Possible reactive hypoglycemia, seeking doctor in Cork City

niamhfrancis

Hi all,

I've been struggling with health problems for a few years now and in particular with the last 6 months I seem to be becoming incapable of processing any carbs without getting weak, dizzy, palpatations, trembling, sweating, confusion, and insomnia (either not sleeping at all or waking up thrashing around, moaning, drenched in sweat). I also can't have caffeine any more for the same reasons.

I was tested for diabetes about 6 months ago and some blood samples sent to labs for any related conditions, and had an EKG, but no diagnosis. My fasting sugar was low and I was very sick that morning, but the doctor disregarded my low blood sugars. She's not interested and is looking for diabetes or a thyroid problem. She doesn't believe in hypoglycemia, either as a condition in itself or as a disease with an underlying cause.

After being tested that time and sent away with no diagnosis, the symptoms seemed to level off and I was tired and weak all the time, and I basically had to get used to it. I gradually got worse over summer, in August especially, sleeping only one out of every two or three nights and spending my days exhausted and dizzy, dragging myself around the place. It got unbearable last week and I got desperate. I did some research and found out about reactive hypoglycemia, and it was like reading about myself, so then I looked up dietary recommendations for hypoglycemics and I decided to give it a try.

Last Sunday, I gave up carbs almost completely. I ate scrambled eggs on brown soda bread with rooibos tea (doesn't contain caffeine), instead of my usual pancakes and orange juice followed by black tea. I waited for the usual exhausted feeling to hit, and it didn't! I carried on like that for the day, having fish and vegetables for lunch and then steak and veg for dinner with just one potato, and I felt overwhelmingly better than I had in months. I've been experimenting a bit and I find that every kind of carb I eat brings on what I'm sure is a hypo (feels just like I did when I had testing strips for my glucose monitor - unfortunately I need my doctor to prescribe them... ). Even brown bread and porridge and popcorn give me trouble, although to a lesser extent than say a cookie or piece of fruit. I've been eating six times a day this week and feeling amazing, I'd actually forgotten what it was like to feel well!

Thing is, I don't want to diagnose myself. I want a professional to diagnose me so I can see a dietician and make sure I'm not leaving out some vital nutrients with all the foods I've given up. My doctor firmly does not believe in low blood sugar being a problem except for when the patient doesn't eat meals soon enough. At least twice she told me that I was probably just not eating soon enough, and no amount of explaining would change her mind. So I'm wondering how to go about finding a doctor who will test for all likely causes including reactive hypoglycemia? I'm sure everything else has been ruled out already anyway but as I say I don't like diagnosing myself and I want to have solid facts and solid advice. Does anyone know a doctor in Cork city who believes in hypoglycemia and will test for it? Would HUGELY appreciate any advice!

calfmuscle

niamhfrancis wrote: »

Hi all,

I've been struggling with health problems for a few years now and in particular with the last 6 months I seem to be becoming incapable of processing any carbs without getting weak, dizzy, palpatations, trembling, sweating, confusion, and insomnia (either not sleeping at all or waking up thrashing around, moaning, drenched in sweat). I also can't have caffeine any more for the same reasons.

I was tested for diabetes about 6 months ago and some blood samples sent to labs for any related conditions, and had an EKG, but no diagnosis. My fasting sugar was low and I was very sick that morning, but the doctor disregarded my low blood sugars. She's not interested and is looking for diabetes or a thyroid problem. She doesn't believe in hypoglycemia, either as a condition in itself or as a disease with an underlying cause.

After being tested that time and sent away with no diagnosis, the symptoms seemed to level off and I was tired and weak all the time, and I basically had to get used to it. I gradually got worse over summer, in August especially, sleeping only one out of every two or three nights and spending my days exhausted and dizzy, dragging myself around the place. It got unbearable last week and I got desperate. I did some research and found out about reactive hypoglycemia, and it was like reading about myself, so then I looked up dietary recommendations for hypoglycemics and I decided to give it a try.

Last Sunday, I gave up carbs almost completely. I ate scrambled eggs on brown soda bread with rooibos tea (doesn't contain caffeine), instead of my usual pancakes and orange juice followed by black tea. I waited for the usual exhausted feeling to hit, and it didn't! I carried on like that for the day, having fish and vegetables for lunch and then steak and veg for dinner with just one potato, and I felt overwhelmingly better than I had in months. I've been experimenting a bit and I find that every kind of carb I eat brings on what I'm sure is a hypo (feels just like I did when I had testing strips for my glucose monitor - unfortunately I need my doctor to prescribe them... ). Even brown bread and porridge and popcorn give me trouble, although to a lesser extent than say a cookie or piece of fruit. I've been eating six times a day this week and feeling amazing, I'd actually forgotten what it was like to feel well!

Thing is, I don't want to diagnose myself. I want a professional to diagnose me so I can see a dietician and make sure I'm not leaving out some vital nutrients with all the foods I've given up. My doctor firmly does not believe in low blood sugar being a problem except for when the patient doesn't eat meals soon enough. At least twice she told me that I was probably just not eating soon enough, and no amount of explaining would change her mind. So I'm wondering how to go about finding a doctor who will test for all likely causes including reactive hypoglycemia? I'm sure everything else has been ruled out already anyway but as I say I don't like diagnosing myself and I want to have solid facts and solid advice. Does anyone know a doctor in Cork city who believes in hypoglycemia and will test for it? Would HUGELY appreciate any advice!

