Hey everyone. I got diagnosed at 15 with t1d and I went to exactly 4 doctors in my home country and all have done the same thing with me. They would give me a diet ( it made me gain at least 20 pounds) and insulin doses on them and whenever I ask them to give me the method to calculate my doses they reject. I am not sure what to do since I fell in this deep hole of depression about my weight, I live in Dubai and I have to wait at least 6 months for insurance. Is this normal? What did your doctor give you?
hello @Lost1d Mariam and welcome to Type One Nation. Type 1 diabetes is a disease where the person has to be their own doctor. I have more than 40 years experience and I have found that one of the first things I had to do was take complete control of insulin for myself.
There are great references, books like “Using Insulin” and “Think Like a Pancreas” and Helpful eating/insulin information such as “Dr. Bernstein’s” which can help , inform, and encourage you to take over your own primary care and teach you how to determine your insulin requirements.
There are very practical ways to figure out how much insulin you need, based on your blood sugar, and based on what you are going to eat, and based on your level of activity. Weight loss (or gain, if that is desired) is possible with Type 1 diabetes but your very first goal is to control your blood sugar. Do you have a blood sugar meter? Do you test before each meal and at bedtime?
I am afraid I know nothing about what would be “normal” in Dubai, as my experience is only the USA and a few places in Europe. I am glad to see you found our forum and I hope you can find some help here as our members have many years of experience to share.
Hello @Lost1d and it is very nice to meet sunshine from Dubai. I don’t know anything about medical care there, but it is important to find a doctor who has special training in diabetes. Sometimes people go to their family doctor or a general practitioner, who may mean well but doesn’t understand the disease and therefore does not understand how to determine doses (which involves some trial and error at first) and carb ratios, both of which are essential in managing it. Endocrinologists study diabetes as well as other disorders, so if you look for one make sure that is their specialty.
One thing I’ve found for myself - which may not be true for you but I wanted to share - is that weight gain may mean I am getting too much insulin (!). The snacks I take in to bring up my glucose also add to my weight so I have to make some adjustments. Changes to insulin regimens should be made gradually and with caution.
You didn’t say how long you have had diabetes or give any details about how you treat it, so I urge you to find a specialist who will partner with you in managing your diabetes and your weight.
Please keep us posted!
Hello! Thanks for the information, I am 16 right now and I got diagnosed 2 years ago:( I have been trying to convince my doctor to teach me how to calculate my doses but he refuses and demands me to eat 2 breads a day with 5 spoons of rice and my body type is in the bigger side. I ahve went to nutritionists who in result fear to give any diet with t1d. Is there a way for me to learn how to calculate them without going to a doctor? I was considering to get a pump but It’s too expensive for my parents.
I had another question, I have been struggling to tel others about my disease publicly , you see I was quite slim before but gained weight after diabetes and I am now obese. I fear that if I tell others about my diabetes they would think it is because I ate a lot or due to lack of exercise. How to overcome this? It tears my heart every time I say t1d to anyone. Even though it’s not my fault that I got it. And everyone in my school loves to gossip. I don’t know how to live life anymore…
I am not a doctor so cannot give medical advice. Again I don’t know how the medical system in Dubai works but you really need to find an endocrinologist who can help you manage your diabetes. Once we have the knowledge and tools we should be able to make some adjustments on our own, but you need to be at a good starting point.
You have mentioned your weight but nothing about how your blood sugars are, or how they respond to your meals and insulin (not to mention other factors such as stress). That’s your starting point when it comes to making adjustments.
One thing I can share, as a person with diabetes and one who is NOT a medical professional: I started eating “Mediterranean style” the beginning of the year, and it has helped with weight loss. I eat some bread but not a lot, and when I do eat rice I keep my serving size very small. I’ve cut back a lot on meat, generally eating more vegetables (which I was lacking before). I’m sure you know there’s more to the Mediterranean diet than that, but I just wanted to share a little about what I’m doing.
