Levels sky high please help

[jimbot]

Hi there, Ive just been diagnosed in december after having been constantly urinating and having the excessive thirst for last few months or so and had thrush a couple of times.
My 1st blood test came back at 36 mmol with a 3 month average of 28 mmol. Even when i fasted for 30 hours it was still 14mmol (im aware this isnt good to do but just wanted to see what it would go down to)
It just isnt making sense to me, I generally only drink water now and have stopped eating chocolate bars ad other unhealthy snacks during the day, have healthy(ish) 3 meals a day but my levels are still in the 20's and my keytones are between the 2nd and last colours on the chart.

I was at the docs the other day and he started me on one metaformin? a day at dinner, been reading a bit into it online and cant see how this is going to be enough at all. My girlfriend is freaking out as what she's read about organ damage etc with readings so high.

Does anybody see any problems with this, or is it normal to start this way I suppose is my main query. Excuse the rant, typing and writing isnt my strongpoint.

*forgot to add, Im not overweight at all and have a fairly active lifestyle/
Many thanks in advance, any help would be greatly appreciated.

 

[CarbsRok]

Hi Jim,
Have you been misdiagnosed?
As in diagnosed as type 2 when in fact you could be type 1 and in need of insulin?
It's very unusual for a type 2 to have ketones.

 

[jimbot]

Hi CarbsRok, thanks for the reply.
I asked what type I was when was diagnosed, assumed type2 as Im 29 years old. Doctor didnt actually tell me, said we would just keep going back weekly to see how it was, but he was surprised that I wasnt feeling much more ill at the readings. Ive always been tired tho, maybe always had it?
Getting even more worried when reading this forum and seeing people worrying about it being above 10 and Im constantly in the 20's. My girlfriend wants me to get a second opinion but not sure how I can as my doc is the head of practice.

 

[hallii]

Jimbot, without being unduly alarmist, you must go and see another Doctor with some urgency.

We are not Doctors, but we do have a good level of knowledge of diabetes as a group.

Your levels are not only to high but I question the lack of urgency in dealing with them.

I would wish to say more on this but this is a moderated forum and we have to try to be responsible.

Please, just go and see another doctor, you are entitled to do so under NHS rules, ring the PCT for your area and they will tell you where you can go.

PM me if you like.

H

 

[mbudzi]

Just about to post the same message when I saw the last reply come up.

I was diagnosed in August with pretty much identical symptoms, thirst, weight loss but didn't feel ill or tired - but my GP referred me to hospital the same day. As I went through the process it became clear that not all GPs are up to speed on Type1 cropping up in later life.

Go tomorrow. If your surgery isn't open, go to NHS walk-in or A&E. To put this in perspective, if I had your readings, I have been told to get myself to hospital so I can have help getting things under control.

 

[smidge]

Hi Jim!

Back to your GP ASAP. Tell him you want to be tested for Type 1 diabetes and want an urgent referral to a diabetes clinic. You might be Type 2, but you don't fit the normal profile so best to get tested for Type 1. You need to ask for a GAD antibody test and a c-peptide test. The GAD test looks for the presence of antibodies that attack your insulin-producing beta cells while the c-peptide test measures how much insulin you are producing. Both tests are used to diagnose the type of diabetes. Google them for more info.

I was misdiagnosed with Type 2 at 42 - it took me a year and a lot of I'll health to get a proper diagnosis and appropriate insulin treatment. Many others on the forum had a similar experience. I actually have a condition called LADA which is a form of Type 1 that comes on slowly and is often mistaken for Type 2. If you do a search of the forum for LADA, you'll find a lot of information and discussion of it. Sorry I don't have time to find you the information at the moment, but have a look at what you can find on the forum and I'll try to check tomorrow that you've found enough info.

Keep in touch and let us know how you're getting on.

Smidge

I should have said, if you start to feel ill at all, go straight to A&E because high blood glucose combined with ketones is very dangerous.

 

[Daibell]

I agree with everything the others have said. At your young age, not overweight and with those levels of BS you are quite possibly a late onset Type 1. I don't want to scare you but my nephew in his early 20s ended up in A&E and was diagnosed Type 1 a year ago and it came on very quickly. He's now on insulin and managing it well. Do ask for the c-peptide and GAD tests urgently and/or seek a second opinion or ask for a referal to the local diabetes clinic. If you have a local NHS Darzi walk-in clinic as we have locally that's another way of getting a second opinion without hassle. When I think about the GP who diagnosed me with just a urine stick (!) and was head of practice and the diabetes doctor I realise I wasn't treated with the urgency I should have been at the time.

