metformin is torturing me
 

Hi, Im a member here for over 2 years after being diagnoses with MG.

I recently started a drug called cellcept, and thought it was a cause for my sugar spiking, but I had noone to blame except myself.
Ive been overweight, morbidly obese as my doctor says(about 350 lbs) and he has warned me for 2 years Im prediabetic to watch, but Ive always been a big child, and this was no different, so Im paying the price I guess.

First week sept, I wasnt feeling right. Iwent to the doctor sept 6th and my sugar was 256 after only one cup of morning coffee without sugar.
I was sent to nutritionist and put on metformin.
IN one month, I lost 30 lbs, and I was feeling good on a high fibre diet. Ive never slept so well, and forcing myself to eat more fruit and veggies along with some protein each meal gave me more energy.

I decided, hey, I have to grow up and toss the five guy burger dinners.

But around 7-9 days ago, I started with cramping and bathroom runs.Constant bathroom runs. Im retired, but Ive been trapped in my house for a month now because at first, my vision went blurry, and now thats clear.
But my cramping and BM's have forced me to stay home.
I last put gasoline in my car in august, and still have 3/4 of a tank, where as I fill the tank once a week for 40 years.

The metformin is killing me. absolutely torturing me. I started taking it with dinner tonight and will not worry about spreading my dose out twice a day 12 hours apart. Forget that, it goes down with breakfast and dinner.

How do you deal with the intestinal issues with metformin?
Im lost here, I dont want to spend the rest of my life hugging my toilet bowl.

Ive also been diagnosed in 2008 with diverticulitis, and was in the emergency room, so this metformin is giving similar cramping and the runs.
I dont know what way to turn. I dont know what to eat.
Im so frustrated, but I never give up.

I have to give up my social life it seems, what little social life I have left.

btw- my glucose the past 2 weeks hasnt gone over 114 fasting , 135 at 10am, 100 at 4pm, and has been around 110 at 10 pm. so I think the metformin works with a diet, but like I said, I cant deal with the intestinal issues.

Metformin is torture, for some people.

What it does is increase the activity of serotonin receptors in the gut, which increase motility. It has also been shown recently in one study to increase gall bladder contractions which for some patients is an additional torture.

Your options are to ask your doctor for extended release form, which may help or not. The original Glucophage ER did not work for me either.

There is a newer version, called Glumetza, which worked for me for several months, and then the torture returned! This form does not have a generic and releases the drug more slowly than the original ER forum did.

You should have blood work on your kidneys periodically to make sure the drug is being cleared properly and not building up in your system, as well.

I personally believe based on my own experience with Metformin, that some people just cannot tolerate it in any form.
It remains very good when tolerated GI wise however.

In my case the gall bladder effects just became too much for me!

I left a message for my physician last night and he woke me up this morning, which I was thankful he called so soon.
He switched me to onglyza 5mg once a day.
I decided to take the day off from metformin to ease my abdominal cramps.
Motility, thats whats killing me.
Its a constant urge.

I have my blood work done every 3 months to monitor my kidney function as well as other bodily functions.

I get IVIG so kidney function is very keen to me.

Thanx for the response.

I'm so glad you got a new medicine it sounds like you really needed
one.

I have been wondering if I needed one.

Donna:grouphug:

A new injectable named Victoza has been a godsend for my wife. Unlike insulin, it absolutely will not cause dangerous blood sugar drop. It is quite expensive, but the manufacturer does have a program for those on a provably low income. ASk your doc if it might work for you.

I've been on metformin for about ten years and never had a problem--different genetics, etc.

Good luck.

Another possibility Allen is that with your weight loss and diet, you have reversed some of your blood sugar load.

It might be helpful to not take anything for 2 weeks and see if your sugars have corrected so far with your diet and lifestyle changes.

Test morning fasting and some postprandial (1 hr after eating) and before dinner, to see what your sugar is doing during the day.
An A1C below 6 and you might not need any meds at all, now as long as you continue with your dietary improvements.

