Does medication seem a bit random?

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RJN123

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Type 2
I was diagnosed in April with type 2 and put on Metformin. Fine. Then I had surgery requiring ongoing steroids afterwards, and because my glucose was crazy in the hospital, I was sent home with gliclazide. Shortly after the DNS reduced this by half, but added sitagliptin.
Now, three months after surgery, my finger pricks indicate reasonably good control, but I haven’t had a recent HB1AC. Spoke to the endo yesterday who felt we could drop one of the medications, and more or less left it to me to decide which one. As both my DNS’s have seemed wary of gliclazide, because they can cause hypos, I figured I’d drop that. Of course it is nice to be at least one med down (I have cancer and am steroid dependent, so already on loads other medicines), but it all seems quite random.
I read the NICE guidelines, and it didn’t help an awful lot.
Any insights about whether there is actually any method, or is it trial and error?
 
RJN123 said:
Any insights about whether there is actually any method, or is it trial and error?
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It’s trial and error to find what works for each person since every individual is different. There’s general guidelines about the order medications are added eg metformin is always first unless not suitable.
 
RJN123 said:
I was diagnosed in April with type 2 and put on Metformin. Fine. Then I had surgery requiring ongoing steroids afterwards, and because my glucose was crazy in the hospital, I was sent home with gliclazide. Shortly after the DNS reduced this by half, but added sitagliptin.
Now, three months after surgery, my finger pricks indicate reasonably good control, but I haven’t had a recent HB1AC. Spoke to the endo yesterday who felt we could drop one of the medications, and more or less left it to me to decide which one. As both my DNS’s have seemed wary of gliclazide, because they can cause hypos, I figured I’d drop that. Of course it is nice to be at least one med down (I have cancer and am steroid dependent, so already on loads other medicines), but it all seems quite random.
I read the NICE guidelines, and it didn’t help an awful lot.
Any insights about whether there is actually any method, or is it trial and error?
Click to expand...
Glad things are coming more under control. Gliclazide can cause weight gain so if your steroids trigger that? then maybe be a way to weight up pros/cons depending on side affects of other drugs/ treatments your going through right now ? Especially if you do or don’t get tummy issues with metformin. Might help, wish could give you a better idea as sounds like so much to deal with x
 
Sarahp said:
Glad things are coming more under control. Gliclazide can cause weight gain so if your steroids trigger that? then maybe be a way to weight up pros/cons depending on side affects of other drugs/ treatments your going through right now ? Especially if you do or don’t get tummy issues with metformin. Might help, wish could give you a better idea as sounds like so much to deal with x
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Thank you, thankfully I haven’t gained any weight or had any tummy issues (I was given metformin MR from the start) - I actually suspect metformin has helped me lose a few pounds, but difficult to say as I have made some changes to my diet and started running again recently. My goal is to get rid of as many medications as possible, as I am fed up with all the daily tablets (around 20 a day), and never knowing what is a side effect or interaction. Being 51, normal weight and in good shape it is a pain being so dependent on medications. I am finishing cancer treatment in a month (temporarily), so just want to be as “normal” as possible for a while.

With my other ailments, I have gone really deep into the science to be able to participate in my treatment, but guess I am slightly fatigued now - so appreciate this forum and the well-informed folks here. Thank you!
 
Often medics have a lack of understanding of how each drug works. For example Gliclazide only causes hypos if the dose is too high so that may need adjusting. It stimulates the pancreas to produce more insulin and works over roughly 10 hours. It's not the Glic itself that causes weight gain (a popular mis-conception) but the carbs you eat with it when there is plenty of stimulated insulin. Weight gain means too many carbs.
 
RJN123 said:
Thank you, thankfully I haven’t gained any weight or had any tummy issues (I was given metformin MR from the start) - I actually suspect metformin has helped me lose a few pounds, but difficult to say as I have made some changes to my diet and started running again recently. My goal is to get rid of as many medications as possible, as I am fed up with all the daily tablets (around 20 a day), and never knowing what is a side effect or interaction. Being 51, normal weight and in good shape it is a pain being so dependent on medications. I am finishing cancer treatment in a month (temporarily), so just want to be as “normal” as possible for a while.

With my other ailments, I have gone really deep into the science to be able to participate in my treatment, but guess I am slightly fatigued now - so appreciate this forum and the well-informed folks here. Thank you!
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Really hope you get the break you crave for a while and much longer and can relax for a while. Sorry for slow reply, thinking of you and glad you found us.
 
everydayupsanddowns said:
There’s a thread in the Links section that points to this flowchart, based on NICE’s recommendations


I think the apparent sketchiness is partly because different meds suit different people, and getting the right balance and combination can be quite and individual and personal thing?
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Thank you. Yes, I did look at this. Point taken - I am just so used to more specific pathways, so has been a bit surprised at the flexible regimen…
 
RJN123 said:
Thank you. Yes, I did look at this. Point taken - I am just so used to more specific pathways, so has been a bit surprised at the flexible regimen…
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I think sometimes our professionals don’t explain well enough how different we can each be affected by our illness, Diabetes seems to hit us all differently so I guess that needs a more fluid process than your other treatments
 
Sarahp said:
I think sometimes our professionals don’t explain well enough how different we can each be affected by our illness, Diabetes seems to hit us all differently so I guess that needs a more fluid process than your other treatments
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Yes @Sarahp I certainly can identify with that explanation.

