M
ME_Valentijn
Guest
I'm an American living in the Netherlands, with my Dutch fiance. I've been diagnosed ME/CFS since January of 2011. I'm moderately affected, and housebound. I can get out of the house with assistance and a wheelchair or my mobility scooter on a good day.
I was diagnosed with diabetes in January. I started having symptoms after in December, after I caught a flu-like virus that was going around. After several weeks of exhaustion, headaches, and nausea (I missed Christmas!), my Type 1 fiance suggested testing my blood sugar on his old meter. It was 22.2. I went into the GP's office the same day, and was diagnosed with Type 2, due to being over 27 and overweight. Testing was ordered for the next morning, and I was prescribed 500mg of metformin to take once per day. She said she'd schedule me for a followup appointment in a month, but the date she gave me was 8 weeks away.
I was tested fasting the follow morning. Blood glucose was 16.8 and A1c was 88. My blood sugar went down a little bit, partially due to restricting my carbs quite a bit. For the first week I was usually over 13.5 for most of the day. I ordered ketone testing strips, and almost always had at least traces of ketones, frequently going up to "moderate" (++) levels, and even "high" (+++) once. And was still feeling awful - crushing exhaustion, headaches, peeing all day and night, and usually too nauseated to want to eat anything.
So we called the GP again a week after diagnosis. My blood sugar managed to do a fanastic spike of 18.5 in her office 90 minutes after lunch, even though the identical meal (27 carbs) had my blood sugar going down a bit to 10.9 at the same time on the previous day. She tested my urine for ketones, and got trace amounts. Then she called an endocrinologist who specializes in complicated Type 2 cases at a nearby hospital, and ordered GAD auto-antibody testing. C-peptide has not been tested. She also added 30mg of Gliclazide at that point.
Blood pressure was tested, which is always fun ... usually my pulse is too weak for a blood pressure monitor to detect every beat, so it can't calculate it and gives an error message. The GP gave up after a couple tries, and did it by hand, finding it to be 130/80. My usual is about 110/90 (narrow pulse pressure). But the 130/80 wasn't too surprising ... I tested a couple times when my headache was bad and blood sugar was high, and was getting 150/100 intermittently between the accustomed "ERROR" messages.
The GP was upset that I was usually testing my blood sugar 4 times per day on the fiance's old meter, and thought I should do it much less (or preferably not at all apparently). She was also was very much not in favor of testing urine with ketone strips. She claimed that everyone produces detectable amounts of ketones in their urine, and that it can never cause problems in Type 2.
Nonetheless, she was taking things more seriously after seeing that glucose spike for herself. Though I think it surprised me more than it did her, since I expected it to be the same as it had been the previous day. First time I've say "holy ****!" in a doctor's office anyhow, when the 18.5 reading came up
So the next appointment was 4 days later, quite an improvement over the initial two-month blow-off. Values between breakfast and bed time were going down a bit, but going up at bedtime, staying high in the middle of the night when I tested, and always still high in the morning. So more metformin was added.
When I had first started the 500mg metformin a couple weeks earlier, my arms had started burning intermittently. I assumed it was a diabetic neuropathy thing. But when I went up to 1000mg, it became a constant problem, along with my shoulders getting weak, arms aching in addition to burning, a very nasty headache, leg muscles spasming, more exhaustion, and my whole body being cold for several days. I started to suspect meds were causing the problem, and found an English manufacturer's insert for my metformin - they were the symptoms of lactic acidosis. So I stopped the metformin and called the doc to let her know, as instructed in the insert.
I was very sick at that point, and probably should have gone to the hospital. But I'm used to sticking things out with ME/CFS and I was feeling too sick and exhausted to consider going anywhere, including the hospital. I probably wasn't in a good state of mind for making rational decisions Anyhow, I couldn't keep awake in the morning so went back to bed, slept a few hours, and felt a little better. Most symptoms wore off over the rest of the day, except for a nasty burning headache that felt like my brain had been dipped in a vat of acid. That slowly improved over the next couple days as well, though trying to think at all brought back the burning. So I had a lot of couch time in front of mindless TV programs. Though my shoulders still haven't recovered fully, after nearly two weeks.
The GP called me back a few days later, and was in complete denial that metformin can cause symptoms of lactic acidosis. She'd tested my thyroid, liver, and kidney function at diagnosis, to make sure metformin was safe. Which was a bit ironic, since she was running so many tests to see if a drug was safe, without bothering to see if I even had the disease (Type 2) that the drug is helpful for. I flatly rejected her suggestion to try metformin again at the lower dose. So she upped my gliclazide to 60mg, and suggested I watch out for going hypo, a few minutes after reiterating her earlier request to test my blood sugar less, and not test on a daily basis A follow-up appointment was scheduled for a week later.
To be continued!
