Newbie post - unexplained prediabetes.

For over two years I have had prediabetic HbA1c test results, creeping upwards from 43mmol/mol in a routine test in May 2018 to 47 at the last test (just before lockdown in March). 48 will indicate diabetes. After the first test result I bought a blood glucose monitor and, whilst, thoroughly researching the subject, immediately put myself on a very low carb diet resulting in a reduction from an already good BMI of 19.5 to 18.3. I have never been overweight, eaten healthily (and in addition I followed the 5:2 diet for 4 years prior to the first test) and always fit and active through both cardiac and resistance exercise. I have a sympathetic GP who, having consulted our local endocrinologist, offered a CT scan of the pancreas in December which showed no problems. I would really like to know what the cause is of the prediabetes, since it is clearly atypical, and would like to have a fasting insulin test to work out whether the problem is insulin resistance or glucose intolerance but the endo says there are no appropriate tests he can do without further symptoms and the GP has her hands tied with nothing further she can suggest. I received an invitation from my surgery to join the NHS diabetes prevention programme but declined explaining that I was already doing everything the programme could suggest. With lockdown and all the NHS restrictions in place, I don't feel I can ask for a further blood test at the moment and it seems unlikely that I will see the same GP again. Nor do I feel there is actually any interest from the medics to do anything other than to 'watch and wait', presumably for diabetes or something more specific to finally kick in so they know what they're dealing with. I've read endless studies and papers about age related beta cell reduction (I'm 70) and how beta cells can be regenerated and have tried various tweaks to my diet and exercise programme but the only thing I've found that shows a significant but temporary improvement in my finger prick tests is exercising half an hour or so after a meal which blunts the postprandial spike. Nevertheless, my fasting BG (which should be under 5.5 to be normal) is almost always in the 6s, sometimes the 5s but never the 4s. Very, very occasionally (about 6 times in 2 years) I have been astonished to have a reading during the day in the 4s which I could never justify on the basis of anything I had done.

Do I just have to accept that there is nothing further I can do and wait for what seems an inevitable decline into diabetes, which I really want to avoid?

[Koalajane]

I was diagnosed type 2 and immediately put on gliclazide. I have PMR so take steroids long term which makes your sugars spike. 6 months after my hba1c went to 39 so I was taken off the gliclazide and now control it with diet and exercise. I am not sure how you eat but I have cut my carbs down and this is helping to keep my hba1c down with the last 2 over the last year being 35 now. I walk at least 10,000 steps a day and the low carb high fat diet helps a lot.

Good luck

[Hidden in reply to Koalajane]

Thanks very much for your reply. I am already on a very low carb diet and take a lot of exercise but it hasn't changed my blood test results for the better which is why it is so frustrating!

[Activity2004 Administrator]

Hi and welcome to the group, Hidden . Thank you for introducing yourself to everyone. Please feel free to continue posting and commenting, asking questions, take a look at the Topics/Events/Pinned Posts/Polls sections for some ideas/suggestions. Also, continue to meet the group members. We will be happy to try and answer all your questions to the best of our abilities.

Has your doctor given you any medication? Insulin? Said anything about changing your diet?

What do you usually have for your breakfast/lunch/dinner/snacks?

Sometimes, when people are stressed out, the blood sugars can go higher/lower than normal.

[Hidden in reply to Activity2004]

Hi, and thanks for your interest. I am not on any medication as I am not yet categorised as diabetic. The GP has not advised on diet but knows I am on a very low carb diet with no starchy or sugary foods at all (no bread, rice. pasta or potatoes, except small amounts of sweet potato) and omitting the higher carb root veg and fruits. I stick to either animal or veg protein, especially nuts, with vegetables, and eat eggs and other dairy. If I want to sweeten anything e.g. rhubarb, I use xylitol and if I bake, I use recipes with almond flour and xylitol. I have tried reducing meat and dairy foods to try a more plant-based diet for a period of time but seen no difference from a low carb diet that includes those foods. I don't have many snacks but when I do I have nuts or a 12.5g piece of 85% chocolate which, according to the wrapper is about 2.3g carb. I'm aware of the issues around stress and blood sugar but haven't had a cortisol test and don't think it is the cause of this now fairly long-term state . All the research I have done leads me to believe it is caused by a reduction in beta cell production but there seems little that will ameliorate that.

[Activity2004 Administrator in reply to Hidden]

How have you been feeling lately? Sometimes, if a person has a cold or flu/infection, the blood sugars go up and down, too. If you weren't feeling well or had an infection when you had the A1c done, then that may explain the higher result at the time of the test.

[Hidden in reply to Activity2004]

I've felt fine all the way through with no ill health at all. If I hadn't had the tests every three months for the past two years showing blood glucose levels gradually rising, I would never have known there was anything amiss.

[Activity2004 Administrator in reply to Hidden]

Have you tried a new lab?