 

[smidge]

Hey Jimbot!

Hope you're OK?

Here's a link to some information on LADA for you:

http://www.diabetes.co.uk/diabetes_lada.html

There's plenty more on this site, but that's the kind of condition you need to get checked for.

All the best

Smidge

 

[Arik]

You can also check this blog I wrote on LADA:

http://www.diabetes.co.uk/blog/index.php/2011/10/check-your-lada/

BTW, there are a lot of people with LADA with a negative GAD test. But a very low c-peptide should be pretty much conclusive.
Arik

 

[jimbot]

Hi everyone, first I want to say a big thankyou for all the advice so far.
I called nhs 24 a couple of nights ago, they sent me to out of hours surgery and got the usual tests done, usual 24mmol blood glucose and evidence of ketones in urine. Was told this was ok, unless I feel sick then to get back in touch... Have been informed that my doc is doing the right thing by starting me off on the treatment he has, although Im still in the 20's mmol or even off my reader's scale sometimes (35+mmol). I just have to wait until a right balance is found apparently.
Called the diabetic clinic in my area today to find I havent been referred as I was told I had, so at least that ball is now in motion. Im back at the docs on thur eve so I'll defo be asking about the gad and c peptide tests. I'll keep you updated on how I get on. Thanks again.

 

[smidge]

Hey Jimbot!

Glad to hear you're OK :clap:

Don't let this rest with your health care - hassle and pester them. Seriously, you need an urgent appointment with the specialist diabetes clinic to get this sorted out.

Good luck on Thursday! Let us know how you get on!

Smidge

 

[jimbot]

Hi everyone, hope you're all well, just a wee update on things...

Received a call from clinic yesterday, got appointment very quickly for this afternoon, I was surprised.
Basically told its almost definately type1, but wont get the actual blood tests back for 4 weeks.
Started on insulin injections today, one slow release Lantus and one NovoRapid at every meal all at setting 4 on the pens. They explained everything really well and there seems to be lots of support, they're calling me over the weekend etc. Quite alot to take in at once, glad my partner was there, I would almost certainly have struggled without her.
I guess this is the start of something that will no doubt take time to get used to and balance correctly but thankfully for sites like this it can be easier.

Thanks again

 

[CarbsRok]

Hi everyone, hope you're all well, just a wee update on things...

Received a call from clinic yesterday, got appointment very quickly for this afternoon, I was surprised.
Basically told its almost definately type1, but wont get the actual blood tests back for 4 weeks.
Started on insulin injections today, one slow release Lantus and one NovoRapid at every meal all at setting 4 on the pens. They explained everything really well and there seems to be lots of support, they're calling me over the weekend etc. Quite alot to take in at once, glad my partner was there, I would almost certainly have struggled without her.
I guess this is the start of something that will no doubt take time to get used to and balance correctly but thankfully for sites like this it can be easier.

Thanks again

Hi Jim, so glad you were seen so quickly at clinic. It was more than obvious to all on here you were type 1 and should have been on insulin from day one.
May I suggest that you write down as much as you can remember from todays apt. Things will become a bit blurey after awhile. Glad to hear that the clinic have been helpful and your health now improves for you.

 

[Pneu]

Hi everyone, hope you're all well, just a wee update on things...

Received a call from clinic yesterday, got appointment very quickly for this afternoon, I was surprised.
Basically told its almost definately type1, but wont get the actual blood tests back for 4 weeks.
Started on insulin injections today, one slow release Lantus and one NovoRapid at every meal all at setting 4 on the pens. They explained everything really well and there seems to be lots of support, they're calling me over the weekend etc. Quite alot to take in at once, glad my partner was there, I would almost certainly have struggled without her.
I guess this is the start of something that will no doubt take time to get used to and balance correctly but thankfully for sites like this it can be easier.

Thanks again

Jim.. glad this is all sorted... we all know what a shock it can be at first and how much information there is to take in so let me say now that it does get better! and it does all start to make some sense in time!

For now the most important thing you can do is get into a routine of testing before you eat and 2 hours after a meal and begin to understand your body and diabetes.

These forums are great so if you have any questions / concerns then don't be shy in asking! we were all in your boat once.