Quite confused

[LWillemsen]

Apologies in advance for a long post, but I think this is a great community and I would really appreciate some advice. I am a 46 year old woman, 51kgs and 166cm, definitely not overweight. I have Sjögren’s syndrome which causes me a lot of neurological complications such as nerve pain, thermoregulatory problems, digestive problems, autonomic issues such as very low blood pressure. I have various other health issues such as early menopause, osteoporosis, reflux and other things I can’t always remember, brain fog is another.

Anyway, I see I fantastic endocrinologist for my osteoporosis, and last year investigating episodes of weakness and shakiness and lack of concentration I did an OGTT. The results were:
Fasting 4.6 nmol
1 hour 11.7 nmol
2 hour 8.7 nmol

Also, I nearly passed out driving after this test, I wasn’t told to eat anything. I also had CGM for 5 days which showed lows of 3.1 and highs of 15, but very much a roller coaster.

So it was determined pre diabetic level, three months later I did another, this time I had my own meter and took readings at the appropriate time, however the person taking my blood at the second test took the 2 hour reading 15 minutes late. I took a reading on my meter at the correct time and there is a large discrepancy.

Lab results:
Fasting 5 nmol
1 hour 12.1 nmol
2 hour 7.6 nmol

My meter
Fasting 5 nmol
1 hour 12.9 nmol
2 hours 11.8 nmol
3 hours 3.8 nmol
3 hours 15min 3.4 nmol

I understand there’s a difference between finger prick blood tests and lab results but I wonder what would have been if it had been done at the correct time. My fasting c peptide is consistently low, 0.4 (0.8-3.4). I have been tested for lada which is negative. My Mum has type 2 diabetes. The current treatment is a low GI diet and I see a dietitian for this.

Lately I have been experiencing some random lows even after eating a low GI meal within three hours. Also, I feel hypoglycaemia symptoms at times when when blood glucose is in the low fours, is it possible to feel symptoms at these levels or is it maybe a meter error? I wonder if there may be an element of reactive hypoglycaemia and maybe I should request a longer OGTT?

I’m thoroughly confused, when my blood sugar is playing up and my blood pressure drops it’s a perfect storm. I’m also concerned given my nerve damage. Any advice would be much appreciated.

 

[HSSS]

As I read your post my mind too went to RH as a possibility. I don’t know a great deal about it though so the best I can offer is to take a look at that section of the forums and see if it resonates further https://www.diabetes.co.uk/forum/category/reactive-hypoglycemia.70/. If so hopefully your great endocrinologist will support further investigation.

 

[Mbaker]

Hi @LWillemsen tagging in @daisy1. Not medical advice from me (or anyone on this site) but just some tinkering around the edges and general stuff.

With the lows and highs in your readings it does look alot like RH as far as the symptoms go. It would be interesting to know your fasting insulin and visceral fat levels.

If you are able to do weight bearing activity, from walking to resistance training, this over time should have a benefit for the bone density. Perhaps upping beef if you are an omnivore. Whilst not the same as your condition, I have read much on meat helping autoimmune conditions. This video about migraines has some interesting aspects which I feel may cross over from a research perspective for you (and others):

 

[JoKalsbeek]

Apologies in advance for a long post, ---/QUOTE]

Sjögren's, huh? So that's why I have low bloodpressure... Never realised it was linked to anything, just thought it was funny I had metabolic syndrome without the high bloodpressure. Learning every day!

Aaaanyway. Yes, I do think a longer test would be a good idea. And make sure you have someone to drive you afterwards, and have something to eat. As for treatment, from what I understand it's not just low GI, but low carb, period, that would tackle reactive hypo's in RH. But others can get into that more than I can, as I'm just a T2. Don't let it go. Be a dog with a bone. You need answers. And you deserve them.

 

[Rachox]

My knowledge of RH is very limited so I’ll tag in a couple of members, who know more, for their input @Brunneria and @Lamont D

 

[Brunneria]

Hi and welcome @LWillemsen

Sounds like you have quite enough on your plate as it is, without glucose dysregulation too!

If you are already working with a dietician and eating low GI, then you are already aware of carb intake and the importance of avoiding fast carbs. I imagine that you may be reluctant to throw your dietician out on their ear, and strike off on your own... but you can always ask what they think of low carbing. Some are open to it, others less so. Some reject the very idea.

So i suggest that you do a few things, testing the water, as it were.
Why not take a few days and tot up your total carb intake, fruit, veg, brown carbs, low GI carbs and all.
See how much you are actually eating.
Record it in a food diary alongside a food diary, including portion sizes.

(My own experience as an RHer was that low GI carbs were interesting and enjoyable to eat, but they did naff all to help my blood glucose and RH. It made no difference whether the bread was white sliced or organic granary, they had the same RH effect)

Test your blood glucose before and after eating. So that is at first bite, then +30 mins, then +60, +90, and so on, until your bg has risen, dipped and then returned to normal. Obviously, this would be ruinously expensive if you did this all the time, but just doing it for typical and/or problematic meals, may shed a lot of light.

Then you would be armed with evidence to ask your doc for an extended glucose tolerance test.
Good luck with that. My doc refused to even look at my testing results. Not a progressive thinker, my doc. I have since changed to a different surgery.

