Really discouraging appointment, and insulin related weight gain in T2s

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Lucyr

Lucyr

Well-Known Member
Relationship to Diabetes
Type 1
I had such a rubbish appointment with the hospital yesterday, and I can’t tell whether I’m overreacting or being reasonable so after some thoughts.

Won’t go into great detail but basic summary is it wasn’t the normal dr I see, it was someone else who called me after I’d been in the virtual waiting room for more than an hour. Said a1c of 68 is pretty good, I asked for libre as when I used sensors in the summer a1c was 60 with much less effort. That was a flat no as not recommended for T2, if I end up on dialysis or pregnant then those are only exceptions that qualify. (I know that’s not the guidance but he wasn’t interested).

He said don’t increase insulin to reduce BGs as insulin causes weight gain, only way to improve my BGs is lose weight and get off insulin to help with weight.

His only interest was in my weight. It is very high and I do want to reduce it, normal dr had reccomended seeing a dietician and I’ve been seeing her every few months to make small gradual changes that become more of a routine. They aren’t resulting in much weight loss.

His decision at the appointment was prescribe orlistat so that if you eat fatty foods like burgers it will pass straight through, and the possibility of incontinence will help stick to dieting. He also said ask the GP to refer me to tier 3 weight service for weight loss surgery. I do want to lose weight but i don’t want either of these things.

Congratulations if you’re still reading and have made it to my main question.

My initial reaction to the appointment was to feel really bad, took the rest of the day off upset about it, but did realise that i need to sort my weight. My thinking was to stop taking insulin completely and try a low calorie diet, any thoughts on if this could work for long term insulin users? I’ve been diagnosed for 14-15 years and used insulin for probably 13-14 years, since age 21/22 ish. I am very ketone prone but haven’t had DKA before. Can buy libre sensors and blood ketone sticks to monitor myself and have urine ketone sticks. I know none of you can reccomend this but I did start trying it this morning.

I will leave it there for now in case the tech gremlins eat my essay, but can explain more in follow up posts.
 
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Also to add, I know exercise is beneficial but I am very restricted at what I can manage with that due to suspected M.E which I am awaiting a specialist referral for.
 
It's hard to listen to someone who it trying to bully you into one pathway to loosing weight, none of it you want.

I have been vocal enough in private on the matter but look forward to seeing others' opinions/advice 🙂
 
I am not an expert in the complexities of insulin, but I don't think stopping it altogether when you have needed it for so long is a good idea. I don't know whether reducing your carb intake to reduce your intake of bolus insulin would help or not, I think that may well be something that is individual. Sometimes losing weight is just about cutting down on calories (and I would guess he is thinking that increasing insulin to reduce BG isn't cutting down on calorie intake but rather helping your body to process the glucose into storage), but sometimes there is more to it than that.
 
Stress hormones and other hormones play a significant factor in weight gain/loss even apart from any dietary choice changes they contribute to. Personally I would view medication like Orlistat and weight loss surgery as last resorts, though I know they work for others.
 
42istheanswer said:
Stress hormones and other hormones play a significant factor in weight gain/loss even apart from any dietary choice changes they contribute to. Personally I would view medication like Orlistat and weight loss surgery as last resorts, though I know they work for others.
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Yes they are a last resort for me too. I didn’t say no to the orlistat reccomendations because I thought well no harm to get it on my prescription (takes a couple months anyway) and I can think about if I want to actually take it or not afterwards.
 
Not sure I have anything terribly constructive to volunteer, I just really wanted to send (((HUGS))) because I can totally understand you being upset by his attitude.
Can I ask, have you had a C-peptide test recently? My concern is that if you stop the insulin and you don't have enough insulin production of your own, then there is a risk but obviously you are aware of that and have the means to monitor it.
I think a Newcastle type diet may be worth a shot if you do have enough insulin production, but it really should be done in consultation with your health care professionals, especially when you are looking at completely stopping what you suggest are quite large insulin doses. I know you have tried low carb before and it is not for you, but if you haven't tried the very low calorie approach, it may be worth a try, but I really think it should be discussed with a health care professional in your situation.
I personally don't like the sound of a medication which makes you incontinent if you eat the wrong things. It just seems like another way of beating Type 2s with a stick rather than helping them. I don't know how strong your own self discipline is and whether you fall off the wagon much but the meals you post occasionally seem to be reasonably sensible. Only you will know how much you stick to the dietician's advice and how much you stray. If following the dietician's advice is not giving results then I think it is reasonable to try another approach. Only you will know whether you think a shakes based diet will be feasible for you as I believe you are autistic (apologies if I got that wrong) as I seem to remember reading that taste and texture of food can be more challenging with autism or were you looking to try it by adapting real food to meet the 800 cals which to me seems like really hard work. I think the beauty of the Newcastle is that the shakes make it easy to follow
Are you able to discuss the situation with your dietician? I think sometimes they can be more approachable than doctors and consultants.
 
