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My journey started about 15 years ago, I felt dizzy, sweating, unsteady and disoriented. This was at work. I was sent to the surgery, I was told to lie down and given water, I had my BP taken. My pulse and a few readings like temperature. My BP was high and a doctor's appointment was made for me that evening. (How things have changed).
I saw my GP who asked a lot of questions. My lifestyle etc.
He told me that I would have to look after myself better,, improve my diet. You know the usual things, drink less and of course give up smoking. Things didn't improve much but on May 1st 2001, I was given meds that helped me stop smoking. And I haven't had one since. It didn't improve my health, nor was the improved diet that was recommended by my nurse at the surgery. I steadily, slowly put on weight, I reduced my alcohol intake, but I was a social drinker, mainly around sports. And only a couple at a time, as after 3 pints, I was anybody's and I always had bad hangovers as well.(I gave up totally, a couple of years later).
Believing that the dietary advice I was given, and that it wasn't working, I was willing to try anything that helped me controlling my weight. But nothing did. Nothing helped the gradual weight gain.
I used to on average walk about 10 miles a day. Also my children were demanding my time then. I also did shiftwork.
Which I didn't mind but must have sent my body haywire with my sleep patterns, I slept well though as always not enough, when you have a big family.
I didn't ignore my weight gain or have any major symptoms, I was too busy to notice any gradual changes in my body, my metabolism didn't tell me, as far as I was aware I was getting old and my age was creeping up on me. I was still trying different diets and still nothing worked.
It all began again in late 2008. I was at home and off work because it was a weekend.
I was all consumed with thirst, drinking too much, peeing too much, all the classic diabetic symptoms. On the Monday morning, I got another emergency appointment, to my new named GP. She took the usual BP, temperature, pulse etc. Then she went for a testing kit, she finger tested my blood glucose level. It was 30.3.
She tried again and it was 29.5mmols.
She told me I had diabetes and gave me a prescription for metformin, aspirin and a drug to help with hypertension.
All these tablets were changed within a month because they really had me in so much discomfort, all too slow release and coated for enteric reasons. I was told at that time to cut out sugar, never had much anyway, start eating more fruit and veg, eat good carbs.
Had my bloods for hba1c done and they were 7.8. Which the GP told me that he was surprised at the level. I did get some control, I cut down again on my eating and bought a dog, so I could walk more as I was going through retirement. I was sent on a course where I was told to eat more complex carbs and eat more fruit and veg. I told them that I already tried every diet that they had recommended and it hadn't done me any good.
I thought that because the symptoms had gone and my usual day to day living had come back and I thought that the meds must be making me feel better that I never got an awareness that my diabetes was anything but ok. What I had been considering that even though I tested I really didn't know what was going on.
In October 2009 , I had my yearly check, which the GP was really happy. 3rd named doctor, It was in the period when I started saying to the docs that I felt something was not quite right. My weight by now was approaching. 17 stone.
He did other bloods and my cholesterol, BP, liver function, kidney function was high but my fasting bloods was high.
Off for scans and a trial with statins. Reduced metformin. Found I had a fatty liver. Lipids, cholesterol high gaining weight slowly but surely. Diabetes fine. Done all the courses, the diets, the symptoms increasing. The doctors saying that it's my diabetes and the other problems that I have already said.
Because of the frustration of the growing sensation that something else was going on. The more time I spent looking for reasons why I was light headed, dizzy and not the level headed guy that I know I am. The anger, the frustration, kept me wondering.
I was put on sleeping tablets because of the lack of sleep. I wasn't getting restful sleep. I was getting to sleep but I couldn't stay asleep. Really weird dreams. I would be absolutely knackered and wide awake. I asked a locum if something other than the diabetes was causing the sleep disorder. He told me losing weight would help! When I informed him that I have been on a diet for nearly ten years, he said eat less!
I stayed on them tablets for a year, they helped a little, but it was something else entirely that changed my life.
