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Finally Fired my GP This Morning

Discussion in 'Greetings and Introductions' started by MEValentijn, Jan 7, 2019.

  1. MEValentijn

    MEValentijn Type 2 · Active Member

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    My diabetes is likely secondary to my other disease, Myalgic Encephalomyelitis (ME/CFS). I've had ME for 10 years now, and diabetes for 2 years. My diabetes does not behave itself. Due to the ME, exercise makes my blood sugar higher instead of lower due to screwing up my metabolism for days afterward. Metformin gave me lactic acidosis, and I get into the early stages of diabetic ketoacidosis if I spend a day or more over 13.5 blood glucose.

    The first time I saw my current GP it was for diabetes during onset 2 years ago - I had been sick for a couple weeks in a way that was different from my usual sickness. My fiance had developed Type 1 a few years prior, and suggested using his meter to test me. So yeah, it was really high and I went to the GP. It was high enough that I should have been sent to the hospital at the time, but I was as clueless as my GP so I went home with Metformin, a medication that takes weeks to have an impact on blood sugar but can start the diarrhea fun immediately.

    Despite eating almost no carbs for several days, my blood sugar stayed high, with some constant Metformin-induced diarrhea to aggravate the situation. I bought urine ketone testing strips, and was producing moderate-to-high ketones. I told my GP about that, and she was outraged that I was able to buy ketone-testing strips and insisted it's normal to have elevated levels. She also did not want me testing my blood sugar at home.

    Metformin dosage was doubled, and after a day or two of that some mild symptoms that started at the lower dose got worse - burning shoulder muscles, constant chills, and a burning headache. I looked up side effects for the Metformin, read the warning to stop taking it immediately and did so, and called the GP to leave a message about it. The headache intensified over the next 12 hours despite stopping the meds, culminating in feeling like my brain was dipped in acid and unable to think at all. After that the pain subsided, but it took a few months for cognitive function and my shoulder muscles to return to something that felt normal. When talking to the GP afterward, she denied that Metformin could cause lactic acidosis, even though it's listed as a potential rare side effect.

    She put me on long-acting gliclazide after that, when I flatly refused to take Metformin again. That was causing my blood sugar to drop sharply in the middle of the day, when my levels were pretty normal anyhow, and I was getting false hypos all the time. She made some recommendations to exercise throughout this process, which I also refused, on the basis of having a disease where exercise intolerance is the primary symptom.

    My GP finally gave up and referred me to a lovely specialist, who put me on Victoza which stabilized things for a while. Since my HbA1c was staying good, she sent me back to my GP with a prescription for a year before I'd need to see the GP again. I kept testing my blood sugar every morning, to make sure I wasn't getting into my danger range, especially since my immune system is pretty screwy. My morning ranges did start creeping up from 8-9 to 10-11, but not too high and I assumed I was still going down during the day like I always had been before, so I was literally only testing fasting in the morning.

    Well, it was time to get a Victoza refill a few months ago so I had to see my GP again. She ordered lab work, and my HbA1c had gotten up to 63, after being in the 40's when I was seeing the specialist. Of course, the GP who didn't want me to test was then scolding me for not testing enough. We decided to try Gliclazide again - I'd been reading up and apparently it helps with the production of mature insulin (vs pre-insulin), which might be why it was effective for me previously. It's common for people with mitochondrial disease (which ME closely resembles in many ways) to produce a lot of pre-insulin, which also results in normal or high c-peptide levels, even though there's little mature insulin produced.

    30mg of gliclazide wasn't doing much, so I went back in after a week and she increased it to 60mg. I had a fast drop of 1.5 in 30 minutes the first time I tried it which felt pretty awful, but after that the problem didn't recur. So I've been on that for the past 6 weeks or so, along with the gliclazide. For the first week or two my blood sugar got a lot better, testing before meals and at bed time, but after that it crept up again. For the past 30 days, I'm 9.5 average on fasting in the morning, 7.7 before lunch (this is when the gliclazide kicks in, plus only 10-15 carbs at breakfast), and 8.5 before dinner. 2-4 hours after meals I'm 10-11 on average. I eat 50-100 carbs per day - I get sicker if I go lower now, due to the ME.

    HbA1c was retested New Year's Eve, and is 51 now. Much better, but I'm concerned that the first couple weeks when gliclazide was working better are making the situation look better than it currently is. I also kept testing 3-4 times per day, and showed it to the GP this morning, since she had wanted me to test the last time I went in. And ... she's back to exclaiming that I shouldn't be testing at home. She literally suggested I just test it once per MONTH, even though it was testing only once per DAY which resulted in my blood sugar getting out of control in the first place.

