Spiraling out of control

letteyc

Active Member
Messages
27
Hey, i'm new here - well not really, i've been browsing for months but never registered.

A little bit about me; I'm 25, female and 13.5 stones. (Might be relevant).

I was diagnosed last January'ish as a type 2 Diabetic - I was experiencing severe abdominal pain and the Doc thought I had gall stones, however they couldn't find any and the pain went away. During these investigations they noticed my blood sugar was 10 mmol, and so sent me for a OGTT test and it came back on the line at 11.1 mmol, suggesting a diagnosis of Diabetes. I was sent home as a diet and exercise only diabetic. The next day I bought myself a blood glucose monitor, and adopted a healthy diet, lowered the amount of carbs and sugar I ate, joined a gym and felt awesome. My readings were all in the 4 mmol - 5.6 mmol. I thought they made a mistake and my OGTT result of 11.1 mmol was on an off day. Anyway I continued to spend a lot of money on test strips and test 5 or 6 times a day. I felt in control and comfortable with this.

Now... on diagnosis I became a bit fed up and down in the dumps, didn't tell anyone and became very anxious of any medical appointments. Everyday I was receiving mail in the post from the hospital, opticians and doctors surgery, one day I got so angry and wrote a letter opting out of these medical appointments for a year. After all I was in control.

I've lost 6.5 stones in 5 months (on a sensible diet and gym) and I felt amazing. However I noticed that my blood sugars were going up. I got concerned when my very normal results were beginning to hit 6.5 mmol, then 7 mmol, followed by 8 mmol. Then 10 mmol and suddenly hitting 14 mmol and today I have had readings in the 17 and 18 mmol's. All these readings taken on waking, before meals and after. These readings are an average for that particular day or week. My blood sugars have gone up over a matter of say a month or 2. I have began to feel weak on many days and lazy. My diet has not changed and my exercise has not altered. At first I put it down to maybe coming down with something, but I didn't. Today I took a urine test after reading some information on the Internet, and my Ketostix is showing a dark purple, which I guess means I have ketones in my urine.

I thought if I stuck to my excercise and diet, and lost the weight I've managed to lose, I would have improved a little, but instead I feel like i've taken a nose dive.

I have an appointment with my doctor tomorrow. I'm becoming a bit anxious now so was hoping maybe someone here may have an idea to what is happening with me, or if it has happened to anyone else here and what their doctor did.

Many thanks for reading.
 

Snodger

Well-Known Member
Messages
787
hey there,
how frustrating to have got it all under control and then get skyrocketing sugars again.

It sounds as if your body was ok for a bit with the diet/exercise but now needs some extra help (possibly tablets, possibly insulin). Possibly your pancreas is no longer producing its own insulin. Ask the doc for blood tests to see if this is the case.
The main thing to keep in mind is that it is not your fault. You can get the sugars under control again once the medication is right for you.
 

letteyc

Active Member
Messages
27
I missed out in my post that when I started seeing these numbers rise, I had just come out of an overnight stay in hospital for a small head injury. Whilst I was in hospital I had severe upper abdominal pain again and low blood pressure and sickness whilst I was experiencing the pain. They didn't look into it, just sent me home in the morning with a head injury leaflet. It's been since then that the blood sugars numbers have been 8 mmol + . That was about a month ago. My friend pointed out that perhaps it was pancreaitis, and at that point I had no idea the pancreas had anything to do with blood sugars hehe. But reading about this LADA has made me think that maybe the two are associated.

If I had Pancreaitis and my pancreas just.. died... and as a result i'm seeing these high numbers now, would I still be a type 2, or a type 1? This is all so confusing - yet when I was diagnosed, I thought I had it in the bag!

Thanks for the quick responses, it has been frustrating Snodger and I remember how worried I was when it first hit 6 mmol, if only I knew back then... Insulin is what i've been concerned about, but if it allows me to get myself under control again, it's worth it - however I work with a type 1 Diabetic and have seen first hand what happens with too much insulin. :(

Thanks for the link Catherine, i've had a read, didn't even know there was such thing as LADA. It does fit with me I think, will have to see what the doctor thinks. Though I have zero hope in doctors, at least the ones i've had in the past.
 

AMBrennan

Well-Known Member
Messages
826
The presence of ketones is indicative of an absolute lack of insulin, i.e. type 1; that would also be consistent with weight loss.

I'm sorry that seem to have had bad experiences with your doctors; you might want to consider switching to a different GP since, unfortunately, this problem isn't going to go away.