I was always acclimated to cold weather and I was always warm, I never thought that it was my body telling me that a reason I was warm and feeling more dreadful every day was I was intolerant to sugar, I searched the internet for T2 diabetes symptoms. I realised that mine were more extreme but within diabetic diagnosis. I was losing my confidence, I was losing my will to do everyday things, I was at that point starting to do more for the wife, shopping, cleaning, washing, the household chores, we were going through a period when the wife was more important than myself. I carried on regardless.
The outcome of this period is somewhat vague and a lot happened which is blurred and I believe I was quite ill.
The symptoms increased, the eye blurriness, the horrible symptoms of having hot flushes, the constant headache, the lack of energy, the ever growing hunger, the sleep deprivation, the anxiety, a lot of stress, the lightheadedness, fatigue, wanting to sit down and eat and eat, the lethargy, anger and anything would kick me off. I was down and struggling. And the dreams!
. Was I beaten? Well, yes, I'd had enough and I couldn't fathom out what was happening. Not by then did I care. My weight was 16st 8lbs
In 2012 October
My chance appointment with my doctor, because something was wrong with my prescription, changed things.
I had porridge in the morning, made with water, as recommended by the diet I was on!
I walked to the surgery, a couple of miles walk! I was hot from the exercise! Took my coat off and waited.
I sat down with my GP and wondered what the problem was with my meds. She looked at me, yes another change of named doctor,
and kept looking at me, she asked whether I was warm, then said I looked unwell, she went out and got a testing kit.
I was having a hypo. 2.4 mmols. She asked if I knew about having hypos. No! Do I get this symptom, that symptom, yes!
Well, she finally said, I don't know why, but I'm going to refer you to see a specialist. Because this is not right, stop all meds except the aspirin cos my BP was high. She took every conceivable test, and another blood glucose test. I had recovered to 7.2 because she had given me a couple of glucose tablets. Everything was high, an appointment for more bloods. Another docs appointment for a couple of weeks later.
I went home and felt worse. I took my levels randomly, I found that I couldn't get a normal level, but I did notice I was going into hypo after eating. I was still eating a lot of carbs. Because of the diet. And I still thought that I was eating right and this was a form of diabetes???
Until my hospital appointment, I lived under a cloud, I was, I believe, getting depression, all the symptoms were wearing me down, my monetary problems were getting worse, the wife being disabled and diagnosed T2 around the same time.
It was just one thing after another. My GP didn't know what to do. She didn't have a clue.
My appointment arrived, I was apprehensive, because what could he do. My life was hell, I tried everything to get better, the more I tried the worse it got. My weight was 16st 10lbs
He was understanding, and getting an idea, I was sent for bloods and another appointment in a month, he brought in a dietician, and we went to her office.
She asked what my diet was and then, exercise, job, etc.
She gave me a food diary and a blood glucose record sheet. She then asked if I had heard of the diabetes website.
Of course, why would I have? She told me that a low carb diet is what my consultant recommended and this was the site to look at, for recipes and information. She gave me a low Gi food booklet and advised me to only eat low gi foods.
I took it home and the rest of the information, the next available morning, I logged into the diabetes site, it wasn't this one, and there was nothing new on that site, and nothing on low carb, then I googled again.
This site came up and I followed the trail of information and silently began to cruise around the info, for every answer, there was a question. I found out about hypos and how diabetics get them. I read info about T2s. I read about a low carb diet. I read about the extra sugars in food. I read about fats. I read about controlling your blood glucose levels. How to check them and when to do it.
The success stories and the weight loss that diabetics were achieving on this ridiculous idea of a change of lifestyle, to not eat carbs and e a t more fats, that I had tried so hard to avoid. To make choices that didn't involve eating starchy, car by, sugary food. I found out that it was these things had become the reason why I could not lose weight. And the reason why I was feeling so awful.
I learnt that by eating low carb I could control my diabetes.
The next month, I started to eat low carb as much as possible. Within a few days, I was already feeling better. However when I tested my levels were low and my fasting levels were norm, it couldn't be that the change had already worked.
