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Confusing and concerning.

SHORAN

SHORAN

Well-Known Member
Can anyone shed some light as to what is happening ?

At the age of 50, I was misdiagnosed as T2 in 2017 .I attempted to control my diabetes with sensible eating and tablets etc.( and eventually after about 4 years I started to use basal insulin in the mornings as well )

I recently talked to my GP about the "Newcastle diet" as advocated by Professor Roy Taylor .( in an attempt to try reverse my diabetes ) However as I am already slim and my Hb1Ac levels were all over the place and rising .... my GP was concerned that this diet would be dangerous for me and wanted a second opinion as to exactly what type of diabetes I had . He was thinking I was more like a T1.
So it was arranged for me to see my consultant again ( who hadn't seen since 2017, supposedly because covid botched up hospital appointments - so they say )

I saw my consultant in February 2024 and he suggeted doing a C-Pep test which I had done in April . Shortly after that I was introduced to using fast acting insulin by the diabetes nurse...

I saw my diabetes consultant again on 11th July. Up till then I was using basal 'Insulin Glargine" ( Abasgalar) at 12 units in the morning daily and once a day initially injecting with 'Insulin Apart' ( Novorapid ) prior to dinner at around 6-8 units . In addition to the insulin injections I was on Metformin 1000mg slow release twice daily ( one in the morning and one in the evening ) plus one tablet of 10mg Jardiance ( Empagliflozin ) in the morning.

After about two weeks of this regime. I felt that it was insufficient to maintain satisfatory levels so I started carb counting with reasonable success.

On the 11th July the consultant and I discussed my C-Peptide results and I was told that I'm actually unfortunately a 'Type 1' ( but for some reason he didn't want to say it was a type 1.5 ?!.... he seemed to be concerened that somehow being a T1.5 may mean no insulin or less of it etc. ? )
I was then advised that I stop my Metformin and Empagliflozin.
The diabetic nurse fitted me with a G7 patch and a Dexcom meter, she as did the consultant - advised that I should carb count as 1 unit of fast acting insulin per 10g of carbs taken the nurse also advised that I should add any insulin corrections ( for pre meal readings and for two hours plus, post meal readings - if necessary )
The dose to take accordingly was to take 1 unit for every 4 units of mmol/L - I wish to come down by.
A reading of 7 mmol/L being the baseline unit to work from .

My concern is that even when diligently following the recommendations - on 12/7/24 I had a hyperglycemic reading of 18 and then a few hours later, shockingly I went hypoglycemic to about 3. ( most unpleasant )
The following day I fared better but I was still getting higher readings than usual ( averaging around 14-17 )

Today my fasting level was 12.8 ( in the days before I stopped on the Metformin and Jardiance - my fasting levels were more like 6-9 ) so as well as my basal insulin I took 3 units of fast acting ( 1 for correction and 2 for my 20 carbs for the two slices of toast )
Pre lunch my reading was high at 16 so I took 2 correction units plus 4 more ( for 40g of carbs for my sandwiches using 4 slices of bread )
At 9pm this evening my reading was 14.8 so I corrected by 2 units and added 6 units for my approx 60g carbs noodles dinner I was going to have.
At 12 midnight my readings were 20 ! ( I hadn't been snacking since dinner ) I immediately then take 2 corrective units of fast acting from a new pen ( thinking perhaps the insulin itself was not working as it should )
At 1 am my levels were now 22 !...shortly after that my meter simply just said 'high”.

Something is not right.

Should I go back on the Metformin ? I understand it can help with insulin sensitivity ? My father takes insulin as well as Metformin ( supposedly a T2 but more likely misdiagnosed )
What about Empagliflozin ?


Any advice would be appreciated,

Thank you,
Shoran
 
Hello @SHORAN

Taking insulin has to start some where and your nurse has started you on what all type 1 diabetics start at which is the standard 1 unit of QA insulin to 10g carb, it's literally that a starting point. This will change inevitably, as your ratios tweak under the guidance of your nurse over time, just keep reporting back, it's best at this stage to write everything down in a diary so your nurse can see timings/carbs eaten/readings. Ultimately the action of fact acting insulin is 4 hours so in a perfect world best not to correct until this has worn off, keep glucose at hand at all times, including next to your bed too, when they hit you need to treat quickly, glucogel or glucotabs are good to use.

