Hello! Newbie help!

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hello, thanks....trying to locate sticky but Will Hunt it down
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi, just one thought I have is that you didn't actually hypo during your GTT? When I had mine, I had a very fast spike (up to 13.5 the first time) and then hypo'd as a result (in my case I dropped to 2.7 around the 3 hour mark). I can't comment on the c-peptide as mine was never checked. I know it's linked with insulin but don't know what is normal or high.

My symptoms started quite suddenly too, if that's of any comfort. March last year I started getting symptoms after eating carbs, which corresponded with high blood sugars. My GP did a hba1c test which came back normal. He referred me to an Endo who did a standard GTT which put me in the diabetic range after two hours. I also hypo'd in the car on the way home from hospital. He then repeated the test several weeks later after a period of increased carb intake. The second test put me in the pre-diabetic range after 2 hours but I hypo'd after 3 hours confirming RH.

I only started to get RH symptoms after I was wrongly diagnosed with diabetes though around August last year. It's been a sharp learning curve. I'm making progress but I don't think we will ever completely eliminate the symptoms.
 
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Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi,

No i didnt hypo but levels when down because coming dramaticallY up. Its a relief to hear that things came on suddenly dor you too. The official dIahnosis is hyperinsulima for me. But i Seem to feel very off when blood sugar is between 4.0-3.7. Im guéssing everyone different .
I think i ll feel more relaxed once i Have Seen the pancreatic specialist. I was 5.7 before eating yesterday And then when down to 4.6 after eating!!!

I need to relax because stress is making this worse.

Thanks for sharing your expérience with me

Alicki
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi,

No i didnt hypo but levels when down because coming dramaticallY up. Its a relief to hear that things came on suddenly dor you too. The official dIahnosis is hyperinsulima for me. But i Seem to feel very off when blood sugar is between 4.0-3.7. Im guéssing everyone different .
I think i ll feel more relaxed once i Have Seen the pancreatic specialist. I was 5.7 before eating yesterday And then when down to 4.6 after eating!!!

I need to relax because stress is making this worse.

Thanks for sharing your expérience with me

Alicki
I feel odd when my levels are in the 4's. Can feel very light headed and anxious at these levels. I'm suffering with the stomach bug from hell at the minute (first real illness since RH diagnosis) and my levels have been permanently in the 4's. Last night I was 5 before eating and dropped to 4.5 an hour after. So the drop happens to me occasionally too. Have you been given an explanation for this?
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
HI,

Yes, when i get food down, my body pumps out too Much insulin, bringing the glucose down. Im not sure about the spike back up when i Had the GTT test (from 4.2 to 7.3) but from what i ve read this has Something to do with the liver bumping back glucose.

The hyperinsulima seems to be creating problems And i Have a lot of nausea when i eat sugarY things

Hope the specialist Will explain this better
Thanks
Alicki
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi,

Are you oberweight? Any chance of too Much insulin being pumped out when Ou eat?

Could explain the 4s
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Just done a little research and if you have all the symptoms and problems you are encountering, then the treatment is the same, low carb, an increase in mild exercise and eating little and often, making certain that your bloods remain close to as near normal levels as possible, sustainable over a period of time.
Thirst is a main symptom of hyperinsulinemism.

Your description of how your bloods reacts after eating is how it is described by the information I read. All of the conditions that all of us suffer are part of metabolic syndrome conditions. Blood glucose disorders are symptomatic and associated with too much insulin in the blood.
Whether it be RH, hyperinsulineminoma, insulinoma or described as hypoglycaemia.
The recommendation to a change in diet is paramount. Low carb is preferable to meds that might not work!

Hope this helps.
 

Kaz261

Well-Known Member
Messages
413
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi,

Are you oberweight? Any chance of too Much insulin being pumped out when Ou eat?

Could explain the 4s
I'm the opposite. Six months ago I was close to being under weight. I've put a little back on over the last couple of months which is good. My Endo never tested my insulin levels so I have no way of knowing I'm afraid.

Meant to say, try not to get too anxious as it undoubtedly makes matters worse. Easier said than done though eh?!!

Take care
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
From what I can see (this is purely based on personal experience and people who have turned up on the forum), people seem to start RH at slim or normal weight, and only gain after a period of excess insulin production.

For me, I had RH for approx 10 years before the weight gain really started, but it must vary hugely.

Of course, no generalisation stands up to close individual examination! lol.

The best way to avoid the weight gain is to avoid eating foods that require insulin (carbs). This is not just sugary foods, it is also bread, potatoes, pasta, rice, etc. If we can keep our insulin production to a minimum, then the insulin won't be functioning to tuck the glucose into the cells.
 
