Newly diagnosed

[Starstruck111]

Soooooo after waiting 2 weeks for my antibody results I have confirmation that I am type 1. I haven’t even asked what my numbers were and they prob wouldn’t mean anything to me however within an hr of getting my results I have been seen by my diabetes team.
Background info:
Female, 33yrs old, 8 stone, no medical conditions - no family history of either type, no gestational diabetes, no traumatic event I can think of
Hba1c - 80
Last two weeks I practically starved myself.
Big mistake. Nurse seems very pragmatic has told me to not keep a food diary for now and to eat a healthy, normalish diet, no carb counting. I am taking 10 units of tresiba, upping it by 2 units every third day until I get 2 consecutive readings of less than 10mmol until the honeymoon period is over.

Took my insulin for the first time last night, went to bed at 20.4mmol and woke at 7.9mmol. This rose by lunch after banana and cereal for breakfast to 18.8. My numbers I guess are all going to be all over the place. I feel I’ve accepted it really well. It’s my life now. The injection wasn’t anywhere near as bad as I thought.

Opinions of my diet. I do like carbs and I don’t want to lose weigh, nor can I afford too. Have I had good advice, should I be cutting all carbs and sugars? Should I be healthy? I’m not being silly. I have for my diet for years. Oh and I live alone with my 9 year old. What should I be telling him? Only worry is the hypo and feeling I will die in my sleep

Thanks in advance x

 

[EllieM]

Opinions of my diet. I do like carbs and I don’t want to lose weigh, nor can I afford too. Have I had good advice, should I be cutting all carbs and sugars? Should I be healthy? I’m not being silly. I have for my diet for years. Oh and I live alone with my 9 year old. What should I be telling him? Only worry is the hypo and feeling I will die in my sleep

I saw your previous thread and wanted to tell you that if you were T1 (as I strongly suspected) you'd have much more freedom to eat carbs but I didn't want to give you false hope in case you were stuck with T2. The problem was that without insulin the only way to control your sugar levels was by reducing the carbs. (And at least you didn't go into diabetic ketoacidosis, which could have happened if your blood sugar levels stayed too high without enough insulin.)

So, the bad news, you're stuck with insulin and won't be able to control the diabetes just by diet. You'll have to learn how to juggle insulin and carbs.

So, the good news, you can eat normally and learn how to take insulin to manage your dietary choices.

I'm 50 years T1 and have been relatively low carb for the last few years, but that's more as a weight control and insulin resistance measure than anything else, because I do have a family history of T2 and I am carrying too much weight. You can choose low carb if that's what you want, but there's no need to do so unless you find it makes things easier. And losing weight is one of the symptoms of T1, most people put it back on reasonably fast once they are injecting the insulin that they need.

Yes, your blood sugars will likely be all over the place while you learn how much insulin you need. And because you are still producing some of your own insulin your needs are likely to be more unpredictable, at least till your honeymoon ends and your pancreas stops producing insulin. Just be patient on that one.

Hypos: yes, they are in my opinion the worst thing about being a T1 diabetic. Will you get them? Yes, you almost certainly will. ( I started this post on a 3.6, which is enough to make me feel really uncomfortable, but not enough to make me fall over.) Will they make you drop dead? Very, very unlikely. Luckily your pancreas sends out glucagon when your blood sugar gets too low and that makes your liver convert glycogen into sugar in a neat little feedback loop which should ensure that you still wake up in the morning, even though you might have a bad headache. Two problems with that: your liver isn't as good at the glycogen thing if it's busy processing alcohol, and if you've accidentally had an extra dose of insulin (eg injected fast acting insulin instead of your daily dose of long acting) there may just be too much insulin for your liver to cope with.

Most diabetics get to learn the symptoms of a hypo pretty fast, and you'll probably wake up if you get one at night. Shakiness, confusion, sweating, hunger,..... Make sure you've always got glucose tablets (or equivalent, jelly babies are popular) to hand and take them if you're hypo.

