New T2 Diagnosis by phone call and then nothing

[Justin]

I was called by my surgery six weeks ago and told that my routine blood test had come back showing I had type 2 diabetes . Then nothing ! Absolutely zero guidance as to what I should do next and no follow up appointments ! I called and left messages for the doctor and the practice secretary with no joy and it was only when I physically went into the surgery last week and demanded to see one or the other, was I given an appointment to see the diabetic practice nurse . Is this level of aftercare ( or lack of it ) normal ? Since the initial phone call, I have cut out all added sugar and have now been totally carb free for a week . Got a BS monitor a few days ago and am now monitoring my blood sugar a few times a day . I'm also exercising every day and am hoping that this , together with the new diet , will lower the numbers . I am very slim with almost no body fat , so the diagnosis was a shock . The appointment with the diabetic nurse is in three weeks . Will they actually give some guidance then ? I do hope so. Also no mention at all of medication form the doctor. Is this good news or just more bad followup ? my BS levels swing from 7 to 15 at the moment ( average is around 9 ) is it normal to have such a huge swing in the numbers ?

 

[Drummer]

Hello @Justin and welcome to the forum.
There will most likely be things going on in the background - so you will eventually be called to have eye and foot checks, and you will get into the system, but it can feel like you have stepped off a cliff and are still falling for a while.
If you are not eating any foods containing carbs and are still seeing up to 15mmol/l - presumably after eating - that might indicate that you are not an ordinary unexciting type two, as usually numbers will reduce fairly quickly on such a severe lack of carbs - though it night be an idea to outline what you are eating, just in case there is some problem with what is defined as a carbohydrate.

 

[Docb]

Hi @Justin and welcome from me.

If you read around the forum you will find that surgeries vary widely in their response to a T2 diagnosis and although what you have seen is at the extreme end it is not uncommon. As drummer suggests it is likely that eventually you would have been "put in the system" but some surgeries do not seem to understand the importance of keeping the patient informed. It has often occurred to me that they would not accept that level of service from whomsoever looks after their motor car!

If you are, like most, the sort of person that wants to get on top of things quickly and deal with problems before they get serious, then I suggest you read around the forum and check out the learning zone and get an understanding of what diabetes is all about. You might also pester your surgery to obtain your HbA1c result, the test which will have led to your diagnosis. There you need the number, not some vague statement about what it means. Having that number will tell you where you are on the diabetic scale and put into perspective the sort of things you might do to get it down.

Looks like you are already self monitoring. Spot measurements of blood glucose do swing about so it is a good idea to be a bit systematic about when you take readings. Swings from 7 to 15 and an average of 9 are higher than most of us T2's would look for. I look for 5 to 10 with an average around 6 and a standard deviation of around 1

My take on blood glucose testing is always to measure first thing in the morning. It gives me a measure of where my BG is at before it gets influenced by food, exercise and all the other things that cause blood glucose levels to go up and down through the day.

The next thing is finding out the effect of what you eat. In simple terms carbohydrate you ingest (and it is impossible to be carb free) turns into glucose which ends up in your blood stream. Everybodys system is different in terms of the numbers you get but the principal is the same. One way of getting to grips with this to start to keep a food diary and do some testing before you eat and a fixed time afterwards - most say 2hrs. Look at the data and look for patterns. Find things that give you the biggest rises and cut back on those things in your diet. You need to do a bit of experimentation but eventually the big things will emerge.

You say you are slim and exercise so you need to keep in the back of your mind that you might not be a straightforward T2 so keep a good record of your BG measurements so if there is something else going on, you can take it up with the diabetes nurse when you see them.

In the meantime, keep asking questions on here. We are a friendly bunch with lots of lived experience for you to tap into.

 

[everydayupsanddowns]

Welcome to the forum @Justin

Sorry to hear you’ve not been given much information to go on by your surgery but glad you have found the support of the forum. Hopefully the friendly members here can share their experiences, which might fill in some of the blanks for you.

As someone whose presentation is a little untypical, you might want to ask some questions about checks for different types of diabetes. Some GPs are unused to the idea that type 1 diabetes (or other auto-immune types of diabetes such as LADA) can develop in adulthood. 50% of cases of T1 are diagnosed in adults.

