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Newly diagnosed , confused and scared

M

mandedog

Active Member
Messages
27
Location
Vancouver, Canada
Type of diabetes
Type 1
Treatment type
Insulin
I left hospital today having gone in with DKA 2 days ago. Diagnosed with Type 2 diabetes. I know nothing about diabetes and although I have been given lots of information and been told I will get plenty of support- tonight I feel frightened and unprepared for what is to come. I have insulin and metformin to take and I have a blood sugar monitor. Tonight my reading is 19.5 which seems high ( although I don’t really know what the numbers indicate) . Can I have a glass of milk ? Will that make my blood sugar go up even more? The hospital said not to worry about the numbers but that is easy for them to say. Why have a blood sugar monitor if not to worry about the numbers. This seems like a life changer to me. To make mattters worse, today was the day my husband and I were supposed to be leaving for a 6 week retirement trip. So yes, I’m miserable- any words of advice or comfort would be appreciated.
 
Hi Mandedog, welcome to the wonderful world of diabetes.

I think the first thing to know is nothing will happen very quickly so don't panic, DKA is the exception to that rule so very glad to hear they have sorted that out as it can be very dangerous.

Take a breath and have a read of the forum, many unexpected foods will raise your blood glucose so its really useful to understand which ones do and don't, you will read a huge amount on the forum about carbs/carbohydrates because these are the bad guys, the good news is that there are also many foods that will not do anything to raise your numbers so once you figure out which are which, you can avoid the bad stuff.

Diabetes is a huge subject and will take some time to get your head around so give yourself some time to figure it all out, ask questions when they crop up, nothing makes folks here happier than being able to help a newly diagnosed person so don't hold back, it makes us feel clever too.

The best news about being diagnosed with Db as opposed to other unpleasant things is we are able to a large extent to help ourselves and not rely solely on doctors etc, once you learn a bit about it, you will be your own doctor and be able to make choices that directly affect your health, many find that after a diagnosis, they are way healthier than before so its not all bad.

Best wishes and happy reading.
 
Hi and welome to the forum. What an awful time to receive the diagnosis. The good news is that you have landed here.

I'm a relative newbie so I can remember how miserable I was when I was diagnosed- it's totally normal. Life will get better- gradually for me- I still have times when I am thoroughly miserable.

First- I highly recommend getting a meter and testing regularly- very regularly at first. You need to see the effect the food you eat has on your blood sugar levels. You can't know if you don't test.

Second- I agree that a glass of milk is probably not the best thing to have. Cream and cheese is okay- milk not so much.

I went low carb immediately but that was my choice- others gradually decreased their carbs until they reached a level that their blood sugars were happy with.

The time of the trip is not wonderful for you- but the good news is that stress makes your blood sugars worse so relaxing should make them better.

There is a lot of information- it's very easy to feel overwhelmed. Here you will find people willing to help you through it. They are sympathetic, empathetic but most of all they really understand.

Why don't you list some of the types of food you like and I'm sure people can suggest low carb versions.

Don't try to get it all at once- just baby steps- every step you take is improving your health.

Welcome!
 
mandedog said:
I left hospital today having gone in with DKA 2 days ago. Diagnosed with Type 2 diabetes.
Click to expand...
Just as a quick question, did they do tests to determine the type? If not what did they base the diagnosis of type on?
I ask because although it is not impossible to get DKA with type 2, its normally associated with Type 1.
 
