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How to know when to come off drugs?

Discussion in 'Type 2 Diabetes' started by Andydragon, Sep 10, 2020.

  1. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Hi there,

    some of you may have seen I am on a weight loss / lower carb journey. I am not perfect, and haven’t gone Keto, just substantial drop in what I used to have. Have the occasional bad day

    at the start of my journey my hba1c was 78. In June following the addition of Dapagliflozin and weight loss I was at 46. So it could be the extra drugs, or the weight loss or both that helped

    Since then I have lost a further 9.5kg and finger prick tests are averaging 5.5 or lower. I don’t measure significantly often though

    I am going to speak to the doctor on Monday and ask for a repeat hba1c and if it is lower ask to come off the drugs in reverse order they were added to my regimen. Then ideally 3 monthly reviews and weight loss until I reach a plateau whether no or some drugs

    is this a sensible approach or is there a better way to know when to drop them. Is the risk of my body gets better that I will drive myself into hypo risk?

    I know some of not all of the drugs I have do help weight loss also so do worry if not careful I’ll stop losing weight
     
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  2. ianpspurs

    ianpspurs Type 2 · Master

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    Great weight loss and lowering of Hba1c. You need to talk to your GP/DN rather than us.
     
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  3. ianf0ster

    ianf0ster Type 2 · Well-Known Member

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    Low Carb, unless you are eating a lot more calories than before = lower weight in almost all cases.
    Thousands of us T2D's have lost weight on LCHF without conscious reduction in calories. Indeed I just swapped carbs for fats and so initially increased my Calories yet still lost weight - even though I was not aiming for that!
    Weight loss is separate from T2D or normal Blood Glucose.

    Metformin supposedly helps reduce appetite, but so does being fat adapted from Low Carb.
    However do be careful in coming off medication. It needs to be done by reducing and monitoring each time, definitely not all at once!
     
  4. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Oh I will, but I appreciate people’s opinions too. mainly around how their drug reduction came about, how they dealt with doctors and what the impact off not dropping drugs are

    I haven’t always found the doctors always best at this unfortunately apart from telling me it’s progressive, I will end up on insulin and healthy carbs are the way to go.... so, having to push my own treatment plan
     
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  5. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Thanks for that, the reducing and monitoring was my plan. Sounds like I am on the right track there

    I thought weight loss and blood level dropping was connected in T2, is that not the case?
     
  6. ianf0ster

    ianf0ster Type 2 · Well-Known Member

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    Many diabetes specialists (usually low carb sceptics) claim that it is all about weight loss, however there is some evidence to the contrary from several Doctors with actual Low Carb practices.

    That is that in most cases patients both lose weight and reduce their Blood Glucose so that by the time an new HbA1C is done both are lower. However there are some (usually relatively skinny T2 diabetics ) who don't lose weight but do go into remission.

    I think there as once such person in this forum - though I haven't seen him post for a few months.

    Personally I believe that it is all about the crabs- that low carb controls BG independent of weight loss.
    Why? - Because as soon as I got my BG meter, I could see that low carb reduced my BG in finger-prick tests hence it would reduce the average or the HbA1C. But that was instantaneous - the very first Low Carb meal was all it took , so no weight loss was needed to trigger it!
     
  7. Daibell

    Daibell LADA · Master

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    Yes, you should reduce meds as your weight and BS become 'normal'. Do this in conjunction with your GP/DN advice. Your profile says you have Bydureon which should only be needed to reduce excess weight so that might be the first candidate?
     
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  8. sno0opy

    sno0opy Type 2 · Well-Known Member

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    To be honest, my HBA1C is low and has been a while. 3 tests and 9 months at 30 - 33. I'm still taking the Metformin.

    I know if i stopped my HBA1C wouldn't change much as it does not do a huge amount for it, however it has other benefits and at the moment my Dr is not happy with the idea of stopping it. (If i were on other meds i would be in a totally different mindset - anything that making me produce more insulin i would be keen to work down safely)

    Since i have no reaction to it, i couldn't really care less and i dont feel i need to stop taking it to achieve some kind of badge of honor for being "medicine free". When i first started this journey, i was very keen to drop the meds, but the more i have read and came to terms with my condition the less i have been interested in pushing it.

