1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2020 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Anyone stopped medication against Doc/nurses advice?

Discussion in 'Type 2 Diabetes' started by Shoelace1973, Oct 10, 2016.

  1. Shoelace1973

    Shoelace1973 Type 2 · Active Member

    Messages:
    42
    Likes Received:
    35
    Trophy Points:
    58
    Hello

    I was diagnosed type 2, a couple of months ago, and put straight on Metformin - which is permanently screwing my stomach - even the slow release ones. My nurse has been adamant, on day one & again today that I can't control with diet & exercise - and won't let me even try! As well as Metformin I have now been prescribed something else.

    My question, has anyone stopped taking medication, against 'professional' advice and successfully controlling type 2 with diet & exercise, etc?

    Thank you.
     
    • Agree Agree x 1
    • Hug Hug x 1
  2. bulkbiker

    bulkbiker Type 2 · Oracle

    Messages:
    15,744
    Likes Received:
    11,074
    Trophy Points:
    298
    Can't give you medical advice but in a one word answer....

    Yes


    although in my case I simply didn't ask their advice...

    I would however say that I am an extreme low carb dieter and have been intermittent fasting from day 1 with more extended fasts as time has gone on.
     
    • Agree Agree x 1
    • Winner Winner x 1
    • Informative Informative x 1
  3. bulkbiker

    bulkbiker Type 2 · Oracle

    Messages:
    15,744
    Likes Received:
    11,074
    Trophy Points:
    298
    What are your blood sugar levels like? It would be very important to monitor those.
     
    • Useful Useful x 1
  4. sally and james

    sally and james Family member · Well-Known Member

    Messages:
    1,081
    Likes Received:
    1,828
    Trophy Points:
    178
    @Shoelace1973 wrote, "My nurse ...... won't let me even try!", with regards to trying diet and exercise, rather than drugs.
    In my personal opinion, it is not up to any medic to allow you, or not allow you to do anything. They are there as professional advisors, just like, for example, a solicitor. Your solicitor may advise you that you could sue Mr X and that you have a good case. This doesn't mean you have to do it, you may feel that you just couldn't take the stress and are perfectly entitled to say no.

    Your nurse has probably never come across anyone who could deal with diabetes by diet and exercise, or, for some reason doesn't think that you could do it. You must have had high blood sugars to be diagnosed in the first place. Are you confidant that you can make sufficient alterations to your diet and lifestyle to change this? The support of those you live with, a bit of imagination and a willingness to make changes are all vital.

    But to answer your question, YES, my husband dropped Metformin of his own accord, against advice, while adopting a low carb lifestyle. His blood sugars have been non-diabetic ever since.
    Sally
     
    • Agree Agree x 2
    • Like Like x 1
    • Informative Informative x 1
  5. phil1966

    phil1966 Type 2 · Well-Known Member

    Messages:
    661
    Likes Received:
    5,849
    Trophy Points:
    158
    Personally, I'd never go against medical advice to the extent of not taking medication that is being prescribed as your health team need to know how you are reacting to your meds. If they think you are on certain meds but you're not taking them without letting them know then how are they supposed to work out a course of treatment? For example, if you are prescribed metformin but don't take it and your diabetes gets worse, they're going to think either the dose needs to be increased or you need something else, which could be totally inappropriate.

    I'm not saying you should blindly follow what they tell you without questioning it, but just be honest and open with them.

    For example, my diabetes is under good control and I'm aiming to get rid of my meds, so I went to the docs and talked to them about it. With their agreement and support, I'm reducing my dose by half and they're doing another hba1c in 3 months to see I still maintain the same level of control. If I do, then I'll be able to try stopping them completely and again have another hba1c to see how that works.

    Maybe I'm lucky and have an unusually good health care team, but I always find being honest and open is the best way forward
     
    • Agree Agree x 2
  6. gunship

    gunship Type 2 · Newbie

    Messages:
    1
    Likes Received:
    0
    Trophy Points:
    41
    I just take one in morning & one in evening & stomach is now fine as are blood sugars on every blood test, last one was 5.6
     
    • Informative Informative x 1
  7. Oldvatr

    Oldvatr Type 2 · Expert

    Messages:
    5,105
    Likes Received:
    3,067
    Trophy Points:
    198
    Neither the GP nor the nurse controls your diet or exercise regime, unless you are in hospital under their direct care, These are up to you to organise. They may advise regimes for you to follow, but it is not mandatory to do so,

    I have often experimented with my prescribed medication, altering the timing and doses and I do so without consulting the GP. However, whan I discover a regime that provides a benefit to me, I then write to my GP and get my scrip changed to the new requirements so it becomes formal. I dropped my statins on several occasios when they caused me discomfort, and my GP has now noted in my notes that I am no longer to be offered them. I have recently made changes to my scrip in terms of BP meds, Heart meds, and Diabetic meds, and this was a short phone call to get the scrip changed before monthly renewal, I have a review tomorrow at which this will be formalised. I try to gather evidence to justify these changes by showing an improvement either in lab tests or bgl readings, or BP readings.

