Hi! This is my first time EVER on a forum of any kind! I'm not quite sure how it all works but when I was looking noticed the words Pancreatitis & Trygliseride so I thought I'd share my story.
At 34yrs old I was rushed to my local GP with the most awful upper abdo pain, my GP immediately had me rushed into hospital with "suspected pancreatitis" I had no idea what this was or what the pancreas actually did, all I did know was that this pain was worse than when my appendix exploded inside me at 24!!!
I was given a GB ultra sound, an X-ray, bloods, urine was taken, was begging for pain relief and was given first paracetamol, then Tramadol, did not touch it, was then given codeine and paracetamol, was told I was extremely distended, x-rays showed a very impacted bowel, was told buy ultra sound nurse that there was so much gas she could not give a definitive yes/no on Gaul Stones said tell them to get you sorted first then will look again. After a night of agony it got better and was sent back home next day. I was rushed in no less than 6 times in 4/5 mts every time the same happened and was given food to eat, no ct scan, no broad spectrum anti biotics no real pain relief and repeatedly sent home! Until I was so ill I was staying with my mum, who lived in a different area with a different hospital to go to, first time I was rushed in I was told no food! Given loads of fluids, a CT scan and an Endoscopy. Cut a long story, the results were horrifying! I was told after nearly a year of being taken to the other hospital and sent home, that I had Chronic Pancreatitis, I was asked how much I drink each day-none! I said, I had stopped drinking on weekends after work due to alcohol not mixing with my ADHD at 28yrs old, I was told that I must be lying as I had the pancreas of a 90yr old man or a chronic alcoholic! My mum was with me as was my Fiancé who both confirmed I was T total! I was not believed and when told the implications of this "atrophic pancreas" I burst in to tears! I just could not get my head around it. I was asked why I had been back and forth the other hospital so many times yet I had not been ct scaned? I didn't have the answers, they then agreed to take over and I had to stay with them as not to confuse things. I was also told I was lucky to still be alive as they shouldn't have fed me, I should of been put on a high dependency ward and CT or MRI'd at least with loads of fluids etc. not sent back home. They did more tests but I was referred back to the first hospital as that was my catchment area and told NEVER to go back to the hospital that diagnosed me as it was complicating things! After seeing a specialist there was again accused of being an alcoholic! This started to bother me and offend me, I told them this but was ignored, yet in the same meeting was told my LFT's were "extremely abnormal" @ 124 and this pointed to alcohol abuse! Then 10 mins later was told my Trygliseride lvls were very high and "probably the cause of it" I was so confused! So I did my own research and found that LFT's of 124 on that ONE occasion were nowhere near abnormal, just slightly elevated and all the paracetamol could have done that and real alcoholics lvls could be in the 500-10,000 mark normal being about 40-80! And was told my Trygliseride lvls were 7.4, which when I looked on nhs site were totally way beyond high, as 0.6 being normal over 2.5 high and over 5 very, very high! I was stunned at their total lack of listening skills and what my results were showing them. I was told that it was incurable, degenerative and possibly fatal, but could be managed with pain relief, I was told that I could turn diabetic and my enzymes could stop working, but this might take 20yrs to happen. With In 6mts I was told I was diabetic type 3c this was irrivesable but with daily injections and a total life style change could be managed. A year and a half later was told my enzymes had now stopped working! Was put on Creon and told if I did not take with every meal an snack would basically starve to death! Was passed on to a proper pancreatic unit 60 miles away and they have been brilliant with me! Was told by them that by the time I was passed on to them my pancreas was so bad there was absolutely nothing they could do except pain management and they were sorry. Was given a CT scan and told no way was this alcohol related as there was no calsification present and was either genetic, trauma or high calcium or trygliseride lvls I told them of the results of my first test and they were quite shocked it had not even been treated with statins! Was told by original lipid clinic they were not treating the excessive high levels "as the damage has already been done I'm afraid" these tests were only taken 8-11mts after first admission with "suspected pancreatitis" by GP! was told my other cholesterol lvls were fine at 5.0 and was nothing to do with diet. He said he would not expect this kind of damage until lvls were 10 or grater, but the second test I had 3/4 mts later showed them as 3.5, so my question was this- if they were 7 with their delayed tests and were half that now, who is to say they weren't 14 at time of first admission???? This bothers me because now I'm severely disabled and can't gel wondering if it could have been prevented had the right tests and scans been done straight away. They now admit they were wrong about it being alcohol related but as 70% is either that or Gaul stones then they did jump to that conclusion, no apologies mind. I feel I have been so poorly treated and my life could be so different now had they listened to me and also followed NHS procedure when pancreatitis is suspected, as there is a 34% mortality rate if not diagnosed with in 48-72 hrs. How could this happen?
