Suddenly became a Type I Diabetic - Don't understand how

Posted by devanab5 @devanab5, Aug 14, 2018

I am a 23 year old female living in Iowa. I am a mother to a six year old boy & a soon to be newborn baby girl. I haven’t been diabetic until 4 years ago & not just diabetic type 1 diabetic. I got pregnant with my son at the age of 16 & the pregnancy was not what I had seen on tv. I gained about 100lbs along with preeclampsia as well as gestational diabetes. I had my son at 34 weeks he was an 8lb child but a premature child as well. I weighed about 280lbs after birth. I was told my gestational diabetes was “no longer a concern” a month or so after I gave birth. Now fast forward 3 years later, my son is now the age of 3 and I am now 19. Raising my child, working at a gas station, and living a not so bad life. I start to get “the flu” I believe but this “flu” happens on and off for a year and doctors in the ER tell me that it’ll pass. I am home one night my son is sleeping I start to get unbearable cramps in my legs that don’t stop then came the vomiting. I drink some water and go to sleep. Weeks pass and I am sleeping a very not normal amount and begin to not remember a thing as well as not being able to tell you what you told me fifteen minutes prior. Now one day I am napping with my son before a shift and I wake up to his father standing over me screaming that I was late to work why won’t I wake up. I’m not sure what was going on but I jump up get dressed drive to work. I get there (don’t know how I drove still to this day) opened my car door smacked my face off of it walked in and told my boss “I don’t feel ok” she told me I could leave if it was bad. So I did (also don’t know how I drove) and went to the ER, again. I get in I remember being rushed back to a bed in a drunk like state. This part is all very foggy now but after hours of blood work and blood gas etc I am told my sugars are in the thousands how am I alive.... I’m hooked up to Ivs and rushed to the ICU. Spent a couple weeks in this room being filled with information that I am a type 1 diabetic in DKA and I am very sick. I am so confused, upset, and lost. Nothing made any sense at all. I had lost 100+lbs by now and look terrible. Can’t eat rather just sleep. I had antibiotics, fluid, potassium, shots, insulin, and lots more tests. But still I was confused. I am now 23 years old and weigh about 180lbs I am 31 weeks pregnant with my daughter. My sugars are better but never great. I have had mrsa over 20 times, my gallbladder removed, a hernia repair, and much more. I want to know how I all of a sudden became a diabetic and when will the depression get better. When will it be easy to give myself shots all day. When will people stop making diabetes NOT a scary thing?

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@devanab5 Oh my goodness, you certainly have been through a lot. I have no idea how you would become a type 1 diabetic suddenly, and the only advice I can give you is to make sure you are seeing a really good endocrinologist. I had one I really liked, and apparently everyone did -- he always had a five star rating and the other doctors I know think he's great too. He moved to a different area, about 45 - 55 minutes away so I have decided it's worth the trip to resume seeing him. I just don't have that much faith in the other endocrinologists around here. Since he left I have used my PCP, a doctor of internal medicine, for my mild diabetes and thyroid but I have no confidence in him.
I hope you find some answers and can get your medical issues under control. Please keep us informed, we do care.
JK

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Hi, @devanab5 - I wanted to add my welcome to @contentandwell's to Mayo Clinic Connect. I'm sorry to hear all you've been through. I am glad, for you and your baby with whom you are pregnant, that you did get the help you had at the hospital and finally got this diagnosis. Hoping the clarity is helpful, though I can hear in your post that this has all been very hard.

I'd like you to meet some others who've talked about Type I diabetes on Connect, like @tridans @2011panc @myqbrook @brendisha79 @cehunt57, who may have some input on people making diabetes a scary thing and when it will be easier to give yourself shots every day. They may also have some experiences to share about how someone like you could all of a sudden be diagnosed with Type I diabetes and the depression you've experienced.

Wondered how you are feeling and how it's going with your sugars, @devanab5 ?

