Insulinoma/reactive hypoglycemia

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mattski

mattski

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Relationship to Diabetes
Steroid Induced Diabetes
Hi, I'm new to the site. Just had 8 days in hospital where I've been undergoing tests for two different conditions, insulinoma and reactive hypoglycemia. Has anyone else been through either of these? Apparently an insulinoma affects around 4 people per million? I have steroid induced diabetes, diagnosed 18 months ago
 
Welcome to the forum @mattski

Reactive hypoglycaemia comes up on the forum more frequently than Insulinoma I think? Though we have a number of Type 3c’s whose diabetes came about through pancreatic surgery.

There are some recent threads here:


When do you anticipate your test results coming back? What sort of symptoms have you been having?
 
Hi, Thank you for your message and for the attached information, much appreciated.

So, my tests got rather messed up, I did something called Whipple's triad Which was insulin, proinsulin and c-peptides. I was fasted for 48 hours, bloods taken every 6 hours. I went in during a strike and had skeleton staff, at the end of the 48 hours, they informed me that the wrong bloolds had been taken, that protocol had not been followed, they then gave me a carb heavy meal and then repeated the whole process.

During the first test, my blood sugar levels were around 3.2, after loading me with carbs, during the second test, the lowest theygot were around 3.7
During my second test my ketones were at 2.9


The endocrinology nurse specialist has since been in touch to say that they think my second tests were sent off in the wrong tubes and that this can affect the readings. I was on a short stay ward for the 8 days where the staff were not very knowledgeable on diabetes and actually didn't even perform the fingerprint test correctly.

I am booked in to go back to hospital for the 4th October, if my blood sugars are 4.5 or above I'm going to have a mixed meal tolerance test, if they are 4.4 or below they are going to do another Whipple's triad but this time on the endocrinology ward and in much more controlled circumstances which will mean another 14 to 21 days after the test before I get the results back again.

My main symptoms are hypoglycemia (blood sugars as low as 2.1, sweating, dizziness, chest palpitations, shortness of breath, confusion and nausea)

Apologies for the length of this message, there's quite a lot to explain. Once again, many thanks for making contact.

Regards, Matt
 
What a mess up and what a frustration for you @mattski ! I hope everything goes a lot better in October.
 
Inka said:
What a mess up and what a frustration for you @mattski ! I hope everything goes a lot better in October.
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Thank you, I think one of the frustrations is that I've gone from 17 stone to my target weight of 12 stone since diagnosis of diabetes, avoiding carbs and sugar, healthy eating and exercise and now the weight is piling back on as the advice that's working on keeping the blood sugars above 4 is to carb load every meal and have sugar. I have other conditions that effect my heart/lungs and the weight loss has benefited my health tremendously so it feels counter productive to be ballooning up in size. My sugars were previously high and was really quite unaware of how unpleasant hypo's are.

The Dr's came in heavy with the insulinoma conversations, talking about surgery, chemotherapy and radiotherapy which was quite scary, as a father of 3, the impact on my children is the heaviest thing on my mind, however I'm trying to approach everything with a positive attitude and perspective.
Hopefully, after whichever tests they do on the 4th and followed by meeting the consultant on the 10th will provide some answers
 
Hypos can be very unpleasant. They can have emotional effects as well as physical ones. Do you have a Libre or other CGM to alert you to falling blood sugars?

It must all be a huge worry for you. I suppose looking positively, at least the doctors have a treatment plan if it does turn out to be an insulinoma. All this fuss with the tests must have added to the stress a lot. I really hope you get answers in October and that the solution to your problem isn’t too arduous.

Sending you my best wishes.
 
Hi @mattski The advice (from patients with reactive hypoglycaemia - in the 'red' forum) is that they control it by eating Keto/very low carb. This is because with RH the initial insulin response is very weak so carbs make them spike very high but the subsequent insulin response is strong and so they plummet from very high to very low in short order. Thus avoiding carbs means they can avoid both extremes. Though their doctors don't always agree with that treatment and instead preach the little and often style.
So I think you urgently need a correct diagnosis.
 
