Undiagnosed but high blood sugar

Where did that last message pop up from? I'm not sure what's the point of discussing this with my GP, I'm currently in the surgical assessment ward for abdo pain , and even the endo consultants are confused about my blood sugar issues, so it's way beyond a GP

Hello everyone,

Things have taken a rather bizarre turn and I'm sure you will be interested to hear the story. I am still in the hospital. I don't have appendicitis according to ultrasound scans and the pain has gradually dissipated. However, while I was here I kept collapsing with low blood sugar. As soon as the IV glucose was removed, my blood sugar became horribly erratic and it is still like this.

A nasty surgeon told me that I had to eat the high carb hospital food; end of story as far as he is concerned. Another surgeon then took over and said he thought it was likely all psychological and was holding my hand and leading me around the ward like some small child. He told me if I acted normal, I would become normal. He said carbs had never caused low blood sugar. I brought up my mixed meal tolerance test showing a drop to 2.6, but he had nothing to say about that.

For ages, they accused me of injecting the insulin of an unknown diabetic relative that doesn't actually exist. They also said that I must be vomiting secretly or that I have an eating disorder or taking illicit drugs in the shower. They told me I could only go to the toilet in a wheelchair and had to leave the door unlocked with a staff member listening outside. It goes without saying that none of this is true, but both myself and my mother have been horribly under suspicion by nurses and doctors for DAYS.

Eventually I lost the plot after days of this treatment and ran into the corridor in tears, collapsing in a heap on the floor. I found a very nice recently qualified junior doctor who spoke to me like a real person and was more competent than all the senior surgeons combined. He arranged for 2 hourly blood glucose tests, moving to one hourly if below 5.0. Unfortunately this means I've been having blood glucose tests over 12 times every 24 hours, day and night. My fingertips have become so tough that they are struggling to get into them any more.

The next morning, a new team of surgeons came to see me along with a psychiatrist. The told me that because I have eaten such a low carb diet, I have created a situation where my body finds it hard to tolerate eating carbs at all. They said I was experiencing starvation due to my keto diet and low body weight. Basically, I was slowly dying of starvation while eating 3,000 calories of fat a day. They said I was at risk of re-feeding syndrome.

They also randomly found that my LDL cholesterol was 11.4 (I'm 23 & underweight!) so I have now been told I've got to eat a low fat, high carb diet. Whenever I eat the carbs, I feel really dizzy and begin to get completely delirious. Yesterday I collapsed in the hospital corridor, and a porter had to bring me back in a wheelchair. They told me that my white blood cell count was extremely high and one doctor wanted to start me on IV antibiotics but He wasn't entirely sure what for, so I didn't think that was a good idea.

For some reason, they are convinced that my blood sugar drops are too severe to be due to anything like reactive hypoglycaemia, they've said it just doesn't fit. Not to mention the fact that they will also happen when I am fasting. Tonight I had another hypo (only measured 3.9 when they woke me, but I was drenched in sweat so think I was already on the way up!) They've measured as low as 3.1 in the week I've been in here, but I think they've missed a lot of lows. I keep getting these huge swings in mood.

They're having me drink Fortisips, which send my blood sugar up to 10.7 and above! Then one hour later, I'll be back at blood sugar of 4.0!

Rillum said:

Oh my, that sounds awful. I think you'll have to listen to them and do as they say. Then they can see whether that works.
It's true that continued ketosis makes one more glucose intolerant, as enzymes for sugar metabolism are regulated down when they are not needed.

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I think you are probably right that I will have to comply. My only other option is leaving, and that won't get me access to any sort of help! This morning I was at 4.9 mmol at 8.30. I then ate beans on toast at 9.00AM and had a blood glucose reading of 3.6 at 9.30AM. As I suspected, it is sometimes dropping almost immediately after eating. When I sit down it can recover spontaneously, in as little as 10 minutes. However, sometimes it continues to drop instead. If I pace up and down my room when hypo I find it hard to stay conscious, but after a few minutes my adrenaline kicks in. I suddenly feel anxious, my heart goes mad, and then when re-tested my blood sugar will be back above 5 mmol!

I have managed to convince them to give me a continuous glucose drip overnight because that has been enough to prevent hypos in the past few days when I wasn't supposed to be eating. I am supposed to be seeing my "team" tomorrow (although they're just some random surgeons), so hopefully that will provide a new game plan. It's not really safe to keep me on this high carb diet and continuously provoke hypos and rapid blood sugar swings all the time!

I will begin to collapse whenever I stand up if it's soon after eating. Usually I manage to sit down or fall down in a controlled way, but often my mum has been holding me up while I walk around in my hospital room.

Rillum said:

Are they really surgeons or is that just a term for a doctor?

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They are actually surgeons. One of them told me I need someone more "cerebral" - as surgeons he said just like to chop and stitch people and they can't do that with me!

I'm hoping to get referred to an appropriate team of doctors tomorrow. The surgeons tell me that all they have been able to do so far is the basic of preventing me from going hypo. I'm worried nobody will take my case and then I will be discharged. I'm really not safe to go home. My keto diet seemed to be causing actual starvation and carbs make me hypo.

I am thinking I could have something like this dumping syndrome, but I need to get the right sort of person to investigate!

They have been saying it is psychosomatic, but in the last day or two the nurses have made it clear that my fluctuating blood sugar is serious. They have said that even very poorly controlled diabetics don't demonstrate so much daily fluctuation in blood sugar!

Please wish me luck for getting referred to an endocrinology team tomorrow... I really don't want to be discharged! I'm so unwell!

I haven't heard any more about the white blood cell count, but I will be sure to ask the doctors that tomorrow!