Hi,
I have just joined the website but have written the following about my experiences. If it helps just one person I will be happy
I suffered with ill health for over 20 years and was misdiagnosed with depression, fibromyalgia, tennis elbow, irritable bowel syndrome etc. A couple of years ago my life got to a point where couldn’t function on a day to day basis and I was extremely ill. My GP probably just thought I was a hypochondriac.
I spent most of my life asleep and had no energy for anything. I tried to play golf but I just couldn’t. I was craving sugar all the time. I was having hypos all the time including in my sleep. I believe if I hadn’t have found my consultant then I may have died soon. If I didn’t die I certainly would have ended up diabetic. I have never been able to drink alcohol as it makes me fall asleep (even in a night club) and it wouldn’t take much. I wouldn’t remember what had happened the night before. If I hate carbohydrates eg bread, it felt like I was drugged up, I couldn’t stay awake and no one could wake me up. I had constant headaches which were horrendous, I had them all the time, I woke up with them I went to bed with them and they never went. They would sometimes last for months without a break. My skin felt like it was crawling. I had very bad stomach problems, bloating and pain. I itched all the time. My concentration levels were terrible, with brain fog and I just couldn’t do anything (like I had a total block on all the time). I had two tennis elbows which lasted six years and no medication or cortisone would ever do anything for them.
That is when my GP referred me to the best endocrinologist who changed my life. He is an expert in PCOS, diabetes and the endocrine system. After flaking out with a glucose tolerance test and many other blood tests he gave me his diagnosis. I had Neuroglycopenia (blood glucose reading of 2.0), Insulin Resistance and PCOS. A few years back I went for fertility investigations because I wanted another child and couldn’t get pregnant. I had a PCOS assessment and was told I didn’t have PCOS (by CARE). PCOS was only confirmed by my endocrinologist with a blood test.
He told me that I wasn’t depressed, didn’t have fibromyalgia etc. All my problems were down to PCOS which was a genetic problem in my family (early baldness before the age of 30 in my dad's side). My family has a history of heart problems and diabetes. I guess I am the lucky one, my brother already has type 2 diabetes in his mid forties and although I have early symptoms of developing diabetes I have had an opportunity to get myself back on track and so avert the onset of the illness. My 18 year old daughter has also been diagnosed with PCOS as she was displaying symptoms from an early age. I want to make sure she doesn’t suffer like I have.
Being ill all these years has ruined relationships, lost me jobs and my quality of life has been very poor.
My endocrinologist gave me Metformin as this works on the PCOS (isn’t licensed in the UK to treat PCOS but it should be). He also gave me Spironolactone which is a testosterone blocker. Of course if you take Metformin you should also take vitamin B12. People with the PCOS gene produce too much testosterone. The PCOS gene is present in both men and women and men can suffer with problems just as much as a woman. I didn’t get PCOS because I put weight on, I already had the PCOS gene and it made me put weight on because it makes you Insulin Resistant.
After being on my medication for around two and a half years and a change of lifestyle (ie a low glycaemic diet and exercise I can now say that I am feeling well. I have lost a total of 3st 9lb (now 9st 5lb) I will need to take my medication for the rest of my life and live a very strict lifestyle (it's a struggle) but it is much better than being so ill and the prospect of dying early. All my blood tests show all my hormones are in healthy ranges, my organs are all working well and I am now a healthy person. I have an annual check up every year just to keep a check of my blood figures.
I still suffer with peripheral neuropathy, my eyes are affected, I rarely have a hypo, I rarely have headaches and when I do I know that I haven’t been looking after myself too well (it’s difficult to live a strict lifestyle when you have to go out and socialise). I know when I have overdone it when I get a headache or the odd hypo. Carbohydrates still make me go to sleep. My stomach is much better now that my problem is under control. I only get joint pains when my insulin gets too high. Another symptom I still get when I know I haven’t been good with my diet is my brain literally stops working. I guess no one can understand what that means unless you suffer from it yourself.
I believe there are many people out there who have been ill for years, their doctors have misdiagnosed them or just say there was nothing wrong with them. My doctor used to take blood tests and they would all seem normal. No one ever did a glucose tolerance test. I once went into my doctors surgery having a hypo and they told me I was having an anxiety attack. If you can’t find out why you are ill I would ask for a second opinion. It’s always worth checking your glucose tolerance and getting a proper blood check done for PCOS. It goes hand in hand with insulin resistance and causes so much damage to your health. If you catch it early it is easier to put the problem right. I would never wish what I went through on anyone.
Metformin isn’t available to me free like a diabetic, I have to pay for it because they haven’t licensed it in the UK for treating PCOS. If I developed diabetes because of my PCOS they would then let me have it free. I am taking Metformin to stop me getting diabetes yet the NHS won’t support me on that one. If anyone out there has PCOS or knows someone who has it then they should always be treated. PCOS causes diabetes, strokes and heart problems which usually means an earlier death and a substantial long term cost to the NHS.
If you go on to develop type 2 diabetes then it isn’t too late. Your health is the most important thing in the world. You can change your lifestyle and make yourself better.