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My Diagnosis Story...

So I thought that before I start getting into the food reviews and general chat about day to day life with Type 1, I better explain how I got my diagnosis. It's quite a story... a LONG story...

I suppose my 'journey' began back in October 2022. I have a form of kidney disease called IgA Nephropathy and part of the management of that is regular blood tests. I had my latest lot of blood tests in October and my renal consultant told me my blood glucose was looking a little high and asked to repeat the test so that he could rule out diabetes. I had the bloods repeated (fasting this time) and expected to hear back that everything was fine. My renal consultant arranged another call with me the week later and confirmed that I was indeed 'diabetic' and my HbA1c was 72mmol/mol (which at the time meant nothing to me but now i realise it was high but not as high as some people can get to before T1D diagnosis).

So, that was a shock. However, he said it was more than likely Type-2 but given my age he couldn't be sure. I had just turned 34. He then proceeded to ask me some questions about how I had been feeling lately and yes, I had been extremely tired and very very thirsty - but I had just put up with it. He said he would send a letter to the diabetes team at the hospital and also my gp and that one of then would be in touch to arrange further testing or an appointment to discuss the situation.

I came off the phone not really knowing what to think. I suppose I thought it was just going to be another health condition to add to the list an an extra tablet to take in the morning and that I would be told to lose weight and exercise and that would be the end of it. Of course I knew there was a tiny chance I could be Type-1 but since I was "well" I put that idea to the back of my mind. (NOTE - now I have been on insulin for a month I realise I was absolutely NOT "well" - the difference between how I felt then and how I feel now with insulin in my system is extraordinary!)

So... fast forward a whole week and I still hadn't heard anything else. Me being me, I found an email address for the diabetes team at my local hospital and sent off an email asking if there was anything I should do or who I should contact. I also mentioned in my email that the renal consultant had asked me a few questions on the original phone call that I didn't know the answer to at the time but now I had answers. He had asked me if there was any history of diabetes in my family and at the time I said I didn't think so but I had since learned that my great-grandmother on my mum's side had Type-1 and my great-aunt on my dad's side also had Type-1. I also mentioned that the renal consultant had asked if I had lost any weight and at the time I hadn't noticed but when I weighed myself after the call I had realised I had actually lost around 1.5 stone (9.5kg) without trying in around 2 months (I had been eating everything in sight so if anything I would have expected weight gain, not weight loss). So I put all this in my email.

I got a fairly quick reply to my email saying that they had my referral and that they would highlight my weight loss to the medical staff. They also asked me by email if I was feeling thirsty, tired and up through the night passing urine. I confirmed that I was thirsty and tired and that I was normally up once through the night (so not loads) but that this was a bit unusual for me as normally I don't wake but I had put it down to drinking more as I was so thirsty. The nurse then gave me a call and basically said that by the sounds of it I had Type-2 and I must just be a 'thirsty person' and not to worry. They told me my details were with a doctor so I would hear back about treatment etc within the next week.

Fast forward a further two weeks and I still hadn't heard anything from anyone so I sent another email to the diabetes team at the hospital explaining that I still didn't know what was happening. I had by this point received a letter through the post inviting me to a Diabetic Eye Screening appointment but nothing further - no appointment with a doctor and no treatment. At this point, one of the diabetic nurses called to apologise that I hadn't heard anything and advised that a letter had actually been sent from the Diabetes consultant to both my GP and my renal consultant about 2 weeks ago asking them to treat me as Type 2 and put me on Metformin tablets and also SGLT2 Inhibitor tablets and for them to arrange to check my urine c-peptide creatine ratio to confirm Type-2. I advised the nurse that I hadn't heard about any of this. The nurse was great and went into detail about what this all meant and she said she would chase this up with my renal consultant and GP and call me back. She ended up spending a full day looking into this for me and called me back later that afternoon. She explained that she couldn't get a hold of the renal consultant or the GP but that she had been talking about my case with her colleagues and that given my symptoms, age and family history she said she had a suspicion that I wasn't Type-2 but could possibly have LADA (or type 1.5). Anyway, she spoke in detail about the c-peptide urine test that I had to do in a red-top tube after having a large carbohydrate-heavy meal and advised that she would email my GP surgery asking them to arrange this - or remind them as they had already had the letter from the consultant for two weeks by this time. I told her I didn't have much hope as my GP surgery are generally useless and very difficult to get a hold of. 

A few days later, I still hadn't heard anything and I tried and tried and tried to get though to my GP surgery on the phone but I couldn't get through. I then had to resort to my 'last-resort' - my husband plays golf with one of the GPs who works at our surgery so he had to mention it to him on the golf course and ask him to get it sorted out for me. Three days later, I get a TEXT from my GP surgery with an appointment with a NURSE a whole week later... no doctor as expected, no telephone call as expected - just a text about an appointment a week later with a nurse!

Anyway... we then spent a few lovely days in Paris for my husband's birthday, which was absolutely lovely (but very cold!!) and whilst there I received another text from my GP surgery advising that a prescription had been processed for Metformin tablets. No discussion about it - just a text to say they were at the pharmacy!

So... I FINALLY get my appointment with the nurse. She took one look at me and said "Oh, you don't look Type-2" Apparently I wasn't old enough or fat enough... Anyway, she took my weight and noted that my BMI had dropped since I was last weighed. She went through some Type-2 diabetes things with me and discussed the Metformin medication. I asked about the other medication that I had been told about (SGLT-2) but she said to start Metformin first. She gave me some 'Type-2' leaflets but said she felt silly giving me them as she had a feeling I wasn't Type 2. I asked about the urine c-peptide test. She said this should be done by the renal unit... I explained that the diabetes nurse had said it was the GP surgery who had to do this... the nurse said no, it wasn't them... Eventually, I agreed to contact the renal department and the diabetes department to figure out who had to do the test if she would give me the bottle so I at least had it when I found out where the sample had to go to. She handed me a white-topped bottle. I explained that the diabetes nurse definitely said red-topped bottle for the test. The nurse said it shouldn't be - it should be the white-topped bottle as the red-topped one was only used for infections. She was reluctant to give me it but I eventually got both bottles and was advised to check with the diabetes team at the hospital which one to use. Being used to having urine samples submitted (renal patient) I asked if there was a sticker to be put on the bottle. She told me I would have to arrange for the sticker with either the diabetes department or the renal department. It's all starting to sound a bit ridiculous now, right?!

So this back-and-forwards continued between myself, the diabetes nurses, the renal unit and the practice nurse about WHERE I was to submit the sample, WHAT bottle I had to pee in and WHO was giving me the label. Nobody would take ownership or give me a straight answer. It was so frustrating. EVENTUALLY it was decided that I had to use the red-topped bottle, my GP surgery would print me a label and I would submit it at the GP surgery. I done this on 20th December.

Later that same day, I had a phone call from the Diabetes nurse who had called me originally the few weeks before. She had been on holiday and came back to see that I had been having to contact the department back and forwards about the sample and everything so she called to apologise and to ask how I was. On that call, I told her I was still very thirsty, still very tired, had lost a few more lbs of weight and had another symptom she had told me to look out for - thrush. She asked if I could pop to the hospital to have a quick ketone test just to put her mind at ease as she just wanted to rule out Type-1. I was at work at the time so we agreed that I would see her colleague the next morning for a quick finger prick to check for ketones as I was already at the hospital for my Diabetic Eye Screening appointment the next morning anyway.

My husband came with me to the appointment as the letter said they may use drops in my eyes which would blur my vision and make me unable to drive. As arranged, I went 5 minutes before my appointment to have a finger prick blood test with one of the diabetes nurses. "You'll only be here for 30 seconds" she said - not expecting what came next!! She checked my blood for Ketones and whilst they weren't at a high level, I did have some ketones. I had a bacon roll for breakfast before the appointment as they suggested so it wasn't starvation ketones. She said that the ketones were in a "normal" range but that she would have been happier with the result if there had been none. She asked if she could do one more thing and check my blood glucose levels and again she said it would only take a few seconds and I'd be on my way again. She checked and her face kind of dropped. 24mmol. I obviously at this point didn't know what it should be and asked if it was bad. Of course I now know that it was. 

The nurse told me to go for my Diabetic Eye Screen whilst she went to find a consultant for advice and that I had to go straight back. I should have known something was wrong when she came to get me from the waiting room and suggested my husband come in with me. I thought she just didn't want him sitting there alone so didn't bother to bring him. Then, she took me into the room, closed the door and put on a very serious face. "Emma, I've spoken to the consultant and they agree with me. It looks like you have Type-1 Diabetes"

And so it began! 

I had the consultant come speak with me along with two medical students. I had bloods taken. I had a crash course in injecting myself with insulin, I was given books, leaflets, pens, needles, a glucose monitor and a whole load of information. I didn't know what to think. 4 days before Christmas my whole world had just been turned upside down in one short sentence.

So that is my very long diagnosis story. Had the NHS not been a complete shambles I wouldn't have had to chase everything myself. I dread to think what situation I would have ended up in though had I not chased everything for weeks and weeks. I'm sure I have grounds for a complaint but to be honest, I don't think it would make a difference. The NHS is totally on its knees and I'm just very lucky that I fought for my diagnosis - albeit not one I ever wanted!

Oh and for those of you who read the whole part about the urine sample for the c-peptide test and the back and forward for weeks chasing an answer on where I was to submit a sample and in what bottle.... THEY HAVE LOST THE SAMPLE SO DON'T HAVE MY RESULTS!!!!!!!!



























 
































































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