Night Highs

[ME_Valentijn]

I'm currently eating about 60-65 carbs per day, 20 per meal, which is the minimum I can manage without getting sicker (chronic illness, impaired metabolism). This has gotten my pre-lunch, 90 minute post-lunch, and pre-dinner values down to a reasonable level of around 5-7. But at bedtime, my blood sugar has usually gone up to 8-11. Testing at midnight-1am on a few occasions showed blood sugar going up a bit or staying about the same. In the morning it's always 10-11, which gives me a nasty headache until it's gone down for a while.

Any ideas what might be happening with my night values? I often eat a similar portion of dinner leftovers for lunch, so it shouldn't be the food which is a problem. I'm on 120mg of Gliclazide. I've also been taking a low dose of Yohimbe for years in the morning and early afternoon to treat low pulse pressure, and it sounds like that might have an impact on blood sugar. Yohimbe has a fairly short half-life, so the effects wear off around bedtime, and that might explain why my values can get a bit lower during the day. I might try a dose at bedtime tonight to see what happens. I also take 600mg slow-release NAC three times per day, and about 1g of fish oil three times per day.

I sampled my blood sugar several times overnight to see what was happening. I had more carbs than usual (about 35) due to ordering delivery for dinner, though I get the same rise at bedtime with 20g of carbs at dinner:
8:00 - 10.3 (out of bed)
1:00pm - 5.9 (before lunch)
7:00pm - 5.7 (before dinner)
8:00pm - 8.9
9:00pm - 9.7
10:00pm - 10.2 (bedtime)
3:00am - 8.7
5:00am - 9.2
6:00am - 9.3
7:00am - 9.7
8:30am - 9.3 (out of bed)
9:30am - 10.4 (still fasting, not hungry at all)
10:30 - 8.7 (before breakfast)

 

[azure]

@ME_Valentijn I don't know anything about Yohimbe at all so can't comment on whether that's involved. Ignoring any possible,effects from that drug. I would ask if you maybe needed a small dose of basal insulin to control your sugars overnight.

 

[TorqPenderloin]

@ME_Valentijn I don't know anything about Yohimbe at all so can't comment on whether that's involved. Ignoring any possible,effects from that drug. I would ask if you maybe needed a small dose of basal insulin to control your sugars overnight.

This.

My general mindset is that if it's legal and able to be purchased from a store without a doctor's note, it's probably not going to make a huge difference....in my experience, that holds true with Yohimbe.

What you almost certainly need is insulin. Gliclazide causes your insulin-producing beta cells to work harder and produce more insulin, and it's only effective as long as you have living beta cells. As a type 1/1.5, your beta cells are being killed off by your body which makes the Gliclazide less effective over time....the result is hyperglycemia.

 

[ME_Valentijn]

My general mindset is that if it's legal and able to be purchased from a store without a doctor's note, it's probably not going to make a huge difference....in my experience, that holds true with Yohimbe.

It can't be purchased in the Netherlands, because it is capable of causing people problems, particularly if they already have high blood pressure. At the time that it was banned for sale it was presumed that the prescription market would fill the gap, which of course did not happen. Not surprising since even some pretty basic meds are not sold here (Metformin SR, Tetralysal, etc). Yohimbe can still be legally transported and possessed here though, so I buy it when I'm in the US visiting family and bring it back with me. There's also been a study in mice showing it to lower blood sugar significantly, though as always it's not clear how applicable that is to humans.

As a type 1/1.5, your beta cells are being killed off by your body which makes the Gliclazide less effective over time....the result is hyperglycemia.

I'm probably not Type 1. With a genetic mitochondrial cause for 1.5 (MODY), there wouldn't be destruction of beta cells - they might just lack the energy to do much. I'm in the process of getting more testing and hopefully a clear diagnosis, but if I have the cause for diabetes that I think I have, the research indicates that it's pretty hit or miss in whether or not insulin is needed.

Unless things improve dramatically in the next few days, I'll ask my GP to test C-peptide instead of the current approach of indefinitely increasing Gliclazide one step at a time to see if it eventually does something I see her again on Monday. I also should be getting my GAD results then.