    She thinks the blood glucose levels aren't a problem because HbA1c is on target by Dutch standards, but it sounds like chronically being 10-12 is a problem from what I've read. (If anyone knows of resources which clarify whether or not HbA1c "overrules" chronic daily mild elevations regarding health risks, I'd very much appreciate having a link to them.) So she wanted to wait and see for a couple months. She raised the possibility of increased meds due to the chronic elevations, but then said she wanted me to exercise instead.

    That's when I got annoyed, because 1) it was the 4th or 5th time she's recommended exercise, and I've explained repeatedly that I have ME and can't "exercise" more than I am (cooking breakfast and dinner, shower every 5 days, walking to and from the toilet, tidying up after myself) without getting much much sicker, and 2) before Christmas I'd given her some info from my ME specialist she requested, which thoroughly documents my physical disability and the indisputably badly impaired metabolism which causes it, as well as a GP guide on ME from the NIH/CDC/FDA/etc in the US and highlighted the bit about exercise not helping and potentially making us much sicker. She responded that she didn't believe my specialist, or the hundreds of other ME specialists and ME researchers around the world, and I just need to exercise more.

    So I stood up, started shuffling toward the door, and told her I'd be needing a new GP. I simply can't work with a GP who doesn't believe that ME is a biomedical disease, and that wants to force me to make myself extremely sick before she'll agree to potentially treat my other disease appropriately. And I'm so fed up with the "don't test" attitude. On the downside, there's only one other active GP in town, who works at the same office, which the ****** GP owns.
     
    • Hug Hug x 8
    #1 MEValentijn, Jan 7, 2019 at 10:18 AM
    Last edited: Jan 7, 2019
  2. MEValentijn

    MEValentijn Type 2 · Active Member

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    Apparently my first post has been flagged as spam and I can't edit it. I also don't see a way to send a private message to an administrator (or anyone else) as instructed to sort it out :p
     
  3. Indy51

    Indy51 Type 2 · Expert

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    I've flagged a report to the moderators for you.
     
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  4. briped

    briped Type 2 · Well-Known Member

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    Hi MEValentijn, and welcome to the forum. The spam issue could be because it was your first post. When you've posted a few times (3?) I believe certain restrictions are lifted.
    So what will you do regarding a new GP?
     
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  5. MEValentijn

    MEValentijn Type 2 · Active Member

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    I'll try the other one ... I think the neighbors switched to her after the bad one wouldn't order an x-ray for a foot that turned out to be broken, and she's decent. There's a small city and a huge city nearby if that doesn't work, but I can't sit up long enough to travel far currently.

    Thanks! That didn't occur to me :D
     
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  6. Juicyj

    Juicyj Type 1 · Expert
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    Hello and welcome to the forum.

    I can see that your first post has already been edited so unsure what you are looking to do, if you can explain more what you are looking to do then we can help :)
     
  7. MEValentijn

    MEValentijn Type 2 · Active Member

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    Thanks! I wanted to replace the censored cr-word at the end with "cruddy" as a presumably more acceptable alternative.
     
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  8. Juicyj

    Juicyj Type 1 · Expert
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    At present your post doesn't contain any offensive words, so looks fine to me :)
     
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  9. JoKalsbeek

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

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    Hey @MEValentijn,

    Ah, isn't it lovely when a GP is absolutely clueless? ME and diabetes are both issues that require specialist care, and a GP just isn't in the know enough, more often than not. But since GP's get 10 minutes per patient and have an incredible workload, I suppose it's too much to ask to keep up to date on developments. (Doesn't give one a licence to be an absolute ***** to you, though!) I hope the new doc'll treat you better, even if from the same practice.

    I was misdiagnosed with ME as a teen. Turns out it was "just" vitamin d deficiency (resulting in a spine that's all over the place, thanks to the resulting osteamalacia), and it made me fatigued all the time, not to mention the brainfog, increased depression and all that... So I don't know how ME responds to certain foods, though I remember from the books I read back then that food can make it worse. Can I ask whether you might have experienced keto flu? If you reduce carbs drastically you may feel flu-ish for a week or two. Normally it's days, but when you're like us, as in, with an impaired metabolism, it lasts longer... Wonderful eh. Basically everything hurts, from head to muscles and joints, peeing like you're made exclusively out of water, fatigue factors in as well... Because if it WAS keto-flu, then it's a matter of just "uitzingen", with the aid of salt, bone broth and coconutmilk/water to replenish electrolytes. Once those few weeks are over your bloodsugars'd improve dramatically. IF you would choose that, and IF that was all it was to begin with. There's quite a bit online about how a ketogenic diet can resolve ME (and is happens to often put diabetes in remission), so maybe that's a worth a google? https://www.healthrising.org/blog/2...yndrome-fibromyalgia-ketogenic-success-story/ for instance... No idea if this is helpful or just stuff you already know/tried, but I just remember all too well what it was like not to function at all. It happened again when other stuff cropped up (rheumatism, hypothyroid, diabetes.... I crashed every time before diagnosis).