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@devanab5 I am sorry to hear of your induction into the world of Type I Diabetes. I know from your story that you were on the cusp of diabetes at least during your first pregnancy, if not before. The excessive weight gain during pregnancy, preeclampsia, high weight of your baby and early delivery are all parts of being a diabetic mother. I am angry that you were told your gestational diabetes was resolved without being given any further diabetic information. You should have been continued to be followed for diabetes at every follow-up visit, which should have occurred no less than every 6 months. This knowledge has been available to medical personnel for more than 10 years. It is also inexcusable to me that none of your ER visits discovered this diagnoses or at least pointed out the possibility of it.
The good news is that after the birth of your son you lost 100+ pounds. This obviously kept your diabetes well enough in control until your second pregnancy, when it took over again. The bad news is that you were probably in ketoacidosis during the time you were losing the weight. One thing that happens when you have uncontrolled blood sugars is that the body cannot convert the calories you eat to calories you can burn. Your body starts burning your fat resources as the food you eat passes right through your body with no nutritional benefit. The burning fat creates the ketones; too many ketones and you are in ketoacidosis. The only symptoms I had that you do not describe were excessive thirst, excessive hunger, more than doubling my caloric intake, and losing 5-10 pounds a month, and excessive sleep. I was exhausted going to bed and still tired every time I woke up. If I took a nap I woke just as tired as when I laid down. I did not want to be accused of being lazy so I just kept pushing myself through.
The "flu", vomiting, leg cramps, oversleeping and lack of remembering are all signs of your loss of insulin coverage. You truly are blessed to have lived through a blood sugar of over 1000. That number means much more when you know that a normal blood sugar is 60-80.
I learned the stages of living with diabetes are the same as the stages of grief: denial, anger, bargaining, depression and acceptance. Good deal for you; you are already through the first three! Congratulate yourself on every step you take, no matter how small. Relief from your depression and acceptance of your diagnoses will come when you are ready. You have suffered a deep loss, your health, and are grieving that loss. You have a right to be depressed. I believe that your depression will lift and your acceptance grow as you learn how to care for yourself and start to feel better. For myself, I had no problem accepting the shots. I started feeling better within 3 days of insulin therapy and that encouraged me to be diligent with my selfcare.
I believe you will find, as I did, that the majority of people do not understand the nuances of diabetes or the differences between Types I and II. You can become an educator simply by not hiding your disorder, discussing it with curious people and refuting untruths as you hear them.
My best wishes and prayers are with you constantly. I was Type I for nearly 40 years and difficult to control. My blood sugars were always erratic, no matter what I did to try to control them. Hopefully it will not be that way for you. My diabetes ended when I had a Pancreas transplant in 2011. Hence the name Panc2011.
Feel free to contact me with any questions or comments you wish, either on this page or privately. If you use this page, please mention my name so I am sure to see it and get back to you. I have a full and busy life do not check in everyday but always read my messages within a few days. Blessings.

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@devanab5 You have a tough row to how. However, there are some things you should know that I have picked up from your posting. First, I suspect there is or are some systemic disorders causing a lot of your problems. You have evan in your name which reminds me of Evans, my name. There are a small number of disorders This bloodline shares. They seem to have started or at least come to us through Finland or Iceland, then Normandy or Portugal before 1000 AD. Then Wales, Ireland, America, central states (Mississippi, Missouri, Iowa, Kansas, etc.). One mutation is called "Gelsolin", and it shows up any time in life, usually later than you are, but not necessarily. The other big one is called "Evans Syndrome". Both of these have many of the issues you speak of. I, too, have many of the issues. You can find them both on Mayo.org in their literature and videos. They are forms of Amyloidosis, Light Chain. My problem is a second opinion which of these I have, if not both of them. Anyway, Mayo would be a great place for you to go to be checked out for both of them. The reason I suggest you check them out is that very few local Drs know enough about either to make the diagnosis. I will be going either to Mayo or to Anderson shortly to try again to ID which I have. https://bit.Ly/1w7j4j8 , Amyloid and Old Karl Oh, and I will not try to sell you anything, no matter what.

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I’m sorry I have taken so long to reply. I’ve went into preterm labor and the doctors have stopped it so things have been a mess lately. Bed rest is the worst. Also my six year old started school he’s a first grader now I’m amazed. But anywho. My depression is no better if not worse but hormones play such a large part in that. I’m planning on going back on lexapro once my baby is born. It helped a lot and I wasn’t suicidle like I was. As for my sugars and the start of it all, I was in DKA more times than I can count I also can admit I became addicted to the weight loss it gave me. I’m a very very self conscious person and I’m told I shouldnt Be But we are told things all the time and never listen. I’m just hoping I don’t get off track once I’m no longer pregnant things have gotten simpler since this pregnancy surprisingly I have had really good management with my ob. He has me on humalog and novoln n. I will forever struggle with being type 1 because it’s still so new to me. I have no good decent doctors around me. My car is not in the best condition and money is a problem. So traveling is a dream at this point in my life. I’d love love so much to be seen by a good doctor who cares to find out about my story and help me understand things! But life is life and here I am. Thank you for the replies.

