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Am I on the wrong track completely?

NeetaMD

NeetaMD

Member
Messages
17
Location
Gloucestershire
Type of diabetes
Prediabetes
Treatment type
Diet only
Dislikes
People being unkind
I have just had 18 months of intense investigations, mostly under gastroenterologist, after symptoms of unexplained weight loss, chronic diarrhoea, tiredness. My GP is convinced I may have cancer and I have had several scans, endoscopy, colonoscopy, every conceivable blood and stool tests but (thankfully) all clear.

However! I have been atypical of someone with pre diabetes despite raised HbA1c, slim, fit, low stress, healthy lifestyle and the only change I made after attending the Pre-diabetes course was to add in some moderate intensity exercise (running) to my already active life. When I tried a Freestyle Libre monitor in spring 2023 I was getting highs of up to14.4 mmol/L but clearly with good enough Insulin response to return this to near normal later.

I have recently had more blood tests for cortisol levels (plus others) and all ok. I didn’t know they were going to test plasma glucose as well which was also ok but possibly only because I had run, in a fasted state to the appointment .

As far as my HbA1c and plasma glucose shows I don’t have diabetes but I not so sure that this isn’t what is brewing and that my regular exercise is just keeping any deterioration slowed down? I have two immediate family members with different autoimmune diseases.

I am currently trying out another 2 weeks of Freestyle Libre CGM and for example today I ate a regular lunch with readings of 12.6 at 1hr15 after and still 9.2 at 2 hrs after. Because I time restrict my eating and never snack I wonder if it will have a reducing effect on my overall HbA1c as I am in a fasted state for 15 hrs a day despite any highs I might have during my eating window?

I am also finding now that after a heavy carb meal I can feel really unwell, dizzy, headache and nausea like I’m dehydrated. I now also drink a lot and am out to the toilet several times a night. The only activity that makes me feel well these days is fasting and exercise. If I was to reduce my carbs to lower my HbA1c I would lose more weight which I can ill afford.

I’m thinking of doing a DIY OGTT to see how I respond to a measurable amount of carbs under strict conditions and using a finger prick tester to monitor my response.

I’m not sure what to do next. I’m amassing some data to speak to the GP (again) but concerned she’ll think I’m just a hypochondriac although all I want is to just feel well again.

It’s really hard to decide if my response to carbs is within normal range or if I should be concerned. (My husband did a finger prick to check his sugar levels 1hr after eating the same portion of the same meal as me. His was 5.5 when mine was 12.2!)

Any helpful suggestions please?

………………………..

I am a 70 year old retired nurse from the UK. I come from a family of health professionals and have a keen interest in all things health related. I am anxious to remain fit and healthy into my old age. I am keen to be proactive and make good health choices.

Had mild Gestational Diabetes in1996

HbA1c
2022 Mar - 45 mmol/mol
2022 Jun - 43
2023 Mar - 44
2024 Jan - 44
2024 Jun - 43
2025 Mar - 41
2025 Nov - 43

2023 (all year)
Attended Xyla in person Pre-diabetes course. I followed the advice but no improvement in HbA1c!

2024 Mar
2 weeks Freestyle Libre monitoring (self directed)
Highs of up to 14.4 mmol/L after eating with often a rapid return to normal. Fasting levels around 5.5 to 6.5 mmol/L

EXERCISE
Always been a regular brisk walker. Current average around 8000 steps daily.
2023 Oct - Started Running. I now run5k 3 x week including local Parkrun on occasions.

WEIGHT
2022 Jun 66.5kg
2022 Dec 63kg
2023 Jun 62kg
2023 Dec 59kg
2024 Apr 56.5kg
2024 Aug 54kg
2025 Feb 54.5kg
2025 Jul 51.5kg
2025 Dec 51kg

DIET
I have never been overweight and have not intentionally dieted to lose weight but have lost around 15 kg over the last 2 years. I am now underweight for height and I can’t afford to lose more!

