Back to square one...

[Persil]

Hi all!

I hope you are all well!! Ok, just thought I'd update those of you that know about my friend.

Friday just gone, she had her glucose intollerance test. Her fasting BG level was 5.5mmol (perfect) and she jumped up to 11.8mmol 2 hours after. But we still have to wait another two weeks to find out what the actual diagnosis is. The ironic thing is, after her test she had a sandwich, packet of crisps and a hot drink from the cafe at the hospital, and she said she felt really bad before we left. I tested her, and she was at 15.8 😱

We're very much back to square one again. I'm not too sure what we expected, I think maybe something more solid to go on. Like, despite her high levels, no one has said anything to her about changing her diet or anything like that to help control it in the short-term.

We both did a bit of a cry, with two others we live with, when we got back to the flat. All of us, after watching her suffer for so long, were really gutted about getting no where. I think we all put a little too much faith in the appointment. Looking back now, not too sure why.

Anyway, that's the stage we're currently at. Anyone have any advice as to what we should do now? Is there anything we could be doing just so she gets some of her day/evening back? She sleeps so much at the moment, she's sometimes loosing whole days!!

Thank you!!

Vicki 🙂
xxx

 

[shiv]

Honestly, I would go back and ask for a second opinion. Take notes of the tests you've done. It could be some form of slow-onset type 1, or well anything really! But whatever it is, she isn't well and needs to be treated ASAP. DKA can happen very very quickly - JDRF has just done a campaign about undiagnosed type 1. Please get a second opinion!

 

[Northerner]

I must admit I am a little confused as 11.1 mmol/l two hours after an oral glucose test is sufficient for a diagnosis of diabetes, so the 11.8 should be confirmation. See http://www.diabetes.org.uk/About_us...ations/New_diagnostic_criteria_for_diabetes_/

Has she had other tests done then that are being used to determine type of diabetes perhaps?

 

[shiv]

Also just wanted to say again what a fab friend you are to her 🙂

 

[Adrienne]

Mmm I totally agree. Go back. Sometimes a fasting test first thing in the morning will show nothing. It is two hours after eating, the best time to test as your own body for a non diabetic will come back to range as the body is controlling it. If she is in the 11's and then 15's her body is controlling nothing. Something is going on and she can't be dismissed like that.

Has she been keeping a diary of levels? I would suggest that either she invest in a kit and strips which will cost or just buys a couple of the cheaper kits, there are 20 strips in each.

She can keep an eye on stuff and test at good times to test and then go with the evidence if they won't take her seriously.

This definitely needs more looking into.

 

[mcdonagh47]

Hi all!

Anyone have any advice as to what we should do now? Is there anything we could be doing 🙂
xxx

As Northie says 11.1 at the 2 hour stage of the OGTT is the classic diagnostic criteria for Type 2 Diabetes, its a surrogate measure of the point at which Insulin Resistance outweighs Beta Cell Mass as plotted against each other on the Starling Curve of the Pancreas.

Provisionally treat her as though she has Type 2 Diabetes unless/until told otherwise.
Pack in the Sandwiches and crisps.
Go to the Sticky for Type 2s in the Newbies section and print off Maggie Davey's "Open Letter to the Newly Diagnosed Type 2". Take it from there.
As a matter of interest - how old is your friend and how much overweight is she ?

btw two random bg tests over 11.1 are also sufficient for a diagnosis of Type 2 Diabetes. Her 11.8 and 15.8 look good enough for that.

 

[cazscot]

I agree with the others, 11.8 mmol/l 2 hours after a OGTT is absolutly indicative of diabetes no matter what the fast levels are. As others have said she may need other tests to confirm which type she is. I would urge your friend to get a second opinion.

 

[mcdonagh47]

I agree with the others, 11.8 mmol/l 2 hours after a OGTT is absolutly indicative of diabetes no matter what the fast levels are. As others have said she may need other tests to confirm which type she is. I would urge your friend to get a second opinion.