So while it is entirely possible to develop T2 while being a normal weight or underweight (particularly if you are TOFI - thin outside, fat inside - and have a build-up of visceral fat around your organs), it might be helpful to get checked for GAD antibodies and have your cPeptide measured.

If your immune system has been destroying the insulin-producing cells in your pancreas, there will come a tipping point where no amount of carbohydrate restriction will be enough to keep your blood glucose levels in check, and you’ll need to treat your diabetes with insulin.

Good luck and let us know how you get on 🙂

 

[Justin]

Thanks for the replies and the good advice . I am quite concerned that the BS levels still seem very high as an average and that the top numbers I' m getting are very, very high even after weeks of diet change and a huge ramp up in daily exercise ( long speedy walks rather than high intensity gym stuff) Perhaps I'm not actually a type 2 at all ? I guess all this will come out when I see the Diabetic nurse and get into the system but I am concerned that its still four weeks until that appointment. I am taking my levels when I wake up, before I eat and 2 hours after I eat. My general BS reaction to food still seems extreme even after five weeks diet change and i'm pushing up against levels that indicate a hospital visit according to some of the internet advice. Should I go the A&E if I keep getting spikes of 15 ? or am I panicking unnecessarily

 

[Justin]

just to add I stopped all added sugar ( chocolate, ice cream , sweets , puddings etc ) the day i has my first BS level alert seven weeks ago . I didn't know about the carbs / glucose link then but for the last seven days i've gone to a no carb diet eating just meat ( lean and fatty ) with salad and nuts mixed in (and nuts and avocado for snacking ) Drinking only water and black tea. zero added sugar. zero processed foods. Is it too soon to see the results i'm expecting .

 

[rebrascora]

Hi

It sounds like yopu have made some quite radical dietary changes. When you say spikes of 15.... are you going up to 15 or are your levels rising 15 mmols above your starting reading? I would only advise someone to attend A&E pronto if they were getting consistent upper 20s-30 readings that were not coming down.
Do you have a means of testing for ketones? If not, it would be a good idea to get some Ketostix (Approx £5) from a pharmacy tomorrow so that you can test your urine. Ketones above 1 are what ring the alarm bells together with mid teens BG levels or above. By that I mean that mid teens BG levels in themselves are not too concerning but it is worth testing your urine for ketones if your levels are regularly in the mid teens and above. If you get a reading in excess of 1 for ketones, then seek medical advice....via surgery or 111. If yopu start to feel unwell....abdominal pain, respiratory problems and/or ypur breath smells like pear drops then A&E.

It is certainly possible that you are Type 1 and not type 2, especially if you are lean and you are still getting high BG levels despite dramatically reducing carbs.
Please be cautious about claiming to be eating zero carbs. There are carbs in salad and nuts. Very low carb is how I would describe your diet. Saying you are Zero carb makes your case seem less plausible. That may seem pedantic but it is relevant. Keep a food diary along with your before and after BG readings and a rough estimate of your carbs per meal. Drink plenty of water and get some Ketostix and start testing for ketones when your levels are consistently in the mid teens. Chase up the appointment with the nurse.... maybe email them if your surgery has an online contact facility and let them know the situation and your concerns about possible type 1 because you are slim and eating very low carb and still getting high BG numbers and considering attending A&E because you are concerned. Hopefully that will prompt them to respond.

As a misdiagnosed Type 1 myself I can understand your concerns. Hopefully it will get sorted out sooner rather than later, but you are doing all the right things at the moment apart from testing for ketones, and hopefully you will implement that tomorrow.

 

[Justin]

Really appreciate that answer . I have ordered some ketones testing strips that should arrive tomorrow and will check then. Also. I take you point about the low carb vs zero carb . I have done as much as I think I can to take carbs out of the equation pretty much, so I can try to get control of my BS levels . I've had one 15 reading and one 14.7 reading in the last five days but nothing above and it seems now to be settling on 8ish before meals up to 10ish 2 hours after , so the swing range seems to be reducing . I agree that I should nudge the surgery for advice etc .