I also think within the professionals, even those in a single team, there can be different interpretations by 2 professionals about how one patient is coping with the illness and responding to a particular treatment regime. I don't want to leave that as a criticism, just my perspective about how professionals are often making subjective assessments that are not always cleanly underpinned by scientific facts.

But @RJN123 I note that you are receiving treatment for various co-morbidities, including for cancer. So perhaps your medications (plural) are already a bit "random" since firstly is your existing cancer firmly pushed into remission or still grumbling away and secondly the professionals are themselves having to use trial and learning (rather than error) to establish what chemical cocktail is best for you as an individual. There may be good evidence from other patients about what meds sit comfortably alongside other meds - but not specifically for you.

I'm in cancer remission, still getting 6 monthly reviews. I had a most refreshing and lengthy oncology review earlier this year and that Consultant was clear in his mind that he had the overall lead for my care since clues from all other relatively minor problems could provide him with helpful markers of possible future cancer return - when blood tests and scans might still be negative. I found that reassuring, rather than frightening; he was constantly watching out for evidence of a future problem in order that is could be addressed in a timely manner.

A passing thought @RJN123 but are you really T2 as diagnosed in April but actually some variant of T3(a-k). I.e. is your diabetes brought on by other ailments, including your cancer and thus you don't fit the "standard" criteria for T2 treatment? It does read as though your steroids are the cause of your D. Whatever "standard" criteria might be! That won't change whatever processes you are given or find from this forum in how you manage your D, but might introduce a rather more sensible thought process in finding the best treatment path for your D amidst your other issues. I will read back into your earlier posts, in due course. I might be observing and commenting out of context.
 
Proud to be erratic said:
Yes @Sarahp I certainly can identify with that explanation.

I also think within the professionals, even those in a single team, there can be different interpretations by 2 professionals about how one patient is coping with the illness and responding to a particular treatment regime. I don't want to leave that as a criticism, just my perspective about how professionals are often making subjective assessments that are not always cleanly underpinned by scientific facts.

But @RJN123 I note that you are receiving treatment for various co-morbidities, including for cancer. So perhaps your medications (plural) are already a bit "random" since firstly is your existing cancer firmly pushed into remission or still grumbling away and secondly the professionals are themselves having to use trial and learning (rather than error) to establish what chemical cocktail is best for you as an individual. There may be good evidence from other patients about what meds sit comfortably alongside other meds - but not specifically for you.

I'm in cancer remission, still getting 6 monthly reviews. I had a most refreshing and lengthy oncology review earlier this year and that Consultant was clear in his mind that he had the overall lead for my care since clues from all other relatively minor problems could provide him with helpful markers of possible future cancer return - when blood tests and scans might still be negative. I found that reassuring, rather than frightening; he was constantly watching out for evidence of a future problem in order that is could be addressed in a timely manner.

A passing thought @RJN123 but are you really T2 as diagnosed in April but actually some variant of T3(a-k). I.e. is your diabetes brought on by other ailments, including your cancer and thus you don't fit the "standard" criteria for T2 treatment? It does read as though your steroids are the cause of your D. Whatever "standard" criteria might be! That won't change whatever processes you are given or find from this forum in how you manage your D, but might introduce a rather more sensible thought process in finding the best treatment path for your D amidst your other issues. I will read back into your earlier posts, in due course. I might be observing and commenting out of context.
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I think you are spot on, and I appreciate the detailed advice. I am a complex patient, with a number of potential a drug interactions ( I am on immunotherapy as well) to take into account etc etc. Out of my three ailments, diabetes is by far the least harmful ( the other two being lung cancer and adrenal insufficiency), so my medical team seem to be somewhat relaxed about. I, too, have a great oncology team who looks after the whole me.

Just to answer your question, I was only started on steroids after my diabetes diagnosis, so not steroid induced, but possibly immunotherapy induced

I suppose I have just got used to being on top of my medical care, and diabetes seem a bit more “loose” than what I am used to, where everything is determined by biomarkers etc.

I am interested in what you say about T2/3. Is there a test to determine this? I had the usual peptide tests etc. And what would be the implication? I have just let it lie as my various medical folks said it wouldn’t make any difference To my treatment. Any thoughts on this?
 
RJN123 said:
I think you are spot on, and I appreciate the detailed advice. I am a complex patient, with a number of potential a drug interactions ( I am on immunotherapy as well) to take into account etc etc. Out of my three ailments, diabetes is by far the least harmful ( the other two being lung cancer and adrenal insufficiency), so my medical team seem to be somewhat relaxed about. I, too, have a great oncology team who looks after the whole me.