 

[TorqPenderloin]

It can't be purchased in the Netherlands, because it is capable of causing people problems, particularly if they already have high blood pressure. At the time that it was banned for sale it was presumed that the prescription market would fill the gap, which of course did not happen. Not surprising since even some pretty basic meds are not sold here (Metformin SR, Tetralysal, etc). Yohimbe can still be legally transported and possessed here though, so I buy it when I'm in the US visiting family and bring it back with me. There's also been a study in mice showing it to lower blood sugar significantly, though as always it's not clear how applicable that is to humans.

I'm probably not Type 1. With a genetic mitochondrial cause for 1.5 (MODY), there wouldn't be destruction of beta cells - they might just lack the energy to do much. I'm in the process of getting more testing and hopefully a clear diagnosis, but if I have the cause for diabetes that I think I have, the research indicates that it's pretty hit or miss in whether or not insulin is needed.

Unless things improve dramatically in the next few days, I'll ask my GP to test C-peptide instead of the current approach of indefinitely increasing Gliclazide one step at a time to see if it eventually does something I see her again on Monday. I also should be getting my GAD results then.

I'm not telling you to stop using Yohimbe if you feel it's working. However, I can say with near 100% confidence that it's not working well enough to drop your blood sugar 3-4mmol/l. If it were that effective, everyone in America (here where I live) would be taking it.

If you're referring to this study: http://file.scirp.org/pdf/Health20121200010_28763484.pdf the study is all but useless. A few points:
-it's a study about 35 rats divided into 5 groups
-the group that took 20mg/kg/ml of yohimbe started with 10mg/dl higher avg blood sugar (96 vs 86)
-The measured effects are useless as the end result was 80.5 mg/dl for the group that took water and 69.86 for the group that took yohimbe. Both of those numbers are considered well below the levels of even pre-diabetes.

Type 1.5 and MODY are not the same thing. Type 1.5 or LADA literally stands for Latent Autoimmune Diabetes in Adults. It is completely different from MODY which stands for Mature Onset Diabetes in the Young

 

[ME_Valentijn]

If you're referring to this study: http://file.scirp.org/pdf/Health20121200010_28763484.pdf the study is all but useless. A few points:
-it's a study about 35 rats divided into 5 groups
-the group that took 20mg/kg/ml of yohimbe started with 10mg/dl higher avg blood sugar (96 vs 86)
-The measured effects are useless as the end result was 80.5 mg/dl for the group that took water and 69.86 for the group that took yohimbe. Both of those numbers are considered well below the levels of even pre-diabetes.

Good points - I'd noticed that the Yohimbe group started out higher, but not the other stuff. And was a bit suspicious of the statistical significance, given that so many variables (doses and treatments/non-treatment) were being compared. Though I still plan to be my own rat tonight, and see what happens if I take a dose of Yohimbe at bed time ... good to rule it out conclusively, at least

Type 1.5 and MODY are not the same thing. Type 1.5 or LADA literally stands for Latent Autoimmune Diabetes in Adults. It is completely different from MODY which stands for Mature Onset Diabetes in the Young

Ah, I think the first forum I tried called them both Type 1.5. Though what I've got might not be MODY either, strictly speaking. Basically I've had a variety of symptoms over the years which are very uncommon and would only be expected to occur together if I have MELAS. It's genetic, but mitochondrial, and often doesn't have the young onset or consistent pattern of the same type of diabetes in a family with a non-mitochondrial MODY. But maybe that's a better discussion for another thread

 

[ME_Valentijn]

I tried taking a 3rd dose of Yohimbe last night, and remembered why I usually don't do that. It's too stimulating and makes it hard to sleep (unless I've got intractable tachycardia even when lying down and/or am going hypoxic - then it makes it easier to sleep). Still, worth it once to see what happens.

I took it 1 hour before bedtime, since I measure glucose at bedtime and Yohimbe seems most effective about 1 hour after I take it. Bedtime value was 7.2, which is the lowest it's ever been. 2nd lowest value was 7.5 a couple days ago, and my usual is 8-11 at bedtime. 3am value was 7.5, down from 8.7 yesterday at 3am. This morning it's 9.7 fasting, which is a tie for the lowest it's ever been, though not much lower than my usual 10-11. Yohimbe would have worn off by this point anyhow.

