# New and feeling awful



## Samseal6 (May 18, 2019)

Hi 
Glad I have found this forum
Was diagnosed on Wednesday, with a fasting reading of 20 
I have been feeling so ill for months , so in a way was a relief to finally find out what is going on
Long story but Docs had said It was epilepsy

Have been put on metforin , blood pressure tablets and statins
Doctor did not say if type 1 or 2 ( am 53 ), seeing nurse on Wednesday, so hopefully will find out more

Have already changed my diet , the one good thing was I have lost 2 and a half stone since November, need to lose more so fingers crossed
I feel ashamed, is that normal.?
I have read loads that tell me its not my fault, as I have family members who had it , but still feel that its labled fat lazy person disease
Anyhoo , I know I can live with this and control it , having lived with brain tumours for the last 25 years ,I know I am pretty determined.still working full time and enjoying life

Feeling a bit overwhelmed and sad , so thank you for this group

Sam
X
.


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## Pine Marten (May 18, 2019)

Hi @Samseal6, welcome to the forum. 

It can be a shock yes, and all sorts of feelings are quite normal at first, so please don't beat yourself up about it. You've made a good start by losing weight and changing your diet, and also by coming here  Have a read around the threads and get to know us more, and we'd be pleased to answer any questions you may have - no question is daft! 

With determination (which you have) you can control this and end up healthier and fitter. All the best to you, and let us know how you get on at your appointment xx


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## Ljc (May 18, 2019)

Hello @Samseal6 welcome to the forum.  It’s perfectly natural to feel overwhelmed , though their is no need for you to feel ashamed it’s natural to feel this way too. As you probably know their is a lot of misunderstanding out there about T2 ( all the other types too) ,  although  lifestyle may play a part in developing T2 their are other factors that can cause it too.  I was the first known one in the family to develop it , their are quite a few others on both sides if the family now and  most are slim and led a healthy lifestyle 

I am confused about your doctor thinking your symptoms were due to Epilepsy, what symptoms did you have .

Feel free to ask any questions about diabetes we’ll do our best to help.

When  you lost weight was it planned or unexpected


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## Docb (May 18, 2019)

And I would add, if you can cope with brain tumors then coping with diabetes should be a doddle.


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## Samseal6 (May 18, 2019)

thanks everyone 

Weightloss was unintentional ( although needed) , I have gone from 15.10 to 13.3 since November 
I thought I was losing weight , but only checked the other day , when put batteries in scales
The whole epilepsy saga , which may still be , waiting to see neuro
Had a few episodes of confusion and not able to speak , couple of times passed out , but mostly just banging headache and then sleep , last between 30-60 mins . With history they just said focal epilepsy 
I actually cannot believe that this has not been picked up before , the amount of blood tests i have had
Problem seems to be that GP just automatically assumes anything I complain about is to do with my head
I went to GP on Monday and basically told her that I had diabetes , after drinking gallons , weight loss , sleepyhead, itchy bits etc .so had blood trst Tuesday and was phoned 1st thing Wednesday to go straight in

I feel really ill and now am scared to eat anything, as reading 2 hours after a meal are 21.8
Sorry for long post 

Sam. 
X


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## Drummer (May 18, 2019)

What was the meal?
If you are type two, and lucky, simply reducing the amount of carbs you eat will cause your blood glucose levels to drop.
If you are one of the other types then you will most likely require medication to restore order, but that is a bit more complicated.


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## Samseal6 (May 18, 2019)

Hi Drummer
A 2 egg omelette with slice of ham , mushrooms and a sprinkle of low fat cheese
Sam
X


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## emmgeo (May 18, 2019)

Samseal6 said:


> thanks everyone
> 
> Weightloss was unintentional ( although needed) , I have gone from 15.10 to 13.3 since November
> I thought I was losing weight , but only checked the other day , when put batteries in scales
> ...


Hi, I was newly diagnosed 4 months ago and felt the same as you do at the moment,feeling ashamed and not normal, all I can say is it will get better once you accept it and you control it and not let it control you.
good luck and hope you feel a lot better soon.


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## Drummer (May 18, 2019)

Apart from the low fat cheese, that seems to be low carb anyway - if it is typical of how you are eating it is something to emphasis when you see the nurse.


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## Samseal6 (May 18, 2019)

Yes seeing nurse on Wednesday 
Only been on meds since last Wednesday and only 1 500g , so will defo go through it all

Thank you all again
Sam
X


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## JasonM (May 18, 2019)

Sam,

You are completely normal I was diagnosed just over 30 years ago type 1 (I still remember that first injection the time, date & the smell of insulin as if it was yesterday) a few days before I turned 18.
It really did turn my life upside down, getting through university the student life a few bad hypos along the way some rebelling also.
Though I got used to it one thing it gave me was discipline - I keep fit watch what I eat & try not to take life too seriously (easy said than done sometimes) & as you said some of us have had very challenging medical history's ( I've had my fair share) though you to roll with the punches.

