This is excellent info. I was also thinking 3c but I’m not too hot on the subject so wasn’t sure.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
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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Insulinoma/reactive hypoglycemia
- Thread starter mattski
- Start date
- Status
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
@Inka The ward Dr said that I couldn't have one because I'm steroid induced and not a type one, 2 days before getting admitted I had a locum Dr tell me that I shouldn't even be testing at home, even after I explained that my usual GP gave me the kit and prescribed needles and strip's.
Thank you for the information on the Libre, I'll take a look at that.i have so little knowledge on diabetes and what things are available as until this recent bout of what seems like full time hypoglycemia, I've been in remission and had no problems connected with diabetes, I think that almost goes against me when asking for things
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Thank you so much @Proud to be erratic for all the information you've given me. Apologies but I think this is going to be a bit of an essay of a reply.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...
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?
So my initial diagnosis pretty much went like this " yes you have diabetes, lose some weight, cut out white foods, ie bread, potatoes, rice and replace those with brown bread, sweet potatoes and brown rice, goodbye " (not my usual GP).
I did the Desmond course and was the only person with steroid induced diabetes. At the end of the course the trainer asked me to stay behind. We discussed the length of the courses of steroids and she said that she was going to refer me to the community team for better management because when on steroids I should probably be injecting insulin. Several months passed, heard nothing. End of July start to feel rather unwell, start using my testing kit and readings between 3.2 and 2.1. phone diabetic team at the hospital where I did the Desmond course, explain that I should have been referred to the community team, that I was getting worried as my readings were low. Got told nothing to do with us go back to your GP.
Saw the GP 3rd August, sent to hospital, admitted and stayed in for eight days. Seen on the ward by diabetic nurse specialist who said didn't think I was appropriate to be under their team, I'm now under the care of endocrinology.
Every doctor seems to have a different opinion, I feel ill equipped to challenge due to my lack of knowledge. I've never previously heard of a type 3 and even though multiple doctors have agreed with the diagnosis of steroid induced diabetes it is on my records as a type 2. I have just taken a screenshot of part of my discharge summary from hospital and will attach as I feel that you may be able to make sense of it more than I can.
Once again can I just say how much I appreciate you taking the time to share this information with me.
Attachments
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Honestly @EmmaL76 I already feel like I've had far more support from this site since joining on Saturday then I have have in the last 18 months from the people responsible for teaching me and helping me manage my diabetes. I have so little knowledge on the subject that every message and every piece of information has been absolutely invaluable.
As you are into true crime series, icing 96 hours of fasting and hospital for absolutely no end result is the most definitely a criminal act lol
Proud to be erratic
Well-Known Member
- Relationship to Diabetes
- Type 3c
- Pronouns
- He/Him
I'll provide you with more and hopefully better information tomorrow or Sunday. I've got various things I must do first. But that Endocrinology Ward Dr failed you and it angers me sufficiently that I can't let this sit unchallenged.
Ahh I’m so glad to hear that ! Not the fasting part although it would make a good mini series 😉
Proud to be erratic
Well-Known Member
- Relationship to Diabetes
- Type 3c
- Pronouns
- He/Him
Good morning @mattski,
Just to help put T3(a-k) into a better understanding for yourself, here is a link to a response I provided on 31 Aug to a new member with steroid induced diabetes. I must put in a big caveat though: despite the strong opinions I express from time to time, I am not in any way medically qualified. I had a difficult start to my new diabetic lifestyle and had (since age 20) been indoctrinated that "knowledge dispels fear". So I made it my business to learn and understand a certain amount more about my diabetes.
I certainly don't know enough to not need help from others. On Wednesday I had a face to face consult at the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) and left after 90 minutes with various suggestions including a possible insulin change as well as 'tips and tricks' that might help me get further BG stability. OCDEM are pioneering islettransplants as well as being a leading centre for artificial oancreas and I am so fortunate. I am very focused on my diabetic needs, because luckily my cancer is in remission and I rarely give it a thought. Many of us with a T3a-k diagnosis have a priority to manage one or more other ailment first and their 'D' has to be secondary. I've also acquired a huge amount of information from this forum, including a significant awareness that many of this diabetic community have challenges with their D management - not least because whatever we think the general rules are our D proves that rule book to be wrong! That's been officially related to wearing the wrong colour socks ..... (thanks @everydayupsanddowns, I have far too many prs of socks and still can't get this right).
You are currently wrestling with Insulinoma and Reactive Hypoglycaemia and seem to have been very poorly served at various points in your treatment. Starting with that original diagnosis of T2 - a lazy conclusion from a medically qualified individual not thinking. You trust their diagnosis; they find it easy to use the catch-all term, failing to ask themselves where is the evidence of excess insulin production and evidence of significant insulin resistance - to justify the T2 tag.
Now you have this erroneous tag in your medical notes. Your GP could assist you by correcting that written diagnosis and if that is outside the GP's comfort zone at least put a strong marker on your notes challenging that T2 tag - eg "T3c as if T1, rather than T2". It really doesn't require much courage to try and correct something that is blatantly incorrect and wouldn't/ shouldn't bring that GP's medical credibility into question to try to correct. I do think that is a battle that I would take on - because it feels key to get that bit right. BUT, I'm seeing this from a perspective of diabetes first; your priority is the Insulinoma or Reactive Hypoglycaemia question.
Those are my initial overnight thoughts, from a diabetes centred perspective. I cringed at your experiences with Endocrinology specialists, but also I'm far from surprised having twice had blatantly wrong written instructions from an Endocrinology department in my local hospital in 2022, the 2nd seriously endangering my life. Luckily I've moved to a neighboroughing County and should be far enough away from that Hospital. I will come back to this when I get a couple of minutes. But hopefully I've given you some insight into why T3c has been mentioned.