Also, I think it's interesting that you were diagnosed with type 2 when you were 25ish - was that backed up by tests? They never mentioned T2 when I was diagnosed (21 year old male, 95kg i.e. borderline overweight for those who believe in BMI); I was "lucky" to require admission to the ICU with severe DKA, though.
 

letteyc

Active Member
Messages
27
Hi ambrennan, they only gave me a oral glucose tollerance test and another random finger prick and then told me I had type 2 - I was overweight.

I tested again 10 mins ago and my glucose was 28 mmol, for dinner 3 hoursish ago I had a boiled egg, 2 strips of bacon and 2 low carb sausages. Tested my urine again and the stick is still very purpleish. Feel pretty dreadful now though, the only way to describe it is as if i move my head left and it takes 4 seconds for my eyes to catch up.

Am I right by thinking if I do have type 1 however, my blood sugar will not drop from 28 mmol now, but will rise? This is awful..

If I still have ketones in urine when I go to the docs in the morning, will he admit me to hospital? :s
 

AMBrennan

Well-Known Member
Messages
826
I don't know. I wasn't discharged from the hospital until I had no ketones present, but I had been literally unable to walk more than a 100m without stopping when I went to see my GP after vomiting for most of a week so that is probably not representative.

However, if I had blood sugar of 28 mmol/l with ketones present and was unable to lower my blood sugar with insulin, I would go to A&E immediately.

Your blood sugar will drop eventually since kidneys do filter out blood sugar when it's very high (thus the unintended weight loss) but will cause dehydration (thus the classic symptoms of increased thirst and urination)

Edit to add:
Ketoacidosis usually develops slowly. But when vomiting occurs, this life-threatening condition can develop in a few hours. Early symptoms include the following:

Thirst or a very dry mouth
Frequent urination
High blood glucose (sugar) levels
High levels of ketones in the urine
Then, other symptoms appear:

Constantly feeling tired
Dry or flushed skin
Nausea, vomiting, or abdominal pain
(Vomiting can be caused by many illnesses, not just ketoacidosis. If vomiting continues for more than 2 hours, contact your health care provider.)
A hard time breathing (short, deep breaths)
Fruity odor on breath
A hard time paying attention, or confusion
Ketoacidosis is dangerous and serious. If you have any of the above symptoms, contact your health care provider IMMEDIATELY, or go to the nearest emergency room of your local hospital.
source: http://www.diabetes.org/living-with-dia ... s-dka.html
 

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi Letteyc!

I know it's very worrying, but try to keep calm. The way your BGs are behaving really does sound like LADA, which is a form of Type 1. LADA presents like Type 2 in its early phases and losing weight, changing your diet and exercising can fool you and your medical team into believing it's under control, but LADA cannot be controlled by diet and exercise alone long term - it needs insulin treatment. I was misdisagnosed as Type 2 and reclassified as type 1 (LADA) after a year of getting really ill. As soon as i went onto insulin I felt better. So don't despair - insulin is a good thing if you have LADA. I get the occasional mild hypo, but that's all. On the whole, I control my BG well - it's easier if your body is still producing some of its own insulin. (Although it can be a bit mad on days when your pancreas decides to work well!) You need a GAD antibody test - if that is positive, you are Type 1 (probably LADA) - if it's negative, it's inconclusive. If you are LADA, the sooner you get onto insulin the better - your pancreas needs a rest and there is growing evidence that the sooner you go onto insulin, the better the chances of preserving any remaining beta cells for longer.

You say your GTT came back as 11.1 but your subsequent blood tests were all in the 4.5 -5 range. This is fairly normal with LADA. The 4s and 5s fool people into believing you are well-controlled, but the GTT is the key - this shows that your body is unable to metabolise glucose properly.

Good luck. i hope it all goes well for you tomorrow and you get the answers you need.

Smidge
 

letteyc

Active Member
Messages
27
Thought i'd let you know what happened at the docs, he didn't appear concerned to my relief, but also to my annoyance - I was hoping we could hurry things up and sort things out quickly and before my holiday, however it looks like i'll be feeling rubbish on my holiday too as I haven't even been able to book the blood tests for 2 weeks.

He sent me home prescribing me 1x 500g tablet Metformin tablet twice a day. I have a question about this, I know i'm to take it as i'm eating or just after, but like tonight i'm feeling a bit ill and not hungry so don't want to have to force myself to eat something, do I HAVE to eat to take it? can I have it on an empty stomach? I don't know how long it takes to kick in but I had a readings of 22 mmol, 3.5 hours after eating a ham and cheese salad for lunch, plus taking my first Metformin tablet.