Good grief @mattski you have been through it and then some !! Can’t offer any advice as I have no and nor do I know of anybody who has gone through your particular experience but there will always be someone here to advise and support. Keep us updated please, wishing you only the best going forward
 
Inka said:
Hypos can be very unpleasant. They can have emotional effects as well as physical ones. Do you have a Libre or other CGM to alert you to falling blood sugars?

It must all be a huge worry for you. I suppose looking positively, at least the doctors have a treatment plan if it does turn out to be an insulinoma. All this fuss with the tests must have added to the stress a lot. I really hope you get answers in October and that the solution to your problem isn’t too arduous.

Sending you my best wishes.
Click to expand...
I don't have any CGM, I have pretty much begged for one as the alert would be so helpful but you'd think I was asking for gold rocking horse poop and hasn't got me anything other than disapproving looks, after coming out of hospital, I ended up back there as I'd dropped below 3 overnight. I'm generally a terrible sleeper so usually top myself up with a couple of biscuits during the night and an isotonic drink and jelly babies if I'm feeling rubbish.

Thank you, your kindness is greatly appreciated
 
EmmaL76 said:
Good grief @mattski you have been through it and then some !! Can’t offer any advice as I have no and nor do I know of anybody who has gone through your particular experience but there will always be someone here to advise and support. Keep us updated please, wishing you only the best going forward
Click to expand...
Thank you so much for your kind message, it really is appreciated. I guess it's better off happening to me as I'm quite resilient and although I allow myself a mini wobble, I pretty quickly have a word with myself and get my A game on, once again, Thank you for your kindness
 
ianf0ster said:
Hi @mattski The advice (from patients with reactive hypoglycaemia - in the 'red' forum) is that they control it by eating Keto/very low carb. This is because with RH the initial insulin response is very weak so carbs make them spike very high but the subsequent insulin response is strong and so they plummet from very high to very low in short order. Thus avoiding carbs means they can avoid both extremes. Though their doctors don't always agree with that treatment and instead preach the little and often style.
So I think you urgently need a correct diagnosis.
Click to expand...
Hi, Thank you for taking the time to message and for the information. I have said to endocrinology that personally, I don't think it is RH, just based off the fact that I've been on a very low carb diet for 18 months and I'm pretty strict with it because it's been so effective, also as the carbs I'm having currently since my last hospital visit have been helpful and the lowest I've been since carb loading is 4.4 but I'm certainly appreciative of the information you provided, I already feel more armed with knowledge ahead of the next hospital visit, once again, many thanks for taking the time to share the information, it's much appreciated
 
mattski said:
Thank you so much for your kind message, it really is appreciated. I guess it's better off happening to me as I'm quite resilient and although I allow myself a mini wobble, I pretty quickly have a word with myself and get my A game on, once again, Thank you for your kindness
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Well in my early days my diagnosis was not straightforward and I ended up having multiple tests for some pretty terrifying stuff. However unlike yourself I wobbled massively, so much that this forum had to scrape up my jelly bits and mould them back together. Now I’m hard nails lol
 
EmmaL76 said:
Well in my early days my diagnosis was not straightforward and I ended up having multiple tests for some pretty terrifying stuff. However unlike yourself I wobbled massively, so much that this forum had to scrape up my jelly bits and mould them back together. Now I’m hard nails lol
Click to expand...
I have a feeling that I'm going to share not being straight forward. I have a rare type of Asthma that affects 0.5% of asthmatics, hence the obscene amount of steroids leading to the steroid induced diabetes, it's also caused spinal stenosis, sleep apnoea, heart problems and a ton of other stuff. My GP has been brilliant regarding the possible insulinoma and has also made me laugh by telling me that medically I've always been an awkward git to treat with everything else and the first 18 months had been so smooth that I was just trying to lul him into a false sense of security lol.
So after your initial struggles, is everything now going smoothly?( if you don't mind me asking? )
As you're now hard nails, any chance you could stand over the next round of testing in hospital and intimate them into taking the right bloods and using the right tubes to send away? Lol
 