You'll be fine.

Jason


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## TheClockworkDodo (May 18, 2019)

Hello @Samseal6 and welcome to the forum - glad you found us, though sorry you've been feeling so ill.

The fact that you've lost lots of weight without trying, and that your reading is very high 2 hours after a meal which was very low in carbs suggests you may be type 1.  You may be OK until Wednesday, but if you feel any more ill or your readings get any higher please do go to A&E straight away and tell them about the weight loss and the fact that your blood sugar levels are very high even when you're not eating carbs, because if it is untreated type 1 you could become very seriously ill if you don't get insulin soon.  Metformin will do nothing at all for type 1, it only helps with type 2.

I don't want to worry you - if you do have type 1 it's treatable, you can live a perfectly normal life with it, and you will feel a whole lot better when you're given some insulin! - but untreated type 1 can potentially become very serious very rapidly, so please don't hesitate to get to A&E if you need to.  

The episodes you describe sound rather like the effect of very low (or plummeting) blood sugar.  It could be that yours is spiking up and down, if your pancreas is on its last legs.  If it is low blood sugar causing you to black out, you really do need help from a hospital diabetes team though, not just a surgery nurse.

In the meanwhile if you can get to a pharmacy, get yourself a pack of Ketostix and test your urine for ketones (it's easy, you just wee on the stick, wait 15 seconds and then see what colour the stick's gone).  If you have anything more than trace ketones you should probably go straight to A&E and tell them you're a newly diagnosed diabetic with Ketoacidosis.

If you manage until Wednesday without needing to go to A&E, please make sure your nurse knows about the weight loss and about the high readings after low carb foods.  Most medical professionals (including surgery diabetes nurses, who are unlikely to see many type 1s) will assume anyone with diabetes who's over 21 and not skinny is type 2 - but actually type 1 can start at any age (I was 44 when I was diagnosed), and about 40% of type 1s are diagnosed as adults.  We also come in all shapes and sizes!

Oh - and whatever type you have, it's not your fault x


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## Samseal6 (May 18, 2019)

Juliet 

Thank you so much , I think I am actually type 1 too
Have taken your advice on board , have had another meal about an hour ago
Turkey slices , cottage cheese and some endembe beans ( spelling )
I think i have some keto stix somewhere

Thank you again
Sam
X
(


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## Ljc (May 18, 2019)

Samseal6 said:


> Juliet
> 
> Thank you so much , I think I am actually type 1 too
> Have taken your advice on board , have had another meal about an hour ago
> ...


This is the reason I asked about your weight loss, I see @TheClockworkDodo has covered it so I won’t repeat it other than to say if you’re feeling really rough now then go to A & E please don’t delay. 

Please let us know how you get on


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## Samseal6 (May 18, 2019)

Just done blood , 20.8
Am going to go to bed and if I feel as bad or worse and reading is high in the morning will go to A and E

Thank you peeps 
Sam
X


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## SB2015 (May 19, 2019)

Good morning @Samseal6 
How are the levels this morning?
How are the ketones?

As @TheClockworkDodo has said you are sounding very like a T1, and with the level you had last night, after low carb meal, I would encourage your u to go to A&E this morning. Without insulin your levels will not improve.
Did you find some ketostix?  With levels up at 20 it is likely that you willl now have ketones if you have so little insulin and it is important that you get checked out.  Don’t leave it any longer, and emphasise the weight loss.

Let us know how you are doing.


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## Samseal6 (May 19, 2019)

Hi peeps 

Level this morning is 13.8 , so loads better
Have got some keto stix coming today
Will monitor blood and if goes higher will defo go A and E , but if dont go , will call GP first thing 

Sam
X


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## Pine Marten (May 19, 2019)

Hi @Samseal6, I'm glad the levels are down. I don't know much about type 1 but good advice given by the others 

Many good wishes for today/tomorrow and that you'll get a proper diagnosis and get this sorted xxx


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## Samseal6 (May 19, 2019)

Hi
Just to let all you lovely people know am feeling much better today
Level still 20 after 2 hours , but I actually enjoyed my dinner tonight,chicken and salad
My keto stix show am in ketosis , so going to see GP tomorrow 

Thank you again for all the support and advice 
Sam
X


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## SB2015 (May 19, 2019)

Samseal6 said:


> Hi
> Just to let all you lovely people know am feeling much better today
> Level still 20 after 2 hours , but I actually enjoyed my dinner tonight,chicken and salad
> My keto stix show am in ketosis , so going to see GP tomorrow
> ...