The focus of your diabetes care is to take ownership and fully manage your ratios yourself, for independence and to help you build confidence, but at this stage report everything back to your nurse, obviously hypos need to be reported immediately, but once patterns start emerging your nurse will be able to see what needs changing and where.

It really is a marathon though, not a sprint, don't be in a rush to hit perfect levels quickly, it does take time to adjust and settle in with new ratio changes, best wishes J
 
SHORAN said:
Should I go back on the Metformin ? I understand it can help with insulin sensitivity ? My father takes insulin as well as Metformin ( supposedly a T2 but more likely misdiagnosed )
What about Empagliflozin ?
Click to expand...

Sorry should of added - now you are taking insulin focus on getting your adjustments here right, I cannot comment on other medications as have little experience, metformin didn't work for me and haven't tried the other, but getting insulin levels adjusted will take time so see how you get on with your nurse with these.
 
Juicyj said:
Hello @SHORAN

Taking insulin has to start some where and your nurse has started you on what all type 1 diabetics start at which is the standard 1 unit of QA insulin to 10g carb, it's literally that a starting point. This will change inevitably, as your ratios tweak under the guidance of your nurse over time, just keep reporting back, it's best at this stage to write everything down in a diary so your nurse can see timings/carbs eaten/readings. Ultimately the action of fact acting insulin is 4 hours so in a perfect world best not to correct until this has worn off, keep glucose at hand at all times, including next to your bed too, when they hit you need to treat quickly, glucogel or glucotabs are good to use.

The focus of your diabetes care is to take ownership and fully manage your ratios yourself, for independence and to help you build confidence, but at this stage report everything back to your nurse, obviously hypos need to be reported immediately, but once patterns start emerging your nurse will be able to see what needs changing and where.

It really is a marathon though, not a sprint, don't be in a rush to hit perfect levels quickly, it does take time to adjust and settle in with new ratio changes, best wishes J
Click to expand...
Hi there Juicyj,

Thank you for your input. I appreciate it very much.
My consultant just emailed me back and suggested increasing my basal insulin from 12 to 16 over a period of 5 days and then further increase it ( didn't say how much though )
He was saying he thought my basal was insufficient and my blood sugars were escaping.

I responded asking for clarity as to why he was reluctant to say that I am a T1.5. He wanted to simply make it a T1.
I am unsure if this even makes much of a difference or not. Do you know ?

I also questioned why he advised that I stop METFORMIN ( and Empagliflozin for this matter ) because when I was taking these meds alongside both my basal and fast acting insulin , my levels were lower and more stable.
I thought METFORMIN increased your insulin sensitivity / lowers insulin resistance ?

My father ( a T2 but probably more like a 1 or 1.5 ) was saying in 20 years no professional has ever recommended he stop taking his Metformin alongside his insulin ( basal and fast acting )

I bl**dy hate this diabetic malarky. I'm sure you all do.

I worry that 10-20 years down the line I'll have all sorts of horrible diabetic related complications because of too many hyperglycemic episodes over the years.
ie; my biggest fear - is going blind.
Not good would be ..... painful neuropathy, kidney problems.... a slow early miserable death. etc

Arn't I cheerful eh ?
If it goes from bad to worse... to unbearable.
I'll just shoot myself.
 
Juicyj said:
Sorry should of added - now you are taking insulin focus on getting your adjustments here right, I cannot comment on other medications as have little experience, metformin didn't work for me and haven't tried the other, but getting insulin levels adjusted will take time so see how you get on with your nurse with these.
Click to expand...
Thanks Juicyj.

Shoran
 
SHORAN said:
Hi there Juicyj,

Thank you for your input. I appreciate it very much.
My consultant just emailed me back and suggested increasing my basal insulin from 12 to 16 over a period of 5 days and then further increase it ( didn't say how much though )
He was saying he thought my basal was insufficient and my blood sugars were escaping.

I responded asking for clarity as to why he was reluctant to say that I am a T1.5. He wanted to simply make it a T1.
I am unsure if this even makes much of a difference or not. Do you know ?

I also questioned why he advised that I stop METFORMIN ( and Empagliflozin for this matter ) because when I was taking these meds alongside both my basal and fast acting insulin , my levels were lower and more stable.
I thought METFORMIN increased your insulin sensitivity / lowers insulin resistance ?

