# A proper intro - too shocked at first



## Jenny105 (Oct 3, 2021)

Hi  Im giving a better intro than the first one. I'm 70 and live far South. I'm severely deaf , with a sound support dog - Hearing Dogs. He needs to be exercised off lead for an hour each day. I also swim @ local UNI.  On July 12th I weighed 9stone 7 (down from 11stone 3,  5 yrs ago. Up from 8stone 8 24yrs ago. ) We went away for a few days
On return I was still 9.7. Odd... On Aug  8th my weight was 8st 12. That week end I had terrible thirst, urination night and day. But on the Monday it stopped. My doc was contacted &  quarterly blood tests had diabetes added in. Result Ab1c2   96 18.6.  (Also B12 1400. later rose to 2000)    I and she were very surprised @both
DB Nurse gave me little info. The sudden onslaught suggested 1.5 (LADA) . I was given a Glaucomen metre - test. 18.6 told to test once a day and report back. Metformin 500 x 2 given . It had to be swopped to slow release. I was told to contact My Desmond , I couldnt . I'd already found Diabetes UK tho. Thanks for your help and support and answering interminable queries. I now have a new nurse who is more forthcoming. 
  On Metformin S R  and lowish carbs finger test results 5.4 - 10.4 in past week. Weight 8stone 2, but hoping it will rise with more food and more good fats.  Thanks again. 
PS  10yrs ago. I now  can think of symptoms that appeared around that time, bladder & fatigue


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## everydayupsanddowns (Oct 4, 2021)

Lovely to hear a bit more of your story @Jenny105 

Sounds like you are getting on really well, and glad you have found a more forthcoming nurse. Hope the SR Met is treating you well.


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## Adehem (Oct 4, 2021)

Hi @Jenny105 , Similar story to me. I was 60 and lost nearly 2 stone ( went from 11.5 to 9 stone). had a blood test told I was type 2. Went through metfromin, glitazides then insulin. Stated with a mixed insulin. Eventually the nurse got me onto a quick acting and long acting insulin. Had a blood test to see if I was type 1 and it sowed I was. I am 63 now have a Freestyle Libre 2 machine so no more finger pricks.


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## SB2015 (Oct 4, 2021)

Thanks for the detail around your diagnosis @Jenny105 

It sounds like you have got your head round things and managing effectively.  As @Adeham found LADA is often misdiagnosed as T2 and people manage for a while with T2 meds.  

Do you know if they did a GAD antibody test, or c-peptide test, along with the HbA1c?  Those are more expensive tests so sometimes left out if they are confident of their diagnosis.  Just keep a watch on levels and weight.


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## Jenny105 (Oct 4, 2021)

SB2015 said:


> Thanks for the detail around your diagnosis @Jenny105
> 
> It sounds like you have got your head round things and managing effectively.  As @Adeham found LADA is often misdiagnosed as T2 and people manage for a while with T2 meds.
> 
> Do you know if they did a GAD antibody test, or c-peptide test, along with the HbA1c?  Those are more expensive tests so sometimes left out if they are confident of their diagnosis.  Just keep a watch on levels and weight.


@SB2015   My new nurse seems more clued up. Ive asked her to ring me as Im confused  re those tests mentioned. I took a urine sample in but the blood test nurse seemed shocked by this. There seems to be no result listed on my Patient Access list for this. I'm due for more quarterly tests in early Nov plus HbA1c test. I'll ask Doc  about both tests at the end of October. Is it possible to appear doing well on Metformin but still be LADA (type 1.5).   I believe a member intimated this a few weeks back.


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## Jenny105 (Oct 4, 2021)

Adehem said:


> Hi @Jenny105 , Similar story to me. I was 60 and lost nearly 2 stone ( went from 11.5 to 9 stone). had a blood test told I was type 2. Went through metfromin, glitazides then insulin. Stated with a mixed insulin. Eventually the nurse got me onto a quick acting and long acting insulin. Had a blood test to see if I was type 1 and it sowed I was. I am 63 now have a Freestyle Libre 2 machine so no more finger pricks.