    If you're interested in keto, check the dietdoctor.com website. If not, well... I hope your new doc'll be of more use to you, because the way things are now really isn't acceptable. Oh, and one more thing: if you do pick up a ketogenic diet (20 grams of carbs a day or less), keep an eye on your bloodsugars religiously, because I do think that with your meds you'd probably hypo. If you feel off, test. And test before a meal and 2 hours after the first bite, if it went up more than 2.0 mmol/l, it was carbier than your body could handle.
    Veel succes er mee!
    Jo

    PS: I vaguely remember ME being an inflammatory disease...? I know I was diagnosed based mainly on the hightened blood sedimentation combined with my symptoms, even if it was the wrong diagnosis. Keto is an anti-inflammatory diet. Which is also why I can just have milk now without my rheumatism turning my hands into fire.
     
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  10. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Hello there. Do you hvae an account already? Your story rings a bell with me.
     
  11. MEValentijn

    MEValentijn Type 2 · Active Member

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    A couple years ago, until I realized that moderators here are selected by popularity contest, and might have access to a lot of information that they shouldn't be trusted with - nothing personal, but the internet leaks like a sieve. I had that account deleted, and I've signed up using much more anonymous data now.
     
  12. MEValentijn

    MEValentijn Type 2 · Active Member

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    Thanks for the welcome, @JoKalsbeek - unfortunately I've got the real ME, and not a misdiagnosis. It is incurable at present, and supplements and diets only help a bit with managing some symptoms. Ketogenic diets don't work for me.
     
  13. DCUKMod

    DCUKMod I reversed my Type 2 · Master
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    Please be aware that the information available to the general Mod population is limited, with only staff of DCUK having any access to any other data, and that is on a strictly controlled and GPDR compliant.

    At DCUK members privacy is taken seriously, and indeed warnings are posted from time to time to remind members their content posted on forum threads is on the internet and therefore visible to the world.
     
  14. MEValentijn

    MEValentijn Type 2 · Active Member

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    That's good to hear. However, you might want to default to hiding birthday data of new accounts, instead of showing it publicly as a default, especially since it is mandatory to enter when registering.
     
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  15. lucylocket61

    lucylocket61 Type 2 · Expert

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    I just want to welcome you and say that I have ME/CFS and have found that controlling my carb intake has helped a fair bit with it. I have had had ME for 20 years now.

    paging @daisy1 for her info.
     
  16. lucylocket61

    lucylocket61 Type 2 · Expert

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    I cant see anyones birthday in their profile.
     
  17. MEValentijn

    MEValentijn Type 2 · Active Member

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    Interesting, when I went in to look at my settings, it was checked to "show day and month of birth" and "show year of birth." Definitely good if even showing it in profiles is disabled, but better to disable it by default in new profiles as well in case visibility in profiles changes at some point (eg, a major forum software update).
     
  18. JoKalsbeek

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

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    Oh, I know you're got the "proper" ME... I just meant I used to read up a lot about it because I supposedly had it, at a time when no-one believed it was an actual condition... Nevermind. I'm backing out.
     
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  19. Tipetoo

    Tipetoo Type 2 · Expert

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    You do not have to put in the correct birthday data if you do not want to, make up another birthday.
     
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  20. daisy1

    daisy1 Type 2 · Legend
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    @MEValentijn
    Hello and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it interesting and helpful.

    BASIC INFORMATION FOR NEW MEMBERS

    Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

    A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

    On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

    The role of carbohydrate

    Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

    If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

    The bad news

    Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

    The good news

    People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

    Controlling your carbs

    The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

    There are two approaches to controlling your carbs:
    • Reduce your carbohydrate intake
    • Choose ‘better’ carbohydrates
    Reduce your carbohydrates

    A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

    The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

    Choosing better carbohydrates

    The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

    Read more on carbohydrates and diabetes.

    Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

    Eating what works for you

    Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

    To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

    The blood sugar ranges recommended by NICE are as follows:

    Blood glucose ranges for type 2 diabetes
    • Before meals: 4 to 7 mmol/l
    • 2 hours after meals: under 8.5 mmol/l
    Blood glucose ranges for type 1 diabetes (adults)
    • Before meals: 4 to 7 mmol/l
    • 2 hours after meals: under 9 mmol/l
    Blood glucose ranges for type 1 diabetes (children)
    • Before meals: 4 to 8 mmol/l
    • 2 hours after meals: under 10 mmol/l
    However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

    Access to blood glucose test strips

    The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:
    • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
    • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

    Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

    You may also be interested to read questions to ask at a diabetic clinic.

    Note: This post has been edited from Sue/Ken's post to include up to date information.
    Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

    • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why

    • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
     
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