My father ( a T2 but probably more like a 1 or 1.5 ) was saying in 20 years no professional has ever recommended he stop taking his Metformin alongside his insulin ( basal and fast acting )

I bl**dy hate this diabetic malarky. I'm sure you all do.

I worry that 10-20 years down the line I'll have all sorts of horrible diabetic related complications because of too many hyperglycemic episodes over the years.
ie; my biggest fear - is going blind.
Not good would be ..... painful neuropathy, kidney problems.... a slow early miserable death. etc

Arn't I cheerful eh ?
If it goes from bad to worse... to unbearable.
I'll just shoot myself.
Click to expand...
When beginning to use insulin and carb count remember it is a very steep learning curve which is a marathon and not a sprint. Keep a food diary and insulin dose diary and make an appointment to see your diabetic nurse. Ask to enrol into a DAFNE course or complete a https://bertiediabetes.com/ course to help. You will get there. It is difficult in the beginning and support is everything. I agree with your consultant that you need to get your basal insulin correct in the first instance. To check my basal dose, I eat a carb free meal or fast to see if my blood sugars keep a straight line. This is explained in the article below:

 
Hi Shoran - great details in your post.

Its not all bad - once you get it set up ad your insulin levels right, it will become day to day.

T1 is better today than ever as we have more advice and treatments available (and technologies) to help us manage it.

Been T1 Diabetic 51 years now - still able to see fine (no issues), no neuropathy, liver works well etc etc and not dead yet :cool: - its all possible, just takes some work and care to achieve it.

Yes it can be a minefield to get the right information and for us to understand the information given (very complex in some areas) to get the right set-up, but running a normal life without restrictions is very possible, it doesn't stop me doing anything, just changes my approach sometimes.
 
ert said:
When beginning to use insulin and carb count remember it is a very steep learning curve which is a marathon and not a sprint. Keep a food diary and insulin dose diary and make an appointment to see your diabetic nurse. Ask to enrol into a DAFNE course or complete a https://bertiediabetes.com/ course to help. You will get there. It is difficult in the beginning and support is everything. I agree with your consultant that you need to get your basal insulin correct in the first instance. To check my basal dose, I eat a carb free meal or fast to see if my blood sugars keep a straight line. This is explained in the article below:

Click to expand...
Thanks Ert,

That's cool, I'll have a good read of your link. It looks informative. Invaluable.

Shoran
 
CheeseSeaker said:
Hi Shoran - great details in your post.

Its not all bad - once you get it set up ad your insulin levels right, it will become day to day.

T1 is better today than ever as we have more advice and treatments available (and technologies) to help us manage it.

Been T1 Diabetic 51 years now - still able to see fine (no issues), no neuropathy, liver works well etc etc and not dead yet :cool: - its all possible, just takes some work and care to achieve it.

Yes it can be a minefield to get the right information and for us to understand the information given (very complex in some areas) to get the right set-up, but running a normal life without restrictions is very possible, it doesn't stop me doing anything, just changes my approach sometimes.
Click to expand...
Hello CheeseSeaker

A positive attitude indeed. Thanks ! you've cheered me up .

Appreciated .

Shoran

Ps I love cheese very much.
 
SHORAN said:
I responded asking for clarity as to why he was reluctant to say that I am a T1.5. He wanted to simply make it a T1.
I am unsure if this even makes much of a difference or not. Do you know ?
Click to expand...
Type 1.5 is not recognised by many doctors and has different meanings to the ones who do: to some it means Type 1 diagnosed as an adult and to others it is Type 1 with insulin resistance.
I am seeing a higher use of the term LADA but even then, it is unclear whether this is everyone who was diagnosed with Type 1 as an adult or only those who found their diabetes symptoms resembled type 2 and includes some insulin resistance.
As both are features/variants of Type 1, I see no benefit in having a diagnosis of something that may be ambiguous.
In your boat, I would be content to have it listed as Type 1.
 