 


everydayupsanddowns said:


> Lovely to hear a bit more of your story @Jenny105
> 
> Sounds like you are getting on really well, and glad you have found a more forthcoming nurse. Hope the SR Met is treating you well.


@everydayupsanddowns         Thanks       SR Met is ok. Ordinary was not


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## trophywench (Oct 4, 2021)

LADA may respond to Type 2 treatment to begin with so fools everyone into thinking it's T2 - and then stops responding - at which point nothing except insulin works at all.


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## trophywench (Oct 4, 2021)

Oh PS - I much prefer your avatar pic now - your hair suits your face better !


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## Jenny105 (Oct 4, 2021)

Thanks for reposting I'll ask the nurse about this when she phones. When it stops responding do the readings go back up ??


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## Jenny105 (Oct 4, 2021)

trophywench said:


> LADA may respond to Type 2 treatment to begin with so fools everyone into thinking it's T2 - and then stops responding - at which point nothing except insulin works at all.


Is their a general point in time when this happens - weeks , months , years or varies ?


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## trophywench (Oct 4, 2021)

Sadly for you - no.


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## SB2015 (Oct 5, 2021)

With LADA the destruction of the beta cells is usually a lot slower than for youngsters.
(Everything seems to slow down a bit as I get older!). So the metformin can help for a while as your body makes better use of the insulin that there is.   With this your BG is likely to  start to creep up gradually or you manage by reducing the carbs so less insulin is needed, but eventually there are so few beta cells left they go on strike.  This is often triggered by some other illness, such as a cold,  which overloads the beta cells asking for more insulin. people often then develop more extreme symptoms. As others have said a GP/ Practice nurse will often assume that you must be T2 if you are over 40!! (I was diagnosed LADA/T1 at the age of 53, but by then I had Lost 1 1/2 st in a week and was thirsty, tired and going to the toilet VERY regularly.)

The c-peptide test will tell them how much insulin your body is producing.
The  GAD antibody test detects if there are any of these antibodies which are the pests that are triggered to destroy your beta cells.

let us know how you get on.


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## Jenny105 (Oct 5, 2021)

SB2015 said:


> With LADA the destruction of the beta cells is usually a lot slower than for youngsters.
> (Everything seems to slow down a bit as I get older!). So the metformin can help for a while as your body makes better use of the insulin that there is.   With this your BG is likely to  start to creep up gradually or you manage by reducing the carbs so less insulin is needed, but eventually there are so few beta cells left they go on strike.  This is often triggered by some other illness, such as a cold,  which overloads the beta cells asking for more insulin. people often then develop more extreme symptoms. As others have said a GP/ Practice nurse will often assume that you must be T2 if you are over 40!! (I was diagnosed LADA/T1 at the age of 53, but by then I had Lost 1 1/2 st in a week and was thirsty, tired and going to the toilet VERY regularly.)
> 
> The c-peptide test will tell them how much insulin your body is producing.
> ...


@trophywench   Thanks for the info.. I have a new Nurse   . She spent 30+ mins in a phone call and is sending me some items by post. She's aware of the Type 1.5 LADA and is going to check re tests for this. She says to contact her via message system anytime .  This week my one a day , varied times are showing  7ish most times. Im upping the carbs gradually.


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## trophywench (Oct 5, 2021)

LOL - I think you meant to 'tag' either just @SB2015 or possibly, both of us as my reply was very short and to the point!    The sheer fact nursie spent that much time talking to you and finding things out about you, also knowing what you are on about, to me looks like a very good sign for your future help and health!

Do you now feel more at ease in yourself with this?


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## SB2015 (Oct 5, 2021)

Jenny105 said:


> @trophywench   Thanks for the info.. I have a new Nurse   . She spent 30+ mins in a phone call and is sending me some items by post. She's aware of the Type 1.5 LADA and is going to check re tests for this. She says to contact her via message system anytime .  This week my one a day , varied times are showing  7ish most times. Im upping the carbs gradually.