So at this point, a Yohimbe effect is looking plausible. Though it's hard to tell since I haven't done much 3am testing, and I'm not interested in taking Yohimbe again at night! Stage 2 of my Yohimbe test is to not take my morning dose of it, while still taking Gliclazide and my other supplements. My pre-lunch glucose levels are usually 5-7 after 20 carbs in the breakfast period, so it'll be interesting to see if that goes up when skipping the Yohimbe.

 

[ME_Valentijn]

My pre-lunch glucose, after my usual 20 carbs and without having Yohimbe this morning, is 5.4, which is quite normal for me. So Yohimbe is probably not the reason my day-time values are decent while my night-time values are high.

Oh well Any other ideas?

 

[azure]

Ask about the basal @ME_Valentijn

Even if you only needed a tiny dose, it may still be beneficial.

 

[ME_Valentijn]

Ask about the basal @ME_Valentijn

Even if you only needed a tiny dose, it may still be beneficial.

Any idea if that would that typically involve stopping or reducing the Gliclazide? My GP wouldn't have any idea, though I suppose she might call an endocrinologist to ask.

 

[azure]

Any idea if that would that typically involve stopping or reducing the Gliclazide? My GP wouldn't have any idea, though I suppose she might call an endocrinologist to ask.

I don't know @ME_Valentijn

Seeing a specialist would be a good idea so that you get expert advice, definitely.

 

[ME_Valentijn]

Mostly making a note of the procedures given to Dutch GPs here, regarding starting insulin, so I can keep track of it in real English, versus trying to reread it in Google-Translate-English):

• Insulin therapy is indicated if education (hah) and maximum combined dosage of metformin and a sulphonylurea do not result in achieving target values
  • Target values for fasting are 4.5-8.0 (mine is 10-11)
    
  • Target values for 2 hours after meals are less than 9.0 (mine is under 8 after lunch, but 8-11 after dinner)
    
  • Preferred sulphonylurea is Gliclazide, maximum dose is 240mg
  • Maximum Metformin dose: not applicable since I can't take it
• Insulin therapy can be provided by primary care providers if they are specifically competent, and with a good arrangement of delegation and teamwork
  • GP is in charge, and coordinates and delegates
    
  • trained (diabetes?) nurse instructs and supervises use of insulin and monitoring
  • dietician (been there, done that)
    
  • internist is available for guidance over phone consults, or referrals
• In the start-up phase of using insulin, education is important. This includes diet, exercise (can't), weight loss, therapy compliance, measuring blood glucose, making glucose day curves, and injection instructions
• With long-term strongly elevated glucose of A1c > 85 (mine was 88), the GP must be aware of any retinopathy, and have it treated if necessary, before starting insulin
  • My eyes haven't been assessed yet. Vision has been a little sharper at longer-distances, and I now have trouble focusing on things within two feet of me
• Starting insulin: it can be administered one or more times per day, alone or in combination with oral meds
  • It's recommended to start with NPH insulin once daily, added to oral meds
  • With once-daily insulin, it's adjusted based on fasting levels
  • Day curves aren't necessary unless there's a discrepancy between fasting glucose and A1c
  • If a good and/or stable fasting glucose is achieved, A1c is tested again in 2 months
  • Depending on the stability of the fasting values, it's determined to test fasting glucose every 3 months and A1c every 3 or 6 months
  • The once-daily injection schedule is easy to follow, with relatively little weight gain and small risk of hypoglycemia
• Proceed as follows:
  • Continue Metformin and potentially (when?) sulphonylurea
  • Start with 10 U NPH insulin between dinner and bedtime
  • Determine the fasting glucose daily, and raise the insulin dose until a value of 4.5-8.0 is reached
• Change the dose every 2 to 3 days according to the following schedule:
  • fasting blood glucose >10 - increase by 4 U
  • fasting blood glucose 8 -10 - increase by 2 to 4 U
  • fasting blood glucose 4.5-8.0 - continue the same dosage
  • fasting blood glucose <4.5 or nocturnal hypoglycemia - decrease by 2 to 4 U

So first we have to raise my Gliclazide from 120mg to 240mg. At my current rate of increasing by 30mg per week, that'll take another month, unless the GP switches to the 80mg pills, in which case it would take two weeks. Then insulin might be considered. But that will be delayed by getting my eyes checked out first, because otherwise they don't want to do that until my blood sugar has normalized.