She hasn't had the First Opinion yet Caz. She will get that in two weeks. OGTT's are typically conducted by technicians or nurses who don't make instant diagnoses from it ( unlike us 😉). The OGTT result will go to an ENDO/Doc to make the formal diagnosis/interpretation.
Being left in limbo with poor or no advice to start with, is par for the course for Type 2 diabetics.

 

[shiv]

She hasn't had the First Opinion yet Caz. She will get that in two weeks. OGTT's are typically conducted by technicians or nurses who don't make instant diagnoses from it ( unlike us 😉). The OGTT result will go to an ENDO/Doc to make the formal diagnosis/interpretation.
Being left in limbo with poor or no advice to start with, is par for the course for Type 2 diabetics.

I think she's 19, so typically would be likely to be type 1 rather than 2. But who knows (clearly not the HCPs...)

 

[Alan S]

Hi all!

I hope you are all well!! Ok, just thought I'd update those of you that know about my friend.

Friday just gone, she had her glucose intollerance test. Her fasting BG level was 5.5mmol (perfect) and she jumped up to 11.8mmol 2 hours after. But we still have to wait another two weeks to find out what the actual diagnosis is. The ironic thing is, after her test she had a sandwich, packet of crisps and a hot drink from the cafe at the hospital, and she said she felt really bad before we left. I tested her, and she was at 15.8 😱

We're very much back to square one again. I'm not too sure what we expected, I think maybe something more solid to go on. Like, despite her high levels, no one has said anything to her about changing her diet or anything like that to help control it in the short-term.

We both did a bit of a cry, with two others we live with, when we got back to the flat. All of us, after watching her suffer for so long, were really gutted about getting no where. I think we all put a little too much faith in the appointment. Looking back now, not too sure why.

Anyway, that's the stage we're currently at. Anyone have any advice as to what we should do now? Is there anything we could be doing just so she gets some of her day/evening back? She sleeps so much at the moment, she's sometimes loosing whole days!!

Thank you!!

Vicki 🙂
xxx

As a non-NHS outsider looking in, please excuse me if I say the wrong thing.

I would advise your friend that whatever the official diagnosis she should ACT as if she has been diagnosed. By doing that she has nothing to lose and a great deal to gain. If the diagnosis becomes official, she will have a head start. If not, she can still improve her health. Her numbers and the lack of urgency displayed by the medics imply type 2. Even if she is type 1, it won't hurt to commence on that presumption until the GAD and C-Peptide or escalating numbers show otherwise.

I'm biased, because I wrote it, but I reckon this might help her (click on it): Getting Started

If the NHS won't supply a meter and strips then I reckon buying them is still a very wise investment.

OK. I'll pull my head in now. Best wishes for your friend.

 

[Caroline]

Get a second opinion and follow suggestions made here. I think I'd also be inclined to act as thoe I had been diagnosed and modify what I eat and drink. The upside is your friend may begin to feel better.

Your friend is lucky to have someone so supportive, you have come to the right place to get information.

 

[Mark T]

...I would advise your friend that whatever the official diagnosis she should ACT as if she has been diagnosed. By doing that she has nothing to lose and a great deal to gain...

This is exactly the advice that was given to me by my GP after the first blood test came back as he ordered a fasting test to confirm.

A diabetic diet isn't a bad thing, it's nice and healthy!

 

[Copepod]

Having worked somewhere that carried out oral glucose tolerance tests (OGTTs), I reckon it might be because a diagnosis can only be made officially on the basis of laboratory tested blood, not on the basis of capillary blodd tested in a point of care machine.
Personally, I tended to tell the person that their results were suggesting that they might have type 2 diabetes, and emphasise that they could do much to control the condition through diet and exercise and that medication would be offered if necessary.
Hope Persil's friend gets the help she needs at the appointment in 2 weeks - it's a while to wait, but probably not dangerous in slowly developing diabetes (whatever type it turns out to be) in a young adult.

