I was diagnosed in June 2018. In May I caught the flu and was really ill for 2 weeks. After that I started getting strange symptoms. I was peeing all the time, I got yeast infections and I was hungry and thirsty all the time. I lost 25 lbs while stuffing my face.
My rheumatologist ordered a battery of tests and my fasting BG was 13, my A1C was 9 and my urine glucose was 500 plus. When the receptionist called me I was in denial- I told her I wanted a retest. I went to see my primary physician and he referred me to an endocrinologist and a diabetic clinic.
I was not able to get in to the clinic for over 3 months so I was left to my own devices until I could get an appointment. As I have hypothyroidism and inflammatory arthritis they were concerned about type 1 diabetes. When I got to the clinic they put me on a very restricted diet which I hated, I was hungry all the time and ate very little to keep my BG reasonable. I was put on Metformin and it helped a little but not how they hoped it would.
I saw the endocrinologist in November and he ordered more tests and told me to add more carbs to my diet and test frequently and if my blood glucose would not stay stable that I would need insulin. I have since normalized my carbs ( not back to what I used to eat but more than I had been eating) my sugars bounce up after I eat and also in the morning. I go back to my doctor this week and show him my records. If he thinks my BG is too high he will call the endocrinologist and discuss adding basal insulin. I have lost 10 more lbs, am still having blurred vision and I have increased protein in my urine.
I hope they get the insulin started before Christmas but I do not know what they will do as my doctor will be away the last 2 weeks of December. I am tired of feeling like crap and being unable to even eat a basic breakfast without my sugars going from 10.2 to. 16.5.
My second A1C was down to 6.5 but that was on a starvation diet. I know it will be back up now that I am eating more. I am struggling with the diagnosis, I do not want to be diabetic. I hate it!
Hi @Wildredhead01 , Jenn, I have moved your post to a new topic, hopefully so it will receive more notice.
Reading your post I am struck by the amount of time since you were diagnosed and little has been done. You were put on Metformin and a diet which tells me that they believe you to be type 2 but from your description that diagnosis doesnât fit.
What stands out the most to me about what you have said is that you have lost large amounts of weight without trying, that to me points to Type 1.
I feel there should be an urgency to your actions, if you are, as I believe, Type 1, the sooner you know the better.
Because I am 48 and a little overweight they automatically went you are type 2 but I certainly do not think it is normal to lose 30 lbs without trying. Over the summer I dropped my carbs but did eat and I just kept losing weight. Before I got the flu in May, I had tired to lose weight and it took a strict diet and exercise to make any difference at all.
They now think I am probably type 1 but I keep getting caught up in the âits a holiday so we have no staff available to see you so can you hang on for a few weeksâ crap!
Canada may have socialized medicine but access remains a problem! I am so tired of not being able to sleep, being itchy all the time, being starving all the time and thirsty!
re: Canada may have socialized medicine but access remains a problem
As a fellow Canadian I share your pain and impatience with our pathetically slow healthcare system.
Iâm not a doctor, however I second guess mine all the time (and I have an entire suite of specialists on speed call).
I just returned from a visit to endo where he told me that despite all my panels being normal (electrolyte, kidney, lipids and thyroids), he was overly concerned that my A1C was too low. He actually told me it was unsafe and I was only his 2nd patient in 22 years to have an A1C in the 4âs. Patient # 1 died in his sleep from a hypo.
Iâd like to think you can find an ER or other endo/GP that will put you on some insulin injections soon.
I live in the U.S. and couldnât get an appointment much sooner than that at the clinic I chose to go to. However I could see a CDE much sooner and took the appointment. I have never seen an endo as a result. I was 67 when diagnosed as T2, lost weight, was tired etc. It was a little over 1 1/2 years for me to get the correct diagnosis and started on insulin. I can email them and get a response the same day.
Sounds like you are type 1, not type 2. You are at risk of DKA. Diabetic ketoacidosis, which can be fatal.
Can your primary start you on insulin? You will likely need separate basal and bolus insulins.
Sorry to be blunt, but this seems like medical negligence.
Would turning up at an er complaining of feeling terrible get you help sooner?
Please look up the symptoms of DKA (Diabetic ketoacidosis)âŚ. if you suspect you are developing it get to the hospital sooner than later.
Some references to get your started:-
Books: Think Like A Pancreas. Diabetes Solutions (this is low carb, but lots of info on meds and using insulin as well).
Bernstein diabetes university on Utube. Also low carb, but lots of info on using meds.
I agree with others that you have symptoms that sound like type 1. You should get an antibody test (GAD-65, IA-2). Also a c-peptide test.
If possible your primary doctor should get your a basal insulin right away.
I was diagnosed in May 2018 as type 1 and started basal and bolus insulin right away. Right before being diagnosed I lost 18 pounds over 2 weeks time.
Since I started treatment I havenât lost weight and feel pretty good.
Being diabetic isnât something anyone wants but it can be managed. It seems overwhelming but you will adapt.
If you start insulin sooner it may slow down the loss of beta cells. Having any functional beta cells is like training wheels and makes managing youâre diabetes much easier.
Jenn you need insulin. I am shocked that you donât have it. My glucose was 800 and I lost 35 lbs before I was diagnosed with type 1. I felt like I was going to die and I almost did. But when I finally went to the doctor after about a month, they called the ambulance and drove me in the middle of the night to the hospital where I stayed for 2 weeks. You need medical attention. You cannot and should not be âleft to your own devicesâ You can not starve, that will also cause high ketones in your urine. You need to check in to a hospital. They will take care of you. They have to. Iâm just saying those symptoms that youâre describing are not healthy and not good for your body or your mind. You are jeopardizing your life. Let me repeat you are jeopardizing your life for no reason. Yes I hate diabetes too, but I donât deny that I have it.