    If my Dr later says we withdraw the meds, i will. But i'm not going to push it myself any time soon as it really does not bother me.

    I do however have a totally different outlook then many on this subject. I believe strongly that in my case Weight Loss and exercise have had a significant impact on my HBA1C. Weight loss through exercise and muscle development as apposed to weight loss through diet alone. Yes i have changed my diet and certainly initially that had the biggest impact, now its mostly changes to my body not my diet.
     
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  9. bulkbiker

    bulkbiker Type 2 · Oracle

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    De-prescribing is very hard for most doctors to do as it goes against everything they have been taught.

    I took my own decision and stopped medication whilst continuing to monitor blood sugar levels closely. I only told HCP's when they credited the meds for lowering my HbA1c. They were perturbed to say the least!

    Discuss it with them (if you can get an appt) but remember at the end of the day it's your choice what you put in your body.
     
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  10. Andydragon

    Andydragon Type 2 · Well-Known Member

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    The most recently added and the one drug that did give me nasty side effects (although only once) is the Dapagliflozin so am thinking that might be the first candidate for removal. Although it would be nice to no longer inject I think that would be the next plan followed by reducing the metformin although not so worried about that one to be fair

    I also just did a exercise bike for 37mins which I know will make a difference and am just before dinner and had a reading of 3.3 on my meter which I think is a tad low?
     
    #10 Andydragon, Sep 10, 2020 at 5:25 PM
    Last edited: Sep 10, 2020
  11. DCB 2

    DCB 2 Type 2 (in remission!) · Well-Known Member

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    In my case between diet , exercise, and losing over 50 lbs the meds, Glipizide, was causing me to go hypo. I explained it to my doctor that there was not any way I could take the medicine. We agreed that it would be worth a try, This just a suggestion, but providing him/her with a chart showing your daily readings might help. If your numbers are on the lowish side it might help convince your doctor. Getting off the meds is always great, but it is also a learning process. You are flying solo, you do not have any meds controlling things, so you need to be careful with your diet and learn how your body reacts to food without them.

    The first time I went off the meds I was not careful and it was a mess of my own choosing

    Best of Luck!

    Dave
     
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  12. Sparklebrightisright62

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    Hi there,

    Which ones are you on that is helping with weightloss as I need to loose more weight am on lo carb.

    Thank you
    Sparklebright62
     
  13. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Apparantly Metformin suppresses appetite, and bydureon and daplaflaglozin help so I've been told

    Whether they do is a different question

    So I spoke to the doctor who asked how I lost the weight and wasn't phased at all when I said low carb and exercise

    She agreed with getting hba1c and coming off drugs in reverse if it is better. And then keeping an eye over time coupled with my continues weight loss and tests

    So... Fingers crossed!
     
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  14. Robbity

    Robbity Type 2 · Expert

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    Well done on both your weight loss and improved glucose levels. I imagine though that however great our initial improvements may be, our doctors probably want some evidence that such good results can be kept up before committing to reducing medications - which appears to have been so in my case! After all T2 diabetes IS progressive - isn't it... :banghead::banghead:o_O

    It took my GP about three years worth of my stable low end of pre-diabetic HbA1cs to decide that I'd be OK without metformin. which was my only diabetic medication. So he jut stopped prescribing it and I just stopped taking it, and nothing's really changed over the 3+ years since.

    I only ever (early on) lost about half the weight I should, and weight appears to have had little to do with my reduced glucose levels - their major reduction came in the first 2-3 months just from me cutting out all obvious high carb foods, and before I was losing weight. However my GP did also suggest the Atkins diet for weight loss, and using the induction stage of the diet to ensure I was in ketosis was probably what helped most with triggering that loss which happened very quickly. I never actually stayed on the induction daily 20-25g carbs recommended for very long. I've just aimed to keep to below 50g which I sometimes exceed, but I do also go down to 20g or less depending on what or how often I eat I've been more interested in controlling glucose than losing weight, and as an old woman who now feels the cold I tend to want to keep my extra layers of fatty insulation.

    I'm fortunate with my GP as he has always supported me with my LCHF diet and with my glucose testing, though he admits that as a T2 our Practice won't fund my test strips for finacial reasons. But they do now offer low carbing as an option for diabetes management.
     