I'm not really sure whether this will help or not, but I went through about 8 months where it really didn't seem to be clear whether I was type 1 or 2, and I had much of the same concerns. In the end, a consultant urged me to take a "special urine test" - which turned out to be a C-Peptide test. The purpose of the test, I know now, is really to look at whether there is any insulin production going on in the Pancreas in response to a high carb meal. There are very definite risks involved with mis-diagnosing what is going on, but in conjunction with the other (anti-body) tests that are available (not sure if you have had them as part of your blood work, but they look for presence of the molecules in your blood that would indicate an autoimmune system attacking your insulin production) - between the various tests, a consultant should be very clear about whether you are type 1 or 2. The big problem with the term type 1.5 is that it sounds kind of like it's half way between. There is no such thing as half way between type 1 and type 2 - one involves no insulin and one, too much.. so the treatment for one can be harmful to the other.

So - If I'm missing something please ignore, but this may be why the doctor is stressing type 1 - it's important that you and your support team are very clear that it is definitely one or the other - not something in between.
 
SHORAN said:
Can anyone shed some light as to what is happening ?

At the age of 50, I was misdiagnosed as T2 in 2017 .I attempted to control my diabetes with sensible eating and tablets etc.( and eventually after about 4 years I started to use basal insulin in the mornings as well )

I recently talked to my GP about the "Newcastle diet" as advocated by Professor Roy Taylor .( in an attempt to try reverse my diabetes ) However as I am already slim and my Hb1Ac levels were all over the place and rising .... my GP was concerned that this diet would be dangerous for me and wanted a second opinion as to exactly what type of diabetes I had . He was thinking I was more like a T1.
So it was arranged for me to see my consultant again ( who hadn't seen since 2017, supposedly because covid botched up hospital appointments - so they say )

I saw my consultant in February 2024 and he suggeted doing a C-Pep test which I had done in April . Shortly after that I was introduced to using fast acting insulin by the diabetes nurse...

I saw my diabetes consultant again on 11th July. Up till then I was using basal 'Insulin Glargine" ( Abasgalar) at 12 units in the morning daily and once a day initially injecting with 'Insulin Apart' ( Novorapid ) prior to dinner at around 6-8 units . In addition to the insulin injections I was on Metformin 1000mg slow release twice daily ( one in the morning and one in the evening ) plus one tablet of 10mg Jardiance ( Empagliflozin ) in the morning.

After about two weeks of this regime. I felt that it was insufficient to maintain satisfatory levels so I started carb counting with reasonable success.

On the 11th July the consultant and I discussed my C-Peptide results and I was told that I'm actually unfortunately a 'Type 1' ( but for some reason he didn't want to say it was a type 1.5 ?!.... he seemed to be concerened that somehow being a T1.5 may mean no insulin or less of it etc. ? )
I was then advised that I stop my Metformin and Empagliflozin.
The diabetic nurse fitted me with a G7 patch and a Dexcom meter, she as did the consultant - advised that I should carb count as 1 unit of fast acting insulin per 10g of carbs taken the nurse also advised that I should add any insulin corrections ( for pre meal readings and for two hours plus, post meal readings - if necessary )
The dose to take accordingly was to take 1 unit for every 4 units of mmol/L - I wish to come down by.
A reading of 7 mmol/L being the baseline unit to work from .

My concern is that even when diligently following the recommendations - on 12/7/24 I had a hyperglycemic reading of 18 and then a few hours later, shockingly I went hypoglycemic to about 3. ( most unpleasant )
The following day I fared better but I was still getting higher readings than usual ( averaging around 14-17 )

Today my fasting level was 12.8 ( in the days before I stopped on the Metformin and Jardiance - my fasting levels were more like 6-9 ) so as well as my basal insulin I took 3 units of fast acting ( 1 for correction and 2 for my 20 carbs for the two slices of toast )
Pre lunch my reading was high at 16 so I took 2 correction units plus 4 more ( for 40g of carbs for my sandwiches using 4 slices of bread )
At 9pm this evening my reading was 14.8 so I corrected by 2 units and added 6 units for my approx 60g carbs noodles dinner I was going to have.
At 12 midnight my readings were 20 ! ( I hadn't been snacking since dinner ) I immediately then take 2 corrective units of fast acting from a new pen ( thinking perhaps the insulin itself was not working as it should )
At 1 am my levels were now 22 !...shortly after that my meter simply just said 'high”.

Something is not right.

Should I go back on the Metformin ? I understand it can help with insulin sensitivity ? My father takes insulin as well as Metformin ( supposedly a T2 but more likely misdiagnosed )
What about Empagliflozin ?