I have been practising time restricted eating for about 6 years and have an eating window of between around 12:30 and 21:30. This helps my cholesterol levels and the symptoms of chronic diarrhoea I suffer from.

I am an early adopter of low GI food choices and have eaten brown rice, wholewheat pasta, granary bread and new potatoes etc.. for years. However I love to bake but I often use ‘healthy’ recipes eg. from DiabetesUK website.

I eat a good number and variety of fruit, vegetables and nuts every day according to current advice. I don’t snack between meals. I’m not a fussy eater and eat most things.

I love healthy food and cook all meals from scratch with only occasional meals out or takeaways. I am not vegetarian or vegan.

I have inherited high cholesterol and have been on Statins for 15 years. I don’t particularly try to cut my cholesterol intake (which isn’t high) as the source is less to do with my diet but because I make it in my liver.
 
Hi there @NeetaMD. It sounds like you have had a stressful time, but glad you had some good news health wise.

I’m in the same position as you, lean, fit good diet, but raised blood sugars. It sounds like your body is not coping with the foods you are eating, hence the raised blood sugars in the low teens. Fruits, particularly fruits that are high in sugar, like oranges , mangos , apples etc can bump up your blood sugars. I also cook from scratch , which is great, but home cooked foods can be carby too, wheat flour is an example, Rice , home made bread, pastas and potatoes and carrots. I do see you look at GI foods.

What makes you think it could be LADA? Prediabetes can make your blood sugars unstable. As for LADA a C-Peptide test would give you a better picture on how much insulin your body is still producing, as C-Peptides correlate with insulin production. You are obviously producing sufficient insulin as your blood sugars are not in the diabetic range. Your Dr may not be too receptive, given you are not diabetic, only pre diabetic.

Autoimmune conditions in family members does raise the risk. Risk goes up if you have first degree family members, mother, father, siblings. Further still if you have an autoimmune condition yourself, but it’s far from inevitable one will develop T1.

Using a FreeStyle Libre should give you a good idea what foods are causing those blood sugar rises and maybe try reducing those types of foods. Even if you do have early LADA, your Dr may suggest dietary changes to lesson the strain on the pancreas, but at the moment, as your blood sugars are not in the diabetic range I would suggest you are producing sufficient insulin.

Added insulin
 
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Hi @Melgar, thank you for your reply.

You are right that there are carbs in all sorts of foods but for non-diabetics they shouldn’t be too much of a problem if chosen wisely but they certainly are for me. I can see in my response to the carbs in the foods I eat using the CGM that many otherwise ‘healthy’ foods are causing high spikes in blood sugars.

I am clearly not insulin resistant nor type one diabetic as the CGM shows that I am producing insulin but not always very quickly and not always enough. It’s not normal to have to severely restrict carbohydrates to control blood sugars nor is it necessarily healthy. I am not just lean but thin now with all my ribs showing. Last time I had a CT scan of my abdomen, it was hard for them to visualise my organs because I was told that I have no visceral fat to move them apart! I can’t afford to lose much more weight as I am now underweight.

C-peptide test is not generally used in the UK in the initial investigations for Diabetes but tests for autoimmune antibodies are sometimes, so I might ask my GP if that would be appropriate.

The 4 T’s used in the UK to aid diagnosis of Diabetes are Thinness, Tired, Thirst and frequent Toilet visits. All of which apply to me and I thought it might explain my unexpected weight loss. I was thinking that my exercise regime could explain an extended ‘Honeymoon’ period of possible early LADA? (see footnote) I’m just searching for an answer to my weight loss and persistent pre-diabetes which could result in an improvement in my general well-being if identified and treated appropriately.

NeetaMD



As you keep yourself fit I thought you might also be interested in this research paper “ Type one diabetes honeymoon is almost 4 times longer in people who exercise”
I can’t share the link because I have only just started posting but it is from the University of Exeter in the UK. I’m sure you could Google it if interested.
 
Hi @NeetaMD and welcome to the forums.