That is excellent news @Jenny105 
Great to hear that you have such a knowledgeable nurse that you can access.

let us know how things progress.


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## Jenny105 (Oct 8, 2021)

My confidence is rising with the new Nurse Rachel. Shes sent me some info and suggested some leaflets from Diabetes UK. Some of the leaflets are out but I guess they'll come in shortly.  Ive been sent a discovery sheet for a weeks reading to discover any food groups that are less friendly than others.  Any tips on the sheet. Eat fairly normally but reduced carbs? Add in suspect foods?  etc etc.


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## Jenny105 (Oct 12, 2021)

Ketones urine test as soon as I track down a white topped sample bottle......   What are ketones and why  test? Should I be ultra careful with diet tomorrow in preparation . I'm away from home but can be careful.


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## Robin (Oct 12, 2021)

Jenny105 said:


> Ketones urine test as soon as I track down a white topped sample bottle......   What are ketones and why  test? Should I be ultra careful with diet tomorrow in preparation . I'm away from home but can be careful.


Ketones are what your body produces when you are burning a lot of fat for energy, They can be dietary, ie, caused by a low carb diet, or when you are needing extra energy so your body is raiding your fat stores, or they can be as a result of high blood sugars, which are the 'nasty' ones, as if they are very high, they can be a sign that the body is entering a state of Diabetic Ketoacidosis. There are two methods of testing for them, a urine dipstick test, or a blood fingerprick (my blood glucose meter also takes ketone strips). The urine strips are cheaper, but a rather crude way of testing, as you compare the colour against a chart, so the answer you get is rather 'ball-park'.
I can’t think why your nurse is doing one particularly, if she was worried about ketones, she should have summoned you for a finger prick test immediately. As she hasn’t, she can’t be that worried.


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## Inka (Oct 13, 2021)

Jenny105 said:


> Ketones urine test as soon as I track down a white topped sample bottle......   What are ketones and why  test? Should I be ultra careful with diet tomorrow in preparation . I'm away from home but can be careful.



It’s a bit strange to test for ketones now, as @Robin has said, but no, you don’t have to be extra-careful with your diet. Just eat normally.


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## rebrascora (Oct 13, 2021)

I would guess that the ketone test is part of the deliberation about which Type Jenny actually is, since there is some question mark over it. Of course it will tell them very little when her BG levels are not too bad due to following a lower carb way of eating and of course it is a much quicker and cheaper test than C-peptide or GAD antibody tests. I imagine it may be more a question of putting a tick in a box and I have certainly seen people say that they didn't have ketones so the nurse said they must be Type 2 so it is sometimes used to rule out Type 1 when in fact it is unlikely to tell them anything unless ketones come back very high which of course would indicate Type 1 but a negative test doesn't rule it out.

I agree that you should eat normally today rather than low carb if they are testing for ketones and it might have been helpful to eat normally for a few days before hand too, as your low carb diet is suppressing your BG levels so ketones are less likely to show at any appreciable level, even in ketosis (low carb fat burning mode).


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## Inka (Oct 13, 2021)

Yes, I agree @rebrascora but it’s pointless to do it now, as you say. If there’s any chance of Type 1/1.5 I always think it’s best to eat normally (ie not low carb) else it just drags things on. If @Jenny105 is tested for ketones and doesn’t have them, then that could be used as ‘proof’ she’s not 1.5. It seems half-hearted and a waste of time really.


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## rebrascora (Oct 13, 2021)

Inka said:


> Yes, I agree @rebrascora but it’s pointless to do it now, as you say. If there’s any chance of Type 1/1.5 I always think it’s best to eat normally (ie not low carb) else it just drags things on. If @Jenny105 is tested for ketones and doesn’t have them, then that could be used as ‘proof’ she’s not 1.5. It seems half-hearted and a waste of time really.