Hi Sam, sorry to worry you but if your BG is still 20 and you have ketones, I think that you need to go to A&E NOW.  This is not something that can wait until tomorrow.  You need to get the levels down and more importantly get rid of those ketones which you cannot do without help.  People with T2 do not generally develop ketones.  If you are T1 you need insulin NOW.

What reading did you get with the ketostix?


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## Bronco Billy (May 19, 2019)

@Samseal6, what number were the ketones? If it they were above 2.0, I would go to A&E ASAP. If you do see a GP tomorrow and he/she shows no concern for your BG numbers, I would go to A&E anyway as you need to see a specialist in diabetes. It isn’t healthy to stay at that level for this length of time. 

It sounds to me (although I must stress that you still need to see a specialist) that you are either type 1, in which case, you need to be diagnosed immediately, or you are type 2 and the medication isn’t close to being at the right level. The overnight reduction might be accounted for by the ‘dawn phenomenon’, which basically means you are in the ‘honeymoon period’ of type 1 and your pancreas woke up overnight and worked a bit before stopping working again.


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## everydayupsanddowns (May 19, 2019)

Just another voice to say you really should go to A&E, without delay, and especially if you have any abdominal pain or vomiting (but do not wait for them!)

Type 1 can appear at any age, but is easily overlooked because T2 is so much more common. If you had gone to the same GP with the same clinical symptoms at age 16 or 20, I suspect you would have been admitted already!


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## Samseal6 (May 19, 2019)

Hi everyone 
Bg 21.5 after 2 hours
Keto stix shows nil now , was 2nd pink one before dinner

i have been thinking , my fasting level on Wednesday was 20 , so my after meal thing would have been bonkers
I didnt get my monitor until Friday , so dont have a base measurement for before taking meds
I have got all the numbers to show GP in morning 
I do feel better today , still not fab and I may aswell just sit on the loo drinking water
Am only on 1 tab a day 500mg , so maybe need more
Really hoping not type 1 ,
You have given me lots of helpful advice and I feel more confident about raising these issues tomorrow 

Sam
X


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## Bronco Billy (May 19, 2019)

My concern for you now would be that, given the amount you say you are drinking, the keytone levels may be reduced through dilution. If you are drinking and peeing a lot, I think you should go to A&E immediately. When my daughter was diagnosed, she became a lot more ill overnight and it became very serious. I know it isn’t something you want to do, but it is the right thing to do under the circumstances.


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## Lucy Honeychurch (May 19, 2019)

Agree with above posters. Get to A&E asap. DKA is life threatening, don't delay.


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## Samseal6 (May 19, 2019)

Have called 111 , waiting for a call back x


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## Jodee (May 19, 2019)

Good job Sam I was just going to suggest at least call 111.  Hope the BG soon under control.


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## TheClockworkDodo (May 20, 2019)

I really hope you get some good advice - but the trouble with 111 is that you are likely to talk to a generalist rather than a diabetes specialist.  My partner and I have both been given (dangerously) bad advice by GPs via the 111 service in the past, and we are both lucky to still be here, despite the incorrect things we were told (which in both cases absolutely horrified the relevant specialists, when we told them what advice we'd been given).  You really need a diabetes specialist, not a GP, as general practitioners by definition don't tend to know much about specialisms like type 1 diabetes.


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## SB2015 (May 20, 2019)

I hope that they gave you the correct advice.

We are told to go straight to A&E if we have ketones and are unable to control our BG, because it is an emergency.


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## Samseal6 (May 20, 2019)

Been to GP , now off to hospital .will let you know 

Thanks again lovely people 

Sam
X


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## Northerner (May 20, 2019)

Samseal6 said:


> Been to GP , now off to hospital .will let you know
> 
> Thanks again lovely people
> 
> ...


Good luck Sam, I hope you can get a firm diagnosis so that you can get started on appropriate treatment


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## everydayupsanddowns (May 20, 2019)

Good to hear Sam

Hope our worries come to nothing, but that whatever happens you get good advice and speedy treatment!


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## Samseal6 (May 20, 2019)

Hi , am home

Spoke to a lovely Diabetes specialist and am feeling much happier
Blood taken and check what type ( about 2 weeks ) , but she is fairly sure it T2
She has upped my metformin to twice a day and put me on Gliclazide twice a day
She has asked me to do bloods before meals and bed and wants me to call her on Wednesday,to check ketones only if level goes to 20. She has also told me when to be concerned on ketone and advise about when it is an emergency 

My Habc1 thing was 50 , so she said that was good , although defo diabetic
With bloods they are checking other bits and bobs to see if that is what is causing high bg

Am feeling much less anxious and was a conversation I needed to have

Thank you again
And hoping my further posts wont be so “ drama queen “

Sam
X


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## SB2015 (May 20, 2019)

Samseal6 said:


> Hi , am home
> 
> Spoke to a lovely Diabetes specialist and am feeling much happier
> Blood taken and check what type ( about 2 weeks ) , but she is fairly sure it T2
> ...


