So, great news…after waiting months for an appt. at the end of March, the endo office called and said they have a cancellation on Wednesday…YAY! Now, though I’m scared. If the doc wants to start me on oral meds based on my BG’s, I’ve heard bad things about T1.5 taking oral meds. For instance, I read that metformin can cause metabolic syndrome and neuropathy. I’m really hoping he’ll test me for 1.5 antibodies first because I fit that profile, but if he doesn’t and just assumes I’m T2, I want to know whether I should agree to oral meds or not. Help? Advice?
In a nutshell, I’m 46, thin, autoimmune, active. My BG;s are 115 fasting, 200’s with simple carbs, but they go back to near fasting fairly quickly. My aic was 5.5 in August and 5.8 in December, probably higher now as my numbers have increased slightly the past few weeks.
Hi and welcome; you’ve come to the right place. I am a LADA/Type 1. I prefer that term as 1.5 makes it sound like it’s either software or halfway between type 1 and type 2, neither of which is correct!
The reason for LADAs not taking oral meds is not because metformin can cause metabolic syndrome or neuoropathy (neither of which I’ve heard - only stomach problems in some people, some of which dissipate with time), but because starting on insulin early preserves beta cells.
I would absolutely make sure your doctor tests for antibodies and c-peptide level and if he won’t do that, I would see another doctor or endo. You need to know which type you are and a doctor who “assumes you are type 2” (because of your age) is not a good doctor to treat you. You do sound like a LADA but only the testing can confirm.
I have never heard of metformin causing metabolic syndrome. I have been on metformin (Glucophage) for years. To recap, I was diagnosed with a condition called congenital hyperinsulinism as an infant, took diazoxide most of my life, and was then started in metformin as a young adult because of problems with insulin resistance (it also helped stabilize my BSL). Now, at 32, I’m showing signs of pre-diabetes (a likely outcome of HI because the beta cells burn themselves out from years of overproduction).
Anyway, for me, I think glucophage has really helped stabilize my blood sugars and possibly even slow down the progression towards diabetes. I have not had any serious side effects from it (I take 850 mg 2x/day). I haven’t been great about having regular blood work, but I just had a complete blood panel done and everything came back normal.
In the last year, I have begun to notice some really wacky BSL readings - in any given day, my BSLs go from the 50s upwards of 200+. I need to talk with my endo about this more closely, because when I last saw him, I didn’t have any logs with me. Need to follow up on that…
I’d be surprised if the endo doesn’t do Ab testing, so I wouldn’t worry too much about that until it happens. Most (but not all) endos are aware that many T1s are diagnosed past adolescence. If you have a history of autoimmune disease, then I think they’d be negligent if they didn’t. Most T1s have auto-abs, but a negative still doesn’t exclude T1 as a possibility. But try not to let that anxiety get the best of you, it isn’t good for your bgs:)
Metformin can put stress on the kidneys and liver, but it should be safe over the short term, at least until you can find an endo that will do the appropriate testing if this endo refuses. And the damage is probably much less than that that would be caused by elevated bg. Just realize that it may or may not help, and if it doesn’t help or helps only transiently then that is a further sign of T1. But whether you take it or not is up to you entirely.
I’m sorry to hear that you’ve joined the club! Good luck at your appointment!
Here is where I’m getting info: from IsletsofHope website:
Sulfonylureas may help some insulin-sensitive patients at first, but will not stop or slow down LAD progression. May be severe risk of metabolic disturbance in LADA patients on metformin & sulfonylureas
From webmd:
Metformin Linked to B12 Deficiency Peripheral Neuropathy Patients Who Take Diabetes Drug May Have Vitamin B12 Deficiency
I already have some neuropathy and am scheduled to see a neuro about that. I also appear to have mild B12 deficiency and am taking supplements. So, based on what I’ve read on the above sites and other places, I’m really afraid of these meds.
I’d push for a proper diagnosis based on testing. We often have to be assertive. Doctors wait until BG is way high before taking things seriously. Good you’re seeing an endo. If you’ve logs, bring them with you. Metformin has been around for a while & is considered to be a safe med. The drawback for some on Metformin is gastric upset & that typically goes away after about month. If he insists you need this, get the time released form. It causes less gastric problems. I’ve not heard of Metformin causing metabolic syndrome or neuropathy in people with LADA.
