Metformin-worthwhile or causing trouble?- new to forum

Type 1 and LADA
1

Hi!

I'm new here, and I am here for information and support. I'm a psychiatry resident (at my advanced age) but I find that the information I need to live well with this disease is more likely to be found somewhere like this.

I was diagnosed in 1994, in Chicago, with what my endocrinologist called Type one and a half, which no one had v=ever heard of at the time, at least at my medical school. I had a number of autoimmune endocrine problems, so when my A1c came back high, and I explained that I had had "gestational diabetes" for the entire nine months of my last pregnancy he tested for antibodies. At the time, I was very a very active normal weight medical student.

His advice then was to never let anyone give me any oral jeication except metformin. I was able to stay on only metformin until a year and a half ago- and at that time started Lantus. I gaind 25 lbs on Lantus, and kept needing to increase the dose. Then I switched to levemir, and then added symlin which didn't do much.

Then a couple of months ago I had to add prandial insulin, and had pretty much nothing but highs and lows, made worse bgy my extremely irregular schedule. So a couple of weeks ago I started with a Ping pump. My controkl had been pretty fabulous with the pumo--though I am having a hard time with it psychologically.

But my question is about metformin. I've been taking it since 1994, and at 2500 mg a day for many, many years. My endo wants me to keep taking it.

In the meantime, I have only one diabetic complication-neuropathy, but it has been quite a problem, as it hurts, prevents me from running which is my preferred form of exercize, and I worry about getting infections since I want to keep my feet. My kidneys and retinas are totally fine, thank God.

My PMD, the other day, suggested that metformin has actually been linked to neuropathy via vitamin b12 deficiency. I am wondering if all this metformin is doing me any good, and if it could be making things worse. I'm finally going to go to a neurologist and get EMgs and see if they can clarify the cause of the neuropathy but am looking for advice. My endo is not impressed.

Thanks for the advice in advance.

I am really happy to be on this forum. I am a pretty strong person who is not afraid of much, but after all this time the changes in this disease I thought I had learned to live with have me feeling pretty scared and fragile. It's disconcerting.

2

Welcome to the TuD family drmom; you'll find tons of info/support here.

I'm also a T 1.5 (LADA). You may want to join the LADA group. Also be sure to read Melitta's wonderful blogs with great info about LADA.

Metformin has been a no-no for T1. There are some recent studies indicating that it's useful for T1 as well. If you google T1 diabetes metformin, you'll find a lot of info. I'm sure you'll get many responses here too.

Personally, I stopped taking Metformin before my 'official' LADA dx.

Sorry you're feeling vulnerable. We've all been there. You'll find your strength again :)

3

Thanks for the reply. I am also getting mixed answers from trying to look this up in the litersture. I don't know who to believe.

Also another minor problem that i ran into when posting this. Am I supposed to say have type I now, since I seem to be pretty thoroughly dependent on exogenous insulin and have the right antibodies to be in the club , or am I still supposed to say I have LADA/1.5?

4

LADA IS Type 1 - it is just a slower onset form of it that occurs in adults.If you were diagnosed in 1994, at this point your diabetes shouldn't look different from any other Type 1. My understanding is that Metformin, if used in Type 1's is generally for insulin resistance. Do you have Insulin Resistance? What is your total daily dose?

Please don't take this wrong, but you say your control is "fabulous" and you list an A1C of 8.7??

I encourage you to read the book Using Insulin by John Walsh which will give you some good suggestions about managing your Type 1, tweaking basal and bolus dose, I:C ratios, ISF etc.

5

My control is not fabulous. As I said I have had the pump for two weeks. It's the consistent high eight A1Cs in the context of highs and lows that got me on the pump. My control being pretty fabulous with the pump is a comparative thing--and its been great for all of three days. Just trying to focus on the positive.

Also as I said, the total daily dose of metformin is 2500 mg. If it's the insulin you're asking about, it seems to be settling around 45 units/day. I have developed insulin resistance over the years though initially I was started on metformin only at night to control gluconeogenesis in the liver- and that was enough for a couple of years. I don't think anyone knew it might be a good idea to start insulin very early in LADA in the 1990's. I realize I was very lucky, but now am feeling somewhat overwhelmed.

It seems stupid to be feeling like this happened suddenly when I have been diagnosed since 1994, but since the Fall of 2010 I went from needing eight units of lantus at night to being on the pump and counting carbs- I am having a harder time getting used to it than I expected. I find myself wishing I could stop the rest of life and just learn to deal with this one thing, but that's not going to happen.