 

[Lucyr]

The ketone strips will most likely say you have high ketones but whilst eating so low carb you won’t be able to tell if they are dietary ketones from the lack of carbs or dangerous ketones. Not sure they’ll be of much use unless you increase your carb intake, the high ketone readings may just panic you.

 

[Leadinglights]

You should be cautious of reducing your carbs so dramatically very suddenly as it can cause some issues with your eyes and nerves as glucose levels reduce your body need to adjust to lower levels.
I reduced my carbs to 70g per day and had problems with my near vision which took some time to recover.

 

[Justin]

Oh ! That's new advice .I'm still getting mean be readings in the mid 9s so I have plenty of sugar in the system despite the diet change but God knows what it was before I changed the diet and cut out all added sugar . In the mid teens at least I'm guessing . So your saying a dramatic drop in sugar levels is Not a good thing ? Also I am going through a bout of. Severe diarrhea which is a transitional thing ? High carbs to v low carbs and high fat diet ? Thanks for listening by the way . Untill I see the diabetic nurse in a few weeks I really am flying blind here

 

[Justin]

So I just phoned the surgery and got my levels form the original blood test that caused the phone call to alert me me that I had diabetes. The Hba1c was 117 and plasma levels were 17.2 . These seem very high ??

 

[rebrascora]

Those levels are very high and similar to my own at diagnosis. I managed to get my BG down into single figures after 5 weeks of progressively stricter low carb eating (plus metformin and Gliclazide which had no real impact) but it wasn't sustainable long term and I was started on insulin and then tested for Type 1 a couple of months later, which confirmed it.

It is normal for vision to be blurry when you change your BG levels particularly if they have been high for a while but the blurriness is not the issue as it is down to the eye lens changing shape. It is the risk of damage to the very fine blood vessels which feed the retina due to dramatic change in HbA1c which is more of a concern.

As regards Ketostix and being on a low carb diet, yes, you will get dietary ketones which are usually pretty low level but if you are Type 1 and your BG levels start to soar, mid teens and above then you are at risk of Diabetic Ketoacidosis (DKA) and the Ketostix will help to alert you to rising levels and potential danger. At least that is my understanding of it.

 

[Justin]

the risk of eye damage is a huge concern as i only have one good eye as it is. if i lose vision in that i'm pretty much screwed !! ( the other eye problem was congenital issue from birth and not a later issue in adulthood )

 

[Lucyr]

It’s much safer for your vision to make changes gradually rather than a sudden dramatic change in lifestyle, to bring your blood sugars down slowly. You should get invited to an eye screening in the next few months, but if you have any eye problems in the meantime see an optician. It isn’t advised to get new glasses until your bgs have been stable for a few months though so be sure to let them know you have a new diagnosis of diabetes if seeing an optician.

 

[Justin]

The Keytones strip arrived today and the first test was negative . no sign of keytones . quite surprised actually

 

[rebrascora]

The Keytones strip arrived today and the first test was negative . no sign of keytones . quite surprised actually

Did you follow the instructions and keep the strip submerged for 15 seconds I think it is?
I am quite surprised there were no ketones at all when you are eating so low carb, which is why I asked the Q above.
Are you noticeably losing weight or holding steady? I found the weight loss before being started on insulin pretty spectacular. It was a steady 4-5lbs a week and there was clearly muscle wastage as well as fat and water disappearing. I had a couple of stone to lose so I wasn't overly upset about it but it was impressive how fast it dropped off.

 

[Justin]

Noticeably losing weight over the last 18months to two years and was eating ravenously to counter act this ( high carb/ high sugar diet ) but to little or no effect ( of course i had no idea then that this was the worst thing i could have done ) I am beginning to look very wasted as I was already very thin apart form some minor belly fat. I will try the test again and leave in longer .

 

[Justin]

Just to add the doctors put the weight loss down to possibe cancer but after running the full gamete of MRI , CT scans . and even a prostate biopsy !! this has been discounted. I really wish they had done a blood sugar test earlier !!

 

[Justin]

just repeated the test and left the strip in for over 15 seconds . still came out negative .