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@devanab5

I’m sorry I have taken so long to reply. I’ve went into preterm labor and the doctors have stopped it so things have been a mess lately. Bed rest is the worst. Also my six year old started school he’s a first grader now I’m amazed. But anywho. My depression is no better if not worse but hormones play such a large part in that. I’m planning on going back on lexapro once my baby is born. It helped a lot and I wasn’t suicidle like I was. As for my sugars and the start of it all, I was in DKA more times than I can count I also can admit I became addicted to the weight loss it gave me. I’m a very very self conscious person and I’m told I shouldnt Be But we are told things all the time and never listen. I’m just hoping I don’t get off track once I’m no longer pregnant things have gotten simpler since this pregnancy surprisingly I have had really good management with my ob. He has me on humalog and novoln n. I will forever struggle with being type 1 because it’s still so new to me. I have no good decent doctors around me. My car is not in the best condition and money is a problem. So traveling is a dream at this point in my life. I’d love love so much to be seen by a good doctor who cares to find out about my story and help me understand things! But life is life and here I am. Thank you for the replies.

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Hi, @devanab5 - good to hear from you. I'm so glad the doctors were able to stop your preterm labor. Sorry to hear you are now on bedrest. You have sure been through a lot.

Glad your OB has really managed things well and is keeping an eye on your diabetes.

That would be a huge change with suddenly finding out you are Type I diabetic, and I think that @2011panc has shared some wise words from personal experience about your going through a grieving process with all of this.

I'm sorry to hear that depression is a challenge right now. Hoping you are in touch with your OB on that so he/she can help and support you.

I also wanted to mention there are some threads on depression on Mayo Clinic Connect you may want to look at and consider participating in:

- on depression, https://connect.mayoclinic.org/discussion/depression-3/bookmark/?ajax_hook=action&_wpnonce=dac05772fa

- on long-term depression, https://connect.mayoclinic.org/discussion/long-term-depression-1/?pg=37#comment-118342

I recognize you said you don't feel you have good, decent doctors around you. Since your OB has provided really good management of your health, however, I'm wondering if perhaps you might ask if he or she might have a recommendation for a doctor who can see you for your diabetes, help you understand things and walk with you through your condition when you are no longer pregnant?

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@devanab5 it is about a month since you first posted. I’m sorry it took so long for me to respond. I’m Cheryl @cehunt57 that Lisa Lucier mentioned on 8/24/18. I’m glad that others she mentioned got back to you sooner than I did. This site can be a good source of info and support. By now have you delivered your daughter? I hope that went well. It is not easy being a new mother, especially a diabetic one with another child to care for as well. Any type of diabetes can be challenging at times. Having a good Dr. or team of Drs. is important. I’ve learned that uncontrolled diabetes can lead even worse complications over time. Plus “normal” illnesses & ailments (like a cold) can complicate diabetes. The main thing is to learn all you can and take care of yourself as best you can. You need to and your family needs you to. I know. I’m 61 and have been trying to do this since I was 18. I’ll be keeping you in my prayers and hoping for the best for you and your family.

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@cehunt57

@devanab5 it is about a month since you first posted. I’m sorry it took so long for me to respond. I’m Cheryl @cehunt57 that Lisa Lucier mentioned on 8/24/18. I’m glad that others she mentioned got back to you sooner than I did. This site can be a good source of info and support. By now have you delivered your daughter? I hope that went well. It is not easy being a new mother, especially a diabetic one with another child to care for as well. Any type of diabetes can be challenging at times. Having a good Dr. or team of Drs. is important. I’ve learned that uncontrolled diabetes can lead even worse complications over time. Plus “normal” illnesses & ailments (like a cold) can complicate diabetes. The main thing is to learn all you can and take care of yourself as best you can. You need to and your family needs you to. I know. I’m 61 and have been trying to do this since I was 18. I’ll be keeping you in my prayers and hoping for the best for you and your family.

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@lisalucier, I’m so sorry. I see that spell checker/auto correct changed your name to “Lucifer”! What a terrible and ironic thing to have happened. I apologize, please forgive?! Cheryl.

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