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Insulinoma and RH

Hi @Kenyaraye and welcome to the forums.

My limited understanding of insulinoma is that it is treatable (remove the (benign) tumours) and not the same as RH.

What has your endo said?

And RH happens as a result of carb intake so cutting carbs fixes it.

Tagging @Lamont D who knows much more than me.
 
Kenyaraye said:
Hi can anyone tell me how they manage nocturnal hypos - and then stay stable for longer than 30 mins... I am really really struggling I'm a single Mum with 3 kids and not much help from Endo
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Hi and welcome to the forum @Kenyaraye.
As @EllieM has said that the treatment is to remove the tumour which causes the excess insulin issues.
It is a completely different condition than RH, where food intolerance is the cause.

Your endo should have referred you and informed you of next steps, and any questions you may have. Get in touch with your GP about this and see what they say.

In the meantime keep some quick acting food for treating the hypos.
Let us know how you get on.

Best wishes.
 
Hi,

Thank you for the reply. Yes I hope it is treatable. I was diagnosed with a benign oesophagus tumor in Feb but had no help...Endo said it was Gastro that needed to step in which lead to a long wait....July I was at a meeting with the Hospital when they told me there was a second tumor on Pancreas. I've had no treatment or help, I wasn't refered to a NET centre as Hospital didn't follow their own guidelines. Now waiting to see a Professor in Manchester. I had a Mri in October but it was done on my bowels not Pancreas!

I'm mostly on a liquid diet (by Dietician) so carb intake isn't huge, RH seems to be spontaneous not really through food as such which is really concerning. I'm starving but food is like the enemy, anything I eat makes me really ill. Nocturnal hypos are well and truly draining me can be at least 2- 3 a day too. I am so so tired.

Endo kept saying we need to chase Gastro...Gastro this...Gastro that...but there was no Gastro at the hospital from March to August! Then he done Mri in wrong place! I just want to get some of this under control I've been on this rollercoaster so long. Sugar levels are really erratic at the moment, I am waiting for a Emergency Mdt but seems to be taking forever.
 
Kenyaraye said:
Hi,

Thank you for the reply. Yes I hope it is treatable. I was diagnosed with a benign oesophagus tumor in Feb but had no help...Endo said it was Gastro that needed to step in which lead to a long wait....July I was at a meeting with the Hospital when they told me there was a second tumor on Pancreas. I've had no treatment or help, I wasn't refered to a NET centre as Hospital didn't follow their own guidelines. Now waiting to see a Professor in Manchester. I had a Mri in October but it was done on my bowels not Pancreas!

I'm mostly on a liquid diet (by Dietician) so carb intake isn't huge, RH seems to be spontaneous not really through food as such which is really concerning. I'm starving but food is like the enemy, anything I eat makes me really ill. Nocturnal hypos are well and truly draining me can be at least 2- 3 a day too. I am so so tired.

Endo kept saying we need to chase Gastro...Gastro this...Gastro that...but there was no Gastro at the hospital from March to August! Then he done Mri in wrong place! I just want to get some of this under control I've been on this rollercoaster so long. Sugar levels are really erratic at the moment, I am waiting for a Emergency Mdt but seems to be taking forever.
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The way I understand it, and I can see what you are saying. It does resemble RH in some of the symptoms but I think that any food not just carbs, will make you ill.

I am tagging @EllieM to see if I can PM you about something you mentioned. Usually newbies have to post somewhere around ten posts to get the full benefit of the pms and other things.

If not I will explain my condition, on the open forum and as much detail without issues.
 
Lamont D said:
The way I understand it, and I can see what you are saying. It does resemble RH in some of the symptoms but I think that any food not just carbs, will make you ill.

I am tagging @EllieM to see if I can PM you about something you mentioned. Usually newbies have to post somewhere around ten posts to get the full benefit of the pms and other things.

If not I will explain my condition, on the open forum and as much detail without issues.
Click to expand...
Yes it really is everything, no control at moment whatsever. If you could that would be great thank you
 
Reactive Hypoglycaemia is a condition that is non diabetic, has normal blood glucose levels until you eat carbs. Then because of a weak first phase insulin response, my blood glucose rises into higher than normal levels for the carb content of that meal. Because of the high levels of glucose, my brain tells my pancreas to produce more insulin, called an overshoot. This drives my blood glucose levels down into Hypoglycaemia.
If I don't eat carbs, this does not happen.
I am more healthy without carbs.
I use a keto diet tailored to my likes, preferences, tastes, needs.
I have not had a hypo, unless there was a good reason and cause for it.
My body is fueled by ketones not carbs.
My health improvement is because of being in continuous normal levels.

There are certain ingredients in modern foods that need to be avoided.
I have an intolerance to lactose all my life. I have developed an intolerance to grains, rice, pasta, starchy carbs, certain fruits, plus the likes of oils, such as palm oil, vegetable oil, sunflower oil.
I use only fresh food cooked to how I like it. No production or industrial sugars, ingredients, no pre prepared food. Only if I know what is in it, will it go past my lips.
It is not easy. It is healthy for me.

Hope that helps.
 