 

[shiv]

but probably not dangerous in slowly developing diabetes (whatever type it turns out to be) in a young adult.

But there is a chance it could turn serious very quickly. 2 weeks is a very long time.

A diagnosis of suspected diabetes should not be delayed - please get your friend seen again!

 

[AlisonM]

I suppose she could be either one of those new-fangled types, MODY or LADA.

I agree with everyone else though, keep bugging the doctor, take notes of all the things you've mentioned here. Some of the remind me of me before Dx, especially the sleeping thing. Given the readings you've noted, a change in diet can't hurt and may actually help her feel better while you wait to hear from the doctors.

 

[Persil]

Thank you all for your advice. This is where we both come now if we're ever in doubt.

My friend's 19, and not overweight, so I think that rules type 2 out, yes?!

Her mum is glucose intollerant, which is a possibility, but after some google-ing, there is one significant difference between the symptoms of diabetes and glucose intollerance, and that is that one symptom of diabetes is that feeling of no energy (please correct me if I'm wrong).

I definitely want her to get a second opinion, so I think we're going to go back to the GP as he was the only one that took us seriously -- He was ready to diagnose her there and then with an 8.9mmol given her other reading that she showed him. And, yes, we have been keeping a record of her readings.

With regard to what to do in the mean time, she is on my "diabetic diet", and has been for a while now. She had to come off it for three days before her Glucose Intollerance test and she hated it, because she was back to feeling really ill again. I think with what I eat, she still doesn't feel great, but not so bad that she actually gets some of her day back.

Thanks again. Any more advice will be greatly appreciated. We're at a loss as to what to do now.

Vicki 🙂
xxx

 

[Tezzz]

Hi Vicki,

I'd definitely get your friend to book an appointment to see the GP ASAP.

I had to tell my GP that I would blame him if I became too tired to work if nothing was done and it got results.

You and your friend must stand your ground on this one. Be firm. If doc says no, ask what he bases his answers on.

 

[Ellie Jones]

with the GTT has to go to the Lab to be fully tested as the urine samples taken also has to be compared to the blood results, if you could do it with finger stick tests, they wouldn't go through the expensive lab process..

Her appointment with her gp is a primary one made before the GTT which allows for the results to be sort and travel through the system, so it availavble on the patient rescords when she has her appointment..

If the Lab find that result indicate that it's T1 diabetes and/or in a range that requires immediate attention, they will contact her surgery directly (as the process the paperwork) and her doctor will call her straight into surgery to be sorted or may as they did in my case phone through and told me to report to a ward at the hospital (they were arranging my addmition from their end as I travelled over)

What she can do in the mean time which will be helpful is see herself as a T2 diabetic cut out high impact/processed carbs lower her over all carb intake, if in the mean time she becomes ill, feels sick etc get her to A&E or contact her surgery or out of hours doctor..

 

[everydayupsanddowns]

My friend's 19, and not overweight, so I think that rules type 2 out, yes?!

Nope. Diabetics of all types can be all different sorts of shapes and sizes. People get diagnosed with T2 every day who are normal weight or under weight.

 

[mcdonagh47]

Nope. Diabetics of all types can be all different sorts of shapes and sizes. People get diagnosed with T2 every day who are normal weight or under weight.

Ethnicity is also a factor. South Asians about five times more likely to be T2 than Europeans.
Is Persil's friend a WASP ?

11.1 at the 2 hour mark of an OGTT is definitely the criteria for dxing T2 diabetes. For a suspected T1 they would test for ketones not send the person for an OGTT surely???

Sounds like she is not T1 or T2 perhaps. Now we hear her mother was IGT but the criteria for that is 7.8 to 11.0 at the 2 hour mark of the OGTT. Persil's friend was beyond that at 11.8.

Best wait for the two weeks for the proper interpretation of the OGTT while going back onto Persil's diet.