New diabetic still waiting for diagnosis and prognosis (likely type 1)

[AnniB]

Hello,
I’m Anni, a 37 year old and newly found myself with the same issues as others here. I was admitted to hospital with DKA over the weekend and now discharged but struggling. My glucose levels aren’t coming down (they were up to 27 today despite very careful eating) and I’m waiting to have my insulin dose adjusted. My test results from the hospital still aren’t back but they told me they thought I was type 1 and possibly had a combination (no idea how that works). Struggling a little today emotionally and with feeling so crappy. Would love to make some new female friends who are on a similar journey.

 

[Bruce Stephens]

Struggling a little today emotionally and with feeling so crappy. Would love to make some new female friends who are on a similar journey.

You might enjoy the Type 1 on 1 podcast, particularly the recent Diary episodes. It's two women in their 30s, one was diagnosed as a teenager and one just a few years ago, and they happened to be friends before.

 

[Inka]

Welcome @AnniB and sorry you’ve had to join us. If you are Type 1, be reassured that you’re not alone. More Type 1s are diagnosed in adulthood than as children.

There’s an awful lot to take on board to start with, but it does get easier. It definitely sounds like your insulins need adjusting if your blood sugar is that high. Do you have ketone sticks? What insulins are you on and when do you take them?

Once you’ve got your insulins sorted, you’ll be able to eat a pretty normal diet if you’re Type 1.

 

[Leadinglights]

Hello,
I’m Anni, a 37 year old and newly found myself with the same issues as others here. I was admitted to hospital with DKA over the weekend and now discharged but struggling. My glucose levels aren’t coming down (they were up to 27 today despite very careful eating) and I’m waiting to have my insulin dose adjusted. My test results from the hospital still aren’t back but they told me they thought I was type 1 and possibly had a combination (no idea how that works). Struggling a little today emotionally and with feeling so crappy. Would love to make some new female friends who are on a similar journey.

Welcome to the forum, there are lots of friendly folk who will be all to willing to help with answers to your questions as you seem to have been left to your own devises. It would help people if you could say what insulin you are taking and what regime to have been advised to adopt and any guidance on diet as that is important when giving suggestions.

 

[AnniB]

Welcome @AnniB and sorry you’ve had to join us. If you are Type 1, be reassured that you’re not alone. More Type 1s are diagnosed in adulthood than as children.

There’s an awful lot to take on board to start with, but it does get easier. It definitely sounds like your insulins need adjusting if your blood sugar is that high. Do you have ketone sticks? What insulins are you on and when do you take them?

Once you’ve got your insulins sorted, you’ll be able to eat a pretty normal diet if you’re Type 1.

Thanks so much for your reply. It’s been a whirlwind of a few days. I do and thankfully my ketones are now under control (last reading was 0.2, they were 2.9 when I was admitted). I’m on Novarapid and Lantus (although they may change Lantus as I’m wheezy on it).
I had a very small (literally handful of tomatoes and carrots) dinner and they’ve come right back down after a hot bath and lots of fluid (13.3) now but definitely needs some adjustment. I’ve just ordered a CGM so I don’t have to wait on the NHS as I’m not sure how quickly all of that happens. Lots of reading in the meantime… I’m vegetarian which means this is going to be even more fun… I read that low carb is the way to go? Thanks again for taking the time to reply. It’s very appreciated.

 

[AnniB]

Thanks so much for your reply. It’s been a whirlwind of a few days. I do and thankfully my ketones are now under control (last reading was 0.2, they were 2.9 when I was admitted). I’m on Novarapid and Lantus (although they may change Lantus as I’m wheezy on it).
I had a very small (literally handful of tomatoes and carrots) dinner and they’ve come right back down after a hot bath and lots of fluid (13.3) now but definitely needs some adjustment. I’ve just ordered a CGM so I don’t have to wait on the NHS as I’m not sure how quickly all of that happens. Lots of reading in the meantime… I’m vegetarian which means this is going to be even more fun… I read that low carb is the way to go? Thanks again for taking the time to reply. It’s very appreciated.

