Nothing is making sense: atypical prediabetes situation? Advice?

[Glink]

Hello, fellow prediabetes folk. Never thought I'd be posting here! I was diagnosed with impaired fasting glucose/prediabetes last June. I'd been having symptoms for almost 2 years: really excessive thirst and urinating, ridiculous fatigue, vision problems that would come & go, puffy hands & feet, recurring yeast infections and a sore throat that would not go away for 2 years, headaches, irritability, etc. I have no family history of any kind of diabetes, and am youngish (late 30's) and thin, exercise quite a bit and eat well, so no one ever tested my blood sugar. I figured it was stress, as my work was particularly stressful for a while there. Then I suddenly gained 25 lb in about 3 or 4 months (until then I had never gained/lost much weight since puberty) and grew a belly. Finally, my GP tested my sugars and they were a bit high.

I've had 3 fasting BG tests over the past 7 months and they've been 5.6, 6.3, 5.9 mmol/L. Pretty consistently a bit high. My 2-hr GTT shortly after my first IFG fasting result (about 6 mos ago) was fine though (by the numbers, it wiped me out for a day or 2). My HbA1C is 5.6 mmol/L. About 2 months ago I had a c-peptide test, which came back normal (619 pmol/L). My home test fasting #s range from 4.2 to 7.6.

My GP was very unconcerned about my IFG, but I was feeling terrible and finally had a bit of a possible explanation so after reading up on forums like this one I decided to go very LCHF diet. Within a week or two I felt like a new person! For about 7 months now I've eaten about 50 g gross carb/day, no grains, starchy veggies, or fruits. I borrowed a glucose monitor from a friend who had GD with her recent baby, after which my GP ordered my my own strips & monitor after I brought him my #s. I have now lost at least 30 lbs and may still be losing weight, but my blood sugars are not better.

It has become abundantly clear that I feel bad when my sugars are high. 5.3 or below is where I feel best. I'm an ******* when it's above about 6.3. I can tell by how I feel when my sugars are high, like 6 or above. The highest I've recorded since all this is 9.1, which I know isn't that bad but recall I am eating virtually zero carbs. The only things I have found that help me lower my sugars when they go high are napping and a glass of wine. Neither of which is particularly practical. Exercise makes it go higher. I am often higher after fasting than I was at bedtime, and higher still if I fast longer (e.g., if I sleep in on weekends). I never go low, much to my surprise--as I'd previously been told I probably have hypoglycemia--turns out those headaches and shakes are HIGH blood sugar not low when I haven't eaten in a while!

This seems to be slowly getting worse. I have to eat less and less in order to maintain numbers in the 5's, hardly ever get 4's anymore, and frequently am in the 6 & 7's now. I am getting increasingly fatigued again. I am feeling obsessed with my food intake in ways I do not like, and only eat veggies (usually raw), meat, fish, eggs & nuts. I used to able to sneak in a few bites of yam, but i seem to have lost that ability lately. No grains seem to be manageable, even a tiny amount of barley with lots of fibre added. I now worry about whether my portion of broccoli or kale is too big such that it will give me a high sugar in the morning. This seems like no way to live, in my mind, but no one seems particularly concerned but me. I finally got to see a dietician but she was useless, just gave me basic info on glycemic index and things and didn't really have any ideas for how to navigate my very restrictive diet. I've also developed one frozen shoulder over the past months, which I understand is rather common among diabetics. My GP keeps sending me back to the endocrinologist, who has ruled out a ton of other things (cortisol, calcium, other hormonal things; my bp and cholesterol also tested and are fine). The endo doesn't see why my GP keeps sending me back.

I feel like I'd wish to be tested for LADA and also that I'd like to try metformin at this point, since diet alone is not quite doing the trick, but I don't know that either doctor will do either of those things. I think they're getting tired of not solving me and don't really want to see me anymore. I have a lot of allergies and endometriosis, so I've seen this before--the clinician losing interest when they can't fix it. I think I might have one more shot at the endo, and am seeking advice regarding how to proceed with him.

Thanks to any & all who have made it through this long introductory past, and my sincere thanks for any advice or insight you can offer.

 

[1Sarah1]

Hi I'm type1 so not an expert on pre diabetes but have you spoken to them about trying metformin? Have you spoken to a diabetes nurse? If not maybe ask for a referral.
What are your sugars like fasting/pre meal/post 1 hour/2hours if you have had a normal meal rather than no carbs?

I hope you get sorted.