Lucyr said:
He said don’t increase insulin to reduce BGs as insulin causes weight gain, only way to improve my BGs is lose weight and get off insulin to help with weight.
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First of all I’m really sorry to hear how you are feeling and don’t think you’re overreacting at all.

It is a shame that T2s are excluded from the Libre on prescription, especially if you are using insulin then there are some great benefits to be gained as indeed you found over the summer. If you have been using insulin for that length of time could it be that you are not T2? You don’t say if you are also on other medication such as Metformin?

I don’t agree with what was said to you about not increasing insulin, you need what your body needs to keep your BG in check. My understanding is that insulin by itself does not cause weight gain, however if you are having lots of carbs meaning your insulin requirements are higher then it is the higher amount of carbs that is causing the weight gain and not the insulin per se? So if you are having more carbs than needed this would imply more insulin needed and more glucose stored away as fat as it is excess to energy requirements of your body’s cells.

More weight could increase your insulin resistance, meaning more insulin is required for the same amount of carbs consumed. However, just reducing your insulin without doing anything else would surely just increase your BG levels which is definitely a bad thing.

It is hard to shed unwanted weight and a glib statement of “lose weight and get off insulin” is definitely not helpful. I would be very upset if someone said this to me! If it were that easy we would all be stick thin! You could try a low carb diet to reduce calories consumed to help weight loss and this would also mean less bolus insulin needed. But I wouldn’t just cut insulin at the expense of having higher BGs, this would be more damaging to you in the long run.

I hope this has been of some help, I’m sure others will be able to chip in with advice and support too.
 
I’m sorry you saw someone who sounds not very sympathetic @Lucyr In your position, I don’t think I’d stop the insulin - too risky. If you want to reduce your carbs, then I’d do it gradually along with reductions in your insulin. Far safer IMO and gives your body a chance to adapt.
 
Thankyou for your thoughts. To answer a couple of questions at once, I’ve never had a cpeptide test. I’ve asked but always been told no point as I didn’t use insulin for over a year after being diagnosed.

My suspicion is I definitely produce some insulin but that it isn’t enough to cope with background or food needs. It is enough to keep me out of DKA as although I get strong urine ketones when i miss insulin or when i tried the tablets that make you pee sugar out, these don’t really translate into blood ketones.

My current medications are
Apidra
Lantus
Metformin slow release
Propanalol
Amitryptaline
Multivitamin with iron
 
Ah so sorry you’ve had such an unpleasant appointment @Lucyr

I’m not surprised you were upset :(

Good to hear you’ve been making some changes with the dietician, but unfortunate you‘ve not seen much impact yet. Do you think that might be something you could push a bit harder with, and see if changes increase?

Feels like you’ve been working on this for a lot of years, and you’ve already tried a lot of the obvious strategies. So I guess it’s up to you whether it seems better to revisit some options before, or try something else.

Would a food diary help give you baseline of where you are starting from in terms of calories and carbs?

Big hugs to you. Hope you are able to put it behind you and don’t dwell on the negative experience or unfortunate comments too much.
 
Oh @Lucyr that appointment sounds very upsetting, hope you're feeling a bit better this evening! I'm sorry I don't have any advice/experience regarding insulin to offer, but wanted to send you (((hugs))) Hope things improve for you 🙂
 
Lucyr said:
hankyou for your thoughts. To answer a couple of questions at once, I’ve never had a cpeptide test. I’ve asked but always been told no point as I didn’t use insulin for over a year after being diagnosed.
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There are plenty of LADA who didn't need insulin for over a year before being correctly diagnosed and starting on insulin .... or probably more accurately the other way around ie starting on insulin and eventually getting a Type 1/LADA diagnosis and most adult Type 1s still produce some insulin for several years after commencing insulin therapy.

I have never had DKA or significant ketones and I am Type 1 and went onto insulin quite quickly after 6 weeks and my C-pep was borderline. I think there is a huge variation in how people develop diabetes and the different types of diabetes and I don't think you can say one set of circumstances really rules anything out.

I imagine that if you are significantly overweight and requiring large doses of insulin then you will be suffering from insulin resistance and the Newcastle Diet would probably be the best way to tackle that but I think It would be a bit of a safety net to have a C-pep done to ascertain that you are actually producing a reasonable amount yourself before you commenced that. I wonder if contacting Professor Roy Taylor might be helpful to see if he has any experience of someone stopping quite high insulin doses in order to do the Newcastle.
 
A couple of us have known @Lucyr for the best part of some time. Personally, from very early on - I have never been 100% convinced that she was a straightforward Type 2, and I'm still not. I've also in the past, urged Lucy to get a C-Peptide test, but no doctor has ever offered to do one for her - and to be honest I really don't know how on earth anyone goes about getting one, if no medic they are in touch with, will offer.
 
trophywench said:
A couple of us have known @Lucyr for the best part of some time. Personally, from very early on - I have never been 100% convinced that she was a straightforward Type 2, and I'm still not. I've also in the past, urged Lucy to get a C-Peptide test, but no doctor has ever offered to do one for her - and to be honest I really don't know how on earth anyone goes about getting one, if no medic they are in touch with, will offer.
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C-peptide tests are available from commercial labs. Just as an example: https://bluehorizonbloodtests.co.uk/products/c-peptide
 
?Thought the blood sample had to be kept at a certain temperature - like frozen at X degrees PDQ?
 
you can go and get them done private but they are hundreds of ££ (done in private hospitals and frozen etc)
 
Thanks, I’ve not looked to get a cpeptide privately because I’m not sure that it would be recognised by the NHS or change my treatment if it were to be low or high.

I’ve decided to start by counting calories again, as that plus low fat is how I’ve lost weight previously, and gathering some data on weight and food must be helpful. I don’t think my eating is extreme or anything but obviously it’s more than is needed for me.

I did have 800 calories today and didn’t take any bolus insulin, but bgs 12-22 and urine ketones at ++++ so suspect I’d need to stick to insulin and adjust doses as liver stores used up and bgs dropped if I did try the Newcastle diet. Just before Christmas is not the right time to do an 800 calorie diet full time so I think it would more likely be next year if I did go for that, and more playing with options / getting into the habit of tracking for the next couple of weeks.
 
So sorry you had such a rubbish appointment @Lucyr

I have no idea what planet the doctor you saw is on, or what century he thinks he's in - he seems to have been talking complete nonsense.

As someone already said, insulin does not cause weight gain - or all type 1s would be overweight! I have been on insulin for nearly 12 years and my weight has fluctuated between about 50-53kg most of the time, and not once has it gone over 54kg, which was my average weight before I got diabetes - and I have ME and don't get much exercise.

Someone on insulin who is struggling with hypos might eat too much in order not to hypo and then put on weight, but it's not the insulin that causes the weight gain, it's the eating too much. So there is no need at all to stop your insulin, and in fact if your blood sugar is high you should be raising your insulin to deal with it!

I don't approve of medication used as a punishment either, my personal feeling would be not to take the Orlistat, but it should be entirely your decision whether you try something like that, not something you're bullied into.

I don't think you're overreacting at all, I think if I were you I'd be making a complaint about the way he treated you - when you have a long-term medical condition doctors are supposed to listen to you and take your opinions into account so you can plan your treatment together, they are not supposed to ignore everything you say and tell you what to do.

Do you have a diabetes nurse who is helpful? If so I'd maybe talk to her or him about getting the Libre and also about getting more appropriate weight loss advice. When my hospital weren't prescribing Libres for type 1s, my diabetes nurse (the regular surgery one, not a DSN) was able to get me one by contacting a consultant at a different hospital and getting him to prescribe, so it's worth persevering asking different people about that.

I don't know much about the C-Peptide test, I've never had one (when I was diagnosed I had DKA, was losing weight rapidly, and had a GAD antibody result off the charts, so they didn't feel it was necessary). But I'm pretty sure I still produce some insulin too as I hypo so much - there are quite a few of us who don't really fit in the category boxes into which they try to stuff us.
 
Also, I’m still annoyed at his attitude but think I’m a bit calmer / less upset so thanks for your help
 
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