Any advice would be appreciated,

Thank you,
Shoran
Click to expand...
Hi, I discovered years ago that carb counting ref 10g carb to 1 unit insulin just does not work.

It certainly sounds like you have LADA - as I have. I went through a very similar path to what you describe.

My main advice is that 'Novorapid' is anything but rapid for me. I could take a corrective dose but it doesn't kick in for at least six hours, if not longer. There is a much improved version of Novorapid called 'Fiasp' It is also insulin Aspart but with an additive that makes it work faster - which it does. My advice is to request a change to Fiasp, and don't take no for an answer. Also, while you still eat significant carbohydrate then it is very easy to get onto a sawtooth pattern of blood glucose - go low eat carbs, up to high, bolus jab, etc. I suggest you cut down on fast acting carbs, biscuits, cake, bread and certainly no sugar containing drinks or sweets (unless combating a hypo). I find this regime helps greatly in keeping my BGs in the target values (using Libre 2 system).

One other thing - Glargine can cause enormous hypos if it gets into a blood vessel - this happened to me once and I was almost hospitalised. I now use 'Tresiba' which can't do this - much better control with it too.

Good luck!
 
Chris24Main said:
I'm not really sure whether this will help or not, but I went through about 8 months where it really didn't seem to be clear whether I was type 1 or 2, and I had much of the same concerns. In the end, a consultant urged me to take a "special urine test" - which turned out to be a C-Peptide test. The purpose of the test, I know now, is really to look at whether there is any insulin production going on in the Pancreas in response to a high carb meal. There are very definite risks involved with mis-diagnosing what is going on, but in conjunction with the other (anti-body) tests that are available (not sure if you have had them as part of your blood work, but they look for presence of the molecules in your blood that would indicate an autoimmune system attacking your insulin production) - between the various tests, a consultant should be very clear about whether you are type 1 or 2. The big problem with the term type 1.5 is that it sounds kind of like it's half way between. There is no such thing as half way between type 1 and type 2 - one involves no insulin and one, too much.. so the treatment for one can be harmful to the other.

So - If I'm missing something please ignore, but this may be why the doctor is stressing type 1 - it's important that you and your support team are very clear that it is definitely one or the other - not something in between.
Click to expand...
Hi, what about LADA? Latent autoimmune diabetes in adults? Characterised by gradual loss of pancreas insulin production, so the symptoms come on much more slowly than Type 1.
 
agwagw said:
Hi, what about LADA? Latent autoimmune diabetes in adults? Characterised by gradual loss of pancreas insulin production, so the symptoms come on much more slowly than Type 1.
Click to expand...
LADA is a variant of Type 1.
As someone with this variant, can you see any benefit on the variant being noted in your health records? I too was diagnosed as an adult and my insulin production decreased over many years. But I have never seen any disadvantage with being known as Type 1 which is understood by far more HCPs.
 
agwagw said:
My advice is to request a change to Fiasp, and don't take no for an answer.
Click to expand...
I am not convinced Fiasp is a good insulin to start on - I changed to it about 4 years ago and found its quirks meant it took some time to get used to. Especially as the speed (and dose) at which is works is very dependent upon your starting BG.
It would not surprise me if that is why NovoRapid is used as a safer starter bolus. It's much easier to focus on getting the dose right and coming back to baseline after 4 or 5 hours even if can be rather (Novo)Sluggish.
agwagw said:
Also, while you still eat significant carbohydrate then it is very easy to get onto a sawtooth pattern of blood glucose - go low eat carbs, up to high, bolus jab, etc. I suggest you cut down on fast acting carbs, biscuits, cake, bread and certainly no sugar containing drinks or sweets (unless combating a hypo)
Click to expand...
Or learn how to dose for all carbs and not restrict your diet.
I tried going low carb., It did not suit my lifestyle (frequent travelling and eating out for work) and very low carb was an absolute pest because I had to work out how to bolus for protein which, for me, was a different timing and insulin to protein ratio for every type of protein.
I can see some benefits of lower carb but whilst working out insulin to carb ratio, the usual advice is to eat "normally" so you do not need to worry about insulin to protein or the insulin resistance which low carb seems to bring to some people with Type 1.
agwagw said:
One other thing - Glargine can cause enormous hypos if it gets into a blood vessel - this happened to me once and I was almost hospitalised. I now use 'Tresiba' which can't do this - much better control with it too.
Click to expand...
I agree Lantus can be concerning, It was the new kid on the block when I started but I see Tresiba and Levemir have taken over.
Tresiba seems to be a bit if a marmite for basal dosage. It's long stable profile is loved by those who have a steady need for background insulin over 3 or 4 days but if your needs vary day to day or night to day, it can be challenging.
 
