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What r u taking

splodge68 Message
10 Aug 2009, 03:00 PM

Hi Just wondering what dosage others are on, just out of interested. I was diagnosed with Bartters Syndrome at 13 but it was changed to Gitlemans at 35. Im now 41 and have been taking 24 Slow K tablets for nearly 30 years, but more recently also on Magnesium Glycerophosphate 4g per day. I did take Spironolactone for a while but didnt make me feel any different and for some reason I ended up with sever bladder infections for 4 years (may not have been related but happened at the same time). Have also been offered Steriods over the years but have always declined. I also took the full dose of Ibuprofen for 6 months, but didnt feel any less tired and my blood levels never got better. If anyone wants to know whats it like to have this for 30 years then let me know I will be happy to help. Obvioulsy I can only tell you about my experiences but I think I am a typical case. Melanie
beth Message
13 Aug 2009, 08:41 PM

Hi Melanie, I was diagnosed with gitelman's in october 2008. I'm on 50mg spironolactone and 10mg of amiloride and that is working for me. My last potassium lab was 4.2 which is in the middle of the normal range according to my lab. How are you surviving without being on any potassium sparing diuretics? From what I understand it doesn't matter how much potassium you consume because you will just pee it out without the medication. How do you feel now. Before being diagnosed I was extremely tired. Had to quite my job. Had extreme heart palpitations and loss of muscle control. Are you experiencing any of this now that you are not on diuretics. Beth
splodge68 Message
14 Aug 2009, 09:19 AM

Hi Beth Lovely to hear from you. The reason I take 24 slow K tablets a day is that whatever I take, including spironolactone, my levels are never higher than 3.4-3.5. When I was originally diagnosed my level was under 1. I am much happier taking slow K as it has no side effects at all, although it did take my stomach a few years to get used to them. I was diagnosed when I was about 13 when I went in for an operation. I had always been a very tired child and have never had any energy (think my mum thought I was lazy). I now get extra tired in hot weather due to the sweating and extra peeing, but im not that bad. I do have my days when my muscles hurt all over and I am so tired, but I try not to give into it (which is sometimes easier said than done). I find if I miss a dose of tablets for a few days (which I still forget after nearly 30 years) then I can get exhausted and sometimes rather down and tearful. Luckily I have a job and I also ran my own business for 12 years (have no idea where I got the energy from). Its a shame your had problems with your heart an muscles, its not funny but I am guessing its because you went so long without being diagnosed. Having such a low potassium will put a terrible strain on your heart etc. Once your levels are up you shouldnt experience any problems as far as I know. If the spironolactone is working for you then you should stick with it. I under stand spironolactone is recent medicine as they found when they gave the elderly diuretics (which is the norm) they were all dying of low potassium, so they invented spironolactone to help them keep their potassium levelsI up. I was lucky that this wasnt offered to me until about 10 years ago and I was already on the Slow K. Although I gave it a go along side the 24 slow K tablets my levels didnt change so I am happy on the slow K. Its a hell of a lot of tablets (28 a day with the magnesium). Obvioulsy the main concern is getting a stomach upset, as you dont want to get rid of any extra potassium. I have always felt faint if I have had an upset stomach (and even fainted a couple of times). Thats where im not sure how the spironolactone copes, can you take extra?. Obvioulsy I just take extra slow K or reach for the bananas :) I am always a little confused as I was always tired as a child and Gitelmans Syndrome is not supposed to come on until late teens early 20's. The orginal doctor I saw said it was Barrtters Syndrome, but this was change about 10 years ago. Im still not convinced they really know what they are doing as we are very rare indeed and they really dont have much to compare us with. I hope for your sake you have been through the worst and you life should get back to normal. Gitelmans is supposed to much better than Barrtters Syndrome so you should have no complications. Having had this for nearly 30 years I feel like professional at it and I find it much better to self diagnose if I have a problem. When I was with Guys Hospital I used to tell them what I wanted, but I am now with a local hospital who are a bit thick, but it saves me the trip to London all the time. Hope that gives you a little information, hopefully not too much. Let me know if you need anything else. Melanie xxx
martipa63 Message
13 Jan 2010, 06:41 PM