I gave up my metformin for the second time this year because of GI pain. 3 weeks ago. And I just tested my sugar now and it is 100.

I've been using a supplement called theanine... which was listed in a newsletter by Dr. Blaylock MD as helpful for neuropathy. I've been taking it since early August, and since then my glucose readings have become normal. 150mg at bedtime. After this surprise I looked it up in more detail and found that theanine (which is found in green tea) reduces cortisol in the body from stress. Increased cortisol is implicated in the dawn phenomenon and cortisol does raise blood sugar.

My daughter takes Metformin. Makes her ill as well, but she's pretty settled at the moment. Was the worst when she started and then when she needed to increase her dose from time to time. She has PCOS with Insulin Resistance. Totally different situation from your own, Allen, but just wanted you to know. I think there was a slow release form that was posted about here that appeared to have fewer GI side-effects. Will post if I find it. Think it is Glumetza? Maybe I'm wrong.

Ive been off the metformin for 3 days, and sugar levels were ok.
2 hours after a meal, my sugar shot up to 150 the highest, but an hour later it was down to 90.
I started the new drug last night.
My physician is a stickler when it comes to his orders. He wants me on medication until the next visit in 6 weeks.
Hes been taking care of me for 20 years, so Ill continue on the meds until then.

Do discuss with him, a trial without. It would be a shame to take a medication, if you didn't need it.

Please read this and you'll understand why I am cautious:
http://diabetesupdate.blogspot.com/2...with-more.html

Many type II's can control glucose with diet, and you already have made a substantial effort, in that.

Congrats on the weight loss! Metformin takes as much as a month to"build up" in your system, and it can take a while for it to completly clear your system . Give it time. Then use your meter frequently to see how you react to your meals. I test a minimum of 8 times a day.

Hi there, My name is Melody.

I just came upon this post and it brought me back in time when I went on Metformin. I could never leave the house until way after 1 p.m. I took 2000 a day. I was very obese and did not eat correctly. My brain did not get the light bulb moment.

But the metformin KILLED my stomach. Ran to the bathroom ALL the time. I know exactly what you went through.

What worked for me (and probably you don't need this because you seem to have a handle on your diet), was going off all oral meds and going on Lantus. One shot a day and that's it.

Started on Lantus about 7 years ago. And really began to watch what I put in my mouth about 2 years ago. Lost my weight, I grow what I eat (I"M a sprouter and I use a Vitamix)

Go on youtube and watch some Vitamix videos and see how what people eat and drink. You'll be amazed.

I also make a tea out of Fenugreek seeds and my sugar usually stays around 126 post prandial.

For me, I'd rather do one shot a day of Lantus (I take 16 units) and my tummy has never been better.

But I don't eat like I used to eat. I don't eat any refined carbs. No pasta, no bread. I eat mainly vegetarian but I do eat fish now and then.

For protein I LOVE Tempeh. I have grilled Tempeh on a salad and I think I could eat this way forever. I do not MISS anything I used to eat all those years ago.

Took me to get in my 60's to learn what to eat, how to eat and when to eat.

Baby steps my dear.

So good luck on your road to better health.

You're doing great.

The link to my youtube sprouting channel is underneath my signature. And the featured video is my husband using the Vitamix for the first time. You should have a good laugh.

Melody

my nutritionist called it baby steps also.

whats been a boost for me is that my wife(has never gone over 130 lbs in her life), my daughter(has been a health nut since I can remember), and my son, who was getting a bit of love handles, now my son has been on a health kick, although I think its a new way of life for him, he eats constantly, but the right foods, and has dropped all the weight he wanted too.

and even though my kids are adults and live in their own homes, we see them alot and eating healthy is so normal for them they are thrilled I finally saw the light.

I dropped 30-35 lbs, and seem to be stuck, but its not frustrating.

