Undiagnosed but high blood sugar

[Brunneria]

I find a big protein meal will darken the urine significantly.

So can dehydration.

Have a look at this:
http://health.clevelandclinic.org/2013/10/what-the-color-of-your-urine-says-about-you-infographic/
As for the smell, I find that anything I have eaten can affect it.
A cup of coffee in the morning, and my 11am pee smells... almost astringent. I assume that is the caffeine. Or one of the other 300 chemicals in coffee. Spices, garlic, tomatoes even, will have their own effect.
Asparagus is not good (understatement), while pineapple is very sweet. Not that I have pineapple often nowadays.

 

[Lamont D]

I'm ducking that question as well!
Did somebody say I'm taking the p.......?

 

[RuthW]

This is a little... Well, embarrassing...

But the cardiologist I went to asked me to do a 24 hour urine collection to rule out some relatively rare types of tumour that can apparently produce symptoms of POTS. She said that if I had this, then they would find raised levels of adrenaline and noradrenaline in my urine. I am not too worried about that, as I think they are quite rare!

Anyway, I finally got round to doing this urine collection yesterday. I noticed my urine is always dark, dark, dark yellow and cloudy! Almost looks orange-brown. And also, it has a really strong smell that almost knocked me out when I re-opened my collection bottle!

I smelled it again and it smelled like... Like... Sugar and something rotting. Really sweet and unpleasant. I didn't tell the receptionist at hospital when I gave her the sample, because I thought it would be weird and probably pointless. But now I think... Erm... Is this ok?

I did drink tea and a couple of glasses of squash, so I don't think I was overly dehydrated or anything.

Yes, that's not good, except in the sense that all information is good when you're trying to solve a problem. My younger sister's Type 1 diagnosis came shortly after a kidney infection. But she also had extreme fatigue and rapid weight loss.

We're holding our breath here. Did they do any more tests?

 

[diggerfrank]

Hi there,

I signed up to the forum after doing some interesting reading on other people's posts here and was hoping for advice. I am not diagnosed as diabetic, but I decided to do some home blood glucose tests (due to symptoms) and got readings over 10! I would really appreciate some insight on whether this is dangerous. I am also seeking advice from my doctor.

On all tests I ate one meal and drank nothing other than tea without sugar during testing. Did not exercise during test. Washed hands and dried with disposable kitchen roll for every single test to get accurate results. My BMI is 15.5 (underweight).

Friday 29th May:
6.00AM: Fasting BG = 5.0
6.15AM: Ate my normal breakfast (2 x whole grain toast with spread and Fortisip high calorie drink - total 560 kcal).

7.15AM: BG = 10.3 (1 hour)
8.15AM: BG = 5.6 (2 hours)
9.15AM BG = 5.2 (3 hours)
10.15AM BG = 5.0 (4 hours)

13.30PM on the same day, I did another test by eating one cup of instant white rice (plain, total 350 kcal).

13.15PM: BG before eating = 4.9
13.30PM - ate cup of white rice
13.45PM: BG = 4.4. (30 mins)
14.15PM BG = 9.9 (1 hour)
14.45PM BG = 9.3 (90 mins)
15.15PM BG = 9.3 (2 hours)
15.45PM BG = 8.3 (2.5 hours)
16.15PM BG = 7.7 (3 hours)

I repeated the breakfast test (exactly the same meal) on two other mornings with the following results:

30th May:
Fasting blood glucose = 4.2
BG after 1 hour = 10.1
BG after 2 hours = 6.3
BG after 3 hours = 5.8

2nd June (today)
FBG = 4.7
BG at 45 mins = 8.4
BG at 1 hour = 10.3
BG at 2 hours = 6.4
BG at 3 hours = 5.2

However, I've noticed I get different results for larger meals.

Sunday 31st May:
12.20PM: BG = 5.2
13.15PM: ate large roast dinner including beef, Yorkshire puddings, roast potatoes and veg plus a sugary J20 drink.
14.15PM: BG = 5.1 (after 1 hour)
14.45PM: BG = 4.8 (after 90 mins)
16.00PM: BG = 4.0 (after 3 hours).

Background;
I am a 23 year old female. I have had a lifelong anxiety disorder treated by antidepressants, but no other diagnosed health conditions. I have been having very strange symptoms for the past year which seem to have suddenly increased in intensity over the past month. Particularly, I am always exhausted with headaches and have experienced near-collapse when I try to walk around. I almost called 999 on several occasions, but I felt too terrible to make the decision so generally sat on the floor for hours until I felt better. I was always underweight my entire life, but have lost weight despite eating more food plus taking prescribed Fortisip (high calorie food replacement). Now my BMI is at 15.5. My GP sent me for an ECG which showed an abnormal heart rhythm so I am being referred to a cardiologist in mid-June. I feel this is a "red herring" given my blood sugar tests.

Should I take these results to my GP or will she laugh at me?! Any thoughts, advice or insights would be greatly appreciated.

 

[diggerfrank]

hi i wish that my results were like yours.My average readings ( last three months ) Were between 9--10.
i've been type 1 for 45 yrs. don't worry, but get it checked out

 

[Ballofwool]

Hello everyone!

