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Shocking story, what kind of a situation am I in?

Discussion in 'Type 3c (Pancreatic) Diabetes' started by KingXi, Apr 12, 2020.

  1. KingXi

    KingXi · Member

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    Hi guys,

    I'm so thankful there is a forum where I can share my story with people dealing with the same disease as me in both Pancreatitis and Secondary Diabetes.

    I mostly have questions in regards to my Secondary Diabetes but also would like to share my story of how I got here.

    My Story.

    I'm at 28 year old male who was perfectly healthy as of 7 months ago, I got a pancreatitis attack out of nowhere on a beautiful Tuesday evening in September, it started off as a normal stomach ache after I had eaten a peach (possibly an allergic reaction) which ended up progressing and about an hour later turned to severe 10/10 pain above the stomach area which I had never felt before.

    Got hospitalized. Unfortunately the pain was not improving weeks on and as the tests continued I was told I now have a "cyst" which I will require surgery for.

    Had surgery in October to remove the cyst, 9 days hospital stay and got discharged from the hospital.

    Life went on... then got a 2nd attack a few months later, recovered with time and liquid diet and no further intervention, during this hospital stay found out I'm diabetic.

    Something didn't seem feel right, I got discharged, contacted the hospital where I had the surgery and ordered all the doctor notes+surgery reports/scans, my reports showed along with the pseudocyst I also had pancreas necrosis and that a pancreatectomy was also completed during my surgery.

    I was not told about the necrosis which they knew of before the scheduled surgery according to my reports or the pancreatectomy, not before the surgery nor after during my post surgery hospital stay, I had a follow up appointment with my surgeon a month later post op and nothing from him either (at this point I did not yet have my 2nd attack and did not know the above).

    I booked a 2nd appointment with the surgeon, one of my questions to him was why wasn't I told? the question he asked me was do I not have a family doctor? What he was saying was that it was my family doctor's responsibility to monitor my blood sugars and apparently it was also my family doctor's responsibility to tell me I had a certain body part removed (pancreatectomy). For those wondering my family doctor's didn't make me aware either.

    If I didn't get my a 2nd attack I unfortunately would not have found out about the severity of what was done to me.

    Diabetes+Questions.

    I requested for a A1c test after finding out I was diabetic during my 2nd attack hospital stay, this would be about a little over 3 months after my pancreatectomy, it was 6.9%.

    I have worked with my endo to further diagnose, currently I'm taking Tresiba at bedtime to bring my fasting levels below 7 mmol, I currently do not require digestive enzymes, episodes of hypo and hyper have not been evident at the 7 month post mark.

    I have understood diabetes is a disease which progresses, I would love to hear your experience, get your opinions as well as expectations or assumptions as to what kind of a road I'm in store for?
     
    #1 KingXi, Apr 12, 2020 at 11:55 PM
    Last edited: Apr 13, 2020
  2. Walking Girl

    Walking Girl Type 2 · Well-Known Member

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    Goodness. I can’t even comprehend having part of your pancreas removed and not being told!

    I’m a classic obesity induced T2, so of limited assistance. However, I think one step is insisting on a fasting, and stimulated if you can push for it, C-peptide test which will tell how much insulin the remainder of your pancreas is producing, and generally thus, if you can diet and exercise control for now or need insulin off the bat. I read some fascinating studies when first diagnosed and it all seems to depend on how many Beta cells you had to begin with and how many were removed. Some people had 25% removed and needed insulin, others had 75% removed and were still OK.

    also, for all of us of any type, reduce insulin resistance as much as possible via a high quality diet, regular exercise and maintaining a healthy weight is important.

    Edited to add: duh, you already said you are on Tresiba, so you are on insulin. Regardless, a C Peptide will tell you how much indigenous insulin you are producing still.
     