What to tell your 9 year old? Depends on the 9 year old. My kids grew up with me being diabetic so they always knew about hypos... You're not going to die (unless you're driving a car), but you might become confused and even unconscious if you don't have sugar when you go low, so if he can save you from a severe hypo he'll be doing both of you a favour. (Really bad hypos are actually scarier for the onlooker than the sufferer, who is too out of it to realise.)

More good news: the technology. If you find hypos become a problem (most people have good hypo awareness when they first become diabetic so don't have a problem then) then you can get continuous glucose meters with alarms that go off if your levels go below a certain point. They also make it easier to manage your blood sugar because you don't have to do nearly as many blood tests. The NHS is still quite stingy with handing them out, but as a T1 if you fit the criteria you can get one. If you're rich you can self fund, but they are not cheap.

Sorry for the wall of text.

Good luck, you have an excellent attitude which will make a huge difference to managing this.

 

[Daibell]

Hi. Some T1s like me can't eat a 'normal diet otherwise we would gain weight, develop insulin resistance and have big BS spikes. I would always advise keeping the carbs down to a sensible level and experience will guide you often by weight gain whether your choice of carb intake is about right. You can, of course, eat protein, fats, veg and no tropical fruit freely. I don't agree with your DNs advice; most of us can't have a 'normal' diet even on insulin. Find out what works for you. BTW Bananas are not a good fruit choice and go easy on breakfast cereal. After a few weeks gaining experience you should start carb-counting (don't wait months for an NHS course). Ask the DN for guidance or come back here if no advice is forthcoming. Without carb-counting you risk hypos or high BS. BTW you may have suffered weight loss before insulin due to the body burning it's fat for energy - I did. Now you are on insulin, weight gain is more likely rather than loss.

 

[JMoli]

Hi there, I’m a late onset T1 and pretty slim too. I was diagnosed with diabetes in January and took a month to find out I was type 1, then a delay taking insulin as I went low carb (got good blood sugar numbers but lost too much weight) and confused things for the nurses. I’m only taking basal insulin just now too (moving to taking bolus soon) I think you have a brilliant attitude to everything, honestly I still don’t feel I’ve accepted this. I found that once I started insulin (I take Tresiba) my weight went back on - I’m not sure if I would lose too much weight without carbs, seems trickier when you’re very slim but there’s maybe ways of doing it with a high fat diet xx

 

[Starstruck111]

Hi there, I’m a late onset T1 and pretty slim too. I was diagnosed with diabetes in January and took a month to find out I was type 1, then a delay taking insulin as I went low carb (got good blood sugar numbers but lost too much weight) and confused things for the nurses. I’m only taking basal insulin just now too (moving to taking bolus soon) I think you have a brilliant attitude to everything, honestly I still don’t feel I’ve accepted this. I found that once I started insulin (I take Tresiba) my weight went back on - I’m not sure if I would lose too much weight without carbs, seems trickier when you’re very slim but there’s maybe ways of doing it with a high fat diet xx

That’s why the nurse said to eat a normal diet. She said if I cut everything it will confuse my body and won’t give a true reading of what insulin I will need long term. I’m taking tresiba too and the nurse mentioned nora rapid I think it was called for the insulin before meals, she wants to stabilise my basal insulin first and it seems to be doing well. My sugars are between 6 and 8 when I wake up. Just fluctuate with meals. I’m not being stupid and eating cakes and pastries but having a more balanced meal.

Is it possible to speak to people on these forums one to one rather than an open group chat. Just seems I could have more in common with certain people etc x

 

[EllieM]

Is it possible to speak to people on these forums one to one rather than an open group chat. Just seems I could have more in common with certain people etc x

You can use private messaging by clicking on someone's name and hitting "send a private message" but that's only for 1 on 1 messaging. If you can develop a moderately thick skin (a few people can be quite evangelical about their dietary choices) I'd recommend posting on the main boards (T1 is probably best for you, though there is also a LADA one), as you get input from more people, and more chance that someone else will be able to comment on your issues from personal experience or general knowledge.