I'm fed up with having a headache every morning from the high blood sugar, especially when it's lasting half the day. Not looking forward to another 2-4 weeks of that, minimum

 

[ME_Valentijn]

Another GP visit today. She assured me that it's normal to take a year to get blood sugar values down to a normal range, and it's no problem at all if I'm high at night for another 3-6 months.

I was less than impressed, and told her about the headaches I get every morning when my blood sugar is 10-11. Yeah, not a normal diabetes thing, but it's a big problem for me. Of course, she denied that there could be any connection. Apparently I just sleep differently now that I have diabetes She also doesn't understand how false hypos are a problem, since they aren't real hypos. But even after I get a few carbs and the shakiness passes, I'm still weak for an hour or more afterward. I could barely walk last night to get some dinner plates from the kitchen, after apparently spending too much time around 4.3-4.8 after lunch.

She suggested this was due to anxiety from testing. I pointed out (again) that the nasty symptoms are there BEFORE I do any testing, just like during onset when I could barely sit up for several weeks, before we thought to check my blood sugar. My primary source of anxiety lately has been due to having my diabetes uncontrolled, and treated by someone who knows less about it than I do A distant 2nd source of anxiety is the awareness of the possible complications of long-term elevations. The headaches and false hypos themselves don't make me anxious, they just make me miserable.

I'm kinda used to the psychosomatic/anxiety accusations, since it's par for the course for any ME/CFS patient in the Netherlands (even more so in the UK). Since I avoid doctors as much as possible, I don't get directly exposed to it much - mostly through reading and analyzing low-quality "research" produced by the few true believers. Still annoying though, and I'm quite firm in refuting it.

The GP doesn't want to raise my Gliclazide higher, since she thinks 120mg is the maximum dose. Which is only true for the 30mg version. They're supposed to switch to the 80mg after that, for a dose up to 240mg, but I wasn't going to point that out. I mentioned the possibility of trying basal insulin, which she wasn't interested in, and that's when we got into the "it's fine if it takes a year" debate, and visions of flying back to the US to pay out-of-pocket for real medical care started dancing in my head.

At that point she decided to add a 2nd referral to my current one for the MELAS investigation with an endocrinologist, now for diabetes management. Basically just adding a 2nd purpose to the existing appointment, which is in 2-3 weeks. It's pretty much the best possible outcome of my appointment with the GP - far better than I'd even hoped for

No GAD results yet ... I'd thought it was 4 weeks, but apparently it's 6 weeks for that. So I can probably get it when I see the endocrinologist. I'm also pleased with myself for getting more assertive. I talk a big game before appointments, but then I'm too polite and agreeable when actually face-to-face. I think the ongoing headaches at 10-11 and false hypos at 4-5 actually helped me with that - it's simply not bearable to continue as things are, and I can't smile and nod and pretend that it's fine for it to continue indefinitely.

 

[DaftThoughts]

Any idea if that would that typically involve stopping or reducing the Gliclazide? My GP wouldn't have any idea, though I suppose she might call an endocrinologist to ask.

I was on Toujeo while taking gliclazide myself, at 2x 80mg per day. My values were about the same as yours. I didn't need to see a specialist, my DSN could prescribe that to me. Specialist at the hospital was the one to prescribe the rapid acting insulin though.

I'm looking at the list you posted and I'm scratching my head a little at how different it is from what I've gone through, and what requirements I had to meet.

(Got the same problem with being too agreeable and polite face to face lol. Proud you're standing up for yourself more though!)

 

[ME_Valentijn]

I didn't need to see a specialist, my DSN could prescribe that to me. Specialist at the hospital was the one to prescribe the rapid acting insulin though.