Hello Mandedog, welcome to the forum. First of All i would like to assure you that if diabetes is managed well you can live a healthy life. I know it’s heartbreaking when you are diagnosed and many of us have felt the same way but this forum is full of good people and will help you to learn a lot about diabetes. Please try cauliflower rice it helps to reduce the BG spike as it’s low in carbs. You can definitely go with your husband on a trip but monitor your sugars too. You can take a reading before the meal and after the first bite in two hours so that you can understand what did the food do to you. All the best
 
Rokaab said:
Just as a quick question, did they do tests to determine the type? If not what did they base the diagnosis of type on?
I ask because although it is not impossible to get DKA with type 2, its normally associated with Type 1.
Click to expand...
They said it was unusual but definitely type 2 - not sure what that was based on though
 
I haven’t quite got the hang of how to reply to each message but I guess I will work it out at some point. Thank you for responding and for your encouragement. I am writing from Canada because I thought if I went on the Canadian forum everyone would be asleep. I am not sleeping! I am originally from Uk and still call it home and that is where we should have been heading tonight on our trip but I was told that I need to be stabilized before I can travel. The Diabetes UK site seems much more user friendly as well so I will probably stick with this.
 

Don’t worry about the mistakes you’ve made in trying to reply, I’ll delete them for you. Takes a while to get the hang of it
We have members here from all over the world. Sorry to hear you’ve had to postpone your holiday

Edit for typo
 
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Hello Mandedog,
I'm so sorry this has thrown a wrench into your trip! It is weird that they tell you not to worry about numbers, but you can't leave for your trip until you're stabilized... Lovely, isn't it, when the people you look to for guidance make no sense whatsoever?

T2's don't usually get DKA, so I don't know what's going on with your pancreas... Whether it's still making massive amounts of insulin you're insensitive to, or whether it's given up and quit altogether. I never made it to injecting insulin, so can't help you there, I'm afraid... You do want to request your testresults, because after a while you'll know what they all mean and whether there's improvement. Always ask for a print-out from here on in.

For the moment, I know it feels like all food and drink might be "wrong". It's scary and you don't know what to put in your mouth at this point. So.... I am thinking they put you on a slow acting basal insulin, not a fast acting bolus you have to take with every meal? (Because that'd mean a lot of carb counting and I don't think you're doing that yet as you don't know about whether to have milk or not). You could very, very carefully cut down on the carbs some... Not too much, as you might hypo though. But you do want to get those numbers down, no-one wants to see you in hospital with DKA again. https://www.diabetes.co.uk/forum/blog-entry/the-nutritional-thingy.2330/ might help understand this condition a little, but don't go extremely low carb.... As long as you're on insulin -which I don't know whether you'll be able to sop, as we don't know how your pancreas is holding up- and you're still learning, that's not safe. Heck, ANY changes you make in your diet, you should discuss with your team first. But it's as good a place as any to start learning. Then there's this forum's website, diabetes.co.uk (not. org!), dietdoctor.com and dr. Jason Fung's The Diabetes Code. But you don't have to read and learn it all overnight. You're probably still in shock, -who wouldn't be?- so things might not sink in as fast as they usually would.

Give yourself some time. And you'll be on your way for your holiday before you know it.
Hugs,
Jo
 
If you are definitely type two then there is a possibility of coming off the medication eventually - it has been done.
At the moment stability will be the aim, sorting out what to eat and how much insulin to take to deal with it. Having the meter and supplies for it should let you get on top of the BG levels quickly, but you probably need to take small steps so you keep everything balanced.
I feel so much better since I was diagnosed - though as I don't need medication I went straight for low carb eating from that moment. Getting back to normal levels has turned back the clock to a surprising extent, and it was quite a quick fix - I bought my own meter and high BG meant too many carbs - I just can't tolerate grain or potatoes - anything high in starch, and I cut out all sugars except for a small bowl of berries and cream a couple of times a week - but I was totally confident that I'd come to no harm by plunging into low carb eating, it is entirely different when on insulin as it needs to be a cautious reduction so as not to go too far and go hypo on the amount injected. Hopefully you'll soon be able to enjoy your visit all the more for getting this sorted out.
In the UK we are still getting a lot of hot days at the moment - you might find that the delay is advantageous - last weekend was dangerously hot for being outside.
 
Hi. I think you need to be prepared to challenge the T2 diagnosis in favour of T1. Ask for the two tests. It's not really possible to say someone is 'definitely' T2 as there are no specific tests to diagnosis that type. I don't agree with the hospital as you do need to be concerned enough about your numbers to aim to keep them down to below 10'ish where you can. It will take a while to get the insulin balanced though. What insulin(s) are you on?
 