I definitely have functioning beta cells! My problem seems to be that I lack enough insulin to handle meals. This is when my sugar rises really quickly. It will drop as low as 6 mmol/l but the moment I eat something with any carbs at all, up it goes! I then feel horrible, I get thirsty and I feel very groggy and out of it. I have had ketone tests but they always come back normal.
I believe I have type 1 and need insulin. I have an appointment with my primary physician in a few days. My endocrinologist is a really good guy, he has already brought up insulin. They are upset with the lack of care provided in the summer and are in the process of getting me care at another centre. Myself, my husband and family were really upset at how long I was made to wait for care and at how long this is dragging on. I actually got a quick appointment to the endocrinologist, many here wait much longer than me! Due to my age, lack of ketones and the fact that I was a little overweight I was labeled a typical type 2 and put to the back of the list.
I had several indications of type 1 and I do not know why no one took it seriously until the endocrinologist mentioned it on his report. My sugars were much better when I saw him due to the extremely low carb diet I was placed on so I had to up my carbs and test to see if my sugars would swing and they have.
I do not care that it is Xmas, I will be asking my primary to prescribe insulin. I can do the calculations and figure out my basal rate. I was an RN for many years and my husband is medical as well. He is off over Xmas so he would be around if I was to have any hypoglycaemic episodes and he is capeable of injecting glucagon in the rare case it might be needed. I do NOT want to be left to rot until 2019! Six months of feeling horrible is enough!
One more thing ,doctors are now paying more attention to than they have in the past. It is called monogenic diabetes. It means that your body is still producing insulin, but not at the right time. The hormone testing and genetic testing would determine it. It is due to a mutation in one gene. It is rarer than common types of diabetes, but it used to be diagnosed as the more common types. It can be managed by either diet and exercise or insulin and pills. However the insulin that is taken is a lot less. Depending on how your sugars are and how much insulin you take, would be a sign of this or not; how fast your c peptide levels decrease as well. The hormone testing would also show whether or not you are a type1. C peptide tests can be misleading.
I am not happy about the delays at all. I have had a C Peptide but do not have the results yet. My endocrinologist did say that this test can be misleading and here in Canada we do not do the antibody tests without good reason as only one lab in Canada does them ( Toronto, Ontario) I am on the west coast in Vancouver. The sample would have to be put on ice and put on a plane, they are very costly and he said I could be negative and still be type 1. He told my primary physician that I would likely need insulin. Because I was put on such a low carb diet it was confusing to look at my blood glucose- it looked like type 2 so I have been spending this month tracking my sugars and looking at patterns.
I cannot eat a simple bowl of oatmeal with fat free milk and no sugar without going so high I feel horrible. I try to follow a diet but I am so carb challenged that I am continuing to lose weight. My GP commented last visit that he was going to push for insulin as I was wasting away. He did not think I looked healthy. My morning blood sugars are elevated most days. Between 8.5 and 10. That means eating anything is going to push me over 10.
Also they are shocked it came on so suddenly- my brother was just diagnosed with type 2 and his symptoms are totally different than mine. He had no symptoms except feeling tired after eating. No peeing or thirst, no weight loss or itch. He responded well to Metformin. I can barely think or function just from a basic 30 g carb breakfast.
I see my team Thursday and I will have a lot to say. Thank heaven we are medical- I bough Keto sticks when I was diagnosed and I test if I go over 13.0. My highest blood glucose was 16.8 I felt totally like crap.
Thanks for the support- I suspect my beta cells are
in the process of giving up the ghost but a few are fighting the good fight.
You probably arenât losing weight because of a low carb diet itâs because your BGâs are too high and you are starving since your body canât use the energy you are trying to give it without insulin. As soon as your BGâs come into control with exogenous insulin you will start gaining weight without trying. In fact you will probably have trouble keeping your weight under control pretty soon.
Keep safe until you can get some insulin and if you start throwing up go to the emergency room. Itâs hard to believe that you were diagnosed as type 1 and no one bothered to prescribe you insulin.
Btw, oatmeal was something that always spiked me so high that I just stopped eating it since it wasnât my preferred breakfast anyways. You might want to up the fat you are eating with your meals at least for the next few days as it will slow down your digestion enough that your body will be able to handle the carbs a little better.
Diabetes coming on suddenly is classic type 1. Itâs why it is so dangerous for small children since you can lose to much from dehydration. Drink as much water as you possibly can so your kidneys donât get damaged. Good luck.
I hope that you get taken care of. I know how difficult this can be. Insulin can be bought over the counter as well. Itâs a little expensive. The syringes too can be bought over the pharmacy counter. Pills like chromium picolinate, and bitter melon can lower blood sugars a little bit too. Please take care, I wish the best for you. I hope to hear some good news on Thursday.
I was diagnosed at age 57 (13 years ago). and at 58 had a quintuple heart by-pass (due to apparent years of declining pancreas function). Iâve come back strong and have had 13 great years due to the pump AND continue exercising at the gym, skiing, bicycling etc. I am blest for sure. Best wishes to you! Remember: pump, a good diet, regular exercise will be your best tools.