    • Agree Agree x 1
    • Winner Winner x 1
    #2 Walking Girl, Apr 13, 2020 at 1:15 AM
    Last edited: Apr 13, 2020
  3. EllieM

    EllieM Type 1 · Well-Known Member

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    Not sure it has to progress in your case. Obviously you're still producing some insulin, it's not clear to me that that production has to reduce further, given that the deficit is caused by surgery rather than disease. I would have thought that the fact that you don't require digestive enzymes is promising, your pancreas is still doing some things properly. And maybe you can make the insulin you have suffice if you lower the carbs in your diet???

    In your position I'd want to know the cause of the pancreatitis and whether there's anything you need to do to avoid a recurrence. Hopefully your endo can discuss this? (All I can find from google is gallstones and alcohol moderation.)

    I agree with @Walking Girl that more tests, particularly c-peptide, would help to discover more about your condition and its diabetic implications, I would hope that your endocrinologist is already doing this. Most important, you need to know what to do so as to avoid a recurrence of the pancreatitis.

    And yes, it's shocking that you weren't told any of this before.

    Good luck.
     
    • Like Like x 1
  4. KingXi

    KingXi · Member

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    Hi guys I appreciate the advice, I did have my C-Peptide done about two months ago.

    My results were 1.22 nmol/L for C-Peptide Final and Insulin Final was 58.0 pmol/L.

    They took these numbers and coordinated them with my Glucose Fasting which was 8.6 mmol/L and put me on tresiba.

    Do these numbers give a better picture of where I'm at and where I'll be in the future?
     
  5. KingXi

    KingXi · Member

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    I should add that my surgeon, hospital team, endo, and family doctor all have no idea why I have gotten 2 attacks.

    I have no family history, non smoker and drinker. Unfortunately not what I wanted to hear but I can only do what I know of just, just cautious with the stuff I put in my body.
     
    • Hug Hug x 1
  6. Tophat1900

    Tophat1900 Type 3c · Well-Known Member

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    Here's a link for ref range of c-peptide.

    https://www.diabetes.co.uk/c-peptide-test.html

    Based on your numbers it seems you are higher then the normal range, I assume you have a copy of the results. And one of us isn't confusing the different measurements used in the different countries? I'm assuming the c-peptide was done fasted?

    Your fasting blood glucose is high, I'm wondering if they put you on tresiba for that reason?
     
    • Like Like x 1
  7. Honeyend

    Honeyend · Well-Known Member

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    I have Type 3C, due to necrotising pancreatitis, on my first scan it says it was totalling necrotic, and I had a 1.5 litre pseudo cyst drained and then it drained further over four weeks.When I had my stent removed they removed necrotic tissue at the same time and sucked out some more gunk. I didn't ask if the necrotic tissue was my pancreas, sometimes I'ed rather not know.

    I was discharged on NG feeds and insulin, I tell you all this because it can get better. As soon as I was discharged I weaned myself off the feeds, some mornings, my BG was 14, and went high protien low carb, which enable me to heal but also get my BG down. I must have some fuction left in my pancreas, and I think giving it a 'holiday' has helped, so my last HbA1C is 42, so I am not on any medication.
    Your body will take a while to settle, I had months when I was like an old car, and had a lot of pain, I couldn't sleep laid down for five months and slept in a chair, I couldn't walk very far, I had a frame and I couldn't go upstairs.
    You go through the foods that agree with you, and I literally lived on chicken curry and a spoon of rice for months, and I eat basically the same diet every day and add a new thing 'just to see'. I eat a lot of nuts, because they are full of good stuff and never eat bread or cereals.
    You need to make sure you are treated in under the 3c, standard of care.
    https://www.nice.org.uk/guidance/ng104/chapter/recommendations#pseudocysts-2

    The only way you find out if you are producing some insulin is tests, which I haven't had and will probabely have to pay for, I would keep testing your BS, and stabilise it by eating stuff that doesn't make it spike, and only you can work that out. I live by the rule of 10's,if a portion is less than 10 carbs I will try it, and try to eat not more than 20grms in one meal. I have just had a bacon sandwich in low carb bread for lunch, so its not that tough.