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  15. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Just to update
    Hba1c now 39
    Doctor has said to come immediately off daplflaglozin and in 2 weeks if self monitoring is okay to.come off bydureon too

    In 3 months repeat hba1c and if good, reduce Metformin too

    Another doctor converted to how reducing carbs can make a massive difference
     
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  16. rosemaree

    rosemaree Type 2 · Well-Known Member

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    Hi @Andydragon, congrats on getting your numbers and weight down! It is fantastic that you found doctors who are willing to work with you to reduce meds. From when I was diagnosed I was asking the doctors about coming off meds as my numbers improve, many went so far as to laugh at me for thinking it was possible. Interestingly enough the main doctor actually prescribed a low carb/keto diet, but at the same time refused to discuss lowering meds and insisted that things would progress fairly quickly because I was so young with such high numbers at diagnosis. After the first month I kept getting lows (under 4mmol) and was feeling awful for it, the doctor begrudgingly agreed I could reduce the one med, but said my number would just shoot up and I'd be back on it in no time. I reduced it, and was just fine. After my follow up hba1c of 42, I wanted to come off more meds. They pretty much told me the same thing as before, laughed at me for asking and wouldn't actually agree to it, so I did some research on peoples experience of dropping the one med and decided to try it on my own. As other people had experienced, my levels went up slightly for the first week or two, then stabilised. I tried another doctor, she told me she didn't have much experience with diabetes and only has one other diabetic patient who just tells her what they need prescribed :facepalm: My next hba1c was still 42, I hadn't been so strict with my diet, so was quite happy. And this doctor had said I can come off the final meds I was on - I wasn't too sure about her, but was happy to come off the meds completely.

    It is really important to just monitor yourself as you go, I did and could see the adjustments and how things stabilised as I came off the meds. I ultimately felt better for it. I unfortunately have slipped up in some other ways and my numbers have crept up a bit, but I am confident I can get them back down by seeing to those little niggly things!

    I have seen quite a few studies where they consider weight loss in relation to blood sugar levels, and while it does have an effect, there are quite a few lifestyle changes that reduce numbers even when weight is maintained. But, if like me, you are overweight or uncomfortable, the weight loss makes you feel better and lowers your numbers so is a win all round!

    Good luck with it all :cat:
     
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  17. Seán mise

    Seán mise · Member

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    That's great advice. Talk to people who have no idea about diabetes, reversing diabetes. I have had a major disagreement with mine
    Excerpt from conversation :
    Fad diets
    Inaccuracies of CGM
    Explanation of HbA1c this after I said I was fed up being patronised by GPs sending you home with a higher prescription and a pat on the back. At this point I got pretty angry.
    I have lost 16 Kg in 3 months, medication halved, A1C from 63 to 49.
    It should have been lower but I didn't renew the DEXCOM CGM without which none of this would be possible.
    I printed out the reports and posted them to the GPs. They can't give out email addresses in C21, and my attached letter Ave report have been scanned into my file and marked 'no further action required".


    I have spoken to several health professionals, one a renowned haemotoligist who played football with me at uni, and who told me GPs know nothing about diabetes. And that I did the right thing by not waiting for 'medical' supervision. Next step- i don't know the implications of cutting medications again (or even if these are the right ones), or how much visceral body fat I have. The scanner in the gym reckons 13% and I am the same weight I was at 16.

    Next a dexa scan at €160, the dexcom for £450 again, and an endocrinologist at £???
    Googling diabetic specialist gets me to clinics for people at the beginning of the journey or with severe complications.

    The Internet has little information beyond info that it can be reversed. But what happens on the last lap.

    But GP s are disinterested in reversing diabetes or have learned nothing new despite NHS/NICE REPORT 2018, thoroughly UNPROFESSIONAL. I have no idea

    Any experiences in reversing long standing 15 years + diabetes warmly welcomed.
    Thank you.
     