I was very fortunate that my mum eventually offered to pay for me to see a private endocrinologist. I think mum understood that I was feeling so anxious not knowing what could be wrong with me, but she could only afford the original appointment and not to pay for private tests or follow up appointments. It's pretty expensive!

I went to my private appointment yesterday evening. The consultant didn't do any tests, but he looked at my hypo in the hospital and the notes from my GP, and he said that he believes I either have reactive hypoglycaemia or an insulinoma (a really rare tumour that produces insulin). He said I can have a mixed meal tolerance test to check whether I have one of these two conditions, which his secretary will arrange on the NHS in the next 2 - 3 weeks.

I'm happy I seem to be making some progress! But I'm a bit worried about this insulinoma possibility now.

 

[Ballofwool]

Presumably the test will also be able to tell whether I am getting diabetes, since they are going to be measuring insulin levels and blood sugar levels.

 

[Rillum]

Not good news about the possible insulinoma, but great that you're getting checked out! Thumbs up to your mum, too bad the system doesn't work better than that.

 

[Ballofwool]

Thanks Rillium! It's a shame that the NHS couldn't see me sooner when I *could* potentially have something quite dangerous - an insulinoma! I think it's unlikely but surely someone suspected of having a tumour shouldn't have to wait 6 weeks just for their initial appointment with a consultant... I suppose they have more urgent cases than mine, but in that case I think they need to employ more endocrinologists.

 

[Brunneria]

Thanks Rillium! It's a shame that the NHS couldn't see me sooner when I *could* potentially have something quite dangerous - an insulinoma! I think it's unlikely but surely someone suspected of having a tumour shouldn't have to wait 6 weeks just for their initial appointment with a consultant... I suppose they have more urgent cases than mine, but in that case I think they need to employ more endocrinologists.

Have you checked out insulinoma on google?
It may be benign. Or not a tumour at all...

About 15 yrs ago I was diagnosed with a prolactinoma (tumour of pituitary gland releasing extra prolactin). The diagnosis, from start to finish, including first tests, via MRI and 24 hr urine tests, took 30 months. During which I had no treatment.

I think I would have gone quietly mad if I hadn't poddled over to Mr Google.

A mere 2 hrs later and I had identified my tumour (by symptoms), calculated the severity (largish, but not interfering with optic nerve, causing headaches, blindness), unlikely to be growing (had had the symptoms for 20+ years, and they hadn't got worse in that time), unlikely to be cancerous (I was still alive after 2 decades).

I like Google.

So I just waited patiently for the 30 months to pass, while the NHS caught up, and eventually started me on medication.

So, in your case, I should find out as much as you can.
If nothing else, it will enable you to ask intelligent questions when you attend the clinic.

 

[Lamont D]

Hello everyone!

I was very fortunate that my mum eventually offered to pay for me to see a private endocrinologist. I think mum understood that I was feeling so anxious not knowing what could be wrong with me, but she could only afford the original appointment and not to pay for private tests or follow up appointments. It's pretty expensive!

I went to my private appointment yesterday evening. The consultant didn't do any tests, but he looked at my hypo in the hospital and the notes from my GP, and he said that he believes I either have reactive hypoglycaemia or an insulinoma (a really rare tumour that produces insulin). He said I can have a mixed meal tolerance test to check whether I have one of these two conditions, which his secretary will arrange on the NHS in the next 2 - 3 weeks.

I'm happy I seem to be making some progress! But I'm a bit worried about this insulinoma possibility now.

I'm made up that you've at last got tests on the horizon. I had a mixed meal test and its a test that will help the endocrinologist to probably give you more tests. It discounts other illnesses as well.
Brunneria is right, I have often used Google and Wikipedia to get information and used this site for how to eat to make you better, no matter what condition you have, eating low carb is always a benefit.
Did the endocrinologist give you any idea on diet?
Did he advise on other things like exercise or how to cope with the hypos?

 

[RuthW]

Well, that's starting to sound better. The endo has at least come up with a reasonable theory about your odd symptoms. Here's hoping he/she diagnoses it swiftly.

 

[Ballofwool]

Hello everyone, I think I owe an overdue update on this thread!

I had my mixed meal tolerance test two weeks ago. They gave me a tray with cornflakes, a banana, an egg and a small piece of toast. They found that my blood sugar went quite low, they measured 2.6 at two hours. It then slowly went back up over the next few hours, reaching 4.0 after four hours. I saw the consultant again this morning. He said that I am having episodes of low blood sugar, but he considered the definition of hyperglycaemia to be less than 2.2 -- so he said it wasn't really hyperglycaemia?! That's not what I thought!

Anyway, he said that since I didn't reach 2.2 then I probably don't have an insulinoma. But he's going to present my case at a meeting and ask for the other doctors opinions on it. He also said I can do the 72 hour fast in a few week's time, which sounds really scary. I think this is to see whether my blood sugar goes low on it's own without me eating carbohydrates...