Hi Mandedog. Also in Canada and previously in the UK. I went on the Canadian site for a few months but asked some questions that would have been 'difficult' for a pharma site to answer. Never got any answers from the sponsors and everything seemed geared to making us think we are dependent on the drug companies, medical professionals and questionable diet recommendations. I was put on insulin in hospital 18 months ago and took myself off insulin last December. I just got back from my doctor who said that I was the most motivated with the best results of all her diabetic patients. My latest A1c, last week was 6.4%.
How did this happen? Low carb diet. Gradually reduced carbs so I am now on less than 15 gms at most meals. Gym, 3 or 4 times a week. Goodlife Fitness sometimes have a reduced membership fee with no fixed term and a low monthly fee. Most of all this forum. You will come to know that the condition is reversible (even if not curable), that the terrifying side effects need not happen and you have control. The disease need not be progressive. Come back to the forum for information (no appointment necessary) and support. Get on a low carb diet (try the Low Carb Program that I did) with constant monitoring of you bg levels. I aim for a max. 8.5 after meals but you will find out what works for you. Look on this as a job where you want to get promoted to the top as quickly as possible. Learn what's happening, do the research and 'work' hard. In this job you are the boss.
 

19.5 is way too high, in the short term you should be definitely looking at test results way below 10.0 - I was diagnosed at 9. something! Ideally you should be somewhere near 6.0
I am type 2 on insulin and my advice is to drastically cut down on all carbohydrates (note I said cut down not cut out). All carbs turn to sugar (glucose) very quickly, all unused glucose will turn to fat. Avoid as much as you can bread, rice, potatoes, pasta, anything made with flour, and of course anything that obviously contains sugar. Fruit juice and fruit smoothies are bad because your body will absorb the carbs/sugars very quickly because they are in liquid form and contains little fibre. You can eat vegetables, eggs, meat, cheese, butter, nuts, cream (but not much milk), fish, natural Greek yogurt, fruit in small quantities - but strawberries and other berries are good. Dark chocolate at least 70% is ok, but only a couple of squares a day. I hope this is helpful, good luck.
 
Mandedog - sorry about your recent diagnosis but believe me it could be worse. I’m a type 1 and was released from hospital 8 days ago after having a brain tumour removed. I now face the prospect of a stage 3 meninginoma and radiotherapy makes the diabetes feel like a walk in the park... John
 
Hi. I was diagnosed three months ago - on National Diabetes Day! - and know the sense of panic all too well: head in hands, “what the heck am I going to do?”, “my whole life has changed...”. I think we’ve all been there - and, at different speeds, I think we all get over it - or at least come to terms with it and live with it. The earlier responders have given great advice and it really works and can really work quickly. Yes, it is life changing - but not in a bad way (ok.. doing without chips and freshly baked bread isn’t brilliant but it’s possible and all your expectations and demands of FOOD will change). Frequent testing taught me what to eat and what to avoid really quickly. Listening to the people on here I was able to change things around - I’ve lost over 20 pounds, my bg readings have levelled off and I can run 3.5km (as opposed to about 3.5m beforehand!). You’ve seen others say it’s changed their lives but in a good way and they’re right. It will get better. You’ll learn how to build it into your day. It’ll stop being the be all and end all. It’ll become a part of you and one day really soon, you’ll be writing one of these notes to someone else who’s just been diagnosed and is in those first few days of chaos. Good luck x
 