Anyway the doc is sending me for these tests, I don't really know what they are for, but can anyone tell me if they will be able to tell if i'm producing insulin at all, or if indeed I am LADA? They are:

Full Blood Count - FBC
Urea and electrolytes
Blood glucose result
Serum lipids
Haemoglobin A1c level
Serum amylase (pancreatic)
Urine sample for organism

Also managed to win a 'fight' for him to prescribe me some Avivo test strips - he said he will try and 'ween' me off those. I want to feel in control. He eventually prescribed me 50x Avivo strips which I was happy about as I had used my last strip this morning and fed up of spending so much **** money on them things.
 

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi again Letteyc!

I'm afraid i don't know much about Metformin, but I'm sure a Type 2 will be along shortly to answer your questions about that - although I believe you have to take them with food or you'll get a bad stomach.

As for your blood tests, they are all pretty standard tests and there is nothing there that would indicate how much insulin you are producing, if you are producing it at all or whether you are type1 or Type2. You need:

GAD antibody test
and
C-Peptide test or fasting insulin test.

I think only a consultant can order the GAD antibody test, so go back to your doctor and ask for a referral. It might be that he is doing the standard tests first before referring you, as the consultant will expect them to have been done. Anyway, it's worth asking him whether he intends to refer you. in a similar situation to you, I waited 3 months for an appointment with the consultant, so it's worth pushing your doctor quickly.

Good luck

Smidge
 

letteyc

Active Member
Messages
27
thanks for all the advice.

i'm being sent to a consultant and having more tests but ended up in the hospital today and being re-diagnosed as type 1. Had my first Lantus insulin shot today, isn't painful at all, but no sign still of my blood sugar dropped :( I know she said it was slow acting insuling or somthing, but I had it at about 3:45pm and at 21:30 I was at 21.9 mmol after a small cup of lowish carb soup - I can't stomach anything atm, feel extremely sick and very tired. Going back on Friday to see the nurse and she said if I still have this ammount of ketones, she will have to admit me into hospital :( she made me a bit uncomfortable and said she could smell ketones on me :S used way to much perfume on my exit from her office. Feeling blah.
 

smidge

Well-Known Member
Messages
1,761
Type of diabetes
LADA
Treatment type
Insulin
Hi Letteyc!

Sorry to hear you're so unwell. Still, at least you have the diagnosis now. Type 1's not as bad as you dread! You've already discovered that some of us make far too much fuss about injecting and it's really not that bad :oops: The Lantus is a slow acting insulin to try to stabilise your BG between meals. I'm guessing you will be put on a bolus insulin aswell - Apidra, NovoRapid or Humalog are usual choices, and you'll match the dose to the amount of carb that you eat. Order yourself the Calorie, Carb and Fat Bible (on Amazon) as you'll need a way of working out how much carb you're eating. Get those Ketones sorted asap - they're dangerous. If you feel unwell before your next appointment go to A&E - they'll sort it for you there. Really, don't hang about with Ketones - you must get it sorted.

Let us know how you get on. Good luck.

Smidge
 

letteyc

Active Member
Messages
27
Thanks for all your info Smidge. And everyone else too.

Went bck to see the nurse tody, she is keeping me on 10 units of lantus and has started me on 4 units of humalog before meals. Started this this morning, it hasnt touch my sugar levels :S ? i gues 4 units is far too low? I was kind of hoping she would admit me so they can sort it out as i feel so poorly still and still have ketons. it is the most deep purple it can go. she said the humalog will hopefully get rid of the ketones. I have to ring in on monday if i still have ketones she said, but my next apointment with her is middle next week. why isnt any insulin making my sugar levels drop?? what if for some unknown reason i dont react to insulin... gee ive been feeling unwell but pretty positive all week, but im beginingto lose my rag. smidge she didnt tell me to count any carbs, should i be? she just said take 4. thank you

oh and just to add, i had my highest reading ever today after taking my humalog, 2 hours after a half a tin of mushroom shoup and a handful of blueberries, or are they blackberries... my bs was 26.4..
after taking my bs 2 hours after that again it was at 17mmol
 

Snodger

Well-Known Member
Messages
787
Don't panic. Your insulin is working - your blood sugars have started to drop, even though they haven't dropped that much. You were above 20 and it dropped to 17. You probably just need a bigger dose. Everyone's different, but just to give you an example, I'm on about 16 Lantus and I would probably take about 2 units of humalog for every 10g of carbs I'm eating (it changes a bit during the day but that's the general idea). So for lunch today I ate some soup and bread, came to about 40g altogether and I had 8 units of humalog. If I took 10 lantus and 4 humalog I'd be on the same blood sugars as you are right now, because it just wouldn't be a big enough a dose for me.

She should have explained about carb counting, because your humalog dose must match the amount of carbs you are eating. If you have the strength (mentally and physically) I would insist that someone is made available to explain this as soon as possible. BUT it sounds as if you are fed up and quite understandably so. And it's the weekend and they aren't likely to be able to offer you help before then.