    I also keep my GP informed of any supplements I am taking, and recently he added a vit B12 blood test to my annual review to see if I needed supplements. I do not but it is worth checking if on Metdormin.

    I currently have a pot for discarded Gliclazide tabs and a collection of over 100. I could drop 3 of my 4, but so far have only formally reduced by 2. I may choose to split my remaining dose but I may drop a third tab in my review tomorrow. Depends on what HbA1c target we end up setting for the coming months
     
  8. Shoelace1973

    Shoelace1973 Type 2 · Active Member

    Messages:
    42
    Likes Received:
    35
    Trophy Points:
    58
    Thank you for your replies.

    I suppose what I'm really saying is I don't have the guts to go against 'professional' advice - they should know best etc.!

    My blood sugars are around 6, before eating. But in a bit of a catch 22 situation, as any 'good' stuff, vegetables etc. just goes straight through me, (because of Metformin) so am finding it difficult to eat healthily - or trying low carb, whilst on the tabs.

    I don't really want to spend the rest of my life living on 'chemicals', thinking 'what if'.
     
  9. bulkbiker

    bulkbiker Type 2 · Oracle

    Messages:
    15,744
    Likes Received:
    11,074
    Trophy Points:
    298
    Sounds very similar to my experience. It's your decision....
     
  10. sally and james

    sally and james Family member · Well-Known Member

    Messages:
    1,081
    Likes Received:
    1,828
    Trophy Points:
    178
    Ok, so say you decided, all by yourself, to drop the Met for a month. Would it kill you? Would it even injure you in any noticeable way? Probably not. I'm presuming you have a meter, have strips and know how to use it and that you understand what is meant by a low carb diet and have the facilities and family support to carry it out. Keep a detailed diary, recording what you eat, symptoms, side effects and your blood sugars on waking and before and after every meal. If you need advice on any of these issues, please ask.
    After only a few days, you should be able to begin to assess if you are being successful. You can always abandon the trial at any moment if things aren't looking good. If things work, you can carry on for a bit longer, then go and tell (or write to) your GP explaining your success and that you have given up the drugs. After three months, ask for an HbA1c. This will show you if more drugs/work is necessary.
    Just a suggestion, it's your body.
    Sally
     
  11. Hiitsme

    Hiitsme Type 2 · Well-Known Member

    Messages:
    2,376
    Likes Received:
    13,804
    Trophy Points:
    198
    Hi @Shoelace1973
    I was also started on Metformin but very fortunately for me I reacted very violently to it as I think you are. Again I was fortunate as my GP told me to stop (I did only manage 3 days) with the idea of either trying again in a couple of weeks or going straight onto insulin. I pleaded with being allowed to try with diet, weight loss and exercise. I did put my plan into writing which I think was helpful. I had been diagnosed with a fasting reading of 18 and HbA1c of 95, both very high. I was warned it wouldn't work but was given 3 months by which time my HbA1c was 50 and encouraged by GP to continue with what I was doing as he was then convinced from my readings my next HbA1c would be even lower.
    My suggestion to you is to put it in writing saying very clearly that this is what you want to try. I wrote about diet, weight loss and exercise, my plans. Ask for a 3 month trial and say if your results aren't acceptable then you would be willing to reconsider using medication. I had wondered if I was type 1 and I knew if that was the case I would need to be on insulin. I had been very fortunate to have been given a monitor and test strips. If your GP knows you are testing you can ask what levels you should be aiming for. I recorded everything and showed to my GP so he could see how I was doing on a day by day basis. He even eventually agreed with me it was the carbs that raised my blood sugar levels so cutting those was helping. My GP had never come across a diabetic with and HbA1c as low as mine is now.
     
    • Agree Agree x 1
    • Winner Winner x 1
  12. Brunneria

    Brunneria Other · Moderator
    Staff Member

    Messages:
    20,541
    Likes Received:
    34,183
    Trophy Points:
    298
    I've done LOTS of things without my docs knowledge - including forgetting to take certain tablets for weeks at a time (this was before I started taking my health a bit more seriously!)

    I have stopped taking Metformin because the side effect it gave me was an intolerable taste in my mouth. I told the doc the next time I saw him, and he noted on my records that I couldn't tolerate it.
    I started testing my blood glucose directly against the advice of the nurse who believes that 'only T1s need to test'. Which is an absurd piece of advice and one I rejected on principle.
    I ran a whole series of self tests on my blood pressure, both on and off my blood pressure tablets (salt, coffee, effectiveness of different doses...) which ended up me identifying the cause of my hypertension and eliminating it.
    I have been playing around with diet, exercise and nutrition for decades - you know how the advice is always 'consult with your doc before embarking on any diet and exercise regime'? Well if I had done that, I would have had weekly appointments for the last 30 years!!!