I am sorry about your diagnosis but I really doubt they diagnosed you correctly. Like others have said, those with type 2 only very rarely go into DKA. Often times, docs diagnosis those who are adults as having type 2 because they believe only children get type 1 but that is false. About 50% of all those newly diagnosed with type 1 are adults, and many of them were first incorrectly diagnosed as having type 2 just because of their age. It seems like only those adults who are underweight have any chance at all of being correctly diagnosed with type 1. I suggest you ask them to run a C-peptide test, which will show how much insulin you are producing and the results will give them a pretty good idea of what type you are. If the results are in the normal to high range, that is type 2, if the results are in the very low to 0 range, that is type 1 when one hasn't had type 2 for many years prior. Also, have the run antibody tests, ALL of them. If your C-peptide results show little to no insulin is being produced, the antibody tests are not really necessary if they change your diagnoses to type 1, but if they don't, or your C-peptide test is inconclusive, you must insist on those antibody tests being done. Not everyone who has type 1 will have each of the anti-bodies, so that is why they must test for all of them as 95% of those with type 1 will have at least 1 on the antibodies for it. If you are type 1, you really need to know as soon as possible, as it changes everything. Type 1 and type 2 are totally different diseases and nothing that applies to the treatment for type 2 applies in treating type 1. With type 2, they will be working to get you off insulin, and if you are type 1, going off of insulin is deadly. This is not a popular opinion among those with type 1, but I feel that type 1 is way easier to deal with and treat than type 2 is. No, with type 1, you can never go off of insulin, so that is a drawback, and there are a few other downside, but for the most part, it can be much easier to live with and get the tools you need to keep your levels in the healthy range and manage it. There are a lot of things that are done differently with type 1 than with type 2, including the way you can eat with type 1 than when one is trying to control type 2. With type 1, you can pretty much eat whatever and whenever you want once you are on the correct insulins using the current and most effective method of treatment, insulin to carb ratio, and that can make life a lot easier. Like I said, that is not a popular opinion among those with type 1, but this opinion does belong to one with type 1, and one who also knows a lot about type 2. I am type 1, my husband is type 2, and I would much rather have type 1. In any case, you need those tests to know for absolute certain what type you are as your life literally depends on it. Good luck to you.
 
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Hi Mandedog

Warm welcome to the Club.

Sorry to hear that you are having such a rough time and have had to defer your retirement trip (Something to look forward to when you feel a bit better).

Coming out of hospital, you need a bit of time to get back into home life and let the diagnosis sink in. Its a lot to take in and can affect you emotionally. It will take some time.

First step will be to ask your Dr for the tests to determine if you are definately T2 as the DKA is unusual for T2's. Also ask them what your Hbac1 result was. That will give you a starting point.

19.5 is quite a high reading. If you are a T2 you will need to cut out sugar, including cakes, pastries, chocolate, full sugar fizzy drinks etc. You will also need to reduce your intake of carbs etc (Potatoes, Rice, Pasta etc). Milk would be no good for me.

Your meter will help you to understand up your BG levels during the day and how different foods affect you.

Good luck at the start of your journey. This is the right place to seek the answers to the many questions you will have over the coming days/weeks.
 
30% of us type 1/LADA's are misdiagnosed as type 2's at first. Because type 1/LADA is very slow developing it is often mistaken for type 2. It means you make insulin, some for up to 8 years even, until you don't. A couple of the signs of type 1 versus type 2 is having DKA, not impossible as a type 2, but DKA is often a way someone finds out they are type 1. Plus needing insulin so soon. But a type 2 could need that too. But suspicious. I was one of those that was misdiagnosed and told I was a type 2 by my GP and then an endo without any testing done. It wasn't until I switched doctors and was then sent to a new endo that she did the testing right away and I was properly diagnosed.

The 2 tests recommended are C-peptide which tells you how much insulin your body is still making. If you are a type 2 usually this is a higher number to compensate for insulin resistance. A type one can still be in normal range at the beginning but it will be on the lower end of normal and decrease as time goes on. An antibody test, sometimes they just do a GAD one, shows if you have the antibodies of being a type 1.

So I would get copies of any tests they did, so you can see if they did either one and you can look them up and see where they are at. It's important you can see them yourself as different interpretations are sometimes made by different doctors.

It ends up making a difference as treatment is different.. I'm not saying you are a type 1 at all. But since misdiagnosis is such a problem it is something to watch out for.
 
 
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