Metformin is one of the oldest and safest diabetic medications. It can cause a malabsorption of vitamin B-12, but you can supplement and avoid those issues. If you have kidney or liver damage, then metformin may be a problem, and there is a very rare muscle condition that occured in the medications that preceded metformin. Overall, metformin probably has milliions of patient years of experience and is safe and effective. We understand metformin far better than virtually any other oral diabetes medication and is considered the first line of treatment.
Now there is a belief that with LADA you can benefit from early insulin use, but when you still have a mostly functioning pancreas, you may well have better control with medications rather than insulin. Insulin can be hard to dose properly when you have slight needs and variable insulin produciton. And in my view the real concern is that high blood sugars are toxic to you remaining beta cells. So bottom line, if you can keep your blood sugars well controlled with diet, exercise and medication (< 140 mg/dl), then it is probably fine to continue with medications. When you see numbers in the 200s, then you probably should consider moving to insulin.
Hi SilverLining: That is excellent that you were able to get a cancellation appointment. With the endo, I would suggest first discussing your concerns and summarizing why you think you might be Type 1/LADA (I would avoid the term Type 1.5), emphasizing your other autoimmune condition. I would suggest requesting the appropriate tests (the full suite of antibody testing, not just GADA) and a c-peptide test. Yes, we have to be assertive, but it is good to balance that with the need to not put the doctor on the defensive. I have only seen studies that indicate that sulfonylureas have a (very) negative effect on Type 1/LADAs, but I think that some use metformin successfully. Early insulin use by people with Type 1/LADA has definitely been shown to preserve beta cell mass, prolonging the honeymoon period, thus resulting in better health outcomes. Even small doses of long-acting insulin make a big difference. Best of luck to you, be sure to let us know how it goes!
Thanks Melitta…I too am glad about the appt, but it makes everything seem so much more real. I have been really lax on carbs and now I’m afraid of the uncertainy and changes. May I ask where you saw the studies on sulfonylureas? I keep reading on different sites that Metformin and sulfonylureas can cause severe metabolic disorder in diabetics who will become insulin dependent eventually. But, none of them cite any kind of studies, etc .
I’m sorry, I thought you had already had confirmed antibody testing. Melitta is right, it is important to get the right tests. Again, I’ve never seen anything suggesting that either metformin or sulfonylureas cause metabolic disorders. And keep in mind, a metabolic disorder is a condition which affects the normal metablism of carbohydrates, lipids, proteins, water, and/or nucleic acids.
One of the best discussions of how different medications preserve long-term beta cell function was in the presentation by Ralph Defronzo on the Role of GLP-1 Antagonists. He examines the evidence on how different medication regimes are not generally succesful preserving beta cells.
Hi SilverLining: LADA researchers in Japan (Kobayashi et al, several studies, primarily 2002) are the ones who have shown that sulfonylureas hasten beta cell destruction and exogenous insulin prolongs beta cell functioning in people with LADA (so in that case it’s not a metabolic disorder). Let me know if you have a problem finding those studies by Kobayashi. In the DCCT (Diabetes Control and Complications Trial), all study participants who had adult-onset Type 1 diabetes had some remaining beta cell functioning, and those who were put in the tight control group retained remnant beta cell functioning versus the standard control group, and also showed an enormous reduction in complications (>50%) versus the standard control group. Of course, both groups were using insulin, but the point is that tight control in people with adult-onset T1 diabetes results in much better health outcomes.
With regards to “Metformin causing metabolic disorder”… I think you may have found that on some of the anti-medication sites where people blame all their issues on medicine.
There exists similar folklore that e.g. insulin causes blindness and kidney disease. e.g. “My aunt started on insulin and then she went blind and had kidney failure. So insulin caused it all!”.
But all this folklore is nothing more than folks who confuse cause and effect.
Hi Brian: Defronzo’s presentation is pertinent to those with Type 2 diabetes–he is quite specific that he is addressing T2. Preservation of beta cells in someone with T2 is an altogether different matter than preservation of beta cells in someone with autoimmune diabetes. Of course, SilverLining does not yet have a definitive diagnosis. Also, although some adult-onset Type 1s report that their pancreas appears to give out spurts of insulin, most don’t seem to have that issue (my output during my honeymoon was quite steady, for example). When I was first on insulin, I used max 10 units per day, so it’s possible to do small amounts (especially if you use an insulin pump) and get good results.