All bread, especially soda bread are high in carbohydrate.

niamhfrancis

Thanks, I was actually going to try soya bread! Are other soya foods full of carbs as well? At the moment I seem to be only able to eat vegetables and high protein foods... I can't sleep at night if I have even a tiny amount of high-carb food.

beeno67

In fairness Niamh, you do want to diagnose yourself. You have made a diagnosis and are now looking for a doctor to tell you that you are right.

You have changed your diet and now feel better. A diet low in refined sugars is recommended for everyone. Just stick to that. Plenty of vegetables is good for you, everyone accepts that. Obviously vegetables are almost entirely carbohydrate and water (albeit not refined).

You have changed from a poor diet to a good diet. Of course you feel better. Why try to medicalise it?

niamhfrancis

What if there's an underlying cause that only a doctor would be able to pinpoint? Hypoglycemia is sometimes a symptom of something else. I don't want to diagnose myself because I could be feeling better but still have something going on underneath it all, and I could be masking the problem with my dietary changes. I'm not willing to take risks with my health. I'm not looking for someone to tell me I'm right, I'm looking for someone to test me for everything *including* reactive hypoglycemia. If it turns out I'm wrong and it turns out to be one of the things my doctor already tested for before, I really, really don't care as long as I hear it from a professional and can get it treated or at least managed.

The other problem is that my GP is only interested in high blood sugar, not low, so she wants to test for diabetes again. Testing for diabetes involves fasting for 14 hours, but I get weak and shaky after going 2.5 - 3 hours without food, so imagine what 14 hours might do to me. I'm more severely affected by the symptoms this time, or I was before going on the diet. The first time, finger prick test was only 3.3 and it was only a 12 hour fast, and I was really weak and shaky and clammy, but this time my symptoms are way more severe and she's asking for 14 hours fast instead of 12, and I'm afraid of my sugars going dangerously low or something, but even in spite of how obviously sick I was that time she still dismissed the hypos as though they weren't important, even though if blood sugar goes low enough it can be really dangerous. So I want a doctor who will take hypos seriously and work out a safe way to do these fasting tests, even if they still think I should be tested for all the same things as before as well.

What about asking a pharmacist? Would they know how to help me find a doctor specialising in digestive problems? Or how about a health food store? Do they have this kind of information?

noah45

I am exactly the same and have the same problems with doctors only interested in high blood sugars. I cannot eat any carbs without having a severe reaction leading to hypoglycaemia. From what I have researched I produce too much insuline in response to carbs and then my body thinks it needs more food.

Look up carb sensitivity, I can relate to this so much

gctest50

Cambridge scientists have identified the cause of a rare, life-threatening form of hypoglycaemia. Their findings, which have the potential to lead to pharmaceutical treatments for the disorder, were published today, 07 October, in the journal Science.
Hypoglycaemia, usually characterised by too much insulin which results in too little sugar in the bloodstream, is fairly common, often affecting diabetic patients or individuals with disorders that cause insulin overproduction. Symptoms can include seizures and unconsciousness.
However, in an estimated 1 in 100,000 births a genetic defect causes a severe, life-threatening form of hypoglycaemia without detectable insulin in the bloodstream. For this rare condition, the mainstay of treatment has been implantation of a surgical feeding tube through the front of the stomach to allow feeding during sleep. This prevents patients’ blood glucose from dropping dangerously low overnight when monitoring is difficult and when symptoms often pass unnoticed.
Dr Robert Semple, Wellcome Trust Clinician Scientist at the Institute of Metabolic Science at the University of Cambridge, said: “Fear of low blood sugar has dominated the lives of these patients and their families, and for many years the lack of an obvious cause has added to their anxiety. Offering families an explanation for a rare disease is usually of great value to them in its own right, but in this case it is particularly exciting that our findings open the door for a new and specific treatment in the future.”
For the research, scientists at the Institute of Metabolic Science and the Wellcome Trust Sanger Institute, working with clinical specialists inCambridge,LondonandParis, studied three children who suffered from this unusual form of hypoglycaemia. By examining the children’s genetic code, they were able to identify the rare genetic alteration responsible for the disorder. In all three children, but none of their parents, a single change in the AKT2 gene was identified.
AKT2 plays a critical role in transmitting insulin’s signal to the body’s tissues. The change identified in AKT2 left this signal constantly turned partly on, even during fasting when its absence is essential for liver glucose production. The study’s results not only offer an explanation to families for this severe metabolic disease, but also suggest an immediate target for new drugs.
The prospect of a new pharmaceutical treatment for this rare disorder is dramatically increased due to the fact that the AKT2 molecule is closely related to a molecule that is commonly activated in cancers (AKT1). As a result, the scientists speculate that drugs currently in development (some at the advanced clinical trial stage) that directly block activation of the cancer molecule AKT1 but also happen to block AKT2 could possibly be used to treat this rare form of hypoglycaemia.
Prof Stephen O’Rahilly, co-author of the paper and Co-Director of the Institute of Metabolic Science, said: “I went down to Great Ormond Street to see one of these patients, then a young child, about 10 years ago. It is enormously satisfying that we have finally understood the cause of his problem and very exciting that a potential therapy immediately suggests itself for this young man and others with this, probably under-recognised, condition.”
Dr Inês Barroso, Joint Head of Human Genetics at the Wellcome Trust Sanger Institute, said: “Beyond the exciting prospect of offering hope for treating diseases such as these, this study is an excellent example of how recent advances in genetic approaches will transform medical diagnostics and treatments.”

http://www.cam.ac.uk/research/news/scientists-identify-cause-of-severe-hypoglycaemia