mattski said:
I have a feeling that I'm going to share not being straight forward. I have a rare type of Asthma that affects 0.5% of asthmatics, hence the obscene amount of steroids leading to the steroid induced diabetes, it's also caused spinal stenosis, sleep apnoea, heart problems and a ton of other stuff. My GP has been brilliant regarding the possible insulinoma and has also made me laugh by telling me that medically I've always been an awkward git to treat with everything else and the first 18 months had been so smooth that I was just trying to lul him into a false sense of security lol.
So after your initial struggles, is everything now going smoothly?( if you don't mind me asking? )
As you're now hard nails, any chance you could stand over the next round of testing in hospital and intimate them into taking the right bloods and using the right tubes to send away? Lol
Click to expand...
Well I’ve always been a one in a million type of gal.. but not in a good way. I have an impressive list of medical bits and bobs that have caused many a medic to say ooh how strange, and ooh you’re an odd one. For the most part… I do ok. Health anxiety under control, I even went for an echo the other day after a heart murmur was detected and I didn’t poop myself. That’s progress ! My Bloods are mostly in good range and after getting super skinny I’m back in a size 10 which is exactly where I want to be. I wouldn’t say things couldn’t be better because they defo could, but I’m working out again and sleeping after a long bout of insomnia. It’s hard when you’re not a box ticker, not every doctor you come across will have come across someone like you so you have to push and advocate for your own health. One of my daughters works on acute medicine ward, and sometimes she will phone me and say mum, we got this lady in bed 3 and she has this and that going on what do you think? I’m like who do you think I am? But have you checked their electrolytes :rofl: :rofl:
 
EmmaL76 said:
Well I’ve always been a one in a million type of gal.. but not in a good way. I have an impressive list of medical bits and bobs that have caused many a medic to say ooh how strange, and ooh you’re an odd one. For the most part… I do ok. Health anxiety under control, I even went for an echo the other day after a heart murmur was detected and I didn’t poop myself. That’s progress ! My Bloods are mostly in good range and after getting super skinny I’m back in a size 10 which is exactly where I want to be. I wouldn’t say things couldn’t be better because they defo could, but I’m working out again and sleeping after a long bout of insomnia. It’s hard when you’re not a box ticker, not every doctor you come across will have come across someone like you so you have to push and advocate for your own health. One of my daughters works on acute medicine ward, and sometimes she will phone me and say mum, we got this lady in bed 3 and she has this and that going on what do you think? I’m like who do you think I am? But have you checked their electrolytes :rofl: :rofl:
Click to expand...
So that really resonated with me, it really can be a full-time job trying to manage your health when you don't tick all the standard boxes. If your blood tests appear normal yet you are still symptomatic, you get looked at like you're crazy. Numbers don't always paint the most accurate picture but some doctors can't seem to get their heads around this cases that don't tick into the norm. I'm pleased to hear that some areas are improved for you, I guess it's just a bit of an ongoing battle isn't it.
I'm very lucky that I have a phenomenal GP who is so incredibly supportive and will quite often fight my corner as I don't present in the normal ways.
I think sometimes when you have multiple things going on it can make it quite tricky.
I have Central sereous retinopathy in both of my eyes, that can be caused by high steroid usage, hypertension, diabetes and I have all three, that's just an example of a health issue that has to be dealt with but there's always a confliction in what the cause is so I completely resonate with what you're saying about complications and not always fitting into standard boxes.

It's a really positive thing that you are able to take your experiences and talk to your daughter, it might be something you say that solves the puzzle for somebody else and that's a really nice thing to be able to do for somebody
 
mattski said:
So that really resonated with me, it really can be a full-time job trying to manage your health when you don't tick all the standard boxes. If your blood tests appear normal yet you are still symptomatic, you get looked at like you're crazy. Numbers don't always paint the most accurate picture but some doctors can't seem to get their heads around this cases that don't tick into the norm. I'm pleased to hear that some areas are improved for you, I guess it's just a bit of an ongoing battle isn't it.
I'm very lucky that I have a phenomenal GP who is so incredibly supportive and will quite often fight my corner as I don't present in the normal ways.
I think sometimes when you have multiple things going on it can make it quite tricky.
I have Central sereous retinopathy in both of my eyes, that can be caused by high steroid usage, hypertension, diabetes and I have all three, that's just an example of a health issue that has to be dealt with but there's always a confliction in what the cause is so I completely resonate with what you're saying about complications and not always fitting into standard boxes.