I totally agree.


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## Jenny105 (Oct 13, 2021)

Robin said:


> Ketones are what your body produces when you are burning a lot of fat for energy, They can be dietary, ie, caused by a low carb diet, or when you are needing extra energy so your body is raiding your fat stores, or they can be as a result of high blood sugars, which are the 'nasty' ones, as if they are very high, they can be a sign that the body is entering a state of Diabetic Ketoacidosis. There are two methods of testing for them, a urine dipstick test, or a blood fingerprick (my blood glucose meter also takes ketone strips). The urine strips are cheaper, but a rather crude way of testing, as you compare the colour against a chart, so the answer you get is rather 'ball-park'.
> I can’t think why your nurse is doing one particularly, if she was worried about ketones, she should have summoned you for a finger prick test immediately. As she hasn’t, she can’t be that worried.


@Robin  This is useful.  The urine sample request came from another doc, my own may be on hols. There should have been a test done in August but results were never filed. Communication has been via telephone bar one.

  My past 3 weeks BG readings failed to send . The Engage consult service wont take Open Office files. My readings have dropped from 14 down to around 7. Sometimes a little less, sometimes a little more. *Today *I copied over those readings for the past 3 weeks, mainly 6-8 , lowest 5.4 + 2 @ 10.9 ( both of these whilst away, with 10 days gap. )

The raiding of fat stores rings a bell. When all this began in July I wa @ 9 st 7lbs. I now weigh 8.4 max. Ive been doing low carbs , but increasing the  fats I haven't had for years. Cheeses inc brie, wendsleydale, stilton; bacon,butter,etc .Maybe that is a factor. Note I walk a large dog each day 1 hour off lead, involving hills, beach/sea, fields, jogs & ball games, plus a swim twice a week. So Im burning off everyday
 Next week Im doing a discovery sheet for the nurse. Readings everyday for each meal etc. Im hoping that will reveal some interesting issues


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## Jenny105 (Oct 15, 2021)

*The latest in the ketones saga*.   Apparently a doctor, who is not MY doctor ,ordered the urine test. 
There's confusion as reports/ messages go via the Engage Consult IT system. Both ways.Im not sure who's receiving what
I did the sample this am. Doc says it was because my readings were high . (He hadn't received the last 20 days ...... readings 5.4 - 9.2 with occaisonal  10 or 11.) as opposed to 12 - 18 in the first few weeks. 
Then Nurse says its because of  weight loss of 1stone 12 lbs in 4m. Nurse says the ketones maybe feeding off my fat ( I think?).  My weight has flattened out @ 8.  2    in the past week.   Telephone expected if the ketones are in the wrong and may need insulin.  Not looking forward to that.


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## Inka (Oct 15, 2021)

Don’t be afraid of insulin @Jenny105 The important thing is to get the right diagnosis and the right treatment. I hope all goes well for you with the ketones.


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## Jenny105 (Oct 15, 2021)

Inka said:


> Don’t be afraid of insulin @Jenny105 The important thing is to get the right diagnosis and the right treatment. I hope all goes well for you with the ketones.


No telelphone call !   Don't know what that means . '' Nothing to report '' Or maybe ''overlooked ''.  We'll see what Monday brings.
Thanks for your encouragements.
PS  just found that the urine tests are listed  - 6 i think on Patient Access. The first 4 have negative against title BUT  N/A is listed on the inside...... maybe there not signed off or are kept private


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## Jenny105 (Oct 17, 2021)

Inka said:


> Don’t be afraid of insulin @Jenny105 The important thing is to get the right diagnosis and the right treatment. I hope all goes well for you with the ketones.


