Unanswered Questions niggling me

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi all, I hope you're all doing well.

I'm doing good on the whole, feeling much better generally, bs under control (as in no hypos!) and I've even managed several days out with plenty of walking in the past few weeks. If anything my numbers seem a little higher these days, but I'm due a Hba1c as soon as I get round to making the appointment, so we'll see what's happening.

The reason for the post, is that I guess I have unanswered questions that are niggling me a little. I was lucky enough to find an Endo who was aware of RH (all be it I had to go Private), and he carried out a prolonged OGTT to confirm my diagnosis. Brilliant! You might think.

Having read many of your accounts, those of you lucky enough to have been given a formal diagnosis also had other tests to rule out conditions such as insulinomas. My Endo didn't do any further testing, he didn't even check my insulin levels during my prolonged OGTT. Given that my symptoms came on suddenly, I find this hard to accept.

So even after all this time, I can't help but wonder if there could be something else going on. I'm no expert and I don't spend lots of time reading up on such matters. My common sense tells me that if I had an insulinoma causing the production of too much insulin, then this would not merely be controlled by diet alone. Right or wrong?

I haven't talked this over with my GP yet as he doesn't seem to take it seriously. He did have a chat with my Endo around a year ago now and between them they decided no further investigations were necessary.

I don't know why this is troubling me now. I'm not laying awake worrying about it, but it's definitely niggling me as I feel I still have unanswered questions. Getting them answered may prove impossible through the usual channels though!
 

Winnie53

BANNED
Messages
2,374
Type of diabetes
Type 2
Treatment type
Diet only
Kaz261 I don't have any answers. Have your researched online how an insulinoma is diagnosed? I think that's an important question to investigate. Sorry you're going through this.
 

Emski68

Member
Messages
6
Type of diabetes
Type 2
Hi caz x what are ur symptoms/numbers? I've also been diagnosed with reactive hypoglycaemia (with a diabetic number thrown in!) and am under investigation for insulinoma
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi caz x what are ur symptoms/numbers? I've also been diagnosed with reactive hypoglycaemia (with a diabetic number thrown in!) and am under investigation for insulinoma

Hi Emski68, I don't really have symptoms anymore as my RH is pretty well controlled by diet. When I had my prolonged OGTT which confirmed the RH diagnosis, I was in the pre-diabetic range after 2 hours (9 ish from memory) and hypo'd after 3 hours at 2.7. I slowly recovered up to 5's in the following 2 hours and stayed there. I'm certain they never tested my insulin levels in line with my bs though and I never had a scan to check my pancreas.

At the time, if I ate too many carbs I would get thirsty and very tired and had ketones in my urine ( but no glucose with the ketones).

As long as I stick to the right foods, the only symptom I occasionally get (which I didn't get until recently) is a burning pain in my stomach area. Usually at night in bed. I don't get it often but when I do, it's very uncomfortable. I thought it might be heart burn, but it doesn't feel like that and is lower down.

My Endo was one of the leading ones in the region, so I'm sure he knew what he was doing. I just would have been happier if he'd and ruled out insulinoma.

How do your symptoms/numbers compare with mine? What tests are you having (if you don't mind me asking)?

Thanks for your reply.
Kaz
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Kaz261 I don't have any answers. Have your researched online how an insulinoma is diagnosed? I think that's an important question to investigate. Sorry you're going through this.

Thanks for your reply Winnie53. I have researched how insulinoma is diagnosed and unfortunately those tests weren't carried out on me, which leaves me wondering.
 
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Winnie53

BANNED
Messages
2,374
Type of diabetes
Type 2
Treatment type
Diet only
@Kaz261 I've been experiencing intermittent pain in my lower left abdomen recently, possibly due to a diverticulum in my descending or sigmoid colon - ( http://www.emedicinehealth.com/slideshow_diverticulitis_diverticulosis_picture/article_em.htm ) - a common condition that affects 50% of those age 60 or older. About 10%-25% of people with diverticular disease will experience an inflammation of a diverticulum, resulting in infection ( diverticulitis ). I've only had a few episodes with mild discomfort and it's very intermittent, so for now I'm monitoring and increasing my water intake whenever I have symptoms. I'm already following the other recommendations listed here - ( http://articles.mercola.com/diverticulitis/prevention.aspx )

I think there are two things we can do: use a black pen to mark where the pain is occurring with each episode. The other is to keep a "food and poop" diary (to see if there's a relationship between what's eaten and the symptoms). This information will be helpful to both you and your doctor.