It's a really positive thing that you are able to take your experiences and talk to your daughter, it might be something you say that solves the puzzle for somebody else and that's a really nice thing to be able to do for somebody
Click to expand...
Such a bummer that you need the steroids but they seem to have contributed to a host of other issues. Amazing that you have such a great GP! That’s half the battle.
Will your eyes resolve or is it permanent? Hopefully not the latter as you have enough to deal with by the sounds of it. Sometimes when you hear folk say that they don’t feel 100% do you ever think, I’d happily take 50 lol
 
Yeah, they are responsible for a lot. During a bad spell, I'm on 8 steroids a day, 4 nebulisers, 16 puffs of fostair. That can go on for a bit, last bad spell was 10 months. As a brittle asthmatic, it's 2 defining features are large variations in peak flows, and resistance to medication so very hard to treat. On the volume I have, diabetes was almost a guarantee. My oldest 2 children were shocked that my naughty little pancreas is the cause of my current biggest issues, the lungs usually get that job.

The retinopathy is treatable with Lazer treatment, I missed my last eye screening due to being in hospital so not sure where it's at currently but as we don't know if it's the steroids or diabetes causing it, It'll be interesting to see what the score is.

I'm usually a glass half full kind of guy but there are certainly odd occasions where 50% would be a bonus lol
 
mattski said:
I don't have any CGM, I have pretty much begged for one as the alert would be so helpful but you'd think I was asking for gold rocking horse poop and hasn't got me anything other than disapproving looks, after coming out of hospital, I ended up back there as I'd dropped below 3 overnight. I'm generally a terrible sleeper so usually top myself up with a couple of biscuits during the night and an isotonic drink and jelly babies if I'm feeling rubbish.

Thank you, your kindness is greatly appreciated
Click to expand...

That’s pretty poor @mattski Even if they only gave you one short-term, you’d think they’d do it. The information from it would be useful to them too.

Have you thought about getting a Libre? They did (do?) have a free trial.
 
This is rough on you @mattski I wish we could help more. Hopefully you will stick around and we will do our best to support you. A libre would be great to see exactly what’s going on overnight. I know how much it sucks not sleeping and how the nights seem so long. Think I’ve watched every true crime series going!
 
mattski said:
I don't have any CGM, I have pretty much begged for one as the alert would be so helpful but you'd think I was asking for gold rocking horse poop and hasn't got me anything other than disapproving looks, after coming out of hospital, I ended up back there as I'd dropped below 3 overnight. I'm generally a terrible sleeper so usually top myself up with a couple of biscuits during the night and an isotonic drink and jelly babies if I'm feeling rubbish.

Thank you, your kindness is greatly appreciated
Click to expand...
I completely agree with @Inka. It's hard to understand the mentality of whichever medical person is denying you CGM.

In a couple of places you've remarked on how well supported you are by your GP. From this distance it doesn't seem that way. Since the amended NICE Guidance Notes in spring 2022 prescribing CGM has been entirely the prerogative of GPs. No longer do they need to have support from a Consultant. Your steroid induced diabetes should have resulted in your diagnosis declaring you as equivalent to Type 3c and the generic Type 3xs should be treated as if T1. In practice you have all the complexities of T1 diabetes (without the autoimmune circumstances) with several extra co-morbidities and frequently those extras sit in contradiction to the needs of being as if T1. Managing diabetes under these conditions is, in my opinion, extraordinarily tough. You need all the help that exists.

I suggest you go back to your GP and ask him/her to explain why they don't recognise the severity of your diabetes, why they can't recognise that you are equivalent to T3c and cajole them into doing the right thing and treat you as if T1: Professor Partha Kar, would unhesitatingly say to your GP "write the prescription!".

NHS England » Professor Partha Kar

Type 1 diabetes is going through something of a global revolution – especially with the advancement of technology in aiding self-management. In recent years, the NHS has made big strides in giving access to new technology to the vast majority of people living with type 1 diabetes. Alongside...
www.england.nhs.uk www.england.nhs.uk

The potential saving to the NHS by giving you the chance of gaining better management of all your ailments far, far outweigh the cost of CGM. Has your GP ever referred you to a Hospital based Specialist Diabetes Team?
 
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