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Undiagnosed but high blood sugar

So glad you are feeling better.

Part of the problem for you, in hospital, is that when your BG is that low, your brain isnt functioning properly - so you are not really able to make decisions, argue your corner and stand up for yourself in the face of hospital doctors and nurses.

I think you should be congratulated for handling everything as well as you did!
 

I'm sorry it turned out that way for you.

Do like Brun says, stand your corner, you can complain on the NHS website!

Stay in touch, let us know when they get in touch with you!
 
Hello everyone,

I got a discharge letter from the hospital in the post yesterday, but based on what the nurses said, this letter had been written at the time of my discharge. The letter states "results: no indication of insulinoma".

I don't understand this! Would they really have had access to the results at the time of writing the discharge letter? Don't these blood test results need a doctor's interpretation? Why did my blood sugar drop to 1.8 at around 30 hours? Why was the consultant considering putting me on medication to raise blood sugar, if there is no indication of an insulinoma? Is this letter totally meaningless?

I certainly don't expect you all to have the answers to these questions, but this is what I was left wondering...

In other news, the hospital called me and said I need to come in tomorrow morning for a short synacthen test, because my cortisol was too low in my previous two blood tests.

What does all this mean? I have no idea! The plot thickens...

Would it be appropriate to call the endocrine department at the hospital and ask them if this letter indicates my actual fasting test results?
 
Yes, I would ask for more info. This all needs to be properly followed up, preferably by a consultant discussing it in an appointment with you, I think.
 
You might not have it, as your symptoms are not reversed by administration of glucose.
 
I think I would make the call.

Low cortisol is a factor in some people's RH, so it is definitely worth having that test.

When I was having tests for my hormone stuff, it took them AGES. I think it was 18 months in all. The would tell me I needed a test. Send me an appointment letter after a few weeks, then I would wait months for the appt. Then have the test. Then wait a few more months. Then repeat. 18 months after that first appt, I got a diagnosis. It was like watching paint dry.

How are you feeling now? Back to normal after the OGTT?
 

Oh yeah!

It is your right to know!
You need to get a diagnosis and a reason why you haven't been told anything!
Be a nuisance, demand an appointment.
Good news about not having insulinoma!
 
Hi all,

It sounds like they definitely don't think it's an insulinoma. The nurse that did my blood test was very upsetting, she said it's my fault I feel unwell and my fault I got low blood sugar in hospital, because I haven't been eating enough carbohydrates.

Then I spoke to the consultant, but I was so upset by what the nurse said that I started crying. The consultant told me that he was the one that ended my fast early, which I have very little memory of! I didn't recognise him!

He said that my antidepressants might be contributing to my problems because they can lower blood sugar. He will await the results of the cortisol test, and call me if they find anything abnormal.

He said he is thinking it's some sort of glycogen storage disease, which could only really be treated by dietary advice. He looked at my record of foods I have eaten, which I have saved on the My Fitness Pal app on my phone. He asked if I was aware that i was on a ketogenic diet (designed to keep the body in ketosis), which is I was because it's an idea I had come across on the internet. Lots of people are claiming to be using it to try to lose weight, even though they don't have RH.

But then when the consultant tried checking my urine ketones he found I didn't have any traces of ketones. So it would appear it's not a ketogenic diet.

The consultant said that they have a big meeting tomorrow to discuss my case, then he will send me a letter about the outcome.

I feel better on my low carb diet, but seem to get really weak with crying spells on and off... But I think maybe it's just because I'm so worried about my health. I have made quite a few small mistakes at work (I think low blood sugar makes my memory bad), and I'm worried I might not be allowed to carry on working there...
 
Well, good news that you don't have an insulinoma! I'm happy that they're taking it seriously and trying to figure out what's going on. And don't mind the nurse, she's just applying standard advice to your abnormal case.
 

Yeah, really good news about the insulinoma. Happy for you.

If you are feeling rough it is the low bloods causing it!

Hope you get an answer soon. Keep low carbing and ignore that stupid ignorant old biddy!
Ignore her! The consultant seems capable enough and will sort you out.

Talk to your manager, tell him/her your problems with your symptoms! If he is decent, he will have an idea of what you are going through! Even the best people makes mistakes!

I think the crying and fuzziness and other symptoms will resolve once the correct dietary advice is given.
If you have a glycogen storage problem, that is not fatal and can be controlled.
The start of your new life is not to far away, they will sort it and because I know you can do this, you will once settled, feel the benefits, the extra energy, the knowledge of what you fought through. It will be a relief but the fight goes on to stay healthy.

I wish you best regards, in the same battle that I went through.
I will be around to help you!
 
I agree with the others! Good news about the insulinoma.