My stomach is 100 times better now that I switched to onglyza.

todays readings, fasting this morning, 101, 2 hours after breakfast 116, and at 4 pm, 81. I can live with these readings as I dont think they are unhealthy.

I appreciate the support you guys give here. sometimes, issues like spending more time with the toilet then I do with my wife is not easily discussed or understood unless someone goes through the same thing.

Those numbers are fine. This morning my fast bg reading was 79. Ever since I started Vitamixing my food and I eat fresh ice cream at 7:30 p.m. using frozen bananas and peanut butter, and ice, well, to be able to eat like this and hit a 79 when I wake up is absolutely amazing. I never saw those numbers 20 years ago. I eat my greens, my carrots, I don't do much fruit but I do have my banana every day and tonight, instead of making a banana peanut butter ice cream, I opted for something different. Orange,banana ice cream.

It was so refreshing. I think it's the fact that I don't eat anything processed. I eat real food and it tastes good.

So keep taking baby steps and don't worry about talking about bathroom necessities. Food goes in, food comes out. For most people, it's the natural order of things.

lol

Melody

metformin
 

Hi Allen when i first got diabitis the doc put me on metformin and actos boy the metformin gave me a gut ache that i thot was going to kill me i have ibs too whatever that is the docs just use that name for any stomach problems that they dont know what is. But the metformin one pill was enough for me then a nurse a couple of months later talked me into trying another one and took my stomack pills with it the pain was worse this time than it was the first time i could feel the pill going thru taking the pain with it was terrible.......the only thing that helps my stomach pains when i get them is paragoric and when u ask the docs for that they come unglued they even start hollering how terrible that stuff is will kill ya they dont even make it anymore they start telling lies as fast as their mouths will move . but sometimes i doc will give me the smallest bottle made the bottle makes mini bottles look big but in twenty minutes my stomach ache will go away it is like a miricule cure...then i started reading about the actos and its sister med dont remember the name but it was proven that it causes major problems so i didnt want to take either one so then glipizine was used but it didnt do much so then i started on the injections it is by far better my biggest problems is i dont like the things i am supposed to eat. I dont know why they dont say dont eat anything good if ya dont like it that is what ya have to eat so needless to say my sugar always suck as so does my ac1 is always way to high...well thats my story and i am sticking to it so good luck with the metformin hope it dont kill u it would me....have a great day..Alan

I went to my doctor yesterday to get my bloodwork and physical.
My a1c went from over a 9 back on sept 6th, down to a 5.1.
My doctor lowered my dose of onglyza, said he was very proud of me.
I dropped over 45 lbs so far, and overall, its not as hard as I thought, just to eat correctly, and add a tiny bit of excercise.
Its nice to see my doctor smile once in 20 years.

That's great! Thanks for the update!

I just got my A1C this week.... from 6.4, to 5.7 and NO drugs
for months! I stopped the Glumetza because it was beginning to torture me too.

What I am using however, is R-lipoic acid (stabilized) by Doctor's Best. 100mg a day. This new form is good for neuropathy, and I guess it really is working on my A1C.

I also use 300mg SunTheanine at bedtime and 150mg of Benfotiamine. The theanine is suggested for PN also. I have seen some suggestions that it lowers cortisol, which may be why my A1C fell that much.

Since Sept I also drink 4 ounces of Kefir daily, and this has really helped my GI tract (which the metformin trashed).

So I am just controlling now with diet and my supplements, and testing daily. I've lost some weight too, but not as much as you! ;)

It's great to hear that you are doing well also!

Good for you WAY TO GO!!!!

Melody

Mrs. G. Where do you get your R Lipoic Acid from?

Thanks much

Melody

It is available from iherb.com

But I am finding Amazon competitive now in price and
free shipping for smaller orders... $25.

So my last order came from Amazon. Doctor's Best. R-lipoic stablized 100mg

I took a walk to my local GNC. They not only didn't have it but the guy said "I've only heard about this from two people".