Morning Mattski,
I strongly echo one of Prouds salient points and do not be afraid to challenge the original diagnosis as many GPs can be one quite fixed in their views based on original diagnosis and this will frame the treatment.
At the end of the day you are the one who is affected most by the treatment and if it is not working then it is important to pursue other options.
I do appreciate that it helps tremendously if you have an understanding local healthcare Team which I am lucky enough to have and I do have a basic knowledge of diabetes and how the body works.
My starting point in any situation is to get a clear idea of what I am dealing with so you need a full accurate diagnosis.Then I seek to find out as much as possible about implications and options and then decide what is best for myself based on all sources( the forums here are excellent) and then try and act what is in my best interests.
We all have to recognise that our individual conditions are very specific to ourselves and may differ significantly from others with “ similar “ situations.
Anyway best of luck moving forward
I strongly echo one of Prouds salient points and do not be afraid to challenge the original diagnosis as many GPs can be one quite fixed in their views based on original diagnosis and this will frame the treatment.
At the end of the day you are the one who is affected most by the treatment and if it is not working then it is important to pursue other options.
I do appreciate that it helps tremendously if you have an understanding local healthcare Team which I am lucky enough to have and I do have a basic knowledge of diabetes and how the body works.
My starting point in any situation is to get a clear idea of what I am dealing with so you need a full accurate diagnosis.Then I seek to find out as much as possible about implications and options and then decide what is best for myself based on all sources( the forums here are excellent) and then try and act what is in my best interests.
We all have to recognise that our individual conditions are very specific to ourselves and may differ significantly from others with “ similar “ situations.
Anyway best of luck moving forward
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
It’s one of the basics that should be taught at diagnosis!
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
But with your recent problems with hypoglycaemia and a possible insulinoma, I’d have thought even a CGM short term would be an obvious help. It all seems a big ‘Computer Says No’.
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
To be honest, I'm pretty disgusted with the way things have been done. Before my hospital admission, I struggle to believe that the diabetic clinic refused to give me any advice or help and when I was in hospital it was quite shocking in the way that I was treated. I think I'm going to contact pals and put a complaint in. My local hospital is really very poor in standards and my GP has said they are reluctant to send people there as the standard of care is so poor
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
It wouldn't have been so bad had they not messed it up, left me 96 hours without food due to the mistakes and then insisted on parking the food trolley directly in front of my bed every time they dished up food or drink. I had to get a bit cross to get them to write nil by mouth above my bed
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Good morning @Proud to be erratic Thank you for taking the time to share some really helpful and insightful information, it really really is greatly appreciated. I already feel in a much stronger position to become a pain in the backside and challenge things.
It's so frustrating, everything I need for my lungs and other conditions, I seem to have no problem getting but with the diabetes it has been the total opposite. Due to the incorrect diagnosis on my notes, I have lost count of the amount of times that I have been told that there's no need for me to even test at home. I have shared custody of my 13 year old who is autistic, due to the lack of support from the diabetic team, had I not have had the ability to test and see that my blood sugars were down to 2.1, I dread to think what could have actually happened and the impact on my youngest. Thanks to all the information that you and others have shared, I may feel much more prepared and motivated to dig my heels in to get the correct diagnosis put onto my notes and to get the right support in place and I'm not going to stop until I am satisfied that has happened. As you can see from my hospital discharge I attached last night, the diabetic nurse specialist as well as several GP's and doctors in hospital have all agreed that I am steroid induced so there is no reason why this cannot be amended on my records, it's also quite shocking to see that with everything going on the diabetic nurse specialist then says no input required from that team.
Once again, your help has been invaluable and I really feel like it could make all the difference so thank you for taking the time to help
rebrascora
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- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Wishing you lots of luck in your battle to get the correct diagnosis. In the meantime it would be worth you applying for a free 14 day trial of the Freestyle Libre, which is one sensor, assuming you have a compatible phone. It is also possible although expensive to self fund until you get them on prescription and many of us Type 1s and indeed some Type 2s still do this, but the free trial is well worth applying for with no real drawback, other than feeling a bit vulnerable for a day or two when it ends, because it really is a big reassurance when you have it. If you do a search for Freestyle Libre you will I am sure find the free trial info. You have to be diabetic and have a suitable phone ... but the list is long) and not have previously trialed it.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
96 hours - a whole 4 days! - without food would be cause for complaint by itself. That must have been torture.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
And would explain why ketones were high... ie starvation ketones!
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Yeah, it was about as much fun as a trip to the dentist, although my hospital is shocking with their care, their food is actually really lovely and having that aroma so close to my bed was horrendous lol
That’s brutal! 96 hours can’t imagine how hangry you must of been. You think that would have warranted your own room with en-suite !!
You have had so much brilliant advice and information so far and I know as was said earlier we are not trained professionals but GP’s know a little about a lot and consultants a lot about a little… but they don’t know it all, some of us have walked in the odd shoes and know the path…. May not be professional but defo trained lol
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Yeah, that's exactly what my GP said, although unsurprisingly, the endocrinology registrar wrote to my GP stating that my 2nd run of fasting was cancelled at 18 hours due to high ketones.....that was total nonsense and no idea where he plucked that from, I have the inflamed bowl to prove otherwise lol
mattski
Active Member
- Relationship to Diabetes
- Steroid Induced Diabetes
Your analysis of dr's and consultants is spot on, you can always tell from those observations who has been a lot of time having to deal with health issues that don't come under the "normal" umbrellas.
I think the nurses felt so sorry for me having to repeat the test that they actually made me a goodie bag for when the second fast had finished and gave me some food to take home.
At one point I started to hallucinate and every person that came onto the ward started to look like a three course meal lol
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