6

Yes, you are right, they didn't know much about LADA (or even that Type 1 could and did happen in adults) in the 90's. I myself was misdiagnosed as Type 2 and that was only in 2007 when they should have known what to look for. It sounds like you have managed a really long time on a very limited treatment regimen. That is pretty unusual. But what matter is that now it sounds as if, unfortunately you need to quickly up both your treatment and your knowledge. It's a hard thing to deal with, and even harder to integrate into a busy life. But you've come to the right place. There are many of us on here, who while we didn't have the background you did are in a similar place. The pump is an amazing tool. But, in order to benefit from a pump you need to learn the basic skills of a basal/bolus regimen. I strongly recommend both of John Walsh's books: Using Insulin and Pumping Insulin. Many of us consider them a bible. Once you learn the skills of carb counting, determine your Insulin:Carb ratios, and your Insulin Sensitivity Factor,and get your basal rates set right, it will start to get easier. In time it will be just something else you do in your life, like brushing your teeth. Well, maybe not that easy, but you get the idea!

7

I am an adult diagnosed t1. I started with Metformin as well as my doctor misdiagnosed me initially. In any event, with a doctor switch and the right diagnosis, I started on Lantus about three months after diagnosis and Novolog about three months after that. I stayed on the Metformin however. I do find it keeps my insulin needs down and helps with the dawn phenomenon. I have done lots of research on it and have never read about it causing neuropathy. in fact, I have read it's possible it helps reduce risks of certain kinds of cancer and also may help avoid macular degeneration. Personally I think your neuropathy has come from fluctuating sugars. I believe once you get those more level your neuropathy might decrease or reverse. It sounds like you are on the right path with the pump. I still MDI but consider the pump all the time. For now I seem stable so I don't feel like rocking the preverbial boat.

8

It IS hard to get used to. I was also mis-dx T2 in 2006, and had horrible control with meds, the a sliding scale... finally a pump. Love my Ping, and my Dexcom. They're amazing tools, and there is a learning curve. Do keep focusing on the positive!

I second Zoe's recommendations of books. You'll find that the more you learn, the more you become your own doctor - you'll get to know your body and it's reactions to various foods, exerise, etc. better than anyone.

Sounds as if you're doing great so far ;)

9

Hi
I am not a doctor, so I really don't know the chemistry about Metformin. I am an LADA diabetic as well, having been diagnosed with type 2 for many, years. It was so long that I have forgotten when the exact day was! I also use an Animas Ping pump, and my control has improved considerably. I expect that if your diet and exercise plan works at all, and you are paying attention to your blood sugars to keep them in your selected basel rates, your A1-c will come down as well.

A few weeks ago, my CDE and I discussed my use of Metformin. She told me that Metformin is a rather benign drug, and is very useful for both type 1 and 2 diabetics to combat insulin resistance. I wonder about your dose, now that you are on insulin. You may not need as much per day as you are taking. with insulin in the pump,. you do not need the metformin to control your blood sugar levels, but it works nicely to assist your body with resistance that you may have for the insulin that is being infused into you. I have never heard that Metformin could be linked to neuropathy.

Diabetes is a lifestyle. Most folks are scared when they are forced to make big life changes in a short period of time. I urge you to keep a positive attitude about control and keep the upper hand in daily life management. You will become accustomed to your new lifestyle once you become more familiar with what diabetes throws you throughout the day. The Forum discussions are a constant supply of information too.

Be well

Brian Wittman

10

Well as i understand it, metformin can interfere with vitamin b12 absoption. We have a body store of b12, so if you arent absorbing it from your diet you just use your body store of b12 for a long time but when it gets depleted, you wijnf up with a deficiency which can cause nerve conduction problems.

It's pretty funny, since I was lurjing here for a week or so before joining, I read a lot of advice and ordered Pumping Insulin used from Amazon. It came yesterday. I'm gkad I did.

Suzanne

11

So GLAD you're on a pump. Have you considered a CGM to easily watch your basal effects and identify what foods might have been spiking you, what foods you might have to lower amounts of, what times of the day changes might be made? Sometimes folks get on pumps and still find highs at 2 h pp.
The CGM is a marvel in that you can separate out foods and watch results. Just a suggestion. Obviously I skipped your metformin question and went to the heart of what can still screw up your A1c. And I know that physicians seldom give other professionals some of the detail that may yet be needed. If you haven't used one, I recommend a Dexcom and say a 4-6 month period of using it while researching foods and your own body.
Once you have had BG around the clock in a nice 100-110 range for a few months you'll know if your neuropathy was due to high BG or metformin. Read Dr. Bernstein's Diabetes Solution, too.
Best wishes. You'll soon feel better.

12

Blood glucose "around the clock in a nice 100-110 range" is not a possibility for many, if not most Type 1's.