome i felt very fatigue, always had migranes, would get dizzy spells constantly,i would get hot flashes and felt like i was having fevers, id always feel like i would pass out too. I never had high blood pressure though which is the result from liddle syndrome. My mom never had hypertension either until she had me and my brother and now she takes a potassium supplement and blood pressure pills, but she was on that before she even knew she had the gene. I still dont have highblood pressure so im waiting for it to happen. But i went through plenty of specialists to figure out what i had. After i tested positive for it i was told to be on a 2300 mg sodium diet a day, givin a potassium supplement and a pill called trymetrine . I dont know if thats how you spell it, but it instantly stopped my migranes. And i live a pretty normal life. I was told because the pills im taking regulate my how my kidneys function, my kidneys could possibly fail if not taken. I had to get blood drawn twice a week for quite a while, then twice a month, now i see a specialist anx get my blood drawn every sixth months. Theres still a lot i dont understand about it. Like how i havent had high blood pressure at all and that the desease has to do with hypertension. Or how my mom dosent have to take the trymetrine like me and why she never had symptoms like i did before i was tested. I feel like its so rare because a lot of people dont get tested for it because a lot of time people dont have any symptons at all or those symptoms are mistaken for other issues. Anyone with liddle syndrome does have a 50% chance of giving it to there childern though.

[scdxyf]

I always have tetany.

[scdxyf]

I am a patient from china，I agree wiht you.stunt growth

[azel13]

I was diagnosed with Liddle's in 2012. I went to the ER and was admitted for penumonia. Turned out I had blood clots in my lungs - 2 on each side. The day after that discovery, my docs noticed my potassium was very low and my GFR was 38. I had been treated for Hypertention since 2008. I've had problems with my kidneys all my life. Infections, Stones, even Uremia once when I was preg. My Mom passed away from Renal Failure after having diabetes and hypertention for over 30 yrs, but never did anyone think that the blood pressure was caused by her kidneys because it usually happens the other way around. When my docs at the hosp noticed my symptoms they called in a nephrologist, turned out to be the same one who treated my Mother! And he remembered her and me because I always took her to all her appointments. Even though she had been gone since 2002! He took one look at my chart & said, "I know what's wrong with you! Don't worry sweetie, I won't lose you like I did your Mom"!! To me, he's an angel on earth. Not only saved my life, but everyone in my family plus future generations. Turns out so far 5 others in my immediate family tested positive for Liddle's. It really is a dominant gene for us. I would also like to add that when my hypertension kicked in, I gained a ton of weight. 80 pounds in 6 months actually. I didn't change my diet or activity level. It just happened. When I would goto a doc & complain of my racing heart, shortness of breath, ect... They would say, "well you need to lose weight, then you'd feel better" I'd try to explain that I'd been average to thin most my life & I had no idea why I'd gained weight. They would just say, "well you are over 35..." So, if you are seeing a doc that blows you off like that, FIND A NEW ONE PLEASE. No matter how much of a bother it might be to do it. It's your LIFE you're trying to save. It's worth the trouble :)

[lyn1235]

I was admitted to hospital with blood pressure 270/170 and climbing. Apparently I have been.living with this syndrome undetected for years it has damaged my heart which caused water to leak to my lungs and cause breathing probs the reason I went to doctors. I have kidney problems also due to this early identification seems to be the key as it can be controlled with meds for life. I have 2 teenage kids and will be closely monitoring their BP and fingers crossed I haven't passed it. I am assured that the damage will heal with meds help and then controlled with meds from now on.a dna test can identify the mutant little bugger lol so if u think.u have it get the test other than that just get on with ur life with this rare syndrome and appreciate it more

[johnnie199164]

hey my name is johnnie and ive had it since i was 10 and im 22 now, i take amiloride, procardia, and lisinopril. ive been on amiloride since i was 15 and was recently put on procarida and lisnopril to further control it. most doctors i go to never heard of it only kidney specialist and other specialist, i have yet to meet someone has this syndrome personally and its awkward cause i sometimes feel like im the only one who has this but i kno im not.

[itsme156]

If you were diagnosed with liddle's syndrome then your doctor should have put you on Amiloride if they didn't i would check into that. One pill every day keeps my blood pressure in control. Without it, it stays at 140/110. As for the kidney infections. I've never had any. But it certainly makes me feel run down all the time, extremely tired, i also get a lot of headaches although i'm not sure if that is relevant to the Liddle's syndrome. I have heard that in some cases it's been known to stunt growth, which happened to my mother and I. She's 5' and i'm 5' 1" while her brother is 6' 4".

[22yroldfemale]

Hello, I have been diagnosed with liddle syndrome and I would like to know more about it. It seems like nobody has any answers for me regarding it. I am on tons of meds everyday mostly for the bp and I keep getting kidney infections and feeling like crap. I have to call out of work all the time and i just dont know how much more I can take..I would like someone elses input who has this disease and how it makes them feel and what the end result is...is the end result a kidney transplant or will my kidneys fail eventually because of this disease?

[reughr]

Hi

I haven't been diagnosed, but I think i might have Liddle's... I've had hypertension since i was 5, but my doctors tried to say it was "White coat syndrome".....my blood pressure has always being crazy...and always higher then it should be. But for years I tried to maintain it with diet.

I've been pregnant 4 times, and each time, except 1, I had to be on blood pressure meds...but the last one...in '09, my blood pressure went up to 160/110 and pretty much stay that way...regardless of the normal medications they had me on. Prior to that, they found that my potassium levels were at 3.0 and dropping...the lowest being 2.7.... I've seen 2 endocrinologists, my regular PCP, and a nephrologist. They've played around with tests and medication....with the end result being that my aldosterone levels and renin levels are normal...but I am still losing potassium at a fast rate. They now believe that my blood pressure is high because of my potassium.

I was put on spironolactone, potassium, labetalol, and a few other pills for vitamin and iron deficiency.... but now my levels seem to be holding... my PCP, is very unfamiliar with liddle's and so its hard to get her to believe what I'm saying....

I guess i'm looking for anyone else with this syndrome that can give me a little advice on the subject... about their struggle or even a doctor that has some advice in what direction i should go in next. Thanks!

Oh and feel free to email me at   Reughr  at  Gmail *******

[slphillips]

I was also just diagnosed with Liddle's syndrome but I have found an amazing doctor at UAB nephrology clinic that is worldly known for this disorder.  I would just like to know what is the prevalence of this disorder?

[killrtomatoes]

30 people on the planet as of 2008. I guess 31 with me. I actually wasn't diagnosed until I was 50.

[foreverinfaith60]

Thank you so much for this post. It seems that I found only one other person that has this and I haven't heard from her since I left her a post. I hope she is doing good. And I am so surprised to hear from a doctor! Again thank you, I hope more MD's check into this. I'm so thankful for you. I'm doing god now. I have to have my blood test every three weeks. I also have an ICD implant.Next week I should start chemo. Hope it doesn't deplete my potassium. When I went into seizures it was 2.3. I have confidence in my docs. Blessings to you.

[Dr Santos]

Hi,
Welcome to the forum! How are you? Indeed, Liddle Syndrome is a rare condition and this post will definitely help others know about this syndrome. Liddle syndrome is an autosomal dominant disorder which can be inherited. Hypertension is observed during infancy. It involves abnormal kidney function and is treated with a combination of low sodium diet and potassium-sparing diuretic drugs. Take care and best regards.