Given your weight issues I'd be pushing for that cpeptide test.

Here is an article with a study on what happened when healthy non diabetics wore a cgm for ten days.

Continuous Glucose Monitoring Profiles in Healthy Nondiabetic Participants: A Multicenter Prospective Study - PMC

Use of continuous glucose monitoring (CGM) is increasing for insulin-requiring patients with diabetes. Although data on glycemic profiles of healthy, nondiabetic individuals exist for older sensors, assessment of glycemic metrics with new-generation ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
@NeetaMD I was a competitive runner , not now of course, but I do try and keep myself fit. Yes, I agree it’s not normal to have to restrict your diet, particularly ones carb intake, but for whatever reason your body is having some problems with glucose regulation. Insulin resistance is one of the major drivers of T2 diabetes, as I’m sure you know. A pancreas that doesn’t produce enough insulin adds another dimension.
I pay for my C-Peptides, it’s relatively cheap here in Canada. I believe other UK members have got a C-Peptide test, but I understand it depends where you live. There are 5 types of autoantibodies produced in T1 , but just 4 are tested. GADA , ICA , IAA , IA-2A and ZnT8 .
My C-Peptides are low normal, but stable. My blood sugars can go to around 14, same as you, but do drop, if rather sluggish to do so. I also have Coeliac disease and produce low levels of IAA autoantibodies, but I was told that IAA was relatively normal at the levels I am producing. My brother is T1 .So I can relate. If I start producing any of the other autoantibodies then that changes everything.

You might want to check out this paper.

https://www.trialnet.org/events-new...taging-classification-opens-door-intervention

Thanks for the research paper I will check it out.
 
NeetaMD said:
I have been practising time restricted eating for about 6 years and have an eating window of between around 12:30 and 21:30. This helps my cholesterol levels and the symptoms of chronic diarrhoea I suffer from.

I am an early adopter of low GI food choices and have eaten brown rice, wholewheat pasta, granary bread and new potatoes etc.. for years. However I love to bake but I often use ‘healthy’ recipes eg. from DiabetesUK website.

I eat a good number and variety of fruit, vegetables and nuts every day according to current advice. I don’t snack between meals. I’m not a fussy eater and eat most things.
Click to expand...
Apart from the other suggestions on tests, regarding your weightloss, have you actually tracked calories to see if you are eating enough?
You don't mention many fatty foods and protein in your list, you don't snack, and you have a restricted eating window, which could all add up to an unintended calorie deficient diet.
 
Wow @Melgar, a competitive runner! Well done! I can’t claim to be more than an amateur jogger but I try to be consistent whatever the weather.

I will consider any other tests as you have discussed privately only if I get a negative response from my GP. I am due my annual blood test in March and by then I’ll have collected a little more data including maybe a DIY OGTT which might be interesting.

Thanks to the link to the paper which I’ll be interested to read tomorrow. It’s 23:16 here!
 
Hi @Antje77 thank you for your response and questions.

I do need to consume enough calories for my needs and I have looked quite closely at that yet I have had no significant changes to my diet during the period of weight loss. In fact (on advice from the gastroenterologist) I am ensuring that I eat full fat yoghurt and cheeses, add olive oil based dressings to my salads and regularly add double cream to my coffee, soups, casseroles etc in a bid to add extra calories. I have plenty of protein in my diet with red meat twice a week as I am prone to anaemia as well as poultry, fish as well and some meat free meals including pulses.

What is strange is that my husband and I are both retired, both active, similar height and build and we eat all the same food and same serving size, he’s not lost any weight at all despite men’s calorific needs being typically greater than a woman’s. I am puzzled?
 
Hi @EllieM, thanks for your comments and links to the study of non-diabetic using CGM’S

I will hopefully be able to discuss my concerns with my GP after my annual blood tests in March and maybe get some further tests done.

