Posted , 3 users are following.
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]
0 likes, 4 replies
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]
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.
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 *******
[i:f96f977e89](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.
If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/i:f96f977e89]
Join this discussion or start a new one?New discussion Reply