The main -and very serious - disadvantage of LADA not being known amongst the medical fraternity is that it is so often misdiagnosed as Type 2. What follows is years of Metformin, diet etc etc, persistent high BGs and general disbelief that you are a 'compliant' patient until they begin the insulin regime. Typical type 1 has a very rapid onset. The years of poor diagnosis and high BG can lead to eye damage, as in my case. All I can say is that you were lucky as being classed as Type 1 not type 2!
 
agwagw said:
Typical type 1 has a very rapid onset.
Click to expand...
NO IT DOESN'T.
Type 1 has a very rapid onset in children.
That is not the case with adults who make up more than half of the people diagnosed with Type 1.

The problem with misdiagnosis is too many doctors believing Type 1 can only be diagnosed in children regardless of the speed of onset.

Apologies. We are derailing this thread.
 
In Response said:
I am not convinced Fiasp is a good insulin to start on - I changed to it about 4 years ago and found its quirks meant it took some time to get used to. Especially as the speed (and dose) at which is works is very dependent upon your starting BG.
It would not surprise me if that is why NovoRapid is used as a safer starter bolus. It's much easier to focus on getting the dose right and coming back to baseline after 4 or 5 hours even if can be rather (Novo)Sluggish.

Or learn how to dose for all carbs and not restrict your diet.
I tried going low carb., It did not suit my lifestyle (frequent travelling and eating out for work) and very low carb was an absolute pest because I had to work out how to bolus for protein which, for me, was a different timing and insulin to protein ratio for every type of protein.
I can see some benefits of lower carb but whilst working out insulin to carb ratio, the usual advice is to eat "normally" so you do not need to worry about insulin to protein or the insulin resistance which low carb seems to bring to some people with Type 1.

I agree Lantus can be concerning, It was the new kid on the block when I started but I see Tresiba and Levemir have taken over.
Tresiba seems to be a bit if a marmite for basal dosage. It's long stable profile is loved by those who have a steady need for background insulin over 3 or 4 days but if your needs vary day to day or night to day, it can be challenging.
Click to expand...
Novorapid can lead to serious hypos 6 - 8 hours later - often at night if you main meal is in the evening. This is far worse than the rapid action of Fiasp, which is operating as on expects for a 'rapid' insulin. Not sure what you mean reference protein - what were you eating with the protein? As for the rest of your comments, well that is your experience I can't comment further. My thoughts come from 30 years of experience as a patient and professional biochemist.
 
In Response said:
NO IT DOESN'T.
Type 1 has a very rapid onset in children.
That is not the case with adults who make up more than half of the people diagnosed with Type 1.

The problem with misdiagnosis is too many doctors believing Type 1 can only be diagnosed in children regardless of the speed of onset.

Apologies. We are derailing this thread.
Click to expand...
I disagree except that you are derailing the thread.
 
Chris24Main said:
I'm not really sure whether this will help or not, but I went through about 8 months where it really didn't seem to be clear whether I was type 1 or 2, and I had much of the same concerns. In the end, a consultant urged me to take a "special urine test" - which turned out to be a C-Peptide test. The purpose of the test, I know now, is really to look at whether there is any insulin production going on in the Pancreas in response to a high carb meal. There are very definite risks involved with mis-diagnosing what is going on, but in conjunction with the other (anti-body) tests that are available (not sure if you have had them as part of your blood work, but they look for presence of the molecules in your blood that would indicate an autoimmune system attacking your insulin production) - between the various tests, a consultant should be very clear about whether you are type 1 or 2. The big problem with the term type 1.5 is that it sounds kind of like it's half way between. There is no such thing as half way between type 1 and type 2 - one involves no insulin and one, too much.. so the treatment for one can be harmful to the other.

So - If I'm missing something please ignore, but this may be why the doctor is stressing type 1 - it's important that you and your support team are very clear that it is definitely one or the other - not something in between.
Click to expand...
Fair comment Chris, thanks. Good points .
 
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