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  18. ianf0ster

    ianf0ster Type 2 · Well-Known Member

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    Plenty of people in this forum were T2 diabetic for man years before going Low Carb and putting their HbA1C back in the 'normal' range (or at least putting it in the 'pre-diabetic' range. I think the Southport,UK GP Dr Davin Unwin @lowcarbgp on Twitter now has 80 mostly long term T2 Diabetic patients in remission on Low Carb. Some people have even claimed to have halted/reversed some retinopathy and neuropathy - so it is definitely possible (though not guaranteed).

    Have you read the posts in 'Success Stories and [email protected] ?

    You are wrong about GP's knowing nothing about Diabetes. They know quite a bit about Type1 - it's just that most seem to treat Type 2 as though it was a mild version of Type 1! The major obstacle is the medical top brass who still claim that humans need to eat carbohydrates and that the 'Eatwell Plate', and '5 a Day' actually make people healthy, when for most T2D or Obese it is just the reverse !
     
  19. Andydragon

    Andydragon Type 2 · Well-Known Member

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    Well one of the doctors at the surgery has a specialism in diabetes, so that’s quite helpful. I think I’ve been lucky in all my surgeries that the health care people listen, do all the right blood tests and seem to want to support

    agreed, some nurses have said that it’s progressive and will end up on insulin and pushed the low calorie, diet but they also haven’t pushed back at all against low carb

    so far so good, stopped the Dapagliflozin on Tuesday, so far zero impacts on my blood test levels. So will keep measuring as suggested and all being well will drop the bydureon after the next 2

    Don’t know how long the dapa stays in my system though, there may be an impact to come
     
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  20. OzBlossom

    OzBlossom Type 2 · Well-Known Member

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    So interesting reading this discussion thread. I've found myself at odds with my GP.

    I'm in Australia. I was given a Type 2 diagnosis about 2 1/2 years ago and I'd read up on the research (especially Prof Taylor) and wanted to jump to a low-carb, low cal approach immediately but my GP most strenuously talked me out of it and put me on Metformin 'let's get your sugars stable first and obviously weight loss always should be slow and gradual' (Good lord, that's torture as far as I'm concerned!). In fairness, by blood sugar reading in the doctor's office was HORRENDOUS! Anyway, blood sugars came down quite a bit but not enough and GP gradually making noises about possibly including Exenatide. There was a patch in there of some months where I'd ditched the meds myself and made changes to a ketogenic approach and shown some dramatic blood sugar improvements, at least a bit better than what Metformin had been doing, though no weight loss as I wasn't paying any attention to calories. The GP poo-poohed my improvements on keto and said it would be terrible for my cholesterol and then went a bit quiet when they saw my cholesterol had actually come down and that my HDL/LDL/Triglyceride ratios had improved. Even so, GP accused me of being 'in denial' about my diagnosis and ordered me into going back onto meds. At that stage I did not feel I could go against them. I wasn't in denial at all about the diagnosis, only that increasing medication and inevitable decline had to be my pathway.

    By the way, the diabetes dietician they sent me to at initial diagnosis was diabetic herself (Type 1) and she was clearly aware of all the research and how at odds it was with the institutional stance of 'low fat, lots of complex carbs, it's progressive, you'll probably end up on insulin' etc. She commented that she expected the official guidelines would change in light of the research, but that it might take years.

    So, my Metformin ran out in August this year. After a week re-reading the research and with blood sugars rising, I decided to follow the research, bite the bullet and go all out with very low net carbs, low cal, 16:8 time restricted eating for 12 weeks. I'm halfway through, have lost 6.3kg (it's a bit slow, I'm menopausal), minus 4% body fat and while my early morning blood sugar test is stubbornly 'pre-diabetic' all my other readings pre- and post-meals are 'normal range'. I'm aiming for that first important functional goal of -10% or -15kg. I fully expect that long-term I will need to adhere to a low carb, Mediterranean-type approach.

    I feel really cross that at the time of initial diagnosis my GP was berating me not to follow the research while simultaneously (I later found out) that the NHS in the UK was starting to prescribe a low-cal, low-carb program for newly diagnosed Type 2 patients.

    I can't wait to go back to my GP in a couple more months and very maturely go 'neener-neener' . I'm sure I've had more time and much more motivation to read the research more deeply than my GP and I feel like the evidence of my body is much more important than the official, behind-the-times knowledge.
     
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