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Help with a diagnosis!

M

Mimi2017

Member
Messages
12
Type of diabetes
Don't have diabetes
I’m told tests show I don’t have diabetes BUT no one can say what my symptoms signify. The nearest conditions can find relate to insulin in some way but it seems a complicated process I can hardly get to grips with. So, can anyone help. (I’ve had an exam by a consultant who has disagnosed ‘post prandial distress syndrome’). The symptoms are: after eating esp breakfast and lunch I feel ice cold, shivery, exhausted, tired, fatigued and sometimes almost depressed/anxious. This last symptom feels physiological not psychological. It comes on after about 1 to 2 hours and can last all day. Feel slightly sick and burpy sometimes too. I have cut down on sugary foodstuffs but do eat oats for breakfast, e.g carbs and bread to small degree. Does any of this strike any chords with anyone as I have run out of options with medical investigation.
 
What tests have you had?
To eliminate diabetes I assume you have had at least one fasting blood glucose test, perhaps an HbA1c as well?
Have you also had finger prick tests pre and post eating, or something more specific such as an Oral Glucose Tolerance Test?

I must say that many (most?) T2 diabetics have few if any direct symptoms.

I would possibly consider Reactive Hypoglycemia as something to be checked for and eliminated.

I am puzzled by the diagnosis of post prandial distress syndrome (at least on first search) because this seems to be a feeling of fullness after a meal when you haven't eaten enough.

Are you sure it wasn't this?
https://en.wikipedia.org/wiki/Idiopathic_postprandial_syndrome
This is basically the symptoms of hypoglycemia without confirmed low blood glucose if I am reading the description correctly.
This is very similar to Reactive Hypoglycemia, perhaps a more general case. Diagnosis of RH requires a crash in BG which can be countered by a small amount of additional glucose.
General treatment seems to be eating little and often instead of 3 bigger meals per day.

@Brunneria for a view on RH.
@daisy1 for the usual warm welcome.
@Mimi2017 to flag response
 

Thank you so much for your reply LittleGreyCat....really kind of you. I think I had the fasting blood test..this has been going on a while now...not sure about HbAlc. I can get this info from Docs tho. Not had pin prick tests or oral glucose.

I never feel bloated ...well, only if really overindulged at Xmas ...or ever have actual pain. In the list of idiopathic post prandial distress syndrome symptoms I have just the extreme fatigue and bizarrely a slight feeling of low mood, almost slight weepyness. None of the other symptoms. It’s hard to describe but it feels like the constant feeling of unwellness is also debilitating. I hate not buzzing about getting on with things. But no mention anywhere of the strangest symptom that I get as well...the shivers, icy cold goosebumps for several hours combined with the exhaustion.

I don’t really understand much of the Wikipedia explanation but will re read. It seems to be suggesting anxiety is a casaul agent but I don’t feel it is the case with me anyway. From what you have already intimated though I feel I should maybe go back to the Docs and ask for some different tests? Eating smaller more frequent meals is doable of course but then again I don’t eat that much anyway and always feel worse after breakfast which is a small serving of gluten free muesli and milk.

Thanks for reading all this....much appreciated as have hit a dead end with Docs. Oh, should also mention that lansoprapole ppi does stop symptoms even though it’s an antacid and I don’t get acid problems! It does however slow my gut down though to the extent I get severe constipation on (sorry, tmi) and would like not to take it. Is it slowing down all aspects of the insulin response I wonder?
 
Just read through Reactive Hypoglycemia wiki. This looks like the nearest fit so far. Very interesting!
 
@Mimi2017

Hello Mimi 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 useful. Ask as many questions as you need to and someone will be able to help.



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 235,000 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.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

  • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why

  • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
 

I can’t say it sounds like diabetes or hypoglycemia. Your symptoma are very general and can fot almost anything, so I find it hard to link to diabetes.

Having servere depression or anxiety can cause a cold shivering feeling, and make you tired and exhaused. You say you were diagnosen with PPSS, and that is a psychological condition that can cause/explain all the symptoms you mention.

If you were diabetes you would feel constant hunger, but getting sick/puke when eating carbs, and you would be constant thirsty and have very frequent urination.

If you were reactive hypoglycemic you wouldn’t just feel cold, shaky and bad in general. Actually you will start to start shake uncontrolably, if your hypo are real bad. You would get problems to pronounce words, getting foggy and blurry vision, and last fainting. The symptoms of a hypo are very real, and hard to miss, and eating something sugary would hjelp and make you feel good again in a few minuts.

Your condition sound more like Idiopatic postprandial syndrom to me, its a psycological condition that makes you feel similar symtoms as hypoglycemia, like shakiness, cold, anxiety, fatigue, but without actually having low or abnormal blood sugar.
 
Mimi2017 said:
Just read through Reactive Hypoglycemia wiki. This looks like the nearest fit so far. Very interesting!
Click to expand...
Hi,
Unfortunately without hospital tests, you won’t get a true diagnosis.
If as your consultant says you have a postprandial condition, you should be testing with a glucometer to find how you react postprandial to food.
In my case I kept a food diary, to discover which foods gave me the symptoms.
Hypoglycaemia is an imbalance of insulin in your blood.
There are many types of hypoglycaemia. RH is one but everyone has different symptoms. That is why we can’t say or diagnose what it actually is.
Symptoms, it is all related to what you eat. My experience is that cutting out carbs as much as possible will alleviate the symptoms. I have intolerance to potatoes, any grains, dairy, pasta. Even what is termed healthy is not healthy for me.
I had really bad anxiety, your post reminds me of before I got my diagnosis , but since starting to eat to my lifestyle to suit me, I have got my life back.
Please read the RH forum threads, Wikipedia is not bad but the information we have from those with hypoglycaemia or related conditions will give you the information you are looking for.