Sorry… I forgot to say… the Lantus is once a day 10 units (am taking evening) and the Novarapid 4 units 3 times a day, 10 minutes before meals is what I was advised…
I am eating very healthily - for example lunch was carrots and hummus, tomatoes, quinoa, cucumber and avocado with a small handful of nuts. Breakfast was 2 eggs on wholegain toast. Collectively they sent glucose sky high!

 

[Lily123]

Thanks so much for your reply. It’s been a whirlwind of a few days. I do and thankfully my ketones are now under control (last reading was 0.2, they were 2.9 when I was admitted). I’m on Novarapid and Lantus (although they may change Lantus as I’m wheezy on it).
I had a very small (literally handful of tomatoes and carrots) dinner and they’ve come right back down after a hot bath and lots of fluid (13.3) now but definitely needs some adjustment. I’ve just ordered a CGM so I don’t have to wait on the NHS as I’m not sure how quickly all of that happens. Lots of reading in the meantime… I’m vegetarian which means this is going to be even more fun… I read that low carb is the way to go? Thanks again for taking the time to reply. It’s very appreciated.

If you are type one, you do not have to go low carb. You can if you want to.

I’m vegetarian as well, haven’t found it much more difficult . You’ll just need to remember to count the carbs of veggie burger/sausage if you have any

 

[Tdm]

It will be the quinoa and bread that did the spiking, the rest of the things you ate wouldn't be very spikey. I tend not to eat bread, couscous for that reason, or if i do, only little, the libre will really help and you should shortly get on prescription. Shouldn't be too hard being veggy, lots of veggies are low carb and good for you to boot

 

[Tdm]

Also well done on being so on top of things...initially i was very reliant i being told things but you are taking control, getting libre etc- thats a very possitive attribute for dealing with diabetes well in my opinion.

 

[Inka]

Thanks so much for your reply. It’s been a whirlwind of a few days. I do and thankfully my ketones are now under control (last reading was 0.2, they were 2.9 when I was admitted). I’m on Novarapid and Lantus (although they may change Lantus as I’m wheezy on it).
I had a very small (literally handful of tomatoes and carrots) dinner and they’ve come right back down after a hot bath and lots of fluid (13.3) now but definitely needs some adjustment. I’ve just ordered a CGM so I don’t have to wait on the NHS as I’m not sure how quickly all of that happens. Lots of reading in the meantime… I’m vegetarian which means this is going to be even more fun… I read that low carb is the way to go? Thanks again for taking the time to reply. It’s very appreciated.

Ok - important statement coming! It’s not the food with Type 1. You do NOT have to eat low carb. That’s something some diet-only Type 2s choose to do. In fact, it can make control harder with Type 1 as it means you have to count protein as well as carbs. The recommended diet for Type 1s is the same normal healthy diet recommended for people without diabetes. The idea is you eat your normal diet and take the correct amount of insulin.

You’ve obviously been started on lower doses of insulin than you need - hence your high sugars. It’s nothing to do with what you’re eating. Yes, the food has pushed you up but that’s because your meds are wrong not because you shouldn’t have eaten the food. Contrary to the comment above, you do not have to avoid bread, pasta, quinoa, cereals, noodles or anything like that. They’re great for a vegetarian diet. Tagging @helli who has some tasty veggie meals.

I’m pescatarian not veggie, but I mainly eat vegetarian and vegan meals. Here’s what I ate yesterday: cereal and milk for breakfast, a sourdough cheese sandwich and tomato for lunch and a mix of strawberries, Greek yoghurt and granola topping, spinach and ricotta lasagne and a dessert of blackberry and apple crumble with some custard. My blood sugar was fine because my insulin is right. Your blood sugar will be fine too once your insulin is sorted, but this can take a little while for two reasons: 1) they usually try to bring your blood sugar down gradually as it’s less shock to the body; and 2) it takes a while to work out what you need.