The study you sent a link to is interesting but I can clearly see that my blood sugars regularly fall outside of the range found in the non-diabetic participants of my age group in the research. So far after a week of using the CGM I am outside of target range for 19% of the time. Oh well, I guess time will tell if there is anything to worry about.
Thanks again
 
Hi @NeetaMD

I may be way off the mark here but have you been tested for BAM (bile acid malabsorption) the way you are describing your toilet symptoms reads very much like my husband’s experience. It’s not often tested for and it took him 8 years & 3 different consultants in different hospitals for him to finally get a diagnosis. Before that they went down the cancer route with him too.

It doesn’t show up on all the tests such as colonoscopy, endoscopy or blood tests. How they used to diagnose it was by giving the meds that help and if they work that’s what you’ve got! But there’s a test you can have called a SeCAT test that is a definitive diagnosis - he also has IBS, colloid colitis & is in the throws of being tested for food intolerances - which can all go hand in hand but not always present.

Not every hospital or indeed NHS area does the test, hubby had to go out of county to get the test after pushing for a second opinion

SeHCAT (tauroselcholic [75 selenium] acid) for the investigation of diarrhoea due to bile acid malabsorption in people with diarrhoea-predominant irritable bowel syndrome (IBS-D) or Crohn's disease without ileal resection | Guidance | NICE

www.nice.org.uk www.nice.org.uk
 
Hi @lovinglife, thank you for your suggestions regarding the chronic diarrhoea symptoms I suffer from.
I’m glad your husband finally got a diagnosis and hope he is able to obtain the treatments for Bile Acid Malabsorption which I know have been in short supply at times.

I have been lucky in that absolutely everything has been tested for. From parasites to BAM, Iv’e had a SeCat scan, and some other tests had to be sent out of county to be processed, blood tests, stool tests, scans, I’ve had them all! It’s still a mystery!

I am left with the possibility of SIBO, small intestine bacterial overgrowth which can’t be tested for but which can be killed off using antibiotics. I’d then have to repopulate my gut with all the gut friendly bacteria I’ve been keen to encourage over the years - not keen on this idea. Otherwise I might not be processing one or more of the Fodmap food groups but to identify which one/s is extensive elimination diet and reintroduction which I am not ready to do quite yet. I have got really skilled in managing my symptoms by all sorts of means and just try to get on with life else I would be too afraid to leave the house.

The recent weight loss is more the problem at the moment which is why it was thought I might have cancer but thankfully all tests and scans have come back negative. The weight loss began when my HbA1c started rising hence me questioning a possible link?
 
Hi @grantg, thank you for the link to the study. An interesting read. I had read before that iron deficiency anaemia can reduce HbA1c readings but I am only just on the cusp of being anaemic though my Ferritin stores are also very low so not sure if this has had any impact on my results so far.

It is thought that my chronic diarrhoea with rapid gut transit times may be reducing my absorption of several nutrients, including iron (hence feeling so unwell a lot of the time) so potentially my blood glucose levels could be higher than they are now! Who knows?
 
NeetaMD said:
Hi @lovinglife, thank you for your suggestions regarding the chronic diarrhoea symptoms I suffer from.
I’m glad your husband finally got a diagnosis and hope he is able to obtain the treatments for Bile Acid Malabsorption which I know have been in short supply at times.
Click to expand...
Sadly none of the treatments so far have worked for him & he’s running out of options. It’s a very debilitating condition when it’s at its worst.
 
@lovinglife I’m so sorry that your husband has been so unwell. It puts my problem into perspective. I don’t know what age you both are but no one wants health problems to impact the way they get to enjoy life but sadly as we age this can be sometimes the case.
Thinking of you both
 
NeetaMD said:
I am left with the possibility of SIBO, small intestine bacterial overgrowth which can’t be tested for but which can be killed off using antibiotics. I’d then have to repopulate my gut with all the gut friendly bacteria I’ve been keen to encourage over the years - not keen on this idea. Otherwise I might not be processing one or more of the Fodmap food groups but to identify which one/s is extensive elimination diet and reintroduction which I am not ready to do quite yet. I have got really skilled in managing my symptoms by all sorts of means and just try to get on with life else I would be too afraid to leave the house.
Click to expand...
Not sure if this is any help to you @NeetaMD . I got very ill with sepsis pneumonia a few years ago. I was on massive doses of antibiotics. They totally wiped out my good gut bacteria , probably the bad ones too. The reason for my post is that it did not take long for my gut to recover . So I’m very aware and take steps to keep my gut biome balanced. I do take probiotics daily as I’m on PPIs , but I do hear you on being concerned about your gut biome, but it does recover.
 
