Gitelman Syndrome is a rare genetic disorder causing the kidneys to pass too much sodium, magnesium, chloride, and potassium into the urine.
After 8 years of silence, let me shate with all of you how my and my sister story continued. 2010 I had Baseldow at a sever level, that generated a tremendous exophthalmos. In two years I had radio therapy, cortisone therapy (day hospital), removed the tyroid, had 5 eyes surgery. In any case better thatn siste that kow spend 4 days/14 days in day hospital for the potassium injection directly in the blod, in other word no possible normal life. But this is not enough!! 10 months ago also to sister has been diagnosed the Baseldow. She started the Radio Therapy, Cortisone but was not possible to remove the tyroid due to the heart (you know the Gitelman effect...) so she had a Iodio treatment... a Nightmare .. the Potossium and Magnesium decreased so much that ... Fortunatelly she is still alive!
So my question is do you know any other case of Gitelman+Baseldow? Let me remeber that we are not twins, 5 years of difference, why have we two different Syndroms?
Do you know if there is any new treatment? the Potassium level of my syster is never and never greather than 2.7 (3.1 is the minimum), this is not life!!
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
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
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
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