@Inka    Hi, Insulin prob not a prob. Wish I knew my type; who to refer to; I need to speak via landline not mobile which is poor quality for me to find out WHAT to eat.
I'm sending a timeline re my weight from 1971 to date via GP.  25 yrs were spent trying to lose weight-I managed over 1st. Latterly I was eating less and less of everything,but inadvertently raised lockdown sugars. Now Idont know WHAT TO eat?
I hope the urine tests establish something  after almighty weight loss of over st 11/2 st in 4m, most prior to BG test ). BMI is fine but how do i keep it there ,AND  * What* CAN* I EAT.* ???


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## rebrascora (Oct 17, 2021)

I would eat sensibly, but not particularly low carb as I think that is clouding the issue with your diagnosis.

Keep a food diary. Don't eat cakes, biscuits, crisps and sweets but eat wholesome healthy meals as much as possible. If your BG levels go up then hopefully that will help them to identify your diabetes type more easily. 
So.... perhaps have porridge for breakfast if you like it with a handful of berries.... most NHS staff recommend porridge even though many Type 2s can't cope with it.... or have a couple of slices of wholemeal toast with a scrape of marmite or peanut butter but maybe not jam or marmalade. 
Have a sandwich and soup at lunchtime and meat or fish or eggs and a small portion of potatoes and veg. Keep a record of the amounts of carb rich foods.... so weigh your porridge oats and make a note of how many pieces of potato etc. This is the sort of advice an NHS dietician would give to a diabetic. I might not personally agree with it but if you do that then they will have a better chance of understanding what is going on with your metabolism and hopefully end the confusion.


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## Inka (Oct 17, 2021)

@Jenny105 I answered the ‘what to eat’ question at least twice, as did others. Feel free to ignore us but, again, as @rebrascora says, if you reduce your carbs too much and you actually are LADA then you’ll mask the problem and delay the correct diagnosis.

Eat normally! Avoid sugar but just eat normal meals with a reasonable amount of carbs.


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## Inka (Oct 17, 2021)

Eg here:

http://forum.diabetes.org.uk/boards...w-many-til-i-get-more-help.95386/post-1099596


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## Jenny105 (Oct 17, 2021)

Inka said:


> @Jenny105 I answered the ‘what to eat’ question at least twice, as did others. Feel free to ignore us but, again, as @rebrascora says, if you reduce your carbs too much and you actually are LADA then you’ll mask the problem and delay the correct diagnosis.
> 
> Eat normally! Avoid sugar but just eat normal meals with a reasonable amount of carbs.'


Apologies for being a nuisance.  I'm  confused by advice given by the NHS & the extra tests being given. Im supposed to be doing a discovery sheet this week so I'll conquer my old food fears and add in things I haven't eaten recently.
 I eat midday main meal and evening is usually a salad with bread. Maybe I'll add in a soup which isn't too sugary. 
I'll back off a bit


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## Inka (Oct 17, 2021)

Jenny105 said:


> Apologies for being a nuisance.  I'm  confused by advice given by the NHS & the extra tests being given. Im supposed to be doing a discovery sheet this week so I'll conquer my old food fears and add in things I haven't eaten recently.
> I eat midday main meal and evening is usually a salad with bread. Maybe I'll add in a soup which isn't too sugary.
> I'll back off a bit



You’re never a nuisance @Jenny105  I completely understand how frustrating and confusing it must be to not have a definite diagnosis of type. I was just reminding you that the advice remains the same really if LADA is a possibility.

I was also stressing that the ultimate choice is yours Weigh up what everyone here has said and do what you feel is right for _you_ and what you’re able to do within your particular circumstances. You’ve mentioned food fears before so that might be an additional thing you need to add in to your mental calculations before deciding what’s best.

Hopefully you’ll get more clarity about your diabetes type and that will help a lot. X


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## Jenny105 (Nov 9, 2021)

Inka said:


> Yes, I agree @rebrascora but it’s pointless to do it now, as you say. If there’s any chance of Type 1/1.5 I always think it’s best to eat normally (ie not low carb) else it just drags things on. If @Jenny105 is tested for ketones and doesn’t have them, then that could be used as ‘proof’ she’s not 1.5. It seems half-hearted and a waste of time really.


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