Hi, my name is Greg from Australia. At the end of February 2010 I experienced chest pains while mowing the lawn and was sent to the emergency department of a major hospital. It was confirmed through a blood test, ECG and angiogram that I had in fact had a heart attack and have had a stent inserted in one 99% blockage and will be going back on Monday for two more stents in the remaining 80% blockages.
During the course of the tests, my Cardiologist said "You have a very low blood Potassium level, do you know why this is?" it was a surprise to me, with my Potassium being only 2.4, Magnesium 0.57. I was given two bags of Potassium by IV, but still my levels were low. I was refered to a Nephrologist, who ordered a 24 hour urine test, a spot urine test and blood tests over 4 days and a blood test 1 week later. He is still waiting for all of the blood test results from the hospital, but feels I most likely have Gitelman's Syndrome.
The strange thing is I am experiencing none of the symptoms that other sufferers have reported. The doctor feels this is because I have had this since childhood and my body has adapted. However after doing some research on the net I find that I do have some symptoms that may relate to this:
As a child I was hospitalised at the ages of 2 and 5 with severe dehydration and a cause was never determined
Also as a child I developed an craving for salt and used to put salt on my hand and lick it and chew on rock salt. Even how I love salty foods and eat too much salt - but my blood pressure is very normal 120/80
I used to get bad cramps in my calf muscles as a teenager
Since a child I have been drinking large amounts of Tomato & V8 vegetable juice - both high in Potassium & Sodium (I actual crave this and can't imagine a day without drinking it)
I get up several times a night to pass urine
I get a dry mouth at night and have to have a drink of water several times during the night.
Otherwise I feel good - plenty of energy, no joint pains, go for long walks every day, not tired, good concentration
I am current taking Potassium Chloride tablets (600mg) 3 tablets, 3 times per day, but have been told this is not a long term solution. The Nephrologist has suggested using a Potassium sparing Diuretic, but as this is all new and his final diagnosis has yet to be confirmed, I should have some answers soon regarding long term treatment
It has now been confirmed that I do have Gitelman Syndrome. Current treatment is Potassium Chloride tablets (600mg) 3 tablets, 3 times per day + Magnesium Aspartate Dihydrate (500mg) 2 tablets, 3 times per day. My blood Potassium level has now risen and is being monitored to see if this has solved the problem
Hi Greg, I have Gitelman's as well. How did they diagnose you? Did they do the 24 hour urine potassium test. Normal loss is 125 (forget the measurement type) and mine was 897 per day. My kidney doctor said it doesn't matter how much potassium you ingest. You will not get your levels up unless you take potassium sparing diuretics like spironolactone and amiloride. I'm on both. I wonder why they didn't put you on these. If you research Gitelman's thats the only way to get your potassium up. I was diagnosed in October of 09' and it took about a year to feel better. I don't know if you have the extreme thirst like I did and the other Gitelman people on here, but my doctor said not to drink too much because you will loose too much electrolyes in the urine. I was drinking about 12 cups a day and I'm down to 6 and feel alot better even though sometimes the thirst is overwhelming. I was chatting with three other people with Gitelman's but they haven't responded in a long time. I'm really worried about them since two of them would be in and out of the hospital. Glad you found this site.
Thanks for your reply. Yes, they did the 24 hour urine test, a spot urine test and numerous daily blood tests. The doctor had mentioned tying Potassium sparing diuretics, but at this stage he said he did not want to use them as he was concerned they would lower my bood pressure (not sure why this is a concern as I have a normal blood pressure level to start with). The current treatment of Potassium Chloride tablets (600mg) 3 tablets, 3 times per day + Magnesium Aspartate Dihydrate (500mg) 2 tablets, 3 times per day seemed to be working as my Potassium levels had risen before being discharged from a recent hospital stay. I was told to keep taking these supplements at this rate and to have another blood test last Friday (which I did). The doctor said if there was any problems he would call me and if I didn't hear from him, to have another blood test in 3 months time and come back and see him. It is now the Tuesday after the last blood test and I a haven't heard from the doctor so I assume all is OK.
The strange thing with me is that I don't have any of the usual symptoms - no excessive thirst (except at night when I wake up several times for a sip of water), no muscle aches and pains, plenty of energy. If it wasn't for a blood test taken at the hospital, I wouldn't have even been aware that I had this condition.
It will be interesting to see what the result is at my next doctors visit in 3 months time
I'm glad your symptoms are not bad. I've chatted with a lady who is on iv potassium at home several times a week and can hardly function. I think she is and example of the extreme bad side of Gitelman's. I take 50mg of spironolactone and 10mg of amiloride with no side effects of low blood pressure. If you are doing good with out the diuretics that is great. Hope it stays that way.
Just checking in. Hope everyone is hanging in there. My potassium levels are doing good. I'm getting over a bout of hyperthyroidism which has been awful. Much worse than hypothyroidism. The problem was too much thyroid medication in my system. Just have to wait for the lower dose to kick in. Thinking of you all and hope things are going well.