Idiopathic Post Prandial Syndrome

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Simsmaid

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At risk of diabetes
Hello,
I have been experiencing hypoglycaemic attacks since my late teens and started asking for help at the age of 20. I am now 65. In those 45 years I have been tested for diabetes many times (family full of Type 1 and Type 2) but, apart from being insulin resistant at one stage (I now eat low carbs), nobody has been able to help me with the hypos. . Last year I had a very public and embarrassing hypo which made me try to get help yet again. This time I had the backing of my husband, who recognised a pattern of behaviour when I am 'going'.

Recently I have received the diagnosis of IPS from Addenbrooke's Hospital, in Cambridge. The consultant (diabetic) explained that it rare, but it is in the medical literature. He also said I am someone 'at risk' of diabetes. It's the IPS which has dominated my life and left me exhausted. I am very, very keen to find other people who have received this diagnosis, so that we can form a group, support one another, exchange information and perhaps find someone who is willing to research the condition and make it official so that no-one else will have to live a life regularly being dismissed by doctors, or patronised, or misdiagnosed, however well meaning.

I also have Hashimoto's Disease, which was diagnosed over 40 years ago.

Is there anyone out there please, with IPS or who thinks they might have it?
 
Idiopathic Post Prandial Syndrome is normal blood sugar but feeling hypo? Could your blood sugar be going a bit high then falling and that feeling is something you’re sensitive too? Do you test your blood sugar to see if that’s the case? If it is, then you’re doing a sensible thing watching your carbs as that should help any overly high spike.

When you feel hypo, is it a reaction of your nervous system to the food? Did the doctors say if there was any treatment to reduce that?

Some people with diabetes have what are called false hypos, especially soon after diagnosis where they feel hypo but their blood sugar is normal. That’s due to their body getting used to higher than normal sugars though so I don’t think it sounds that similar to IPS? Some people have reactive hypoglycaemia but that does actually cause low blood sugar rather than low symptoms at a normal level. How were you diagnosed? Did you have to do some kind of prolonged testing after a meal? What were your blood sugars? What symptoms do you get? I’m sorry you had an embarrassing experience in public. That can’t have been nice at all.
 
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Thank you very much Inka. I appreciate your thoughts and ideas.
I have worn a continuous blood sugar monitor for some weeks and, possibly because I eat a low carb diet, my blood sugar levels remain in the normal range all the time. However, apart from the hospital investigations, I also took part in the 'Zoe' program and made a note of where my blood sugar level was every time I experienced a hypo or the beginning of one (I carry glucose tablets everywhere and these usually bring me back quickly),
The Zoe results showed that I am getting hypos even when blood sugar levels are on the higher side of normal, as well as lower - there seems to be no correspondence at all. It's a complete mystery to myself and to science - so I am classed as non-diabetic despite having these symptoms every day of my life.
The Zoe program involves eating muffins which are balanced for carbs, protein and fat. Everyone has to eat them using the same timeframe and take the blood test at a precise time after eating the muffins. This shows a personalised response to sugar and fat processing in the body as compared to a few thousand other people. Needless to say, my result for processing carbs came out in the 'bad' category.

I have spent a lot of my life being dismissed, however kindly, by doctors, but that is no longer the case. Now they are just puzzled. At least the syndrome is now acknowledged. One consultant said that it was like coeliac disease was before serious research proved that it is indeed a condition and has particular symptoms and characteristics. I want to try to find as many people as possible who have also been diagnosed with IPS as apparently it is rare but I think it's more likely that people are suffering but have not had it recognised as an actual condition. Research is needed.
 
@Simsmaid Do you test any out of range blood sugars with a fingerprick and a home glucose meter? If the sensor you’re using is a Libre, they’re usually inaccurate at the lower and higher ends of the range so need a fingerprick to check.

Have you had an HbA1C?
 
The Zoe results showed that I am getting hypos even when blood sugar levels are on the higher side of normal

Just to be clear @Simsmaid , hypoglycaemia is a low blood sugar. It isn’t the symptoms, it’s the blood glucose reading. From what I understand, you’re saying you get some of the symptoms of a hypo even when you’re not hypo - like your body is mimicking hypoglycaemia but you’re not actually hypo. That sounds like an adrenal response - your body overreacting to a normal blood sugar. That hormone response could make you feel sweaty and shaky, pounding heart, faint, etc. But in that case, it would be more to do with your adrenal system than your blood sugar, I think. If certain foods or meal regimes provoke this response, then experimenting with diet as you’ve done is very sensible. You might, for example, find having more but smaller meals helps, or having protein snacks, or sticking to low GI foods or timing your meals according to a schedule that minimises this response, or limiting the size of your meals, etc etc.

As you already have Hashimotos, have you had tests for other endocrine disorders?
 
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Sorry to hear about the symptoms you are experiencing @Simsmaid

Do your symptoms generally coincide with BG which is falling? It’s quite a common experience on the forum for new members who have had high glucose levels for some time to get the feelings of being ’hypo’ as their levels fall, because they are lower than the body has been used to for some time.

Conversely, people who run their levels a little on the low side can find that their warning signs aren’t triggered until lower and lower levels (impaired awareness of hypoglycaemia).

The body seems to have a sort of glucose ‘thermostat’ that can need to be reset from time to time 🙂
 
Inka said:
The Zoe results showed that I am getting hypos even when blood sugar levels are on the higher side of normal

Just to be clear @Simsmaid , hypoglycaemia is a low blood sugar. It isn’t the symptoms, it’s the blood glucose reading. From what I understand, you’re saying you get some of the symptoms of a hypo even when you’re not hypo - like your body is mimicking hypoglycaemia but you’re not actually hypo. That sounds like an adrenal response - your body overreacting to a normal blood sugar. That hormone response could make you feel sweaty and shaky, pounding heart, faint, etc. But in that case, it would be more to do with your adrenal system than your blood sugar, I think. If certain foods or meal regimes provoke this response, then experimenting with diet as you’ve done is very sensible. You might, for example, find having more but smaller meals helps, or having protein snacks, or sticking to low GI foods or timing your meals according to a schedule that minimises this response, or limiting the size of your meals, etc etc.

As you already have Hashimotos, have you had tests for other endocrine disorders?
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Thank you Inka. It's great that you are kind enough to bother with all this detail. I do understand that 'glycaemia' relates to sugar but to date there is no other terminology for my condition although it is occasionally referred to as 'pseudo hypoglycaemia' which makes more sense in terms of words but somehow makes me feel like a fraud, which I most definitely am not.
I have looked into adrenal function in the past but my GP said the tests came back as 'normal'.
I have seen several endocrinologists over the years who have mainly scratched their heads. One did say, and I quote 'Unless you are one of these funny people who needs her blood sugar level to be higher than what we judge as normal'. I didn't really know how respond to that.
I get all the symptoms you refer to above, and a substantial mood drop, often with feeling morose and deeply 'down'. I also get a horrible, hollow type of feeling in my stomach. For many years the only way I could cope was to go to sleep. This sleep usually lasted about 5 hours and completely stopped my ability to work. Now I eat in the way you suggest and take a glucose tablet when these symptoms happen (which is often). I am back to normal within 10 minutes. I still need to take short rests but nothing like before.
Thank you for your interest Inka.
 
I definitely don’t think you’re a fraud @Simsmaid Your symptoms are real physical symptoms - an overreaction by your body. I’m sorry I don’t have any better suggestions for you. I think more people than we realise are affected by something similar, although usually more mildly. For example, a relative of mine gets very shaky if they go too long between meals. It must be a nuisance as well as upsetting for you.

If it were me, I’d keep really detailed records of foods and how you feel so you can attempt to ward off the worst of the reaction. It sounds like you’ve been doing this anyway. I hope you gradually find a way to live with this so that it has as little impact as possible on you.
 
everydayupsanddowns said:
Sorry to hear about the symptoms you are experiencing @Simsmaid

Do your symptoms generally coincide with BG which is falling? It’s quite a common experience on the forum for new members who have had high glucose levels for some time to get the feelings of being ’hypo’ as their levels fall, because they are lower than the body has been used to for some time.

Conversely, people who run their levels a little on the low side can find that their warning signs aren’t triggered until lower and lower levels (impaired awareness of hypoglycaemia).

The body seems to have a sort of glucose ‘thermostat’ that can need to be reset from time to time 🙂
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Thanks very much for your thoughts, everydayupsanddown. I appreciate it. I could mention them to the endocrinologist the next time I see him or her.
In reality, after so many years of not being to help me, I am not sure this is even a diabetic problem, despite glucose being the one thing that really helps. I am keen to find others who have been diagnosed with IPS in order to attempt to generate some more research into this problem.
I wish you good health and stability with your condition and thanks very much for your contribution.-🙂
 
Inka said:
I definitely don’t think you’re a fraud @Simsmaid Your symptoms are real physical symptoms - an overreaction by your body. I’m sorry I don’t have any better suggestions for you. I think more people than we realise are affected by something similar, although usually more mildly. For example, a relative of mine gets very shaky if they go too long between meals. It must be a nuisance as well as upsetting for you.

If it were me, I’d keep really detailed records of foods and how you feel so you can attempt to ward off the worst of the reaction. It sounds like you’ve been doing this anyway. I hope you gradually find a way to live with this so that it has as little impact as possible on you.
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Thanks Inka. You are very kind. Yes indeed I have kept details of food intake, even measuring carbs to two decimal points so I know exactly how many carbs I have eaten. I don't really want to go into all the details here but the condition has had a dramatic effect on my life, in terms of education, career, friendships etc. I would like to find an explanation before I get too old to want to bother particularly if it's something which could be inherited. I cannot believe that there are only three or four of us in the whole world who suffer this condition.
Many thanks for all your thoughts and ideas. 🙂
 
I wonder if there are some similarities with the diabetes situation that @EmmaL76 struggles with. I believe she has had glucose issues for many years before fairly recent diabetes diagnosis and has struggled to get a formal diagnosis on her type of diabetes.
There is also another member who has had problems with low BG levels throughout her life but I think a recent diabetes diagnosis and I am sure she is a nurse, but I am struggling to recall her username and I haven't seen her post in the last few months....
 
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