I tested and tested and tested. Different times, different foods, different times before and after. I was still going into hypo.
What was causing this, I scoured the internet. Really didn't know where to look. I was still in the dark, after the initial boost, still felt awful.
I continued low carbing despite not feeling better.
I got weighed again at the next appointment and my BP had come down slightly, my weight was 16st 5lb.
He told me straightaway that my diabetic fasting levels were normal. My hba1c was well within normal levels. And if I tried a couple of tests in the hospital he thought that he could then determine the cause of my symptoms. At that time I was still considered myself diabetic.
He told me I was to have a mixed meal test and an oral glucose tolerance test. He asked if I was eating a low carb diet and I see that would work for me. He also said to cut down on fruit and eat more often through the day with small meals. He said eating small regular meals would stop the hypos. He perused my food diary and my glucose readings.
I had the tests, and I began to get control of my health, I lost weight, I got fitter and my symptoms lessened. Only my diet had changed. With the confidence of knowing that if I stayed away from carbs and sugars, my whole life changed around.
My consultant without doubt has done this. He recognised the symptoms, he had one more test to do.
Within a few months, at his advice and by July of last year, a full regular member learning and advising and contributing to my fellow forumites. With the help of a few friends on here, they saw me through my worst periods of my life. They steered me through the minefield to get away from the NHS advice and think for myself. To eat what was best for me, to see the benefits of low carbing.
By then my weight had gone down to 14st 9lbs.
But I was still going hypo! The glucose test revealed that 3-4 hours after eating my levels would crash. But I didn't hypo, when I low carbed! My final test for prognosis and to eliminate pancreatitis and pancreatic cancer was a72 hour fasting test.
I would have to spend 4 days in my local hospital. And not eat or drink. This has been documented in a thread of mine.
That test definitely ruled out every condition except for a form of NON DIABETIC Reactive Hypoglycaemia.
I was stunned when he told me. Not diabetic?? I flushed insulin when I ate carbs and sugars.
He asked me if I would become a form of guinea pig as I was really rare case. I didn't know what or why I was special.
I was asked to try a Gliptin. Which is an inhibitor, to help with the glycogen and dpp4 production.
So I did. My weight by the end of August last year had dropped to 13st 11lb.
I have had a few more tests since, increased dosage, but I'm learning a lot and living a low carb lifestyle. I stay away from them as much as possible. I say that I am allergic to them as then I don't have to explain my condition. "But your still diabetic?"
If I stay within the normal zone of blood sugar and eat low carb I'm safe. And in turn my whole system has altered, all my life signs have returned to normal levels. BP, cholesterol, liver function, fatty liver, lipids etc. I am totally fit and healthy for an old man of my years. My only fall down is carbs and sugar. I react to them!
My endocrinologist doesn't know why, my new doc has heard of it but never seen a patient with it!
My endocrinologist says that it is very rare to have my condition naturally. When he first seen me, he wasn't sure but because of no surgery or severe trauma, how I got it, he doesn't know. The meds are working but not as he wants them to, after two more tests, oral glucose tests, I have still had a hypo, but I'm not disappointed as it wasn't a cure and I'm fully in control through low carbing. If for example, I had high levels, If ill, I would just fast. Simple as that, I would fast till my levels normalised.
What I found, was, that I dont need the meds for my condition as long as I was in control and I know I can have a treat or two!
It has taken over my life, but it's a life worth living.
My weight in January 15 was 12st 3lbs. January 27 11st 13lb. Today 11st 10lb.
My target weight for the wife's birthday is 10 stone dead. But I'm not bothered by the figures as long as I'm healthy and in control!
I'm special, I have medical paper waiting to be published about me! According to my consultant, that through his research into my condition and how I naturally got it, there has been less men that have walked on the moon, that have got my condition. Believe it or not! There is many forms of Reactive Hypoglycaemia as there is of diabetes. Just nobody has heard of them.
I've had enough of being being reactive!!
Thank you for reading!
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