I don't have a DSN. We're in a small village near Amsterdam, and the local clinic just has two GPs and a (very) part-time nurse. I'm quite sure that the nurse doesn't know any more about diabetes than the GP does, or she'd already be the one dealing with me

I'm looking at the list you posted and I'm scratching my head a little at how different it is from what I've gone through, and what requirements I had to meet.

What was your experience? That's just a very small extract from a huge document at https://www.nhg.org/standaarden/volledig/nhg-standaard-diabetes-mellitus-type-2 . And even at that size, some things are grossly over-simplified to the point of inaccuracy, and a lot is omitted. If I was a GP and that was the extent of the training, I'd flatly refuse to diagnose or treat diabetes, even presumed Type 2. But they probably aren't aware of how much is missing or dangerously incorrect.

(Got the same problem with being too agreeable and polite face to face lol. Proud you're standing up for yourself more though!)

The Dutch are actually a very good example for being an assertive woman! I struggle with it, being from the northwest US, where politeness is emphasized. I just have to keep reminding myself that being outspoken and even disagreeable isn't considered at all rude here

 

[DaftThoughts]

Well that makes sense, I got treatment for type 1 (LADA), not type 2.

The Dutch are actually a very good example for being an assertive woman! I struggle with it, being from the northwest US, where politeness is emphasized. I just have to keep reminding myself that being outspoken and even disagreeable isn't considered at all rude here

I'm an HSP and avoid confrontations at all costs most of the time. Something that you shouldn't do when you have to be assertive. I agree that a lot of women here are pretty dang assertive though!

 

[ME_Valentijn]

Maybe it's just a fluke, but I've had my lowest fasting glucose so far, at 9.0 this morning. I tested again nearly an hour later, still without eating, and it was at 8.9, so wasn't still rising like it usually does in the morning if I get up a bit early.

Yesterday's values and foods (70 carbs, 1770 calories):
7:30am - 9.3 (early GP appointment )
8:30am - 9.8
10:00am - leftover sweet potato soup w/chicken (22 carbs, 410 calories)
10:15am - small avocado (2 carbs, 150 calories)
12:30pm - 50g dry sausage (240 calories)
1:00pm - 6.7
1:00pm - banana cream (18 carbs, 160 calories)
2:00pm - small side salad w/corn in it (estimated 5 carbs, 50 calories)
3:15pm - 30g peanuts (3 carbs, 185 calories)
7:00pm - 5.8
7:15pm - squash soup, fish, & asparagus (20 carbs, 575 calories)
9:10pm - 7.2 (bedtime, due to getting up too early!)

This morning:
7:45am - 9.0
8:30am - 8.9

So ... maybe a bit more carbs during the day is helping to keep my liver from over-doing it at night? The other thing is that my night time carbs have typically been closer to 25, and I often have a no-carb or low-carb desert (0-3 carbs) of cheese or peanuts or similar, which I skipped tonight. So maybe being strict about 20g carbs at dinner helped, and no food after that. Didn't feel deprived though, since I had my dessert for lunch

Or it's just a fluke. But worth trying the same eating pattern for a few days, to see what happens. Though I still don't want to be eating like this long term. Making starchy soups with a vegetable base (squash, sweet potato, etc) is a lot of chopping, roasting, and blending for me, which really wears me out. We have an extension on our kitchen counter in the new house, where I can sit on a stool to chop, which helps a lot, but it's still pretty exhausting. Not a problem once a week or so, but too much to do on a regular basis.

It's also very hard creating a dinner that's low-carb enough for me, but has enough carbs to keep the T1 fiance from going hypo. He's eating at least 2x as much as the soup as I do, but he's already had to scale his insulin back quite a bit, both at dinner and at lunch (even though his lunch hasn't changed!), which is generally a good thing, but implies he's been having serious hypo issues since I've been changing up our dinners Some days he hasn't been injecting at all for his lunch (2 sandwiches), but is still 7-9 before dinner! So I'd like to be able to more moderate in our carbs and do more potatoes and lentils - basically to have the option to tweak things more instead of just meals on the more extreme end of things.