Your doctor’s eating recommendations remind me of what we “very experienced” diabetics once knew as the exchange plan, which was a very strict diet where you ate designated quantities of specific foods - and the list of foods was short. Now we count carbohydrates - there are apps and resources that help you there - and once we know how many grams of carbs are covered by each unit of insulin we can calculate how much insulin we need for a mask or snack.
I’m sorry - I use a pump while you shared that you take injections. There’s nothing wrong with that - some people do fine on shots and not everyone wants to use a pump. But since I use a pump I will leave guidance on injections to others on the forum.
I hope you find a way not to feel bad about your weight. It’s a very sensitive subject, especially for someone in your age group, and it’s very sad that people in school like to gossip. Remember, beauty is in the eye of the beholder and not everyone wants to be with someone who is skinny as a rail. My husband says he loves to see me eat and he loves my curves! When people gossip about someone because of their weight or whatever, it says more about them than about you. Your true beauty is on the inside. Take care of the outside for the sake of your health, but if you like the way you look don’t let the opinions of mean bullies force you to feel badly. That may not mean much now but yuck the thought away - I hope you will find it helpful.
You appear to be a sensitive person from what I have read in your post. There are plenty of mean people around - the world needs more people who are sensitive like you.
I hope you are able to find the medical care you need. I’ll be praying for you.
Thanks a lot ! My blood sugars are between the 200s and 300s daily , I try my extreme best to keep them stable as I don’t have insurance right now. It sucks to have so much pressure on my family like this. I do have plenty of stress since I am taking IGCSE this year and I get angry very fast as well. Thank for your comfort about loving myself . I ahve tried to bled in a lot but my mind doesn’t allow it . I try m best to forget about diabetes and remind myself that I aM me with or without it.
What is IGCSE? It sounds like it’s going to be intense, whatever it is!
I hope in time you are able to come to terms with your diabetes. It’s something we will have for a lifetime so we need to learn to make the best of it. Many people with diabetes live very fulfilling lives, so whatever your hopes and aspirations are don’t let it stop you. Having diabetes did not mean you’ve done anything wrong or that you need to be ashamed of. Sometimes it’s hereditary, and sometimes an illness or accident causes it to “rear its head” but it’s not likely you did anything to bring it on. I suspect that we in the diabetes community assume (I know I do) that people in general have a good understanding of it, but that’s not necessarily the case. They may think you brought it on yourself, or will lecture you about food choices even though they barely know you, and simply make comments that show they really don’t know much about the condition. So when they see people enjoying life, going through their day to day, whatever that might look like - and then pull out a pump, CGM, or glucose test kit - it can open opportunities for learning if you choose to share.
Thank you so much for the help! IGCSE is a Cambridge board exam so I stress easily. Thank you so much for your support it send a lot!
It does sound intense. I’ve never taken any boards myself but everyone I know who has, has said how stressful it is. You (they) dedicate most of their time preparing but it’s worthwhile - not to mention a huge relief - to be done! When do you take yours?
Actually I am not sure yet with the whole Coronavirus thing going on. It was supposed to be in May but they cancelled it so I may take in October or have a predicted grade in my certificate. It is quiet stressful right now about everything as well as being more anxious having t1d because we are more vulnerable to the disease. I hope no t1ds get it though🙏
Now that I think about it, that was a silly question under the circumstances😆 - I hope you got a laugh out of it. May I ask what you are getting your certificate in? Congratulations!!
Thanks a lot ! Actually I am taking the science stream as well as travel and tourism and I hope it goes well. I just discovered this community is there an app for it? For easier communication ? I never met a t1d before … it’s my first time actually and it made me realize I am not alone. To be honest, here in the Arabian gulf some people are close minded and my aunt thinks if I told anyone that I have t1d no man will marry me. And of course that’s wrong but because of this I always get afraid to tell anyoen my secret. My dad supports me though , you’re lucky you don’t live here😂
I’ve heard that attitude exists in some more traditional cultures. I’m glad your dad supports you! Since it sounds taboo to let people know about the diagnosis I wouldn’t be surprised if there were more people around who have it, and you just don’t know. But culture is what it is and you know best how to navigate it where you live.