So my best bet is to get it online. Do you take the Alpha also, or do you just take the stabilized R Lipoic. Thanks very much

Melody

There is a LONG thread on PN about this. Take a look.

The R-stablized form is far more absorbed, meaning less is needed, and it works far better-- it is water soluble unlike the original Alpha. The original alpha needs very high doses to work, and 1/2 of it is not biologically active. Why use that when the new form is so good?

Melody, you've been around a LONG time... you KNOW that local stores don't usually have what we use here, and if they do, like GNC they charge over double the value for them.
http://neurotalk.psychcentral.com/sh...ht=lipoic+acid
I had been using R-lipoic 100mg daily but it wasn't stabilized form. That thread explains why the stabilized is superior. We all learn new things daily.

Besides the sales people in stores know basically nothing IMO.
They are not medical people and only want to sell you "something".
GNC is notorious for being overpriced for anything you get there.

Yup, I chalk my lack of remembering stuff to LOTS of stress in this family right now. But I'm dealing with it.

I'm getting it from Amazon today. Can't wait

And guess what else I learned. That when you get Levemir from the company (and it comes refrigerated naturally), it works BETTER than when you get a sample from the doctor. (even if that sample was refrigerated.)

Got my first batch yesterday (brand new prescription and my first one for Levemir). When I was using the doctor's samples I was getting 150 in the morning, 133 in the morning, and I could not understand why. The pen had not expired but who really knows when it's passed from sales rep to physician, right? So while I wasn't getting tremendously high numbers in the am and during the day, I knew something wasn't quite right.

So got the new shipment yesterday. Ate exactly what I eat all the time. Don't cheat. And this morning my number was 106. I was never so happy to see a 106 in my life. Now that I can live with.

So I now take my 19 units at bedtime. I want to get as close to the 100 in the a.m. and better post prandials during the day.

I go back to Cornell in January so we shall see.

I probably could go back on orals but they did such a job on my gastro system and I have NO problem with the amount of insulin that I take so why not leave things the way they are.

I let my sprouts take care of the rest of me.

Thanks for all the good input Mrs. D.

Melody

I thought it would be okay to share what one reviewer wrote as a comment on the amazon R-Lipoic topic.

What a great write-up!!!
-------------------------------------------------------------------------------------
http://www.amazon.com/review/R3E04AA...elpful.Reviews

Melody

Samples are always either short dated, or may be mishandled.

If the pen was exposed to high heat in the trunk of the sales rep's car for hours and hours, it would be degraded.

Those reps get boxes of samples and store them in their cars, and travel around. I've seen them countless times getting them out of a hot trunk and lugging them into the clinic or office!

Not surprised. In fact long ago when tetracycline was new and popular, its samples were stored for long periods of time (this is before exp dates were put on drugs---yes there was time this was true) and doctors used the old samples on themselves and family members and employees and patients and old tetracycline cause kidney damage--Fanconi's syndrome. When traced back to outdated drug, it was an incentive to have exp dates put on drugs from then on:
from http://medical-dictionary.thefreedic...i%27s+syndrome

P.S. this paper refutes the lysine link to Fanconi BTW. There was one report on PubMed over the years only.
http://www.springerlink.com/content/978v647225604382/

OMG, I'll never use an insulin sample again. Never knew that drug reps did that. Thanks very much for that important piece of info. You have probably helped dozens of diabetics if they read that little piece of info.

Melody

Hi I also have MG and type 2 Diabetes. It is a balancing act with meds etc.

I was also having problems with Metformin. My doctor told me to reduce my dosage to a level where It was not causing stomach Cramps. I was able to reduce from 3000mg daily to 2000mg but I had to increase my insulin.

Having MG gives you higher blood sugar readings (due to meds etc). There are some similarites between the 2 conditions. Because of the MG I cannot exercise a lot. A couple of hundred yards walk wipes me out for the day.

