Any help would be appreciated

Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
In the case of untreated insulinoma -- not that I say that Claire has one -- I would have thought the reason to eat carbs and to do so more or less continuously is to balance the constant output of unwanted insulin in order not to pass out from low blood sugar. So yes,in order to ensure that the brain has enough glucose to function it can be vital to stuff yourself with carbs. Going low carb would be a bad choice until the cause of the excess amount of insulin is dealt with.And remember that I am a convinced low carber since many years!
In the case of most metabolic conditions, there is an imbalance in one or more of your hormonal response, most to food. Which you know by personal experience.
If you have an imbalance in insulin like I do and other pancreatic problems that have an excess of insulin that causes the hypos, then trying to lessen the trigger to constantly produce the insulin through diet, then meds, would counteract the need for excessive carbs, to stop the hypos.
With reactive hypoglycaemia, the advice is set in stone to eat regular carbs to counter the hypos from occurring. Sensible advice, but as others have found it is unnecessary to eat as often, as long as you don't trigger the insulin response. Because as we have found, if we don't go high, which we do if eating too much carb, hyper, too quickly. We don't go hypo. Our first insulin response is enough, so we don't need a second insulin response to dispose of the glucose and the balance is corrected, because the hyperinsulinaemia has gone, less symptoms, better health, better energy.
The need to eat carbs is unnecessary and only exacerbating the fluctuations in blood glucose levels. Which creates the horrible symptoms and rollercoaster hypos and hypers.
It is certainly working for myself and others, even some after very low carb and intermittent fasting have been able to eat a certain amount of carbs and as long as they are careful can live healthier just above ketosis, because the insulin resistance has improved so much that the first response is enough, no need for a second, the awareness of going out of control and how they get symptoms to warn them. The high circulating insulin levels have decreased, the blood glucose levels are in or around normal levels. As normal is where you should be whilst fasting or before and after meals. As in diet only T2s, carbs are unnecessary.
Our livers should avert most hypos by providing enough glucose for our brain function. Especially after many weeks after getting control.
The longer the control, the better you can cope with the lifestyle.
I certainly don't want to go back to those days when my bloods would be normal before breakfast but be in double figures after breakfast, then before lunch I would be below three mmols, then high again after lunch, then low before dinner, then high in evening and low throughout the night, until normalisation before breakfast. No sleep as such, feeling absolutely dreadful, it wasn't fun! The only good thing was I couldn't remember much, as this was one of the symptoms, the anxiety, the hunger and thirst!

I know that insulinoma is a possibility, but because my endocrinologist thought it was more likely that it was the cause of my symptoms, the question about how to treat it before definite diagnosis was to lower my carbs intake but eat carbs with every meal, and eat regularly, stay away from alcohol. The usual stuff!

Luckily enough it wasn't insulinoma but RH. But the dietary advice never changed.
The tests to confirm diagnosis are many and they are designed to eliminate other conditions than actual confirmation of diagnosis.

It is interesting!
 

Totto

Well-Known Member
Messages
2,831
Type of diabetes
Type 2
Treatment type
Diet only
If you have an imbalance in insulin like I do and other pancreatic problems that have an excess of insulin that causes the hypos, then trying to lessen the trigger to constantly produce the insulin through diet, then meds, would counteract the need for excessive carbs, to stop the hypos.

I will answer you one last time. In the case of insulinomas what food you eat doesn't affect the insulin output much. The nature of insulinomas is to constantly secrete insulin. This is is what they do. The clue is in the name. In order to balance the insulin produced eating carbs is a good idea or your BG can fall dangerously low. This is not a reactive response to carbs.

I do understand how difficult things have been for you and that low carbing works like a miracle for you and that is excellent. I do however think your insistent advice to OP to lower her carb intake is dangerous, until insulinoma has been ruled out.
 

Resurgam

Expert
Messages
9,850
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
I suggest that you contact the hospital and let them know that your doctor will not prescribe the strips for you - at the very least it will alert them to the fact that their advice is being ignored.
 

Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
I have contacted the hospital and they said they will sort :)

My GP took some blood tests yesterday morning.. Finally they listen (although still won't give me the testing stuff). Anyway I missed a couple of calls from the hospital during the night and I finally woke up at 1am to their call.

The doctor said she had my results and it wasn't good news. She asked how I was feeling and I advised I am ok so long as I snack. She advised I need to see a doctor as soon as possible and that my cortisol levels are half what they should be. I asked what can cause this but she didn't want to discuss it over the phone but said she believes they have my diagnosis!

No sleep for me like!
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Goodness! A 1am call must have been a shock!
Hope you get to see that doc ASAP, and please let us know how it goes?
Have a huge hug!!!
 
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Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
Well back from doctors and they have brought my fasting glucose forward. But said all my bloods point to Addison's disease. Not 100% sure what that means coz I had a bad hypo in there so he had to give me glucose so can't remember most of what he said :/

Hopefully find out more at glucose test!
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
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Addisons is to do with the adrenal glands.
Here is a v quick link (which you have probably already seen!)
https://www.nhs.uk/conditions/addisons-disease/

When I was being investigated for what turned out to be a prolactinoma, they investigated me for Addison's as part of the elimination process.