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Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
we all (RHers) have excess insulin. Comes with the territory.

our bodies pump it out in response to carbs, but (for a variety of reasons, we pump out too much). As soon as our bodies are exposed to excessive amounts of insulin, we start to develop insulin resistance (usually long before we get any symptoms), and we can be like that for years, until the rest of the system starts to break down - hyperinsulinemia is a common feature of RHers, and T2s, because they both have insulin resistance.

There is a great video on You Tube, think it is by the Fat Emperor, interviewing Kraft 'The Father of the Insulin Assay' which explains the whole process, which can go on for decades before the symptoms start.

great pity they don't seem to test insulin production on the NHS, to help with diagnosis, they just look at glucose levels. Cheaper I suppose. Plus the fact that most NHS staff have never even heard of RH. :(
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hello,

May i Have the links? Thanks a million. I took my blood two past post lunch -8.0!
No nausea despite big lunch to test theory. It seems that Im Half pre-diabetes, Half goodness know what!

Were you oberweight?
Thanks for all your support!


QUOTE="nosher8355, post: 1131945, member: 85785"]Just done a little research and if you have all the symptoms and problems you are encountering, then the treatment is the same, low carb, an increase in mild exercise and eating little and often, making certain that your bloods remain close to as near normal levels as possible, sustainable over a period of time.
Thirst is a main symptom of hyperinsulinemism.

Your description of how your bloods reacts after eating is how it is described by the information I read. All of the conditions that all of us suffer are part of metabolic syndrome conditions. Blood glucose disorders are symptomatic and associated with too much insulin in the blood.
Whether it be RH, hyperinsulineminoma, insulinoma or described as hypoglycaemia.
The recommendation to a change in diet is paramount. Low carb is preferable to meds that might not work!

Hope this helps.[/QUOTE]
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
we all (RHers) have excess insulin. Comes with the territory.

our bodies pump it out in response to carbs, but (for a variety of reasons, we pump out too much). As soon as our bodies are exposed to excessive amounts of insulin, we start to develop insulin resistance (usually long before we get any symptoms), and we can be like that for years, until the rest of the system starts to break down - hyperinsulinemia is a common feature of RHers, and T2s, because they both have insulin resistance.

There is a great video on You Tube, think it is by the Fat Emperor, interviewing Kraft 'The Father of the Insulin Assay' which explains the whole process, which can go on for decades before the symptoms start.

great pity they don't seem to test insulin production on the NHS, to help with diagnosis, they just look at glucose levels. Cheaper I suppose. Plus the fact that most NHS staff have never even heard of RH. :(

Hello,

Will Check out video. Thanks to all of your for helping me through this

Best
Alicki
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
I feel less lost....And panicked.
If this can go on for years before symptoms arise, that makes a lot of sense in my world.

I suffered a year before They could pin-point a diagnosis for my sleep apnea. I lost job, home, friends, hence why i feel so desperate but better with your advice

I am grateful!
Alicki
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
I feel less lost....And panicked.
If this can go on for years before symptoms arise, that makes a lot of sense in my world.

I suffered a year before They could pin-point a diagnosis for my sleep apnea. I lost job, home, friends, hence why i feel so desperate but better with your advice

I am grateful!
Alicki

Well, we all go through the lost phase. And it really doesn't help when docs and nurses and people go around telling us how rare and special we are - with an implication that this means treatment is difficult. IT REALLY ISN'T!!!

Nearly every case of RH seems to respond really well to dietary changes - although NHS staff are usually so ignorant about diet that they do not know this, and therefore do not suggest it. :banghead:

Just hang on to these thoughts:
- I developed RH aged 4, and I am now 49 and I am thriving. So it is hardly a death sentence! :)
- nosher felt like death, for years, and now feels better than he has for decades
- once you get your head round it, and it responds to the dietary changes, you can be virtually symptom free (like nosher and I)
- there are thousands and thousands and thousands of people walking around with hyperinsulinaemia all over the world - and most of them don't know it. It isn't rare, or special, or traumatic - it is just a consequence of eating more carbohydrate than your body can cope with. Watch that video and you will see what I mean.
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Thanks a million. Im still At 8.2, 3 hours after eating so results are going all over the place. Sometimes its réactive, Sometimes not- this is si confusing!!!!
 

DanteNXS

Active Member
Messages
42
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Dislikes
Health issues, uneducated doctors, and reality TV
we all (RHers) have excess insulin. Comes with the territory.

our bodies pump it out in response to carbs, but (for a variety of reasons, we pump out too much). As soon as our bodies are exposed to excessive amounts of insulin, we start to develop insulin resistance (usually long before we get any symptoms), and we can be like that for years, until the rest of the system starts to break down - hyperinsulinemia is a common feature of RHers, and T2s, because they both have insulin resistance.