[Hidden in reply to Activity2004]

I don't have that option in the UK under the NHS system unless I choose to be referred to (and pay) a private consultant and I'm not convinced that it would necessarily be advantageous at the moment.

[Activity2004 Administrator in reply to Hidden]

Okay. See what the new number is after you get the next blood drawing done and if it doesn't match with what you have been doing, you may want to see if the doctor's office can do the test themselves.

[Hidden in reply to Activity2004]

My own daily figures can't really give an indication as to what the HbA1c will be over 3 months and I have full faith in the test results that I am getting. The fact is that my condition is atypical and there doesn't seem to be a way of getting to the bottom of the reason for it without, perhaps, going privately and spending a lot of money trying to find out. I'm hoping to come across someone who has had a similar experience but so far have drawn a blank. Many thanks for all your efforts to help though.

[candi1 in reply to Hidden]

I have had similar problems.....very low carb diet and glucose rising. It can be quite complicated but I am guessing that because of the low carb resulting in less insulin bieng released thus the blood glucose appearing higher.....it is still however, the insulin that is the problem.....if you are insulin resistant...as I am......it will take time and extreme determination to turn this around.

I get my fasting insulin test done via 'Medichecks' and....although my insulin has dropped by 10 points over the last three months...the glucose is still a problem and not as low as I would like at all....in fact I am still in the pre- diabetic range

[Hidden]

Well, precisely, something I would like to know too. And why my fasting BG level was 6.7mmol/mol at 8.30 this morning more than 12 hours after eating yet 5.8 yesterday in the same circumstances. It is completely unpredictable day by day and meal by meal. By 'spike' I mean the highest BG point after a meal which for me is about 40-60 mins and can be between 9.0 and 11. I can bring it down from there by 2-3 mmol/mol by exercising for about 10 mins at that point (not always very convenient). I usually manage to get down to the recommended level of under 7.8 two hours after a meal, even without exercising, though I recently had a 2 hr reading of 8.3 after having a breakfast of just one boiled egg and a coffee with whole milk. I generally only count macros occasionally now, having done so obsessively for over a year but am on a LCHF diet (<50g carb) and confident I'm not overdosing on protein. Anyway, I did a count yesterday and it came to 45g carbs, 80g protein, 110g fat which equates to 1493kcal of which 12% carbs, 21% protein and 67% fat. Sometimes the carbs are lower and the fat higher but protein mostly about the same.

My husband has the same meals as me plus some carbs i.e. rice, pasta or potatoes, and if we compare BG levels afterwards always has a much lower reading than me. I am convinced that this is not a diet issue. After all, why, two years ago when I was eating a 'normal' diet with the usual carbs, though not excessively, was my HBA1c level lower than it is now after all this carb reduction yet I am now on the brink of tipping into a diagnosis of diabetes? Everything I read about prediabetes is about weight reduction but I have moved from 120lb to 114 lb and can't afford to lose any more. I do have a mild thyroid insufficiency medicated with a low dose of thyroxine and the GP says there can be a connection between different metabolic conditions.

I have read study after study and can only conclude that my unpredictable readings are the result of an intermittent malfunction in the insulin-producing beta cells causing the insulin to work in fits and starts. There are scientific studies addressing this but little on how it can be mitigated. It's all very frustrating. Thank you, though, for reading this and for your support.

[Millee]

(Previously known as 'Hidden')

Update, 1 year + on.

I spent the entire Covid period continuing with strict diet macro ratios (and, yes, StillConcerned, I have always carefully added up all my carbs from every source and keto recommendation for protein is 15-30% of calories). I saw no improvement in glucose levels, but at last found a number of studies online identifying a newTD2 phenotype, that known as the 'Lean diabetic'. This type is not related to the typical obese TD2 in that the diabetes is not caused by insulin resistance or 'TOFI' (thin outside, fat inside). The causes are not yet fully understood but thought to relate to a genetic propensity for beta cell dysfunction. However, lean diabetic patients are more prone to develop heart problems than obese patients. Consequently, I signed up to a clinical trial looking at this area and had comprehensive blood tests and a detailed cardiac MRI. The trial doctor explained that I had no significant visceral fat that could cause insulin-resistance and that there were no further improvements I could make to diet or lifestyle that would change the situation. However, he pointed out some small cardiac microvascular changes which would never have otherwise been found at this stage which actually makes me very much more fortunate than the average lean diabetic who will never be offered an MRI. The trial will examine whether drugs that improve beta cell function and blood flow to the heart can help to mitigate high glucose levels and the cardiac microvascular changes often present in lean diabetics.

This vindicates what I have felt for the past two years - that there is a type of irreversible lean diabetes that is not Type1 or LADA, and not typical of obesity-related Type 2. I very much hope that this will become better known and understood, with targeted treatments, so that people in my position are not constantly told they are TOFI, despite their best efforts, nor managed by health service providers in the same way as an insulin-resistant diabetic.