The problem with all these endocrine disorders is that if one hormone or group of hormones is out of wack, it can have knock on effects on the others, and can result in a right confusion of symptoms which they have to weed out to get to the root of the problem.

Glad they are making steps towards a proper diagnosis though!

When is your Fasting Test?
 

Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
15th. :) dreading it like. They said normally fast from midnight before I go in but as I'm struggling to go without food for longer than an hour they said not to do it as will be dangerous.

I haven't read anything about it yet so will look at the link thanks :) my head still banging off the hypo. :( suppose if I'm going to have a bad one, in a doctors office is a good place to have it!

Yeah it's a mine field! Pleased, in a way, that after all this time they believe they've found the culprit!

Hope you're managing with your illness.
 
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Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
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I am great now, thanks.
Diagnosis was... um... nearly 20 years ago now, and they put me on a drug to inhibit the production of excess prolactin. They picked a dose that gave me higher than 'normal' prolactin levels, but low enough that I don't have too many symptoms, and the dose is low enough that I don't get any side effects from the drug. Been on the same dose since diagnosis, except for a couple of occasions when some bright spark registrar decided to see what happens if we mess around, or my doctor's surgery decided they knew better. lol.

So yes, a long term happy solution for me.

And I REALLY hope that you will get the same :)

I know that we have some members with Addison's, but I cannot remember any of their names. You could try doing a forum search on the subject, and see who was involved in the threads.
 
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Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
So glad you are getting finally sorted.

Make sure you give us an account of your fasting test.

Best wishes.
 

Totto

Well-Known Member
Messages
2,831
Type of diabetes
Type 2
Treatment type
Diet only
15th. :) dreading it like. They said normally fast from midnight before I go in but as I'm struggling to go without food for longer than an hour they said not to do it as will be dangerous.

I haven't read anything about it yet so will look at the link thanks :) my head still banging off the hypo. :( suppose if I'm going to have a bad one, in a doctors office is a good place to have it!

Yeah it's a mine field! Pleased, in a way, that after all this time they believe they've found the culprit!

Hope you're managing with your illness.
You know what? If they suspect Addison's I think you may not need to go through the ordeal of a 72 h fasting test.
I think you should go to hospital next time you faint or feel ill. Low glucose is dangerous, low cortisol is even more serious. A young girl, a neighbour of mine, died a couple of years ago from undiagnosed Addison's disease. She had been put on Leovthyroixine without having her cortisol checked and became very ill. As we are on an island with a very small hospital we usually only have an endocrinologist in place every third week or so.

Have you got anyone living with you or are you on your own?
 

Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Well I never!
I never knew that Hypoglycaemia is a symptom of Addison's disease!

You learn something new every day!
 

Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
Yeah apparently it is along with the stomach pains I've been getting, dizziness, headaches etc. My cortisol was meant to be around 100 but was 50. :/

The doctor told me today that if I feel too many hypos or pass out etc an ambulance should be called immediately.

Id never even heard of it before now.

Awful about that poor little girl. Didn't quite realise it was as bad as that!

They said something about being on steroids for the rest of my life. I was struggling to concentrate on what he was saying. Can't focus mid hypo!
 

Totto

Well-Known Member
Messages
2,831
Type of diabetes
Type 2
Treatment type
Diet only
It can be difficult to call an ambulance when you've passed out. Are you on your own or is there someone with you to help you?

Personally I think you should be in hospital, getting treatment or at least a few doses of cortisone to tide you over the weekend.
 

Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
Now you say it I'm surprised too. The way he was talking I had to have ambulances on standby! Think I will call them tomorrow and ask for some. They did, however, give me test strips!
 

Bluetit1802

Legend
Messages
25,216
Type of diabetes
Type 2 (in remission!)
Treatment type
Diet only
My friend has Addisons. She has been diagnosed many years now. When she was poorly before diagnosis she was really very, very poorly. She thinks she nearly died and it took the medics a long time to diagnose her. She was in hospital quite a long time. Once they did diagnose her she was given the correct treatment and has been well and active ever since, but is on steroids for life.
 

Claireyt

Member
Messages
12
Type of diabetes
Don't have diabetes
Sorry haven't been on for a while. Been in and out of hospital! Still no idea what's going on! :(

Had the blood test again for addisons and now they don't think it is that!

Had my 72 hour fasting which was horrific to say the least! I was already 3.9 when I arrived at the hospital and made it down to 2.6 within a day but they needed it to 2.5 to do the test but I was so poorly they couldn't leave me. They now think it could be an insulinoma and my body didn't seem to be able to maintain decent levels. Been told I can only drive short distances now so scared at this rate I'm going to lose my licence because of the hypos! Just want answers :(
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
that is hellish.

and the driving restriction must be just another aggro to add to many others. :(

have they given youant timeframe for tackling the insulinoma? tests and treatment? your current situation must be well nigh unbearable.