In other news, I've started using an app to track my calories and nutrients. I'm only eatig 6% of my calories from carbs ( vegetables) and I have gained a kilo. I'm used to running on fat for energy, I'm doing extra hours at work and I feel awesome!

 

[Rillum]

Good to hear that diet is helping you! Hope that the doctors try to find out more.

 

[Lamont D]

Hello everyone, I think I owe an overdue update on this thread!

I had my mixed meal tolerance test two weeks ago. They gave me a tray with cornflakes, a banana, an egg and a small piece of toast. They found that my blood sugar went quite low, they measured 2.6 at two hours. It then slowly went back up over the next few hours, reaching 4.0 after four hours. I saw the consultant again this morning. He said that I am having episodes of low blood sugar, but he considered the definition of hyperglycaemia to be less than 2.2 -- so he said it wasn't really hyperglycaemia?! That's not what I thought!

Anyway, he said that since I didn't reach 2.2 then I probably don't have an insulinoma. But he's going to present my case at a meeting and ask for the other doctors opinions on it. He also said I can do the 72 hour fast in a few week's time, which sounds really scary. I think this is to see whether my blood sugar goes low on it's own without me eating carbohydrates...

In other news, I've started using an app to track my calories and nutrients. I'm only eatig 6% of my calories from carbs ( vegetables) and I have gained a kilo. I'm used to running on fat for energy, I'm doing extra hours at work and I feel awesome!

Do you mean Hypoglycaemia not hyper?
Either way, I think he's having a laugh.
3.8 is universally recognized as having a hypo.
Even though there are some who feel quite normal at those levels.
I'm so glad you feel so good! You seem to have control! And you've gained the weight you wanted.

I have done the 72 (and more) fasting test.
Once you are past the first day, the only thing that bothered me was the waking up for testing my levels!
If you go for a walk around the meal times and like me can't stand the smell of hospital food, you will be ok! You get a determination about you to see it through.
You are right about the test being about insulinoma, it's also a test about other conditions, that will eliminate them as well.
If you're blood glucose levels don't go up or down, and stays at normal levels, that means, you have a form of Hypoglycaemia!

After reading about the different types of RH. I would hazard a guess, if you have, Hypoglycaemia, then it is probably, Alimentary RH! Or dumping syndrome!

But I maybe talking rubbish!

Thanks for the update, let us know how you get on!

 

[Brunneria]

Hello everyone, I think I owe an overdue update on this thread!

I had my mixed meal tolerance test two weeks ago. They gave me a tray with cornflakes, a banana, an egg and a small piece of toast. They found that my blood sugar went quite low, they measured 2.6 at two hours. It then slowly went back up over the next few hours, reaching 4.0 after four hours. I saw the consultant again this morning. He said that I am having episodes of low blood sugar, but he considered the definition of hyperglycaemia to be less than 2.2 -- so he said it wasn't really hyperglycaemia?! That's not what I thought!

Anyway, he said that since I didn't reach 2.2 then I probably don't have an insulinoma. But he's going to present my case at a meeting and ask for the other doctors opinions on it. He also said I can do the 72 hour fast in a few week's time, which sounds really scary. I think this is to see whether my blood sugar goes low on it's own without me eating carbohydrates...

In other news, I've started using an app to track my calories and nutrients. I'm only eatig 6% of my calories from carbs ( vegetables) and I have gained a kilo. I'm used to running on fat for energy, I'm doing extra hours at work and I feel awesome!

That is such good news!

Well done - and i'm so pleased you are feeling good.

My view (and remember, i've never actually been diagnosed with RH, because no doc has ever believed me and been willing to test) is that feeling REALLY good on a very low carb diet, plus the relief of your symptoms is actually a better diagnosis than an official one from the nhs.

- Because it puts YOU in control of your condition.

 

[Lamont D]

That is such good news!

Well done - and i'm so pleased you are feeling good.

My view (and remember, i've never actually been diagnosed with RH, because no doc has ever believed me and been willing to test) is that feeling REALLY good on a very low carb diet, plus the relief of your symptoms is actually a better diagnosis than an official one from the nhs.

- Because it puts YOU in control of your condition.

That's a really good point Brun!
Couldn't have put it better myself!

 

[Ballofwool]

Hi everyone,

I'm in hospital, about 50 hours into my 72 hour fast. They've had loads of readings of 1.8 all night last night, but the lab said they measured 2.8 so I've been forced to continue. I think I probably have an insulinoma. I feel like I'm dying.

The doctor doesn't understand why I'm having the test or anything about blood sugar, so I had to explain everything to him. I don't think he believed me about what the test was for. An hour ago, I started crying on the phone to my mum. She said endocrinology would send their registrar to check on me, because she should actually have an idea of what this fast is about. But that was an hour ago and no sign of her yet. I bet she just said that and isn't actually coming to see me.

Every time I stand up my vision goes black and I start fainting for a few seconds. This is by far the worst experience of my life, I feel like I'm dying and eating away at all my internal organs...

 

[Ballofwool]

My mum rang endocrinology, by the way. That's why she heard the registrar would check on me. I realised my last post might not make much sense. My brain isn't working

 

[Ballofwool]

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...