Just to answer your question, I was only started on steroids after my diabetes diagnosis, so not steroid induced, but possibly immunotherapy induced

I suppose I have just got used to being on top of my medical care, and diabetes seem a bit more “loose” than what I am used to, where everything is determined by biomarkers etc.

I am interested in what you say about T2/3. Is there a test to determine this? I had the usual peptide tests etc. And what would be the implication? I have just let it lie as my various medical folks said it wouldn’t make any difference To my treatment. Any thoughts on this?
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I think it probably would make no difference.

As far as I'm aware there are no specific biomarkers and the T3 categories were never formally approved after an International symposium - pre Covid. It seemed to be more of a growing realisation that outside of T1 for the clear enough autoimmune circumstance there were many other reasons for people struggling with elevated BG control and they were bluntly either categorised as T1 (blatantly wrongly) or T2 (just an unthinking catch-all diagnosis). The T3 starter at least provided the opportunity for a health care professional to pause and think - what is the root cause. The vast majority of those who might be a T3 variant will invariably have a more pressing other ailment and the diabetes needs to be managed within other treatments. The blunt use of oral meds such as metfomin can suffice, but aren't necessarily seeing the bigger picture.

In your case with your Oncology team looking after the 'whole you' that is a great solution. I was discharged after my total pancreatectomy as T1, clearly incorrect, but placed me firmly inside the more useful NICE Guidance criteria NG17for T1 and this makes something like CGM available from the NHS. It also helps with other less expensive meds, with minimal quibbling. I still haven't read back into your earlier postings. Do you have CGM and if so is that NHS funded? The T3 label might help stimulate layeral thought from a GP who these days has the gift of prescribing CGM without needing to be told its OK by a Consultant. If you need CGM but don't currently get it on script, then I think you could make a simple but strong business case for help in managing the secondary but stressful diabetes, being further aggravated by steroids.

You have a lot going on and clearly make it your business to try and stay abreast of your probably ever-changing health issues. Good luck with all of that.
 
Thank you for the thorough response. I find it both very interesting and very helpful.
Indeed I would have really liked a CGM as I trialled the Libre and it helped me understand my triggers better. I have another HB1AC coming up next week, and hoping it will show that the changes I have made are enough. If not, I may make some waves re the T3, so I can be considered for CGM. I know many do without, and I don’t want to come across as spoiled, but with illnesses and treatments taking up such a large part of my life it would be such a nice support. My GP and DNS really want to give me one, but can’t as long as I am “just” T2. It might be that she can make a stronger case on T3. Apart from that I thankfully get everything covered under my medical exemption card which I will have for life.
 
RJN123 said:
Thank you for the thorough response. I find it both very interesting and very helpful.
Indeed I would have really liked a CGM as I trialled the Libre and it helped me understand my triggers better. I have another HB1AC coming up next week, and hoping it will show that the changes I have made are enough. If not, I may make some waves re the T3, so I can be considered for CGM. I know many do without, and I don’t want to come across as spoiled, but with illnesses and treatments taking up such a large part of my life it would be such a nice support. My GP and DNS really want to give me one, but can’t as long as I am “just” T2. It might be that she can make a stronger case on T3. Apart from that I thankfully get everything covered under my medical exemption card which I will have for life.
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Until spring 2022 the prescribing of CGM was not a free choice by GPs. They had to be asked to write the script by an appropriate Consultant. The revise of NG17 and NG28 (for T2s) during the first half of 2022 moved the goal posts to allow GPs to write such a script in their own right.

The immediate consequence was very limited, since NGs are not mandatory and need the relatively newly established Integrated Care Boards (ICBs) to approve each NG according to their available funding. ICBs replaced the former (much smaller) Cost Centre Groups (CCGs) and are in effect a collection of many former CCGs in a significantly bigger geographic region - working from a new "rule book". So the freedom of GPs was constrained by financial authorisations - which alas rather undermined the sensible and well intentioned NG revisions of 2022 giving GPs more independence.

It would be reasonable to presume that this bureaucracy has more-or-less now untangled itself and your GP could unilaterally write the script and use a combination of his/her medical sense along with a strong business case centred around your unique circumstances to justify the decision - should such justification be needed. A well constructed written request from you would ease the GP workload in creating that documented business case. You are clearly not "just T2" and any GP or DNS now just needs to be prodded to recognise that and exercise the authority given by the revisions of NG17 and NG28 last year. You ought not to see this as you being spoiled, but as a logical and commensurate action to ease the many medical challenges that you are juggling with. Managing your D is not just time consuming but is stressful, needing you to make many (very many) discrete decisions every single day of your life about your food choices in order to keep your BG in as good a place as is practical. Don't allow yourself or any HCP to underestimate how significant CGM can be for you. CGM is a necessity for you - in my opinion - to ease this multitude of daily stressful decisions. Don't forget to mention how revealing and beneficial your free trial of L2 was.

Good luck.
 
Thank you, I appreciate the advice.
 
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