"Why did it take so long to get a diagnosis of diabetes?"

About: Knowsley PCT St Helens and Knowsley Hospitals NHS Trust

(as the patient),

I have been suffering from chronic fatigue for over 20 years and it was always put down to the menopause.

In 2009 I was diagnosed with Meniere's Disease, Asthma and IBS all in the same month and a year later with gastritis, hiatus hernia. Then I came out in hives which got bigger and bigger and bigger until my whole body was covered and swollen from head to foot.

My GP at that time just kept giving me antihistamines and sending me away.

I felt like all my organs were being affected by something so I went to A & E where I was given IV steroids, antihistamines which calmed the situation but didn't eradicate it. The doctor on duty discharged me but made it very clear if the symptoms got worse I was to dial 999 and get back to hospital. I had to do that the following day when I woke up choking for breath because my airways were closing. I was admitted and saw an Endocrinologist on the ward who said he had no idea why I had this rash and swelling and said that I needed an Urgent Referral to an Immunologist. I asked my GP to do that but no appointment was forthcoming.

I spent 10 months in that state and I lost my job. I couldn't sleep because the itching was intolerable to the point I felt suicidal. I had to phone the Immunology department several times to ask when my appointment was and I was fobbed off with one excuse or another and eventually was told the Immunologist didn't feel the need to see me as the Endocrinologist had given me an Epipen.

So on the basis of that the immunologist felt no need to see me despite the Endocrinologist requesting an Urgent Referral. I felt I was in the middle of a political rather than a medical situation as far as the clinicians were concerned and I don't think anyone cared a jot what the hell I was going through.

Ten months with a swollen and disfigured body and face with constant itching which drove me insane, didn't seem to concern anyone and no-one seemed interested in finding the CAUSE of the condition. And with angioedema that swelling was also going on INSIDE my body - so as far as I'm concerned it should have been thoroughly investigated. Only because I insisted on copy clinic letters being sent to me, did I notice a tiny PS on the bottom of a letter from the Immunologist who I eventually got to see because I insisted. And it mentioned that I should have regular blood tests for something or other.

My GP at that time contact me about any blood tests so I changed GPs, told them my history and asked them to 'sort me out' because by then I felt absolutely awful and I was suicidal because my quality of life was just non existent.

I had a set of blood tests and was referred to a Consultant Physician at the hospital where I'd been admitted with the anaphylactic shock. He found nothing wrong and suggested I have counselling for depression. I, in the meantime, was feeling worse and worse and I literally felt as if every organ in my body was slowly shutting down. I had no energy or enthusiasm for life and I knew it wasn't just depression, that it was physical. I went for the counselling more to comply with the doctor than because I wanted it. I wanted a DIAGNOSIS for my PHYSICAL symptoms, I didn't need my head tested.

I reminded my new GP that I should be having blood tests and was sent for some and then I was asked to come back for another and then another and eventually - BINGO - I was diagnosed with Diabetes Type 2.

What I'd like the medical profession to explain to me is WHY did it take so long for my diabetes to be picked up? I'd been back and forwards to GPs and doctors for YEARS, I'd been complaining of chronic fatigue, bladder issues, sleepless nights etc for YEARS. WHY wasn't this diagnosis achieved sooner? No-one becomes diabetic overnight. Why did I have to develop so many complications BEFORE the diagnosis was achieved? I really don't understand why my condition had to get so bad before any of the clinicians I saw put two and two together and came up with the right conclusion?

I've been diagnosed since August 2012 and am now on Metformin 2000mg and controlling it with diet and I've received the majority of help and support from other diabetics on Diabetes.co.uk, particularly about diet, HbA1c, blood testing etc.

With their help I've managed to learn how and when to test my blood after eating and I can see what foods cause me problems and what foods are OK and in the main it's CARBS that cause blood sugar spikes for me, yet the NHS advice is to eat carbs at every meal. If I did that I would not have brought my blood sugar levels down to what they are now. I wonder why is the NHS lagging behind other countries in its care of diabetics? Why am I being given poor advice regarding diet? Why aren't we looking at how other countries like Sweden are approaching diabetes and learning from them?

But also why were the symptoms like I had being ignored and was I being told that they didn't know the cause of my skin rash, breathing problems, IBS etc?

Since I started on Metformin and LCHF diet, I have brought my blood sugar levels down quite well - and hey presto, my breathing is improving, my stomach and bowels are improving, my skin has settled down ... and my state of mind is considerably improved - so just how long have I been diabetic without a proper diagnosis and why?

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