Keep asking, let us know how you get on.

Best wishes
 

Many thanks for replying. It’s very helpful to have your comments as it’s surprisingly confusing unravelling conditions, symptoms etc as they are never totally definitive. I’m extremely relieved if I don’t have a physical condition of course but feel a psychological source can’t be right or why does taking lansoprapole, a ppi, make the symptoms go away. But cause other problems! Very odd. I’m trying to follow a low carb diet as from yesterday so will see what happens. From what you say it seems a test for low blood sugar is the next step.
 

Thank you for replying. Wow, how interesting! I will read your links Edit: (thought there were some at your footer but now can’t see them!) as I am just embarking on serious attempt to cut carbs right down. Made a list and shopped yesterday so will report back.
 
Last edited:
If you use the search feature at the top of page or
go to top of page, click on forums, scroll down to Reactive Hypoglycaemia forum and click there.
 
Just reporting back ... also for anyone else who reads this...... I’ve cut out most of the hi carb foods and symptoms gone! Stopped lansoprapole for last two days thank goodness as not needed. Ditched breakfast cereal, biscuits, cakes, I’ve reduced sugar and sugary items to almost nothing. Substituted pumpernickel and peanut butter and banana for breakfast and lunch. I’d love to know why this has been necessary e.g. what’s gone wrong in the body that I can’t process simple carbs anymore but happy to just not be feeling rubbish all day. Thanks all.
 
Hi,
I can only assume what is happening to you by my own experience.

Everything you eat creates the glucose you need to provide energy this is converted to glucose by the insulin produced as a balance, this is known as an insulin response triggered by the food. Your blood glucose levels rise and fall as normal.

An imbalance in your hormonal (insulin) response to food will create endocrine conditions, and other reasons cause the conditions such as diabetes.

My own imbalance is that my first insulin response is weak. So I need a second but this overshoot causes, first, high circulating insulin, this causes insulin resistance, which exacerbates high insulin levels and high glucose levels, the overshoot causes a drop in blood glucose levels to hypo levels, you eat again and you spike high, you overshoot again, fluctuations in blood glucose levels, which creates more problems. And so on, viscous circle!

The trigger for all this is carbs or starchy vegetables such as potatoes.
These foods convert and trigger the glucose insulin response.
Eating more regularly at this stage will stop the hypos but it cannot be maintained. I've tried. A very low carb diet, does not trigger the insulin response, so your background insulin levels will deal with any excess glucose derived. The quick spike is slowed down dramatically, mainly due to a higher saturated fat intake, you can eat a good balance of protein, fats without the carbs.
If you keep your blood glucose levels in normal range, you will convert from carbs giving you your energy to your body producing ketones for energy from stored fat.

As a rule, no hypers, no hypos!

I use intermittent fasting and eating small meals when I want to.
I can't eat a lot and I am never hungry, just eat when and if I want!
I'm not normal, I have a weird and rare condition, I do what works for me.
You will probably have to do the same.


Why, I have no idea, your gut biotic is different, your gut brain trigger is different, your insulin response is different. We are not normal, unique!

Why does not matter in the long run, control is!
Just a few changes to your diet has produced a better understanding of what carbs do. The next step is to find your balance and how much healthy (for you) food you need to get your health back.
It is achievable, I have done it successfully.

Best wishes
 
Thanks again...your experiences and how you had to fix the problem yourself add more pieces to the puzzle and I was very interested to read your blog entry Jul 30 re H. Pylori. Have I read it right that you only had the diagnosis of H Pylori because of the endoscope exam. Had you not had blood tests for it previously? I’ve tested negative for it and a main symptom...pain..is not something I’ve had. Just for info, to get help on my problem I have been to GPs about 3 to 4 times, had numerous blood tests, seen a consultant, had an mri and no medic has ever mentioned carbs or even adjusting diet to experiment. Maybe because I look slim it was assumed it was nothing to do with what I was eating. I wonder how many other folk are in the dark on this? A shame.
 
You are correct, they noticed something during my endoscopy, and it was heliocobacter pylori. They took a biopsy.
At the time there was no need to have bloods done, as all my symptoms were to do with stomach, also there was no concern about my diabetic history then. (I wasn't diabetic!) My Hba1c levels then were normal. It's a pity they didn't do an insulin test, as I believe it was around the same time that I had started to gain weight, slowly but surely. And I believe my insulin levels were higher than normal. Of course this is hindsight.
It is about tolerance. It's only recently that all carbs are synonymous with blood glucose spikes, it was presumed (rightly so) that it was sugary foods, but if you experiment with potatoes, they are really bad for me! (Wow!)
But anything above a certain amount of carbohydrate in any food is literally a poison in how my body reacts to carbs. So I just avoid, which (shock and horror) dieticians are not trained to advise. Even some GPs need a lesson in how to manage your blood levels by showing them a food diary. I have been told by my endocrinologist that his mentor never would diagnose hypoglycaemia because he didn't believe that you could get the pancreas to overshoot insulin. It is still considered rare, especially in men.
There are many misdiagnosed people out there due to lack of understanding of how insulin has a huge impact on your body, how your metabolism actually works, all of the ways, you get imbalances in your hormones and ignorance of how individual these conditions actually are.

Best wishes, keep asking!
 
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