 

[Inka]

It will be the quinoa and bread that did the spiking, the rest of the things you ate wouldn't be very spikey. I tend not to eat bread, couscous for that reason, or if i do, only little, the libre will really help and you should shortly get on prescription. Shouldn't be too hard being veggy, lots of veggies are low carb and good for you to boot

No, it won’t! It will be the insufficient insulin! It’s almost always the insulin with Type 1. I could eat nothing but lettuce and if my insulin was wrong my blood sugar would be too high. It wouldn’t be the lettuce’s fault!

 

[AnniB]

If you are type one, you do not have to go low carb. You can if you want to.

I’m vegetarian as well, haven’t found it much more difficult . You’ll just need to remember to count the carbs of veggie burger/sausage if you have any

Okay, thank you. Did you find you were spiked by even low gi foods too?

 

[AnniB]

Ok - important statement coming! It’s not the food with Type 1. You do NOT have to eat low carb. That’s something some diet-only Type 2s choose to do. In fact, it can make control harder with Type 1 as it means you have to count protein as well as carbs. The recommended diet for Type 1s is the same normal healthy diet recommended for people without diabetes. The idea is you eat your normal diet and take the correct amount of insulin.

You’ve obviously been started on lower doses of insulin than you need - hence your high sugars. It’s nothing to do with what you’re eating. Yes, the food has pushed you up but that’s because your meds are wrong not because you shouldn’t have eaten the food. Contrary to the comment above, you do not have to avoid bread, pasta, quinoa, cereals, noodles or anything like that. They’re great for a vegetarian diet. Tagging @helli who has some tasty veggie meals.

I’m pescatarian not veggie, but I mainly eat vegetarian and vegan meals. Here’s what I ate yesterday: cereal and milk for breakfast, a sourdough cheese sandwich and tomato for lunch and a mix of strawberries, Greek yoghurt and granola topping, spinach and ricotta lasagne and a dessert of blackberry and apple crumble with some custard. My blood sugar was fine because my insulin is right. Your blood sugar will be fine too once your insulin is sorted, but this can take a little while for two reasons: 1) they usually try to bring your blood sugar down gradually as it’s less shock to the body; and 2) it takes a while to work out what you need.

Thank you! I really appreciate your insights and reply. That’s good to know. There seems to be conflicting information so it’s helpful to be set on the right path. I would add I’m still waiting for a confirmed diagnosis as at last check tomorrow the diabetes care team were waiting for all of my results to come back still. It’s a bit of chicken and egg because if I don’t eat normally they won’t know what dose to put me on but I’m so worried about spiking again as it just doesn’t feel good and wipes me out. I’ll call them again today and see if they have any news…

 

[AnniB]

No, it won’t! It will be the insufficient insulin! It’s almost always the insulin with Type 1. I could eat nothing but lettuce and if my insulin was wrong my blood sugar would be too high. It wouldn’t be the lettuce’s fault!

This totally happens with me. I ate a very basic salad and eggs and spiked…

 

[Inka]

Thank you! I really appreciate your insights and reply. That’s good to know. There seems to be conflicting information so it’s helpful to be set on the right path. I would add I’m still waiting for a confirmed diagnosis as at last check tomorrow the diabetes care team were waiting for all of my results to come back still. It’s a bit of chicken and egg because if I don’t eat normally they won’t know what dose to put me on but I’m so worried about spiking again as it just doesn’t feel good and wipes me out. I’ll call them again today and see if they have any news…

Yes, you’re quite right about eating normally helping them work out your dose, but I understand why you don’t want to do it if it makes you feel rough. Perhaps give them some examples of what you’d normally eat, and then what’s happening now to your blood sugar. I’m sure they won’t be surprised as it’s quite normal to start people on less insulin than you think they’ll need then gradually increase it. In your case though, it’s clearly impacting your ability to eat properly so do tell them that. It will still take a while to get things sorted, but the more information you can give them the better, particularly about how high you’re going, and about the fact your blood sugar is going high even after minimal food.

 

[SB2015]

Welcome to the forum @AnniB from another late starter. It is indeed a whirlwind at the start. Do you remember learning to drive. That was the best analogy I was given. It all seemed complicated at the start and then it becomes more automatic and you are just watching for deviations and the unexpected.