Thanks for the update Sam
Glad that you got checked out and that they are following this up with you during the week.
Keep in touch


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## TheClockworkDodo (May 20, 2019)

That sounds really good, Sam - so glad you got some professional advice from someone who knows what she's talking about!
HbA1c of 50 is amazing, not at all what I'd expect with daytime readings around 20, so if it's type 2 you have a good chance of getting it back down to healthy levels really quickly (and if it's type 1, at least you've caught it early).  I'm glad they've done more tests to try to work out why your readings are so high at the moment.
I don't think your earlier posts were at all drama queen - we were all worried about you having such high readings and ketones.  Quite a few people on here have ended up in hospital with DKA, some with life-threatening levels, so it's much better safe than sorry.


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## Samseal6 (May 20, 2019)

TheClockworkDodo said:


> That sounds really good, Sam - so glad you got some professional advice from someone who knows what she's talking about!
> HbA1c of 50 is amazing, not at all what I'd expect with daytime readings around 20, so if it's type 2 you have a good chance of getting it back down to healthy levels really quickly (and if it's type 1, at least you've caught it early).  I'm glad they've done more tests to try to work out why your readings are so high at the moment.
> I don't think your earlier posts were at all drama queen - we were all worried about you having such high readings and ketones.  Quite a few people on here have ended up in hospital with DKA, some with life-threatening levels, so it's much better safe than sorry.


Thank you xx


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## Northerner (May 20, 2019)

Samseal6 said:


> Hi , am home
> 
> Spoke to a lovely Diabetes specialist and am feeling much happier
> Blood taken and check what type ( about 2 weeks ) , but she is fairly sure it T2
> ...


Good to hear Sam  Do be aware that gliclizide can cause low blood sugar levels - was this explained to you? My advice would be to keep something sugary to hand e.g. jelly babies or similar and test if you feel 'odd'. It's unlikely, given your recent high numbers, but better to be prepared


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## Ditto (May 20, 2019)

Samseal6 said:


> And hoping my further posts wont be so “ drama queen “


 With good reason! Glad you're getting sorted.


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## Lucy Honeychurch (May 20, 2019)

I hope you feel better soon. Nothing drama queen about seeking advice for high bgs and ketones.


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## Samseal6 (May 20, 2019)

Northerner said:


> Good to hear Sam  Do be aware that gliclizide can cause low blood sugar levels - was this explained to you? My advice would be to keep something sugary to hand e.g. jelly babies or similar and test if you feel 'odd'. It's unlikely, given your recent high numbers, but better to be prepared


Hi Northerner , yes all explained, will be carrying biscuits x


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## Bronco Billy (May 20, 2019)

That’s great news! Your post wasn’t ‘drama queen’ at all. You were in a potentially a very serious situation. One note of caution; if your blood sugars do go low, biscuits may not bring you back up quickly enough. Jelly babies or something else with high sugar content will be more effective.


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## KARNAK (May 20, 2019)

Hi Sam glad you got a better result from the HCP, as my esteemed members have already suggested always carry hypo treatment with you, i.e. jelly babies or similar. Your HbA1c is very good so you are nearly there, so close. We are a supportive lot here and look forward to your posts.


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## Ljc (May 20, 2019)

I am so glad that you sought professional advice from the hospital. You were not being a drama queen at all, you were just very worried as were we 

I used to be on Gliclazide and never had a hypo (low blood glucose) but it is possible.  Biscuits are unlikely to work quick enough to raise your BG (blood glucose) many here use jelly babies around 3 or 4 of them , personally I don’t as I’d be scoffing them  and wouldn’t have any left when needed  ,150 ml of juice , the same amount of full sugar  can of Coke or 3 or 4 glucose tablets are fast acting .

I trust you will start to feel better soon.

I too am amazed at your  Hb1ac , it’s really just over the threshold for diabetes 48 is the tipping point,  as has already been said if you have T2 you stand a very good chance of turning this around , if you have T1 it’s being caught early which is wonderful.  

Please let us know how you get on. 

Ask all the questions you need to about diabetes, we’ll do our best to help.


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## Samseal6 (May 23, 2019)

Hi , just a quick update

The meds are really helping , my level this morning 10,2 
Also only had to get up to pee once in the night
Am feeling loads better , I have been eating healthy and will continue 
I know its early days ,  but feeling so much more positive and know I can control this

Sam
X


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## Ljc (May 23, 2019)

I am glad to hear you are feeling better and much more positive


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## SB2015 (May 23, 2019)

Good to hear that you are feeling better @Samseal6 .
As you say this is manageable.


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## TheClockworkDodo (May 23, 2019)

That's great news, I'm really pleased for you


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