My husband didn’t mind at all when I told him. We might have gone out to lunch and either I pulled out my insulin pump and told him what it was, it I may have excused myself to go to the restroom, explaining that I was diabetic and needed to check my blood sugar. Turns out his mom was diabetic, although she was Type 2.
This will sound odd, but in a way having a medical condition when you meet someone can be good. If they decide they don’t want to be with you because of it, it tells a lot about their character, and the same is true if they’re willing to support you. I’ve heard of instances where a spouse left when their partner was diagnosed with something (not necessarily diabetes) - what a jerk! So I think it can be a blessing to weed people out early.
Since you don’t know any other Type 1s (as far as you know) do a search for “friends” in the forum - there are always people looking to connect with people in their age group who share diabetes.
JDRF has a health and fitness app but I don’t think the forum is on it.
I’m guessing you have studying to do and I don’t want to distract you! Stay well!
Thank you so much! You are absolutely right and speaking facts. T1d can definitely help sometimes to weed out all fake people. Thank you so much for helping me, god bless you. You don’t know how much it means to me:heart:
Hi @Lost1d! I was going to say “good morning” but while it’s about 6am here I don’t know what time it is where you are.
Praying blessings for you today in your study and your health. I believe earlier you said your blood ran around 200-300. In Europe they use the mmol scale (I hope I got that right) and in the US we use mg/dl; and speaking very generally, mg/dl readings in the low hundreds are ideal, mid hundreds acceptable. You may be on a different scale, but if you use MG I urge you to find a doctor who can help you improve your numbers. Your dad supports you so he may be able to help find someone, and even go to visits with you if you want.
You’re relatively new to this, and the medical advice you have been getting sounds rather like the way things were done many years ago. The doctors you have seen may mean well but maybe are not on board with developments over the years. So don’t try anything drastic, but see if you can find someone more current in diabetes treatment, and who is willing to educate you and answer your questions so you can understand and manage things on your own. We want to make sure you are healthy in general, and have plenty of energy when you go take those boards!
I think someone mentioned the book “Think Like a Pancreas.” I got a hold of a copy printed several years back, but a new edition is coming out in a few weeks, so keep an eye out. I hope you find it helpful. Stay well - hey, you’re my first friend in the UAE!
thanks alot for your help! actually being in a financially unstable family is quite hard, both of my parents work and i hate to pressure them to buy me medicine or insurance to go to a doctor. The healthcare here is really bad, i should wait 6 months for my insurance to be activated to go to a diabetes clinic. I will read the book you recommended to get a better understanding. thank you so much for your support , it means alot to me!
I use the mg/dl system here. I hope that next year i can come out to all my friends that i am a type 1 diabetic in a ted talk publicly to break out of the bubble and explain to everyone in my school about t1d and wipe out the taboo of type 2 diabetes being linked with type 1
The current edition of the book contains some information that might be a bit dated. As an experienced diabetic I find myself chuckling at some of the old information, although it is probably more related to technology than facts about the condition (@Dennis would you like to chime in)? The new edition comes out mid May.
I wish I could give you more to go on, but since you haven’t real all received adequate training I feel like I would be out of line to make suggestions (based on personal experience) as we often do here. While you’re waiting for your Haiti care to kick in, and to find a doctor, I would suggest getting a good range of foods, including vegetables, along with your bread and rice. You might cut back a bit on one or both of those, but do it gradually to see how it affects your numbers. Since you run high cut back on any sweets (be cautious with fruits - they’re good but are sweet). Basically it’s important to get a good variety of foods to cover overall nutrition.
I’d better let you get back to your studies. Week be praying for you and your family, and especially that that 6 month waiting period passes quickly. Take care and stay well.
Thank you so much for your help! I will try your tips and hope for the best. I hope the 6 months go by fast.thank you so much for your prayers, bless you
I just thought about a publication you might like to check out. I used to have a subscription to the print magazine and you can also look up some articles online. They have articles on living with diabetes as well as recipes.
Hi! Just thought I would check in and see how you’re doing. I hope the studies are going well.