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Lesley's Story

 

 

I found this site after years of little or no information. I was diagnosed with Gitelman's Syndrome when I was nearly fifty. Apparently it is quite common for the syndrome to present in older people.

 

As a child I craved salt and can remember coming home from school and pouring salt into my hand to eat. As I grew older I was always eating salty snacks. Looking back, through my twenties and thirties, I had episodes of what I thought were flu symptoms - extreme tiredness with aching muscles and would be in bed for three or four days. I took paracetamol and thought it was a virus but found it strange that I had a lot more "viruses" and sick leave than other people.

 

In my forties I started to get tired more often but just put it down to being an older mother (my son was born when I was 39.) I was working 3 days a week in a very busy job and we socialised and travelled a lot. I had no other symptoms. I was prescribed Spironalactone and Magnesium supplements which brought my potassium up to 3.0mg. I had no other symptoms apart from tiredness and was told that as I had had the condition since birth, my body had got used to the low levels of potassium. At the time I researched the internet but could find no information on the syndrome apart from an American site for Bartters syndrome.

 

Then I was hospitalised after a heart attack aged 55 and the doctors would not discharge me as my potassium was low. I had to explain that for me a potassium level of 3.0 g was good. They still refused to discharge me and put me on a drip for 24 hours which made no difference at all. Every time I needed a blood test I had to explain to various doctors about Gitelman's Syndrome and would show them a fact sheet from the Bartters site. Following my heart attack I started to cut back on salt (bad move) as that was one of the recommendations. However I started to get more and more tired.

 

By now retired, I was sleeping 8-10 hours at night but still needed to sleep between 2-3 hours most afternoons to get through the day. I convinced my GP to refer me back to the hospital thinking rightfully that after 10 years, more research into the condition would have been done.

 

I am now under the care of a very helpful and sympathetic renal consultant at Canterbury hospital called Dr Daulton. He promised to try different medications with the aim of increasing my potassium levels to over 4.0mg. After nearly 9 months of trying different doses of Amiloride and magnesium, as well as the horrible Sando K tablets, he has succeeded! I am now taking 30mg of Amiloride as well as Mag Tab SR tablets twice a day, which I have been ordering online from the U.S. The magnesium tablets still cause diarrhoea for which I take Loperomide every day.

 

As I write this, I am happy to report that my potassium level is 4.0mg and magnesium 0.60mg. I no longer have the extreme tiredness and aching muscles which were making my life so difficult. I feel so much better. My consultant will continue to monitor my levels through regular blood tests, though hopefully now not as frequently. My son has been tested and thankfully has normal levels of potassium. I am lucky in having the support of a very understanding husband which has helped me enormously.

 

I know I am nowhere near as badly off as other people who have to deal with more serious health problems, but I still hate having to take so many tablets as I also take heart medications and calcium tablets. Taking so many tablets makes me feel like an invalid which I am not ! Having to keep on top of my prescriptions so I don't run out of tablets can also be be a real pain! When I go on holiday I have to plan ahead and my carry on case for the plane is stuffed with medication.

 

I feel for those sufferers who are a lot younger than I am or with more severe symptoms as it does affect your life and spontaneity. You want to have fun with your friends, not having to remember to take tablets and monitor your health all the time. Some days I rebel and just don't take any tablets as I want to feel "normal" - whatever "normal" is !

 

I have found the information on this website very useful and will be contacting the supplier for MAG Tab SR tablets that has been recommended with the aim of getting them prescribed on the NHS. I know that everyone who has this syndrome will not have the exact same experiences/symptoms as me but I hope by telling my story it will help to inform others and I very much look forward to attending the next Annual meeting for sufferers.

 

Hope to see you there!