You have already seen that there is loads of experience to tap into on here. Just ask any questions that arise. Nothing is considered silly on here. We have been there trying to makes sense of all the new info.

 

[AnniB]

Welcome to the forum @AnniB from another late starter. It is indeed a whirlwind at the start. Do you remember learning to drive. That was the best analogy I was given. It all seemed complicated at the start and then it becomes more automatic and you are just watching for deviations and the unexpected.

You have already seen that there is loads of experience to tap into on here. Just ask any questions that arise. Nothing is considered silly on here. We have been there trying to makes sense of all the new info.

Thank you 🙂

 

[Spathiphyllum]

Okay, thank you. Did you find you were spiked by even low gi foods too?

I've found that my digestion doesn't necessarily recognise 'low GI'! I think some others on this forum have found the same. But, as Inka says-- the goal is to eat a normal healthy diet and find the right amount (and timing) of insulin for it.

I was diagnosed four months ago and, like you, found the initial phase very hard! For the first 8 days, they only gave me basal; and then, when I started bolus, they said only 2 units per meal. So I wasn't getting enough insulin, and therefore felt obliged to eat very low carb to avoid going very high.

Fortunately, I found this forum within a few days of my diagnosis! So within about 10 days I had found out about carb-counting-- long before my diabetes team told me about it-- and worked up the gumption to experiment a little with increasing my bolus, at first very cautiously. My main DSN (diabetes nurse) rang me frequently for the first couple of weeks; I told her all about how rough I was feeling, and feeling I needed to get back to eating properly as soon as possible, and she was very supportive.

Inka's right: Do tell your team all about it-- how high your glucose levels are going, what you've been eating, and how you're feeling, physically and mentally. They will then see the need to adjust your insulin levels asap.

In the meantime, have you tried the BERTIE online course? https://www.bertieonline.org.uk . I found out about it on this forum and found it helpful, given that I couldn't get on the local diabetes education/carb-counting course until two or three months after diagnosis.

Wishing you all the best-- as SB2015, says, we've been there-- and let us know how you get on!

 

[Lily123]

Okay, thank you. Did you find you were spiked by even low gi foods too?

I don’t, not normally but everyone is different

 

[rebrascora]

Hi and welcome from me too.

It may take quite a while for your Type 1 test results to come back, so don't expect them any day. It was 6-8 weeks for me for the GAD antibody test and I believe that is pretty standard. The C-peptide was back within 10 days I think but was borderline, so not conclusive without the GAD result.

As @Inka says, Type 1 is about injecting the right amount of insulin for the food you eat, not adjusting your food to try to get lower readings. I was told to eat normally as this helps them to figure out how much insulin you need, so get back in touch with them about adjusting your doses if your levels are in the 20s.... especially if you are hitting those numbers with a reduced carb intake. They will want to bring your levels down slowly into range over weeks and months rather than drop them drastically all at once as that can put a huge strain on your body and particularly your eyes, but I would be looking at 10-20 at this early stage after diagnosis rather than regularly above 20.
If you are currently eating relatively low carb foods and still going high with 4 units of NovoRapid then that suggests that either your basal insulin (Lantus) dose is not holding you steady or your NovoRapid is not enough and perhaps you may be suffering from a bit of insulin resistance. You mention they said something about it might be a combination.... I presume they mean Type 1 which is autoimmune, meaning your immune system has killed off some of your insulin producing beta cells and Type 2 (ie. some insulin resistance).

Try not to worry. Stress and anxiety will also increase your BG levels, so try to relax. You have the tools to monitor and manage your diabetes and a support team at the hospital and here on the forum. It is really overwhelming at first. We all felt like that but you will get through this and it will become progressively easier and gradually a routine like getting washed and brushing your teeth and even going to the toilet. It is just one more thing to think about and fit into the day. Mostly you don't think about needing the loo until you are about to leave the house or your body tells you that you need to go, granted your diabetes also needs some thought around meals and exercise as well as when you leave the house, but it is similar in that it needs to be attended to and you ignore it at your peril but you can fit it into everyday life with a bit of practice and planning..... and I am the worst planner in the world.... but still manage pretty well.