There is a great video on You Tube, think it is by the Fat Emperor, interviewing Kraft 'The Father of the Insulin Assay' which explains the whole process, which can go on for decades before the symptoms start.

great pity they don't seem to test insulin production on the NHS, to help with diagnosis, they just look at glucose levels. Cheaper I suppose. Plus the fact that most NHS staff have never even heard of RH. :(

Excellent video Brunneria, thank you.

So according to Dr. Kraft's testing parameters, I would be considered a pattern 2, which is diabetic. WOW!!!!! That is both scary and intriguing.

Note: I bought a BG monitor yesterday and started testing this morning. I am not able to fast throughout the night, as the body shakes wake me up and eat a small low carb snack. But my morning BG was 100, 30 minutes after eating it was 100, and then 30 minutes after that is was 104, then 104, and 106. Is this normal, or maybe a defective monitor? I had to take the BG test a few times, as I think I was doing it wrong, and the readings were very low, probably due to being new at it.
 
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Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
@DanteNXS

Glad you liked the vid. I found it explained a LOT. :)

I think you will find that (from memory) normal morning readings are anywhere from the 3s up to around 5.5 mmol/l
That is around 54 up to 99 ish. (just multiply our figs by 18 or so to get your figs)

I think that UK and US diagnostic practices have slightly different levels at which they diagnose pre Diabetic and T2 (and as you already know, Kraft disagrees with them! :) ) but don't worry about those levels...

Most of the guidelines are aimed at T2s and T1s, who struggle to get anywhere near 'normal'.

Normal non diabetic-spectrum blood glucose levels range from the 3s to the 5s usually, and can rise higher after food. There is a lot of debate on what is 'normal' mainly because not many people bother to research it! lol.

And low carb snacks and meals really shouldn't have much impact on your bg.

Have you seen the www.bloodsugar101.com website yet? Lots of interesting info on there on the transition from normo-glycaemia to glucose intolerance and then through to diabetes. Well worth a read. :) In fact, the whole site is fascinating.
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Thanks a million. Im still At 8.2, 3 hours after eating so results are going all over the place. Sometimes its réactive, Sometimes not- this is si confusing!!!!

You need to be recording exactly what conditions (food, stress, activity) gave you what readings. It is a pain, but if you keep meticulous records now, you will quickly find patterns emerging.

For instance, wheat and other grains give me far greater reactions than root veg or even sugar.

So my own diet is tailored to avoid grains, and allow the odd smidge of root veg. I can also eat 70% cocoa solid choc, in small quantities. Yes, it has sugar, but I tolerate that in small quantities. Oh yeah. :D
 

Alicki

Well-Known Member
Messages
298
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Great. My GP said i should nt Have bought monitor because she had them to give out for free! I will record everything starting tomorrow. Today needed to get referral to pancréatic specialist. It might be an overkill but GP agrees that it s best to not take chances. I lové m GP, she s the best! I lived in UK as a child but dont know what the national health is like now. Wasnt bad when i was a kid but GP pointed out to me today that tis hard to get proper testing done. (C-petitide and insulin- them only do minimum). Is that true?
 

Lamont D

Oracle
Messages
15,793
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I feel less lost....And panicked.
If this can go on for years before symptoms arise, that makes a lot of sense in my world.

I suffered a year before They could pin-point a diagnosis for my sleep apnea. I lost job, home, friends, hence why i feel so desperate but better with your advice

I am grateful!
Alicki

I've suffered sleep deprivation. Had all the tests for apnia, luckily for me, it wasn't.
It was the vivid dreams, and no I'm not making it up.
We have a thread on it. Sleep disruption is common to RH.
The vivid dreams are common to blood fluctuations.
What happens is you fall asleep, then go into REM sleep, then dream and because your levels are fluctuating it causes your sub conscious to be very active and you rarely go into the fourth and the most restorative stage of deep sleep.
This will affect you enormously. Lack of sleep, your brain fog worsens, the more anxious and so on. Fatigue, you don't sleep well. You don't get the restorative sleep, you are hungry, you eat more carbs, you create far too much insulin and you get as well as all the brain fug, you get the visceral fat increasing because of the excessive insulin.
Yes, it takes time to develop all the symptoms and get into what I like to call my ' hypo hell'! It was well over a decade for me and I'm still not sure where and when my insulin overproduction started, could be much longer than that!
The good thing is I've slept better since diagnosis and going into ketosis. I still have the odd adventure in dreamland. Some are worse than others.
I think about the time I had my sleep spina test, I really didn't know or cared wether I was in real life or in dreamland!