For me, one of the things I noticed is that my symptoms coincided with drinking more black and green tea, less water, and larger stools. Interestingly, when I drink more water, the symptoms remit.

I'd be concerned about the burning pain too. I only experience heartburn, which is different from what you're describing, on the rare occasions when I eat out and allow myself to have a starchy vegetable deep fried in one of the unhealthy oils.

When I was trying to sort out my symptoms, I looked at a lot of illustrations of the organs in the abdominal cavity. Here's an illustration of the Digestive System... http://keckmedicine.adam.com/content.aspx?productId=117&isArticleLink=false&pid=2&gid=1090 Many more images can be found here... https://www.google.com/search?q=pan...MKHUm6DhgQsAQIIg&biw=1680&bih=879&dpr=1#spf=1
 
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Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
A sort of burning, cramp-type feeling in the lower abdomen can also be related to bowel problems, particularly IBS. It can also spread round to the lower back and is normally associated with needing to empty the bowels. I think you need to report this to a GP. It may be nothing, but needs investigating.

@Winnie53 have you ruled out any ovary issues? Ovarian cysts can put a lot of pressure on the lower bowels. There isn't much space down there! It happened to me over 40 years ago. My pain was where you describe yours and was not diagnosed for ages
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Hi all, I hope you're all doing well.

I'm doing good on the whole, feeling much better generally, bs under control (as in no hypos!) and I've even managed several days out with plenty of walking in the past few weeks. If anything my numbers seem a little higher these days, but I'm due a Hba1c as soon as I get round to making the appointment, so we'll see what's happening.

The reason for the post, is that I guess I have unanswered questions that are niggling me a little. I was lucky enough to find an Endo who was aware of RH (all be it I had to go Private), and he carried out a prolonged OGTT to confirm my diagnosis. Brilliant! You might think.

Having read many of your accounts, those of you lucky enough to have been given a formal diagnosis also had other tests to rule out conditions such as insulinomas. My Endo didn't do any further testing, he didn't even check my insulin levels during my prolonged OGTT. Given that my symptoms came on suddenly, I find this hard to accept.

So even after all this time, I can't help but wonder if there could be something else going on. I'm no expert and I don't spend lots of time reading up on such matters. My common sense tells me that if I had an insulinoma causing the production of too much insulin, then this would not merely be controlled by diet alone. Right or wrong?

I haven't talked this over with my GP yet as he doesn't seem to take it seriously. He did have a chat with my Endo around a year ago now and between them they decided no further investigations were necessary.

I don't know why this is troubling me now. I'm not laying awake worrying about it, but it's definitely niggling me as I feel I still have unanswered questions. Getting them answered may prove impossible through the usual channels though!
Hi, Kaz,
The three tests used by endocrinologists are glucose, insulin and c-peptide during all eOGTTs.
But these tests confirm diagnosis of RH or Hypoglycaemia.
Other tests confirm diagnosis of insulinoma, these are the extended fasting tests, that I and other RH ers have had.
I believe if your (private) specialist endocrinologist thought that if you had a chance of having insulinoma or pancreatitis or cancer of the pancreas, which is the need for these tests, I'm sure he would have ordered them for you, if only to charge you more, for doing it!
Sorry, just the rebel coming out in me!
It is always right to question what is going on. It is always right to ask your GP to see what is going on with your lower abdominal pain. So go speak to him.
I think your anxiety is helping your niggles just a tad!
The key to diagnosis of insulinoma or others, is that you hypo when you fast!
If like me, you can go for ever without food without going hypo!
If you hypo, it is something other.
That's why I say it is more than likely not insulinoma!

Best wishes and really good you are having really good control.
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Thanks again for the replies. I think as @Winnie53 says, it would be a good idea to make a note of when I get the pains, what I've eaten and exactly where the pain is. It tends to wake me up in the night, so I'm not always fully with it!

I'm sure you're right @Lamont D, in that if my Endo thought further tests were necessary he would have ordered them. I've never tried fasting. The longest I go without food is up to 12 hours overnight. I know from my Libra results that as long as I eat sensibly, my bg stays pretty level all night. I'm too scared to try fasting for longer, as mornings are my most active time getting the kids up, fed, dressed and safely delivered to school and pre-school. One day I will try!

I guess I still find it hard to believe how quickly/suddenly the RH came on. Having two young children doesn't help, as I would like to be around as long as possible for them!
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Thanks again for the replies. I think as @Winnie53 says, it would be a good idea to make a note of when I get the pains, what I've eaten and exactly where the pain is. It tends to wake me up in the night, so I'm not always fully with it!

