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Undiagnosed but high blood sugar

Can you get your mom or somebody else to come and raise hell?
 
Ballofwool said:
Worried I will slip into a coma any minute. I'm on a general surgical ward so the nurses, doctors and stAff on the ward don't know anything about blood sugar! So frightened. Thinking of just storming out except I think I would collapse if I tried...
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really sorry to hear your struggling with all this. please keep us posted on what happens if you feel well enough. I'm sure lots of folks on here are routing for you !
 
as you're underweight & have been fasting for quite some time now i'm not surprised you feel faint ! try not to worry about a coma - you'd have to be showing quite full-on signs of problems for that to happen I reckon, though i'm not a doctor of course.
 
I looked it up, and if you do lose consciousness, they'll have time to give you some sugar.
 
Oh love. Can you get your mum to kick up a fuss? They should stop the test when you go low. That is the standard protocol.

This is appalling.

Get your mum to insist you are treated by staff who are experienced in blood sugar.

Get her to ring the endocrinology department and speak to the consultant and quote your low blood test results.
 
Hi,

I don't want you all to worry about me any more. I'm happy! The endocrine department, after hearing my blood sugar was 1.8 (got my mum to call again!) sent an endocrine consultant who works with my consultant. He said he had looked at my results, they had plenty of appropriate data and he had come to end the test. He was appalled at my treatment so far and that the test had continued despite two readings of 1.8 which were hours apart!

The nurses don't "get" that I have reactive hypoglycaemia and they keep trying to offer me sandwiches and potato soup as my end of test meal. Given my blood sugar is around 2, and carbs make it lower, I don't think that's wise somehow!

They then offered a mixed bean salad, I said NO BEANS. I can tell they think I'm taking the **** but this could actually make me collapse...

I think they have gone to see what else that they can get hold of, but it doesn't seem promising.
 


well, its good that the consultants stepped in. Hope they find something for you to eat !
 
So relieved to hear this! Hope they find something you can eat.
 
Hope you are feeling better.
Let us know later how you are getting on.

I know what it's like with people that haven't got a clue!
At least you'll get something sorted now!
 
Get thee down to the hospital canteen and have a Full English.
You will feel reborn!
(Just leave the toast!)

Congratulations on surviving the worst the NHS can throw at you.

And PLEASE do not forget how bad you have felt, and how bad the care has been.
And make sure you formally COMPLAIN so that no one else needs to go through this.
 
Oh, and here is my standard advice (based on experience) for recovering from a RH hypo.

Eat no carbs.
Eat lots of protein and fat (steak, English breakfasts, ham and cheese, veg, salad, mayo...)
Eat regularly.
Be gentle with yourself. It could take 3 days till you are back to normal, so don't do anything stressful or physically demanding until you feel 100%
Sleep plenty.
Expect mood swings, weepiness, apathy and floppiness.
Your bg stabiliity may also be fragile for a while, but that is OK, just chill, snuggle and watch DVDs - if you can.

Oh, and please come back and tell us how you get on!
 
Hello again,

Hope you're not fed up of my escapades by now, haha! The hospital did well in the end. They let me have a nice green salad with one egg, roast beef and 30 grams of cheddar.

Then they forced me to have a pudding so I picked the full fat yoghurt which was 12 grams of carbs. Following that I are a whole packet of pork scratchings (never had them before, they're really weird!)

Unfortunately, this didn't seem to help because they said my blood sugar was still at 3.2 and I'm not allowed to go home until it reaches 4.0 or above. They're force feeding me another full fat yoghurt, plus more salad. I've calculated that's 34 grams of carbohydrates in the last three hours. That's more carbs than I will often eat in a day. I can't understand why I'm still hypo. I want to accuse their glucose monitor of being broken. My fella is coming to pick me up at 4pm, I am thinking of conspiring with him to help me escape the hospital un-noticed, like some sort of mad lady!
 
Are you feeling better?

Can he bring in something like nuts? Protein is going to be good in your situation. Maybe another big portion of cold meat. It will be slow release, but it will bring your bg up in a controlled fashion.
 
Brunneria said:
Are you feeling better?

Can he bring in something like nuts? Protein is going to be good in your situation. Maybe another big portion of cold meat. It will be slow release, but it will bring your bg up in a controlled fashion.
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I do feel a lot better, I feel quite weak but at the same time really amazing (although that's probably just in comparison to how bad I have felt for the last 50+ hours).

Good idea! I will get him to bring or buy every low carb food he can find. He's good at it now, and has even decided to go lower carb himself to match me! I suspect that maybe the yoghurts, despite being full fat, are actually bringing my blood sugar DOWN as a response to the carbs in them. If so, then this is a never-ending cycle, they're just going to keep feeding me carby yoghurts for infinity and I'll keep going around in circles!
 
Hi @Ballofwool.
Hope you are feeling better now!
Hope you made it home.

Did the specialist come to see you before you left and if he did, what did he say?

On the fast did they give you anything to make you hypo?


I never went hypo or hyper on my long fast! I just stayed between 4 - 5mmols all the time!

I think you may have Insulinoma!
 
nosher8355,

Sadly, I think you are right that I have an insulinoma. For some reason, I have thought I had one from the beginning, even though I knew I had no reason to draw that conclusion.

I didn't take anything during the fast except my normal antidepressants, iced water and two cups of zero calorie herbal tea. I am upset to think I do have an insulinoma. The consultant didn't speak to me again after the first time, but I gather he only came in the first place because my mother rang the endocrinology department and got really angry about how they were doing the test. But the one time the consultant spoke to me, he said he was considering giving me medication to raise my blood sugar, as he felt I could go to 1.8 in the night and go into a coma for hours, unable to wake up.

But then he changed his mind, reasoning that it only happened because I hadn't eaten, and if I eat dinner then I will be ok. So no meds.

I have been allowed home because after eating two more sugary yoghurts (they made me), my blood sugar went up to 4.7.

Brunneria, your comments about getting floppy and weak after a bad hypo were exactly right! When I got home, I couldn't stand, my pulse was 150+, so high we couldn't count it, and my blood sugar had gone up to 6.8. It felt like an awful adrenaline surge and I couldn't stand up, my boyfriend had to carry me to the sofa and I flopped down like a rag doll. This is absolutely horrific. I'm worried because I need to recover in time for my shift on Saturday. I have already taken time off for this test, so I really do need to make it on Saturday. Hope I recover a bit over Friday.
 
Take your time and keep well.
Hypo hell is not good! I feel for you! You are going through so much.
I expect you will here more from your hospital or your GP.
You should also receive a report on your stay in hospital.
Do complain, as I did, with my treatment in the hospital.
You should get a reply from them as well!
Keep us updated.
 
So glad you are home!

Make sure you eat well, and often.
You may feel MUCH better in the morning, and then better again on Saturday.
Just dont do too much tomorrow.
...and keep eating good, low carb foods.

Looking forward to hearing what the next steps are!
 
Hi everyone,

Feeling quite a lot better today, thank you for the support! You have really helped me get through the worst of it, especially before the consultant rescued me and I didn't know what on earth to do!

I feel a bit weird when I start thinking back to how I felt when I started this thread... I was just curious about blood sugar and doing a few blood sugar experiments on myself.

Now here I am with RH and quite likely an insulinoma too. I think everyone posting on the thread has been a few steps ahead of the doctors the whole time. Will post again when I hear more from the consultant. Either way, I'm sure the experience will be a useful comparison for anyone else suspected of having an insulinoma

Thanks for all your support again, hoping you are all keeping well and I'm sure you'll be hearing from me again soon.
 
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