Thanks for the reference Melitta; that is exactly the kind of information I was seeking. I am probably being extra cautious but weird things have been happening: thyroid is acting up, I’m experienceing the parasthesia/neuropathy, I’m having trouble with neurocardiogenic syncope and now I have little red pin pricks (petechaie) on my legs. Sooooo, no clue, maybe it is just early diabetes affecting my thyroid, plus b12 deficiency, and the syncope could be totally unrelated, but I don’t want to create any more problems right now by taking a med that isn’t right for me…I was this really healthy person 8 months ago and now even though I still look healthy, I feel like my insides are freaking out! :) I’ve said it before, I’m sure I’ll say it again, but I love this forum, it is SO informational.
In my case if I take metformin for more than 3 weeks I can hardly get out of bed. No reason has been identified yet. Most people do well on metformin. If you are insulin deficient it is of limited help.
The major point was Defronzo showed clear data on the beta cell decline on sulfonylureas and compared it against other oral medications. I am not clear that there is any difference in the effect of medication or insulin on preservation of beta cells. The best I can tell, it is glucotoxicity that has the biggest negative effect and insulin and oral medications would seem to both work on glucotoxicity. There has been almost no study of medication or insulin use preserving beta cell function. Are you aware of any direct studies?
Hi Brian: Actually, there are direct studies that demonstrate that exogenous insulin preserves beta cell function in people with Type 1/LADA. The best summary of results that I have is “Beta Cell Protection and Therapy for LADA” (Cernea, Buzzetti, and Pozzilli, Diabetes Care, Nov 2009) (interestingly, that article states that metformin can increase the risk of lactic acidosis, maybe that’s what SilverLining was referring to). That article says that there are no studies that evaluate the use of metformin in people with LADA. Kobayashi et al (2002 and 2006) are direct studies that indicate that exogenous insulin preserves beta cell function in people with LADA, and those studies demonstrate that sulfonylureas hasten beta cell destruction. Zhou et al (Diabetes 2004) is a direct study that indicates that insulin combined with Rosiglitazone (Avandia) is most effective for preserving beta cell function in LADAs (but of course the use of Avandia is now restricted). The primary cause of beta cell destruction in people with autoimmune diabetes (Type 1/LADA) is the autoimmunity, not glucotoxicity. Bruce Buckingham at Stanford is doing clinical studies where he initiates really, really intensive insulin therapy in newly-diagnosed Type 1s (mostly young people), and he has had tremendous success with beta cell preservation and better health outcomes. If I were newly diagnosed with LADA, I would initiate intensive insulin therapy (even if that meant very low doses) immediately–I think the evidence is overwhelming.
Melitta, Brian…thank you both for your expertise. I am glad I posted as this is valuable information. I think I’ll choose Type 2…no wait, I think I choose Type 0! LOL
I’ll post back on the results of my endo visit. Thank you.
I was in a similar situation only about 2 months ago…my LADA progressed so quickly (just 6 months ago I was eating 15-20 carbs at a time with after meal numbers in the 80-150 range) then starting about 6 weeks ago I went from 90-180 after meals straight to over 200 up to high 200s every time I ate ANYTHING and I was only eating 5-15 carbs at a time. I was just placed on bolus insulin one week ago and am SO glad I got to skip the meds part because I hate taking any medication and I did not want to deal with the side effects of the meds knowing I was LADA and insulin was “inevitable” anyways so I just wanted to bite the bullet and be able to start on small doses of insulin instead of trying orals or waiting until my pancreas was completely burned out and being forced onto high doses of insulin right off the bat. Best of luck, let us know how it goes.
I would definitely ask for GAD antibody tests and C peptide tests. But prepared they may come back negative, which would indicate you are an early stage Type 2. Many Type 2’s are thin and have trouble with their bgs. When I was d’xd my fasting was 240 and after meals I was 300+ without medication. I have been on metformin for 4 years. My fastings are now in the 80’s and after meal is about 110. One of the things as a diabetic, no matter what kind is that you have to give up simple carbs and opt for more complex carbs. Metabolic syndrome does not come from medication. It is a condition of several markers for diabetes ( BMI over 30, waist over 35, Cholesterol over 200, BP over 130/75 and bgs over 100). One of the drugs they give people to help with metabolic syndrome is metformin. It makes you more senstive to your own insulin and helps many lose weight. On the other hand many who start insulin find they have to watch what they eat because the insulin can lead to weight gain if not used properly.
I’ve said it before, I’m sure I’ll say it again, but I love this forum, it is SO informational.