I'm sure you're right @Lamont D, in that if my Endo thought further tests were necessary he would have ordered them. I've never tried fasting. The longest I go without food is up to 12 hours overnight. I know from my Libra results that as long as I eat sensibly, my bg stays pretty level all night. I'm too scared to try fasting for longer, as mornings are my most active time getting the kids up, fed, dressed and safely delivered to school and pre-school. One day I will try!

I guess I still find it hard to believe how quickly/suddenly the RH came on. Having two young children doesn't help, as I would like to be around as long as possible for them!

I did Say your anxiety is coming through your post!
I'm sure that you are just going through one of them episodes and second guessing yourself.
You say that, you don't fast, only overnight, has your monitor shown any lows through the period overnight?
Well, going overnight can be considered as intermittent fasting!
As you know, I work and travel all the time, and I find that being busy helps with my fasting, you don't have to eat all the time, because of RH, only if you are eating too many carbs. I've found that I can eat a very low carb meal and not eat for over twelve hours, without any effect.
I have a blog called the idiot diet. Have a look, on my blog page.
And like me, you are going to be around for a long time yet!
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
I did Say your anxiety is coming through your post!
I'm sure that you are just going through one of them episodes and second guessing yourself.
You say that, you don't fast, only overnight, has your monitor shown any lows through the period overnight?
Well, going overnight can be considered as intermittent fasting!
As you know, I work and travel all the time, and I find that being busy helps with my fasting, you don't have to eat all the time, because of RH, only if you are eating too many carbs. I've found that I can eat a very low carb meal and not eat for over twelve hours, without any effect.
I have a blog called the idiot diet. Have a look, on my blog page.
And like me, you are going to be around for a long time yet!

Haha, very perceptive of you Sir! I may be a little anxious at the moment. No idea why really, as apart from the occasional stomach problems I'm feeling good.

My sensor has shown the occasional low over night, but I suspect it's because I've lay on it! I certainly don't wake up feeling like I've had a hypo. Before diagnoses and pre low carb days, I would wake in the night drenched in sweat (yeah I know, very attractive!), heart racing and feeling dizzy. I would always have a headache in the morning too. Those episodes ended a long time ago now and hopefully never to return!

I'll take a look at your blog. Thanks again!
 
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Winnie53

BANNED
Messages
2,374
Type of diabetes
Type 2
Treatment type
Diet only
@Winnie53 have you ruled out any ovary issues? Ovarian cysts can put a lot of pressure on the lower bowels. There isn't much space down there! It happened to me over 40 years ago. My pain was where you describe yours and was not diagnosed for ages

That's a possibility too. Something similar happened to my mother. She and her boyfriend, both in their mid-70's at the time, were out bicycling when my mother began having excruciating pain. They went to the emergency room and it was discovered that she had an ovarian cyst or tumor, not sure which, the size of a grapefruit which was promptly removed. The sudden pain was from it shifting in position.

For now I'm monitoring. My brief stay in the emergency room for vertigo in April was $4,200, of that $1,000 for lab tests. My cost will be $2,500. And that's on top of $550 a month in health insurance premiums. :banghead:

@Kaz261 as a person who has lived with lifelong symptoms of anxiety, we learn to "distract and ignore ourselves" to get things done, but that can be problematic. Never hurts to have a discussion with your doctor, and if he/she always makes you feel like "nothing's wrong", you can always find another doctor. Hope this problem goes away or you find out what's causing it. :)
 
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Ayed447_

Well-Known Member
Messages
69
Type of diabetes
Don't have diabetes
in 2015 one day I waked up and my BG was 2.7 I went to the hospital and the doctor issue for my GTT and in the 2nd hr my Bg go down to 3.6

He said to me thats normal rang don't worry!!!!!!!

I seek another doctor and he took many test like CT scan, liver, kidney and insulin also mixed meal test !
He also said its normal!?

Then I return to high carbs and begin resistance exercise for 2 years I was in good condition

Until last 6 months I stoped exercising and my intake of carbs was higher also had stress all the time working 12hrs

In last February RH reunited .. went to the hospital they preform another GTT and fasting insulin test

My fasting insulin was in normal rang

Guess what they said its normal!?


Also, I have my unanswered questions
Like I noticed that before RH I had abdominal pain
Also I think that stress had a big role