    My pancreatitis came out of the blue, I had a stone in the duct, so there is a chance I could get it again, but you can only manage so many things, so every day I wake up is a bonus, I was given a 50/50 chance of surviving. I didn't even know I had gallstones, so like you it came as a shock. There are a few people that they never find the cause for it. I was on a lot of pain relief and if you can reduce what you are using I would do it because in the long seems to cause problems, and I was much better once I stopped taking lots of pills.
    I walk about 7000 steps a day, muck my cows out and was back shopping before CV, and was thinking of trying to go back to work. Its been a long slog, and its easy to get bogged down with what if, you can only control what you do, and you are always the expert in you, you just have to spend some time working out what works for you. If you control your BS, eat wisely, there is no reason why you should get diabetic complications.
     
    • Winner Winner x 4
    #7 Honeyend, Apr 14, 2020 at 2:16 PM
    Last edited: Apr 14, 2020
  8. KingXi

    KingXi · Member

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    Yes, I'm actually not in the UK, next to my result of 1.22 nmol/L it lists the Range which is 0.30-2.40, the test was indeed done while fasting.

    Also, you're right the high morning numbers is the reason they put me on Tresiba.
     
  9. KingXi

    KingXi · Member

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    Thank you Honeyend, IMO you shouldn't of had to ask them, it is the hospital's responsibility to tell you what it was that they removed or didn't remove.

    Surely if it wasn't your pancreas necrotising then your diabetes is not due to a pancreatectomy if my knowledge is correct, it would of been caused by the pancreatitis attacks themselves?

    Atleast they bothered to monitor your Sugar after they drainage and discharged you Insulin.

    I had necrosis as well according to my hospital visits before the surgery, I was not told this, I was told I have a Cyst which required drainage, that's part one.

    Part two is, You had both necrosis and cyst and only needed drainage? I have a 9 inch incision on my stomach, they did an entire surgery on me when I was told all that was going to be done is drainage.
     
  10. Honeyend

    Honeyend · Well-Known Member

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    I was really lucky that I was treated in a specialist centre, so I was able to have the cyst drained by endoscopy where a stent or tube is put in to the stomach wall, and the contents of the cyst drained at first by suction, the 1.5litre. This is instead of opening up the abdomin and a cutting the stomach.
    https://europepmc.org/article/PMC/6650228

    The stent stays in so over the next three /four weeks the rest of the cyst, which tasted like rotten eggs, to drain, then when the stent was taken out, again by endocscopy and tidied up, thats when they took out the necrotic tissue. Like I said I didn't ask if was part of my pancreas,because I was so relieved that I was feeling already much better, probabely the happy juice, I just cried. I had five weeks at home on NG feeds so, not eating the pressure inside was painful but a bit like a boil, it had to come to a head so they knew where to go through the stomach wall.
    If they thought you had pancreatic tissue that was necrotic, they would remove it, it would be a source of infection, they wouldn't wake you up to ask you. The consent I signed covered just about everything, I had to be X-matched for blood in case they went through an artery, and usually a consent form covers surgery they think as essential at the time of the operation.
    They can only see so much on CT, there may be more or less damage than they thought and perhaps they thought it was better to 'open you up'.
    This chap,http://www.cambridge-pcc.org/team_nicholas.html
    and a Professer from Glasgow did mine as a teaching video, I was fully knocked out so I didn't get to watch.
     
    • Agree Agree x 1
    #10 Honeyend, Apr 16, 2020 at 6:44 PM
    Last edited: Apr 17, 2020
  11. KingXi

    KingXi · Member

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    Hi Ellie, I'm curious to know if there are studies or research done that mention secondary diabetes doesn't progress. May I ask if there a particular reason which makes you believe I may not see a rise in the future?
     