 

[Tapatia]

There is an interesting BBC article on being thin and having diabetes in India. It seems a chubby tummy is maybe part of the problem even if the rest of the body is thin. I also have prediabetes and have struggled with the same sort of issues... Eating 'right' at night and waking up to a 175 reading... It is so challenging and frustrating! The dietician I met with was not much help, so, I am working through the exchanges and experimenting with food a lot,
On my own.

 

[Glink]

Thanks for replying. I don't think I have access to a diabetes nurse; the diabetes clinic is too busy and won't take a mere prediabetes case. Can you give an example of a normal meal? I don't think I've had one in a long time, because the tests with more carbs I've done (e.g., 1 piece of sprouted grain toast with almond butter, an apple with almond butter) have not gone very well. Perhaps I should try a "normal" meal and monitor my sugars postprandial before I go back to the endo? I have asked about metformin and will do so again when I go back, but no one seems keen to give it to me. I hate medications, and usually don't even fill scripts that are written for me, but I am getting desperate with this and am more than ready to try meds!


Tapatia, that's interesting. Even though I have lost 30 lbs or more (BMI about 20; I was not "overweight" even when diagnosed) and now all my clothes are too large, I still have a tiny belly compared to how I used to be. I'm sorry you are in a similar boat. It is so frustrating to read about how we are totally in charge and can prevent progression to diabetes--and read about doctors whinging about how unmotivated and undisciplined patients are--when that has not been my experience at all. I am super motivated and disciplined and just want to know how to fix this!

 

[tim2000s]

I think in your position, it might be worth asking for both another c-peptide test and a GAD antibody test.

That would totally rule out T1 or T1.5. Your description of having to eat less and less to maintain remotely good bloods sounds a lot more like these types of Diabetes than T2.

The weight change may just have been cortisol related due to stress.

 

[Glink]

Thanks. I will ask again about GAD. I don't know if they will run it or not, because it's expensive and my numbers don't look that bad. I'm not sure how to get my case taken seriously; despite all the rhetoric about how patients need to take decisive action early on to prevent progression, it seems no one wants to help figure out what kind of decisive action might help here.

I'm unclear regarding whether interpretation of c-peptide would be affected by eating very low carb--if so I think my normal results could actually be potentially indicative of insulin resistance? The c-peptide was just in Nov; not so long ago.

The weight loss could be just because I'm not getting much to eat anymore. (Fasting cortisol tested normal around Sept, for whatever that's worth.) But the weight gain last year was super weird, because I am really one of those people who until a year ago could do anything, eat anything, exercise or not, and never changed weight. And suddenly something happened to change that. I upped my exercise and added weight training and still gained belly over those months, so something metabolic went wacky.

I had a lovely summer/fall of not getting colds etc. much, but over the past month or so I have started getting everything that goes around again. Could be because I'm not eating much? Or because I am having more trouble keeping my BG below 6? Or just coincidence....

 

[Brunneria]

Hi and welcome!

Have you found the Reactive Hypoglycaemia part of the forum?

I am not suggesting that this is what you have - not enough info to say at this stage - but it might be worth you having a look.

If only to confirm that you DON'T have RH

 

[Glink]

Thanks. I took a look and doubt RH applies to me. I never test as having low sugars, and when I feel bad it's always high.

However, one other odd-seeming thing I forgot to mention above is intestinal gas & bloating. I had a chronic problem with this since I started to feel bad a couple years ago, which cleared up mysteriously when I went LCHF after diagnosis this summer. However, in the past couple of months since my sugars have been mysteriously creeping up again this has been returning. I have never heard of gas being a sign of diabetes before, but for some reasons it seems to correlate with worse blood glucose control for me. ??

 

[Glink]

Well, now the endo's office has called--they have cancelled the appt I had scheduled for Feb and sent me back to my GP. I feel very angry since this was the same endo who told me on our first appt in Sept that he'd be following me forever and that he'd get to the bottom of this, and at the time this seemed so reassuring. My GP does not seem to know that much about all this, and said before that he is not authorized to order the GAD test, but maybe I can get him to prescribe some metformin at least, to try out. This is so frustrating. I feel quite envious of those who can just change their diets and exercise and get better!

But, ranting aside, if anyone has thoughts on best strategies to not get brushed off at the GP appointment, I'm taking advice. I'm not sure if I should cry, threaten to get metformin from a friend if it's not prescribed, try to go to another clinic if my GP is not responsive, eat a bunch of carbs to make myself really sick so I can present very badly, or just give up. It seems that the only thing that ever got anyone's attention was when I suddenly blew up like a blimp, and now that I'm skinny again everyone thinks it's fine no matter how I feel or what my #s are -- but I'd rather not have to go through that weight gain again just to get some proper care.