    Does my doc like this? Nope.
    Does he get a say in it? Nope.
    Do I feel that I have made the right decisions on occasion and improved my own health at times, by taking responsibility for my own diet and lifestyle? Yup.
    Do I listen to his advice, weigh the pros and cons, do my research and act with due care and caution? Yup.
    Would I recommend anyone else doing this kind of thing? Hmm. How much research and self education are they willing to do? How much Common Sense are they willing to apply? Are they willing to take things slowly, carefully and monitor all the changes as they occur? Are they willing to record their progress and results meticulously? Are they willing to get straight down to their doc at the first sign that they are on the wrong track or their health is suffering as a consequence?
     
    • Agree Agree x 2
    • Like Like x 1
    • Winner Winner x 1
    • Useful Useful x 1
  13. paganlass

    paganlass Type 2 · Well-Known Member

    Messages:
    125
    Likes Received:
    50
    Trophy Points:
    68
    I was diagnosed in July 2016. The doc said straight on metformin as my hba1c was 94. I refused point blank and said I would try diet and exercise first. I have since got myself a bg monitor and have gone low carb. I have lost 20 lb and my bg is in the 5.2 to 6.7 range before and after a meal. So yes u can do it with diet and exercise. Doctors are not always right.
     
    • Like Like x 2
    • Winner Winner x 2
    • Agree Agree x 1
  14. tigerlily72

    tigerlily72 Type 2 · Well-Known Member

    Messages:
    502
    Likes Received:
    624
    Trophy Points:
    133
    Do you know what your Hba1c was when you were diagnosed? My DSN told me that if it's over 53 then that's the point at which meds are considered and prescribed.

    I often run at anything from 6 ish (especially in the morning and on waking) to around high 8's/occasional 9's but am diet controlled. I think it would help to find out what your numbers/readings were. My DSN also said that if I got to the point of tipping over the recommended Hba1c the meds are put into place to stabilise and lower blood sugars and suggested they might then be stopped.

    Oh, and I have stopped meds without consulting my Dr first. I had been on anti depressants continuously for 2 years until recently and I decided I would see if I could manage without them. I'm doing fine and she asked how I did it and I told her I took them on alternate days before stopping them and weaning myself off. I didn't get a telling off and she seemed genuinely pleased. She IS a really good Dr so I'm lucky.

    Try speaking to a Dr or nurse at your practice and be honest and let them know how you feel. You never know - they may just surprise you with their response! :)
     
  15. Shoelace1973

    Shoelace1973 Type 2 · Active Member

    Messages:
    42
    Likes Received:
    35
    Trophy Points:
    58
    I have been testing my BG at home, but the nurse said not to take much notice, as it's the Hba1c they do, which only counts!

    Presumably the lower I can keep my BG, the lower the Hba1c will be?
     
  16. sally and james

    sally and james Family member · Well-Known Member

    Messages:
    1,081
    Likes Received:
    1,828
    Trophy Points:
    178
    Absolutely!
    Sally
     
    • Agree Agree x 1
  17. Shoelace1973

    Shoelace1973 Type 2 · Active Member

    Messages:
    42
    Likes Received:
    35
    Trophy Points:
    58
    Hba1c was 93 on 1 Sep, to be tested again in Dec. Blood glucose was 9.7, but I always seem to be high first thing in the mornings!
     
  18. Shoelace1973

    Shoelace1973 Type 2 · Active Member

    Messages:
    42
    Likes Received:
    35
    Trophy Points:
    58
    Blood glucose has come down from original 21 in August, to the 9.7 in Sep.
     
  19. psignathus

    psignathus Type 2 · Well-Known Member

    Messages:
    180
    Likes Received:
    202
    Trophy Points:
    83
    yes I have ditched statins and refused insulin. I went lo carb (keto at first) and sorted my hba1c down to 5.3%. What I would not do though is tell your health care team lies. Simply tell them what your doing, tell them what you expect to happen and ask for regular tests to track progress. this requires a certain level of assertiveness but not rudeness as ultimately you need them for blood tests.
     
    • Useful Useful x 1
  20. donnellysdogs

    donnellysdogs Type 1 · Master

    Messages:
    13,197
    Likes Received:
    12,460
    Trophy Points:
    298
    If you need a compromise to soften the stance taken just add it in a way of... If my diet and exercise isn't enough then of course I will reconsider taking a drug for diabetes..

    There are two types of metfornin... One is meant to be gentler on stomach.. Which tablet are you on? I think one would say slow release on packet or instructions.. So uts either Metformin SR or just metformin.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook