After consulting a doctor for tiredness and lethargy and...

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After consulting a doctor for tiredness and lethargy and after a blood test I was diagnosed as having Bartters some 18 years ago and have been taking 12 slow k tablets a day. This has been relatively symptom free until recently I caught a virus and was not eating or taking tablets because of vomiting. I became quite unwell to the point that I collapsed and all my muscles locked up almost similar to hyper-ventilating. I had muscles spasms in my body and went to hospital via ambulance.

My Potassium level had dropped to 2.3 and I was put on a potassium drip.

This did help but I found that I passed the concentrated drip through my body quite quickly. Once I started back on my tablets my levels rose to 3.4 after about 4 days and were allowed home. I now monitor my levels a little more than I have in the past and found after a test this week that my level was 2.9. (No symptoms to make me aware of this) With my Doctors advice I have raised my supplement to 16 slow k tabs a day.

[i:a4118bab02]This message was automatically imported from the original Patient Experience[/i:a4118bab02]

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  • Posted

    Hi there,

    I have had Bartter's Syndrome for 11 years

    I also have Gitlemens Syndrome as well; It has caused no end of problems

    overwhelming fatigue, confusion, sometimes I get the shakes and have the feeling of passing out, I used to take slow K but it was not bringing the level of potassium high enough

    I now take Spironolactone which acts as a directic and Sando K as potassium supplement, I have not worked in the last 4 years because of it and other problems

    The pills sometimes cause sickness and diarrhoea and stomache cramps[/b]

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  • Posted

    Hi there i have had Gitelmans Syndrome for 5years now all that used to bother me was the chronic fatigue,it still bothers me i am always tired and find it hard to drag my self out of bed but now my heart is becoming unwell. Slow k is useless it does not bring my potassium levels up high enough. .

    My mother had the hardest time finding out what was wrong with us. Many doctors would just assume my sister was suffering anorexia but we kept telling them that they were wrong and i had missed far too much school from chronic stomach cramps they just assumed it was irritable bowel syndrome and put me on medication which did nothing. um finally took us to Brisbane Childrens Hospital. They were far more concered with Stephanie and her weight or there lack of. After a few months they came to realise that her lack of growth and weight was all Gitelmens Syndrome and all my missed shcool days because of the cramps was all from Gitilmens Syndrome and the lack of potassium. Now we know what it is has not made life easier.

    I am only 19 and planning to marry and have been talking about starting a family with my partner but as my health is in not so good condition the doctors claim my children will be very unhealthy. My younger sister also has this illness and is very small for her age she can not seem to put on weight or grow much taller. We are becoming fustrated with the amount of slow k we are being told to take and the regular visits to the doctor to check up on the levels of potassium. I have become unhappy and have the lowest self esteem and my sister angry, she can not understand why we have been given such an illness i try to remember that we are still here and have each other and that gets me to take slow k once again.

    All i want now is to find a doctor that is aware of this illness so we can find a better way of life. And options for the future i would hate for my kids to be unwell and unhappy.

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  • Posted

    Hi Requelle,

    My name is Amanda I am 40 years old and married with two children, this is my story:-

    I was first diagnosed with \"Bartter's Syndrome\" back in 1995; I had given birth to my daughter the year before, my last child. It seemed at first the birth had taken a lot out of me, 6 months down the line and I was showing no signs of getting better. I was admitted to hospital on numerous occasions over severe dehydration, tonsillitis, fever ECT. It seemed every time I would catch a cold it would last for 4 weeks then I would catch something else. I was so bad one time with tonsillitis I could hardly catch my breath, my muscles in my body tightened up and I was rushed to hospital. I remember feeling very afraid, in the hospital I was told I was hyperventilating and a kind nurse was holding a bag over my nose and mouth. My temperature had risen to 43, I heard one nurse remark to a doctor \"you could fry an egg on her\" Bloods were taken and I was injected with some drugs to bring down my temperature and for pain as the muscle contractions were giving me so much pain, a pain I have never experienced and have never forgotten. A doctor came to see me, he was from the lab that test blood samples, he told me I had a condition called \"Bartter's Syndrome\" and would have to take medication everyday for the rest of my life. I thought to myself then,’ I know what it is now and if I stick to my medication life can carry on as normal' how wrong was I! It took another two years to get the correct type of medication and how much. I was working full-time and two young children to raise with not much understanding from any family members or help. I worked on till 2000 then I started to get worse and was found to have \"Gitelmans Syndrome\" as well. I was signed off work and have not worked since, my medication is more now. I take 2 100mg spironolactone tabs (I could only take this drug if I was not having anymore children), 3x3tabs of Sando-K for the Bartter's and 4 tabs of 2.5 Magnesiocard a day. I have over whelming fatigue and sometimes suffer from shaking and feelings of passing out, the tablets sometimes make me sick and diarrhoea. I have recently joined a gym to do some exercise and have been looking at beauty courses to take, so I can work for myself and get some of my life back! I have been unhappy and very angry at times and frustrated at the realisation of, no matter how many tablets I take I will never be the same again! I sometimes wish there was an injection to have once a day for the fatigue it just comes on suddenly and the things you were once able to do you can do no more!

    I used to take slow-k I did not feel it did any good, I found that taking Sando-k instead is better it gives me more of what my body needs and I feel better than I did in the begining. They are dissolvable Tablets, it’s an acquired taste!

    The consultant I see every 6 months at the hospital deals with diabetics too. (I hope this helps)

    I was very skinny at 19 as well and the doctors thought I was anorexic, far from it I loved my food. I am now 8 stone in weight which I think is healthy I'm 5ft 4 in height.

    I would like to know, what is wrong with your heart?

    I refuse to give up and give into it, I am going to do the things I want and get back to work no matter what, I tell myself this everyday. If you ever want to chat my email is *******

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  • Posted

    Oh my god, it is so overwhelming that there is other suffers apart from me. I got diagnosed when i was 4 years, after constant vomiting and terrible muscle cramps in my body, hands and feet. After much investigation my mum was told i had Bartters. However later on I went on some tests at Great Ormond Street hospital and was told I actually had Gitelmans. All my life I have been on tablets switching from liquids to pills. At the moment I am currently taking Magnesium capsules 32 a day, indomentation and Sando K. In total i take 52 tablets a day. Apart from that I led a normal life, when im sick, it can take it out of me for days and often leads to hospitalisation. However i agree with the fatigue, its gets to me too! Often my partner does not understand and thinks i am lazy.. But i know the truth! :D Went to hospital appointment today and was told there is a chance I could have Bartters as well?? Madness! Just keeps getting better and better!! Well at least it is nice to know i am not the only one! Oh p.s. I have had some recent heart investigations, it has come back fine, but i did have epsiodes where i was waking in the night unable to breath. I also suffer from periods of bad palapations. But I just had all my results back and everything is fine in that department. They believe the low level of K+ can cause irregular heart beats at times...
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