 

[Tapatia]

Yes, unfortunately prevention is not a priority it seems, in most medical establishments including the U.S. One has to get sick first...
Hope you can figure it out and get better.

 

[bob1965]

Hi Glink you are not alone in this the symptoms you have described above are exactly as I get, extreme fatigue, varying blurred vision and seeing double, constant urinating, feeling of swollen hands and feet, brain fog at relatively low sugar levels. Like you I am slim, fit and always eaten sensibly my Hba1c was 6% in May and December last year up to a point I was getting no help at all from GPs despite changing surgeries last year.


In March 2014 I had a triple heart bypass and whilst in critical care following the op they had great difficulty controlling my blood glucose levels and was put on an insulin pump, I was asked several times after I had come round if I was diabetic and that I should get checked out. Had a FBG test that came back at 5.7 so was told this was not a problem, was diagnosed with post operative chronic fatigue syndrome and left to get on with.


Like you I tried the lchf way of eating in April and found this cured everything and had a great summer, in August I had what felt like a slow acting tummy bug as had stomach aches, mild diarrhea and bloated stomach for about 2 weeks this was followed by a rapid decline in health and an increase in my daily fasting sugar levels ranging between 6.5 and 8. visited a new GP but this didn’t go well, Beginning of September I decided to cut out carbs altogether and this did help, fasting levels went down to average 5.6 and I did feel a lot better for about 4 weeks but was finding that if I ate a small amount of carb like onion in curry or carrot I was having major problems about 4 -5 hours after eating, heart would be pounding felt as if I was drunk and could hardly move, the next few days would feel like I had been run over by a truck and could not function mentally, unfortunately I never tested during these episodes as felt to ill to get up or even think about it, by end of October morning fasting levels were back up in the high 6s and 7s so decided like you are now the only way to get attention was to up carb intake and get sugar levels up so would be noticed, didn’t go crazy just added rice and pasta back into diet so would have been about 120g a day still no added sugar or fruit, health went down hill again and by end November I had developed a nice case of shingles, I reluctantly went back to GP and was seen by one I hadn’t seen before she took an interest as this was the second attack in 6 month and looked at the results of a FBG test done mid September glucose level was 6, she said this was to high and I needed to get it down (at last someone was listening) explained to her the diet I am on she told me to have an Hba1c and then go back to discuss results. Came back at 6% so didn’t expect to get any help, again she said this was to high and prescribed me 500mg of Metformin once a day.


I started the Metformin 4 weeks ago today, had a couple of weeks of feeling and being sick but stuck it out and do feel it is helping, mentally I feel a lot healthier, it has brought sugar levels down a bit lowest, fasting level I have had has been 5.8 about 2 weeks ago but would say they are creeping up again was 7 this morning, I am still low carbing say about 120g a day the fatigue has improved but now finding I start to feel unwell in the afternoon with symptoms like I am coming down with the flu but these do go overnight, the last few days I have checked my urine for ketones and finding levels of +++80 so not sure what to do next, just taking one day at a time


In October I paid and had GAD and C peptide test carried out, the GAD came back negative which was a big disappointment as I was convinced this was the problem and armed with a positive result would start getting help. The c peptide level was 468 the lab report came with no unit of measure or reference range so the online blood test company had the result interpreted by their Doctor he said this was within the range of normal for a fasting test, the paperwork they had sent me prior to the test said this was non fasting so I didn’t fast prior, also with no reference range on the lab report I have asked them to re test or refund the cost but so far just getting fobbed off.


In response to Brunnerria s post re reactive hypoglycaemia I wouldn’t rule this out a lot of the posters have similar symptoms, just before Christmas one afternoon I had a weak moment and ate 4 mint matchmakers thinking they wouldn’t do any harm, within an hour I was asleep and awoke about half hour later feeling very unwell, did a blood test expecting to be very high and found I was 3.8, checked it 3 times to check meter was ok as never ever since started testing last April have I been below 5, tested again 45 minutes later and was 7.8 but didn’t feel well again for a few days. So think this explains what was happening at night after eating small amount of carbs,


In my opinion I feel I have slow onset type 1 and have been going this way for at least 15 to 20 years, I used to get strange episodes of feeling unwell and constant urinating remember going to GP in 2003 and explaining to him then to be told that I was drinking to much coffee as this was a diuretic, over the years I have subconsciously cut out all processed food and sugars due to feeling unwell after eating them but not linking the problem to diabetes. I have had many years of frozen shoulders, golfers elbow, tennis elbow and knee problems all these have been put down to repetitive strain injury, but as you say these are linked to diabetes, I also have heart disease and prior to surgery had suffered several heart attacks with out knowing as didn’t feel anything again another link to diabetes


I cant explain the stomach problems, just feel its another shift in the bodies reaction to what’s going on, i have found that eating bread in any form would give me a bloated tummy so when I upped my carbs did it in the form of brown rice and veg and by upping it I think I am preventing the massive fall in sugar levels that I was possibly getting after eating small amounts, I also think the Metformin has helped settle things down a bit.


I wish you well for the future don’t really know what else to add but hope some of this my be of help to you, good luck and take care

 

[ladybird64]

Bob, not disregarding the rest of your post but alarm bells are ringing re the ketones. Unless you're in ketosis (usually eating very low carb), I don't think you should have these levels and I believe they could make you very unwell indeed. I'm going to tag both @azure and @noblehead, as they are mods on insulin and might be able to advise - I can't think who else to ask and feel you need some advice on this.

All best

 

[azure]

Hi @bob1965

It sounds like you've had a rough time. Sorry you've been unwell and had such a struggle.

@ladybird64 is right to say it might be wise to get a medical opinion about those ketones. Remember if it's out of hours, you can always phone 111 if you're in the UK and speak to a doctor for advice.

Not directly related to that, but one thing did occur to me with your stomach problems - has your doctor ruled out coeliac disease?

Take care and look after yourself -

Best wishes,

Azure

 

[Glink]

Update: I got a script for metformin! Fingers tightly crossed that this does the trick. I'm so relieved to have some sort of action plan, since there's really not more I could do with diet & exercise, and my plan had become just not eating when my sugars were getting high, resulting in too much lost weight. I wrote myself a good succinct script of what to say (on my phone), stuck to it and said it all without rushing or getting too emotional, and kept the refrain, "I need a plan." i asked outright about metformin, and while he considered other things (something that could help me gain back some weight? But I think once I can eat again I will probably stop losing weight) he agreed that metformin was the best first choice.

Bob1965, I hope you are feeling better. Thank you for sharing your story with me; there are certainly some similarities to my own. I worry that you might be experiencing lactic acidosis or something, based on others' concern and your history of cardiovascular stuff. Have you checked in with your doctor or nurse about your adverse effects since being on metformin?

 

[AndBreathe]

Update: I got a script for metformin! Fingers tightly crossed that this does the trick. I'm so relieved to have some sort of action plan, since there's really not more I could do with diet & exercise, and my plan had become just not eating when my sugars were getting high, resulting in too much lost weight. I wrote myself a good succinct script of what to say (on my phone), stuck to it and said it all without rushing or getting too emotional, and kept the refrain, "I need a plan." i asked outright about metformin, and while he considered other things (something that could help with weight gain? But I think once I can eat again I will probably stop losing weight) he agreed that metformin was the best first choice.

Bob1965, I hope you are feeling better. Thank you for sharing your story with me; there are certainly some similarities to my own. I worry that you might be experiencing lactic acidosis or something, based on others' concern and your history of cardiovascular stuff. Have you checked in with your doctor or nurse about your adverse effects since being on metformin?

Good morning Glink - I'm pleased you seem to have at least something potentially constructive to try. I hadn't read your thread before; somehow I must have missed it.

Thankfully, I haven't had the challenges you have, in terms of diagnosis or action plans. I was one of those very irritating people who reduced carbs, my numbers came back into range, I got skinny, and pretty much stayed that way, but I do empathise with your frustration!

What I did at the outset was to collate a spreadsheet of all my results, in Excell, so nothing too complex, then added a trend line to them - for my own information. Each time I have a panel of bloods done, I add a new date column and add the data, and so the "bigger picture" builds. Prior to appointments, I then review all the hard fact data, and where I have something to discuss I can take a print out of the data, although I tend to copy the data into a PowerPoint slide, add a slide of a dietary summary (I keep a food diary in myfitnesspal, so can provide nutritional data from my records, rather than having a feeling I eat x, y or zgr carb a day) with a summary of my issues and objectives, which then acts as an agenda for the appointment. I treat my medical appointments very much like business meetings and do my prep, so that I will be taken seriously.

In terms of meeting my objectives, this approach has worked very well, and after the initial setting up, it only takes 5 minutes to add new data, plus any comments I might like to make. In your case, those comments might be a summary of your own feelings of wellbeing.

See how you go along on Metformin, but if you need further discussion, then a presentation approach might work well. It is fact based, without the frustrating emotions that tend to kick in when we don't feel we are being taken seriously.

I really do hope it goes well for you on Metformin.