Keep your chin up.:)

People on metformin for a long time, need to take a supplement of B12. This drug affects B12 absorption, and depletes it in the body.

Here is my B12 thread with more information:

http://neurotalk.psychcentral.com/thread85103.html

and

I have just been to see my GP about stomach problems re Metformin.


I have now been told to stop taking Metformin for 2 weeks then start taking it again: 1 tab at night for 2 weeks then increase by 1 tab per day every 2 weeks until tummy problems start. (1 tab per day first week then 2 per day a fortnight later and so on)
Then stay on the last dosage when no tummy problems exsisted. Clear as mud. Can but try it.:

I havent been here for quite a while.

the happiest day of my recent life was when I stopped taking the metformin.

I dropped 50 lbs, gained back 10, but Im struggling again to get on track with the diet, I still walk my 2 miles each morning, and stay as active as I can.
My A1C has been no higher than 5.5 the last 6-8 months.
My glucose readings are always near normal, seems the diet, the little excercise I get, and the onglyza(2.5mg) daily are keeping the diabetes under control.

Cautiously, I can say Ive been feeling pretty good lately, or as well as a heavyset man in his late 50s can feel.
The myasthenia hasnt held me back much, just not driving much at night as I dont feel as alert and my eyes feel weak, but its nothing that bothers me much anymore.
Im sure alot of my problems are just old age creeping up on my slowly, and me not being used to it.

I hope everyone is feeling strong and healthy.

Id like to thank all those here and in the myasthenia section for all the great advice and comradery.
seems talking or chatting with people who understand what I was going through eases the panic and discomfort, at least for me it did.

Glad you are feeling a bit better. Hope you continue to do so.

Take care,

Melody

I came across your post in regard to metoforim and myasthenia. Due to taking prednisone for 5 years now with dosage from 5mg-60mg per day I was recently diagnosed with diabetes. The doctor put me on metorforim 500 mg in am and 500 mg in pm. Most of the time I skip the pm dosage. Shortly after starting metorfim my myasthenia got worse. My neurologist upped my prednisone to 60 mg daily. In the morning I feel good until I take the metorforim. What negative effects are you having from the metorfim?

Most of the people who discontinue Metformin do so because of the gastrointestinal side effects. I personally found them unbearable. Constant cramping and diarrhea.

The other thing metformin does is to deplete Vit B12... but this takes some time, and is not an instant effect.

I'd get a serum B12 run to see if you are low. Being weak and tired can be one sign of low B12.

Long term use of prednisone will deplete many things. Magnesium, zinc, and potassium, calcium and selenium.
Also folate, Vit C and Vit D.

All these nutrients may be affected by long term prednisone use.

I could not find any papers on metformin and myasthenia.

Metformin does not dramatically lower blood sugar as a rule. It might
be a good idea to get a glucometer and measure your blood sugar several times a day to see what it is doing.

sorry, been busy.
I wasnt having any negative effects regarding myasthenia.
It was just the constant stomach problems.
Not a little, all day long.
When I finally convinced my physician the metformin was torturing me, he switched me to onglyza, and within 36 hours I felt fine.
My physician did have the audacity to tell me how very few of his patients complain about metformin.
Like Im a freak or something. Only Im suffering.

on a side note, first week in nov is my last IVIG treatment, neuro feels the cellcept is working, feels I can stop the ivig.

My sister's doctor actually put her on it jsut for her bowels. Couldn't find anything else to work

Ah, I remember those Metformin days very well. Had to get off buses just to run home and go to the bathroom. Did this of YEARS.

Went on Lantus. Never looked back. But then I'm very lucky

All I do now is Levimir 18 units (sometimes 15) at bedtime. But then again, I'm a control freak about my diet and I'm also very lucky.

I found out that you eat perfectly, do everything right, but if it's your genetic makeup, etc, etc, sometimes it's not enough.

So I still try and hopefully shall continue to maintain my blood sugar as best I can.

Melody