  12. EllieM

    EllieM Type 1 · Well-Known Member

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    I am just applying non medical logic. T2 is caused by a metabolic disorder, T1 by a progressive autoimmune response.

    T3c is caused by damage to the pancreas, so if you don't see further damage (I realise that may be a big if) I don't see why your insulin producing cells have to decrease.... All my googling suggests that progression is caused is due to the damage caused by chronic pancreatitis... If you can avoid pancreatitis then you hopefully avoid further damage, but I am not a doctor.

    Good luck.
     
    • Agree Agree x 1
  13. swampy949

    swampy949 Type 1 · Member

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  14. swampy949

    swampy949 Type 1 · Member

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    hi my name is iain and after dinner at my daughters I woke up the next day with sever pain in my stomach. They rushed me in only to find I had gaul stones and one was blocking a tube to the stomach so I had an oprtation to remove the stone. a week later I was rushed in with more pain which I found out the gaulstones had damaged my panciates badly and it was'ent pumping out any insulin. I was rushed to icu 3 times and nearly lost my life twice. This has left me with no pancreas and bload sugars are uncontrollable. I lost my HGV liecence and my job and also have depression. Everyone says look on the bright side but I feel what bright side?
     
    • Hug Hug x 2
  15. Dalkeyboy

    Dalkeyboy Type 1 · Member

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    I sympathise with your experience. What amazes me though is your acceptance of medical practice and communication which clearly fails even the most basic test of what is reasonable. Up to you but on many levels (eg the NHS Constitution requires letters from consultants to gps to be copied to patients) the Service has not met acceptable standards of care and should be held to account legally. Any action of this kind is not mercenary; sometimes it's needed to safeguard patients in the future.
     
  16. EllieM

    EllieM Type 1 · Well-Known Member

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    I am sorry this has happened to you and I'm not surprised that you feel depressed. T1 diabetes is not something I'd wish on anyone, but the plus side is that insulin is available to keep you alive. Not sure why your hospital have told you that your levels cannot be controlled, as most diabetics can (eventually) learn how to balance their insulin and diet. It is not something that you can do quickly, because everyone has different insulin needs, but things should get easier as you get used to testing and injecting.

    Maybe start your own thread for advice on control? We can't recommend insulin doses but we can comment on technology (eg a continuous glucose monitor can be used to warn you if your levels go too high or low) and on general ways to cope.

    Depression is common in society, and unfortunately diabetes is a common trigger to instigate it or make it worse. But there is a lot of mental support available on these forums, and you are not alone. (Not sure about the rules for HGV licenses, but I think some T1s do manage to keep them if they get their levels under control.)

    Good luck.
     
    • Optimistic Optimistic x 1
  17. KingXi

    KingXi · Member

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    I did consult a legal team, I would have a very strong case....except the fact that I did not face any injured due to the negligence.

    The rule where I'm from is it's considered malpractice only if the lack of standard of care causes an injury, in my case no physical injury was caused if you realistically think about it, so unfortunately no case.
     
  18. HSSS

    HSSS Type 2 · Well-Known Member

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    Not even lack of informed consent or being told after the event what surgery had been done to you without it!!! You certainly would have incurred harm if you hadn’t accidentally discovered your need for insulin. I’d be looking for a second legal opinion before giving up if that’s the route you wanted to take. You’re proof that “professionals” don’t always get it right the first time. Even if you don’t want to go down the prosecution route a formal complaint via the hospital is more than in order.
     
  19. KingXi

    KingXi · Member

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    I brought this up to the lawyer I was contacting and her response was malpractice is not about what would or could of happened, its about what injury in reality happened.
     
  20. HSSS

    HSSS Type 2 · Well-Known Member

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    Beg to disagree about making a complaint with the hospital - about their lack of informed consent and especially communication after the event of what needed to be done in surgery. Even if it was fully medically justified you definitely should have been told of organ removal and their procedures need to be reviewed (as opposed to legal case of malpractice and injury)
     
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