If I were in your position I'd increase the Lantus dose to try and get the overall levels down a bit and get rid of the ketones. Both types of insulin will help with getting rid of ketones. But if you (understandably) don't feel comfortable doing that then I think smidge is absolutely right, go to A&E if you are still getting ketones and ask them for help.
An important question - has anyone explained to you about hypos (hypoglycaemia - very low blood sugar?)
 

letteyc

Active Member
Messages
27
hi snodger, i have been told about hypos yes, if it goes below 4mmol then i need so much lucozade or something sweet, i have it written down.

Snodger, i have been wondering, when and if i ever manage to get my levels down to normal, i will start feeling normal again? or is this the general type 1 feeling?

I dont think I feel like i should change my lantus, id be panicing all evening .

Also, is it my imagination, but i have been having my lantus at 4pm only for the last 2 or 3 days when i started it, but at about 3:45 I get bad pain in my tummy, but as soon as i shoot the lantus, the quite severe pain disapears... maybe my body is expecting it already at 4pm ... or maybe im just going a bit crazy hehe
 

Snodger

Well-Known Member
Messages
787
letteyc said:
Snodger, i have been wondering, when and if i ever manage to get my levels down to normal, i will start feeling normal again? or is this the general type 1 feeling?
you will get your levels down and you will feel normal again! You'll get your energy back and you'll feel great. Don't worry if it doesn't happen right away, your body has got used to high blood sugars and may need a few weeks to adjust. But you will be fine.

letteyc said:
I dont think I feel like i should change my lantus, id be panicing all evening .
Fair enough. Would you feel comfortable changing the humalog, or not yet? If you do want to, and/or you want help carb counting, I'm very happy to try and help and no doubt others on here will be too.

letteyc said:
Also, is it my imagination, but i have been having my lantus at 4pm only for the last 2 or 3 days when i started it, but at about 3:45 I get bad pain in my tummy, but as soon as i shoot the lantus, the quite severe pain disapears... maybe my body is expecting it already at 4pm ... or maybe im just going a bit crazy hehe
Lots of people tense up when they know they have to inject, especially at first - maybe that is what is happening to you? A bit like getting a stomach ache when you are scared (first day back at school, I always used to get severe stomach ache... my mum never let me get away with it mind you :wink: )
 

letteyc

Active Member
Messages
27
I woke up this morning, and planned to up my Lantus like was mentioned, but when I took my blood sugar, it was 14.4 - so much lower than the past 2 days. I was so happy to see a lower number (still not low enough, but much better). But so now i'm wondering, if i'm taking the same amount of insulin, and one day I wake up with like 18 mmol, the next 17, and the next 14 for example - if I changed my lantus - what if I hypo - why would i be high teens one day on lantus, and lower teens few days later... same food during day, (however I did add humalog yesterday - but thats only short acting so wouldnt effect my fasting blood sugar, right?) Will be interesting to see what my blood sugar is in a while 2 hours after breakfast - suspect i'll be disapointed. Still have Ketones. Going to ask about carb counting on Wednesday.
 

phoenix

Expert
Messages
5,671
Type of diabetes
Type 1
Treatment type
Pump
Letteyc,
Thankgoodness someone managed to realise that you needed insulin and that your levels are now dropping.
Personally I think that lowering your levels and getting rid of the ketones is most important at the moment, so keeping in touch with your nurse and checking them regularly is important. If they start to rise again then please don't hesitate to get medical advice.
At the moment some of the insulin you are using is needed to get rid of the ketones and very high glucose levels so it is quite possible that you will need smaller amounts of insulin once your levels are stabalised. (my little crib sheet for dealing ketones includes several units extra on top of normal doses for getting rid of them)
When those levels are down and you start to take control of your diabetes then learning to carb count and adjust your own dose will be important but to use a cliche it's a marathon not a sprint!

And you will feel better once you've got rid of those ketones and have more normalised blood glucose levels. I didn't actually think I felt that ill when I was diagnosed but a week or so later I suddenly felt normal again and realised that I hadn't felt 'normal' for a long time.
 

letteyc

Active Member
Messages
27
Hi phoenix. Thanks for your information. Joining this forum has been a god send! I been feeling better today . Lower numbers, not low enough but going the right way. I don't think I am on too much insulin at the moment am I? 10 units of lanuts a day and 4 units of humalog at meal times three times a day. I know everyone is different, but that seems low to me .
 

letteyc

Active Member
Messages
27
Not a happy bunny :evil: after quite a good blood sugar day (for me) yesterday. I've woken up back in the 19.8 mmol.