MrsA2 said:
PALS at the hospital and start raising formal complaints NOW!
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Hi

Yes I did that the end of March (and again recently) when nothing was moving after this first tumor...I was asked to give them 2 weeks for a treatment plan in Feb then they threw in a second one...the whole thing is a mess, PALS are trying to arrange another emergency meeting Endo and Gastro are not saying much...even to Management so far, alot of errors along the way from Gastro and Endo. A Manager was at the meeting too which makes it all very odd. I'm just praying someone helps properly soon because it's been 10 months since 1st tumor and at the meeting in July they told me of the second but they had no idea what one came first. It's been a nightmare, but complaints are in with PALS and the Healthboard.
 
Kenyaraye said:
Hi

Yes I did that the end of March (and again recently) when nothing was moving after this first tumor...I was asked to give them 2 weeks for a treatment plan in Feb then they threw in a second one...the whole thing is a mess, PALS are trying to arrange another emergency meeting Endo and Gastro are not saying much...even to Management so far, alot of errors along the way from Gastro and Endo. A Manager was at the meeting too which makes it all very odd. I'm just praying someone helps properly soon because it's been 10 months since 1st tumor and at the meeting in July they told me of the second but they had no idea what one came first. It's been a nightmare, but complaints are in with PALS and the Healthboard.
Click to expand...
I'd try to go higher, ask for their managers details. If not write to Chief exec of hospital. Say you've already discussed it on a public forum, but will have to do more. Say you'll involve your MP (and do it).
Put your complaint on the hospital website, there will be one somewhere. Also there will be a feedback route or form. I had excellent results from using this once as apparently they all went to the Ceo first and it turned out those below him had been economical with the truth about their backlog times

Sadly these days, the meek and quiet get nowt, you have be louder and more assertive.
 
Lamont D said:
Reactive Hypoglycaemia is a condition that is non diabetic, has normal blood glucose levels until you eat carbs. Then because of a weak first phase insulin response, my blood glucose rises into higher than normal levels for the carb content of that meal. Because of the high levels of glucose, my brain tells my pancreas to produce more insulin, called an overshoot. This drives my blood glucose levels down into Hypoglycaemia.
If I don't eat carbs, this does not happen.
I am more healthy without carbs.
I use a keto diet tailored to my likes, preferences, tastes, needs.
I have not had a hypo, unless there was a good reason and cause for it.
My body is fueled by ketones not carbs.
My health improvement is because of being in continuous normal levels.

There are certain ingredients in modern foods that need to be avoided.
I have an intolerance to lactose all my life. I have developed an intolerance to grains, rice, pasta, starchy carbs, certain fruits, plus the likes of oils, such as palm oil, vegetable oil, sunflower oil.
I use only fresh food cooked to how I like it. No production or industrial sugars, ingredients, no pre prepared food. Only if I know what is in it, will it go past my lips.
It is not easy. It is healthy for me.

Hope that helps.
Click to expand...
Thank you for the tips, I'm sure they may help if I was able to eat much. I was diagnosed t2 nearly 2 years ago I'd been ill for a long time and put on Acarbose but they made hypos worse (and I can't eat 3 meals a day) so now I'm just trying to stay awake and functioning whilst the Hospital/Management sort things out. Gp/dietician have both said to try and still eat whatever I can for now as changing diet hasn't worked. I am starving but mainly on Altraplan and the little bits I can manage to eat and keep down now. I feel like crying and really guilty when I do eat because I don't have any control at the moment with it. But thanks for the suggestions I did try doing the same (tried!) and I do think diet is key but my body is just going haywire, I'm so drained.
MrsA2 said:
I'd try to go higher, ask for their managers details. If not write to Chief exec of hospital. Say you've already discussed it on a public forum, but will have to do more. Say you'll involve your MP (and do it).
Put your complaint on the hospital website, there will be one somewhere. Also there will be a feedback route or form. I had excellent results from using this once as apparently they all went to the Ceo first and it turned out those below him had been economical with the truth about their backlog times

Sadly these days, the meek and quiet get nowt, you have be louder and more assertive.
Click to expand...
Yes I've done nearly all of the above! It was my MP who helped pull the MDT together in July as everything was so slow, but didn't see Gastro untill August then he asked for Fit test - had 2 both were fine and then waited for MRI which was October but on my bowels woth no explanation. So it's now with Senior Management and couldn't go any higher. Healthboard are involved and my Mp trying to get some answers. The main Manager of hospital has now left so the hospital and the way it is run at the moment speaks volumes. I'm hoping to find out more tomorrow. They left me (fully aware) with uncontrolled seizures and hypos so that was when my Mp and a Solicitor were brought in...and then alot of promises with a load of errors straight away again. As of this Tuesday the Gastro secretary said they are not allowed to comment as matter had been escalated. Pals have pushed alot for answers but it looks as though Hospital are more concerned about saving themselves/what's left of their reputation than my life. Should know more tomorrow. The thing has been so complicated I wouldn't wish this on anyone. If I had of took a meek back seat I wouldn't be here now that's for sure. I've got 3 kids I need to get better for I just hope there's no more suprises and I can get on the right path. They are very keen to keep this quiet so not sure what to expect next but they know I'm considering agreeing for my Mp to speak to the Papers etc...I'm too drained for any more dramas right now I just need help.
 
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