One thing - if you have been on a ketogenic diet for a while, it is possible for the ketones to no longer show in your urine. The urine tests become unrelaiable. Blood tests or breath tests are better. I would have expected your consultant to know this, but it is understandable that he didn't, since he probably doesn't see many ketogenic patients.

This must be terribly frustrating for you, and I am sorry you have to go through this.

I am now crossing my fingers that you get a diagnosis at the end of it, and that you haven't gone through this whole ordeal for nothing!!!

But, if the ketogenic diet is working for you, please stick with it. If nothing else, you have been feeling better because of that!.Wish I could give you a hug.
 
nosher8355 said:
Do you mean Hypoglycaemia not hyper?
Either way, I think he's having a laugh.
3.8 is universally recognized as having a hypo.
Click to expand...

Yes, he means hypoglycemia, but No, 3.8 isn't hypoglycemia. Her consultant is right, of course. 2.2 mmol is the bottom end of the range of normal blood sugar readings in NON-diabetics.

The hypo definition for Type 1 diabetics has a built-in "buffer zone" because, unlike non-diabetics, when we hit 4.0 or 3.8, or 3.2, or whatever random number is chosen in the country where you live, we MAY still have insulin-on-board, so we MAY be heading into a full-on hypo. But biologically speaking 3.8 is a perfectly normal blood sugar. I regularly wake up with a blood sugar round that mark and my consultant is happy with it because it is stable and not falling because I have my basal rates set right on my pump.
 
I'm sorry @RuthW

We are talking about someone who has a blood glucose ddisorder, not someone who would be described as normal. My normal hypo range starts around 3.5 and I'm non diabetic but have a blood glucose condition.
My consultant who deals with endocrine metabolic disorders in the North west has stated to me that he considers 3.8 a hypo!

As the op is getting really low readings this is Hypoglycaemia!

T1s have a different set of circumstances to hypoglycaemic!
And every hypoglycaemic is different in how the symptoms affect them.
Hypoglycaemics feel different just under the threshold.

You will have to reconsider your post because we are not the same as T1s!
 
Hello everyone!

I hope you don't mind me sharing my recent thoughts and events, because I'm feeling a bit down...

I was fired from my job because my memory was bad. I told my employer that this was due to my recent health problems, which are still being investigated. He still fired me. I think he also didn't want me to take any time off for medical appointments, which he was expecting me to do.

I also stopped taking my antidepressants because my consultant advised me that they could be contributing to low blood sugar episodes. I think this has affected me mentally.

I am now in the position of worrying how to pay my rent and bills again, struggling to stretch my partner's income further than it can go. I don't think I will be able to get another job because it seems my memory is always appalling! Is this a side effect of a very low carb diet, or a symptom? I'm not sure!

Am seeing my consultant again on the 29th of this month so I will bring it up with him and see if he has any insights.

Hope you are all doing ok!
 
Hi, if your boss fired you because of your health problems then he really isn`t the kind of boss I would want in the first place. I would suggest you try not to stress about work (easier said than done, I know) and concentrate on getting your health right. That`s far more important. Wishing you all the very best, Chris.
 
Hi, sorry about the job, but according to the Tories, there's plenty of them out there!!!!

The symptom of poor memory is caused by fluctuations in blood glucose levels.
Also being disoriented and disorganized. Dizzy, and so on. Anxiety, anger, to name a few!

Make sure you do ask your specialist, don't forget! Sorry! (Couldnt resist!)
I'm fine!
Hope you sort your health and employment problems soon.

Best wishes.
 
So sorry to hear this!

I do agree that keeping bg as steady and low as possible makes a huge difference to my memory.

Good luck with the job hunt, the pressure and stress won't help your RH, but there is always the chance you could end up with something you enjoy, a better boss and more money. It probably doesn't feel like that at the moment, but you never know! I have my fingers crossed for you!
 
Thank you all for the support and lovely replies! Let's hope this is just another phase that will lead to something better
 
Hello!

I have been admitted to hospital yesterday for suspected appendicitis. I was nil-by-mouth (not allowed to eat or drink) and my blood sugar dropped to 3.1 within the day. My mum visited me and I was freezing cold and confused so I asked the nurse to test it.

They tried to give me glucose jelly in my cheek but I protested because of my RH. A junior on call doctor came out, got a bit confused about my blood sugar condition, dithered a while and then started me on a litre of IV glucose which I've been on continuously.

My blood glucose measurement has gone up gradually on this to about 8 mmol/L and I feel better.

I've calculated I've has 85 grams of carbohydrates all in the form of simple sugars in this drip. Prior to that I'd been eating less than 30 grams of complex carbs per day. My question is, what will happen once the glucose drip is removed? Will I suddenly go hypo due to RH? It's been continuously dripping me with sugar!

The junior doctor did not know what - if anything - would happen.
 
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