@Melgar. Glad to hear your gut recovered so well after being so ill!

I also take daily probiotics but I understand according to Zoe) that it can take up to two years to restore a healthy gut biome following antibiotics which is why I am hesitant.
 
Hi there, I was diagnosed prediabetic and was about a stone overweight so I did high protein very low carb around 800 cals a day to try to reverse it. The prediabetes had come on very suddenly. After the fasting diet hba1c reduced and all seemed well... until I started eating more normally including some carbs. Haba1c rocketed to 80 and I had all the symptoms. Thankfully (and with the help of data from a self funded cgm) I managed to persuade my dr to test for antibodies and I had them all in abundance. If I had stayed low carb it may have been a lot longer before the T1 showed up and I would have continued thinking it was T2 diabetes (that never seemed to fit for me as it came on so suddenly). Perhaps your Dr will agree to do the antibodies tests. Or eat more regularly and see what that does to your hba1c and request the tests again.
 
NeetaMD said:
Hi @Antje77 thank you for your response and questions.

I do need to consume enough calories for my needs and I have looked quite closely at that yet I have had no significant changes to my diet during the period of weight loss. In fact (on advice from the gastroenterologist) I am ensuring that I eat full fat yoghurt and cheeses, add olive oil based dressings to my salads and regularly add double cream to my coffee, soups, casseroles etc in a bid to add extra calories. I have plenty of protein in my diet with red meat twice a week as I am prone to anaemia as well as poultry, fish as well and some meat free meals including pulses.

What is strange is that my husband and I are both retired, both active, similar height and build and we eat all the same food and same serving size, he’s not lost any weight at all despite men’s calorific needs being typically greater than a woman’s. I am puzzled?
Click to expand...
To be honest, the guesimated numbers of calories required by adults is and average, guess, finger in the air job.

For example, I am 160cm tall and under 50kg, so slight, yet I eat considerably more than my chap who is a keen golfer who uses the gym on his non-golfing days. We will quite often be sitting, having finished our meals when my OH will pose the rhetorical "where does it all go" when he's looking at my clean plate.

In your shoes I would make a point of increasing the nutrient dense foods I ate - fattier cuts of meat, cheeses, oily fish, prioritising protein. If that doesn't help you gain weight, add more fats, and if that still doesn't work, add something like nuts - either to a meal or as a snack.

I am no snacker, but if I lose weight, it has to go back, but be aware that it may not be the quickest project you undertake. It has to be sustained, just as those looking to trim up have to maintain their weight loss tactics.

As a matter of interest, what sort of A1c does the Libre estimate for you, when you are wearing it? Are all your A1c lab results from venous draws, as opposed to estimations from Libre of a blood glucose meter?

Just on a final aside from me, you have talked much about your blood glucose numbers being higher than you had hoped, but what sort of lows are you seeing, and when? By low, I mean your personal low numbers, not necessarily clinically meaningful lows.
 
@RN25 Gosh, sound like your symptoms came on really quickly. I agree your low carb regime may have masked the onset of T1D. Good idea to see your GP with data from a CGM and it sounds like the antibody tests were the clincher. At least now you can be treated appropriately.

My symptoms have been more gradual so not as clear cut. I agree that if I added in breakfast and a few more carbs into my diet it would be closer to most peoples regular eating patterns and might enable more clarity. Definitely worth thinking about. Thanks
 
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