Hi Melanie, I'm 46 year sold and my sister is 51 years old, after years and years of visits finally in November 2009, two month ago a Genetic Specialist told us that we have the Gitelman Syndrome. I spent all my life to convince myself that i was not tired, that i was not suffering of muscle weakness,cramps,etc. that all these symptom was only in my head! Now that I know that all is real my life is not changed, I'm still using all my mind power to wake up in the morning and to work for 12 hour per day. The only treatment that me and my sister received is Potassium and Magnesium, do you know if there is other treatment or a specific diet that can help? Thanks in advance for your response. Paola From Italy
splodge68 Message
14 Jan 2010, 11:58 AM

Hi Paola At least now you know why you are tired all the time, it doesn't cure you, but at least you know its not in your head. You didn’t say what you potassium levels are, hopefully they are not too low. I have always thought positively like you, if I give into the tiredness I wouldn’t move all day, but I just push myself to get on with things. I ran a business for 12 years and work at least 12 hours a day, so I know what its like to push yourself. For me the Potassium and Magnesium work, there are lots of other treatments available but you should speak to a doctor as none of them are as natural as just taking extra minerals like potassium and magnesium. The other options are potassium sparing diuretics (spironolactone), steroids and ibuprofen can help. But you will need advice on all of these before taking. None of them seem to work for me, I’m just as tired and my potassium doesn’t go up. If you want to help yourself with diet then the obvious choice is Bananas, Tomatoes, orange juice etc. You can look potassium rich fruit and veg up on the internet and there is a list to help you. I wish you both good healt and hope not too may tired days. With Love Melanie
martipa63 Message
16 Jan 2010, 01:25 PM

Hi Melanie, Thanks for your immediate response! In the last two days i was a little busy.., anyway: The blood level of potassium is at minimum or lower than the minumum and magnesium the same as well as sodium, the urine level are dangerous near 1 as well as calcium. My sister is suffering a lot due to the heart tiredness, fatige, for me is more a problem of fatige,headache, muscolar problem and cramp. Thank for the diet advise but i'm soffering of stomac problem also that it means no Tomatos, no Orange juice,etc. I wish you to mantain your positive approch to the syndrome as well as 'a not so tired days' , the life is wonderful and there is no Syndrome that can prevent us from live it joyfully. With love Paola
splodge68 Message
16 Jan 2010, 05:04 PM

Hi I was interested to hear that you had headaches. I am suffering with tension headaches with a stiff neck and migraines that are getting worse. My doctor seems to think this is nothing to do with our Syndrome, what does your doctor say? Sorry about your stomach. To be honest I have never found any improvement with a diet rich in potassium, as we get rid of it through going to the toilet so quickly that we do not see the benefit. As long as you are taking you tablets at regular intervals (I take 6 slowK tablets 4 times a day and magnesium twice a day), that way I keep my levels topped up as much as I can. I wish you and your sister my best and try to keep positive. Melanie
martipa63 Message
17 Jan 2010, 01:50 PM

Hi Regarding headaches I have no response from the Doctor.., But what I know is: if i simply take an antipain medicine it doesn't work and it doesn't depend from a wrong proportion, but if togheter with the aintipain I also take magnesium the antipain is able to decrease the pain! It happens that for months I don't soffer, but like this months I had a regular terrible heaaches every evening for 11 days consecutive. The only suggestion that I received is: you have learn what you body is telling you and listen to what your body is asking you. Based on your expirience you can find the right proportion for potassium and magnesium that absolutely can be different day per day. I thake 2 slowK tablets and and 2 magnesium 2 or 3 times in a days depending form as I feel. kiss Paola