- Messages
- 26
- Type of diabetes
- Type 2
- Treatment type
- Non-insulin injectable medication (incretin mimetics)
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.
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.
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