Having done these things, you could try some simple one off food experiments.
I have no idea what you normally eat.
But it would be easy to simply remove all low GI carbs from a single meal, replace them with above ground veg, extra protein and fat. Bacon and eggs for breakfast, or chicken salad and mayo for lunch, or lamb chops, cauli cheese and greenery for your evening meal.
Just test to see if your blood glucose levels are steadier.
The proof of the theory will be how you feel, and your blood glucose readings.

Hope that helps.

 

[daisy1]

@LWillemsen
Hello and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it both interesting and helpful.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 600,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[Lamont D]

Hi and welcome to our forum @LWillemsen,

I agree with the others, you definitely need a referral to a specialist endocrinologist who has experience with Hypoglycaemia, who would more than likely arrange the extended oral glucose tolerance test, as a first step towards diagnosis.

Your two, two hours testing readings are typical reactive hypoglycaemia readings, but it could be that your other conditions, could also give you the same reaction, because the initial quick spikes are synonymous with insulin resistance and a weak initial insulin response. It could be glucose dumping, but until the tests are done, we are only guessing. The third (ish) readings are again low enough to be RH, but with glucometer readings, they could be a little misleading and not true enough to be called a hypo, as glucometer cannot be totally accurate. The reading could be as close to be in normal levels. A RH hypo has been classified as below 3.5 mmols.
But as with most things relative to endocrine blood dysregulation and with your other conditions, it is individual to what level you go hypo.

Have you had any other readings that are lower than what you have posted?
As with most of us that have symptoms of hypoglycaemia, I would reduce carbs and keep a food diary. If your doctor hasn't already put this process into your diet, it can be easier to cope and having your diary will help you to give your doctor to try and understand what is going on.

But until you have that extended test, you won't know if you are Hypoglycaemic or something else!

Best wishes

 

[LWillemsen]

Thanks for all your advice, it’s much appreciated and very useful.

I exercise regularly, walk everyday and strength training for the osteoporosis.
My diet is a work in progress, while it’s pretty healthy and varied, it’s not low carb. I have come from eating a very high carb diet of toast and crackers because early on in my Sjogren’s I had constant nausea and those foods sat well in my stomach. I still have stomach problems but try and maintain a high GI diet . A typical day after seeing my dietitian would be Bircher muesli with no sugar yogurt and berries, a turkey, cheese and salad sandwich on burger bread, dinner of chicken, fish or red meat with vegetables and sweet potato. Snacks are whole grain crackers with nut butter, fruit, nuts, veggie sticks and hummus, a glass of wine at dinner and a piece of dark chocolate afterwards. It’s not bad, but probably doesn’t suit what I need. I will definitely try reducing carbs to see how I feel.

I will try testing at 30, 60, 90 minutes etc and see what happens with regular meals. I think I might try the same meal when my Sjogren’s flares up because it can effect my stomach. Interestingly I had a gastric emptying study done many years ago when they thought I had gastro paresis but in fact it emptied rapidly (66 minutes-normal 109 +-26)
So maybe that make a difference.

My endocrinologist is lovely, she is happy for my next OGTT to be three hours, I just don’t know when it will be. In the meantime I shall monitor what I eat and the blood glucose, and try reducing carbs and see how it goes. Is it possible to feel hypoglycaemia symptoms at levels around 4.1-4.3? I feel pretty awful at these levels, shaking, weak and unable to concentrate, or am I just hangry?

Thanks again for all the support, it helps so much

 

[Brunneria]

By the time you get hypo symptoms and feel that wobbly, it is perfectly possible that you are already coming out of the hypo.

In my experience many RH hypos hit hard and fast, and the feelings you get are when the body has already released the stress hormones that are pushing your blood glucose back up. 5 mins earlier, your symptoms might have been much less obvious, but your bg reading could have been lower. Its another reason not to over treat a hypo with more than a small amount of carbs. If your body is pushing your bg back up anyway, then only small amounts food is needed, and (for me and my RH), better slow release than fast, otherwise it could spike too high again).

As for a 3 hr OGTT... a 5 hour would be better.

 

[LWillemsen]

That’s so interesting, but a five hour OGTT

 

[Resurgam]

There is definitely something significantly amiss with your ability to cope with carbs - keep on at your doctor - but the sweet potato, crackers, fruit, bread, muesli, will all add up to quite a hefty carb load. I recommend that you check just how high your intake is.

 

[LWillemsen]

Thanks again for all the advice, as suggested I have been doing some testing based on what I have been suggested to eat by my dietitian and I have discovered a few different things. Firstly my blood glucose tends to peak at 30 minutes, very occasionally at 45 minutes.

With the meals I usually eat I have been reaching a peak of 8.5 to 11, so not great but not awful? Strangely though with dinner the peaks are not as high, more like 7-7.5, perhaps because we always drink a glass of wine with dinner?

In the 2 to 3 hours after eating I seem to drop back to 6 or down to the low fours. I haven’t had any hypoglycaemia episodes this past week but I do feel awful at 4-4.3.
This week I shall try lower carb meals and test to see what happens, I’m still not sure what’s going on but all the suggestions are much appreciated.