I was diagnosed with diabetes in January. I started having symptoms after in December, after I caught a flu-like virus that was going around. After several weeks of exhaustion, headaches, and nausea (I missed Christmas!), my Type 1 fiance suggested testing my blood sugar on his old meter. It was 22.2. I went into the GP's office the same day, and was diagnosed with Type 2, due to being over 27 and overweight. Testing was ordered for the next morning, and I was prescribed 500mg of metformin to take once per day. She said she'd schedule me for a followup appointment in a month, but the date she gave me was 8 weeks away.
I was tested fasting the follow morning. Blood glucose was 16.8 and A1c was 88. My blood sugar went down a little bit, partially due to restricting my carbs quite a bit. For the first week I was usually over 13.5 for most of the day. I ordered ketone testing strips, and almost always had at least traces of ketones, frequently going up to "moderate" (++) levels, and even "high" (+++) once. And was still feeling awful - crushing exhaustion, headaches, peeing all day and night, and usually too nauseated to want to eat anything.
So we called the GP again a week after diagnosis. My blood sugar managed to do a fanastic spike of 18.5 in her office 90 minutes after lunch, even though the identical meal (27 carbs) had my blood sugar going down a bit to 10.9 at the same time on the previous day. She tested my urine for ketones, and got trace amounts. Then she called an endocrinologist who specializes in complicated Type 2 cases at a nearby hospital, and ordered GAD auto-antibody testing. C-peptide has not been tested. She also added 30mg of Gliclazide at that point.
Blood pressure was tested, which is always fun ... usually my pulse is too weak for a blood pressure monitor to detect every beat, so it can't calculate it and gives an error message. The GP gave up after a couple tries, and did it by hand, finding it to be 130/80. My usual is about 110/90 (narrow pulse pressure). But the 130/80 wasn't too surprising ... I tested a couple times when my headache was bad and blood sugar was high, and was getting 150/100 intermittently between the accustomed "ERROR" messages.
The GP was upset that I was usually testing my blood sugar 4 times per day on the fiance's old meter, and thought I should do it much less (or preferably not at all apparently). She was also was very much not in favor of testing urine with ketone strips. She claimed that everyone produces detectable amounts of ketones in their urine, and that it can never cause problems in Type 2.
Nonetheless, she was taking things more seriously after seeing that glucose spike for herself. Though I think it surprised me more than it did her, since I expected it to be the same as it had been the previous day. First time I've say "holy ****!" in a doctor's office anyhow, when the 18.5 reading came up
So the next appointment was 4 days later, quite an improvement over the initial two-month blow-off. Values between breakfast and bed time were going down a bit, but going up at bedtime, staying high in the middle of the night when I tested, and always still high in the morning. So more metformin was added.When I had first started the 500mg metformin a couple weeks earlier, my arms had started burning intermittently. I assumed it was a diabetic neuropathy thing. But when I went up to 1000mg, it became a constant problem, along with my shoulders getting weak, arms aching in addition to burning, a very nasty headache, leg muscles spasming, more exhaustion, and my whole body being cold for several days. I started to suspect meds were causing the problem, and found an English manufacturer's insert for my metformin - they were the symptoms of lactic acidosis. So I stopped the metformin and called the doc to let her know, as instructed in the insert.
I was very sick at that point, and probably should have gone to the hospital. But I'm used to sticking things out with ME/CFS and I was feeling too sick and exhausted to consider going anywhere, including the hospital. I probably wasn't in a good state of mind for making rational decisions
Anyhow, I couldn't keep awake in the morning so went back to bed, slept a few hours, and felt a little better. Most symptoms wore off over the rest of the day, except for a nasty burning headache that felt like my brain had been dipped in a vat of acid. That slowly improved over the next couple days as well, though trying to think at all brought back the burning. So I had a lot of couch time in front of mindless TV programs. Though my shoulders still haven't recovered fully, after nearly two weeks.The GP called me back a few days later, and was in complete denial that metformin can cause symptoms of lactic acidosis. She'd tested my thyroid, liver, and kidney function at diagnosis, to make sure metformin was safe. Which was a bit ironic, since she was running so many tests to see if a drug was safe, without bothering to see if I even had the disease (Type 2) that the drug is helpful for. I flatly rejected her suggestion to try metformin again at the lower dose. So she upped my gliclazide to 60mg, and suggested I watch out for going hypo, a few minutes after reiterating her earlier request to test my blood sugar less, and not test on a daily basis
A follow-up appointment was scheduled for a week later.To be continued!
Last edited by a moderator:
. Tagging 
I brought up the possibility of MELAS and she frankly admitted she had no idea what I was talking about, which is something I can respect - unlike her various statements regarding diabetes thus far 
But she referred me to the Type 2 endocrinologist at the local hospital to look into diagnosis. Unfortunately his office decided to schedule me an appointment with a diabetes nurse instead, so I cancelled that. Maybe the nurse would be useful in general, especially since my GP knows nothing about diabetes, but it's not going to help with getting a diagnosis for a genetic cause of diabetes!
