Anyone else extremely thin, can't eat carbs and meds not working

Aug. 2011 diagnosed with diabeties when sugar hit 400's. Went on low carb diet and oral meds. I dropped from 140lbs at 5'6" to 120 in 2 months. I have only 2 family members with late life, diet controlled diabeties. Meds and insulin don't work well for me even on an almost no carb diet. Sugar is still too high, usually 200-300 daily. I do not cheat at all and can't even eat fruits or milk due to natural sugars. I don't hear much about people being so thin. The specialist I see doesn't see many like me either. My liver spills too much sugar while my pancreas puts out very little insulin. Lantus and Apidra have incredbily bad side effects for me and I feel sick often. I don't mind being diabetic but can't stand feeling sick and tired all the time as I have 6 children and a foster mother also. I would like to know others who might have similiar problems so I can discuss more in depth what is working and not working for them.

Hi, I was dx'd about 5 years ago and I was 148. I am about 120, now. I take metformin and it works if I stay under 10 carbs per meal. If I go over that I will spike very high. The metformin has helped me with the liver dumps. I find if I eat too many carbs the extra carbs get stored as glycogen in my liver and are there to dump when I don't eat. Although I eat low carb I still eat a lot of calories.

Hi -

I'm sorry you're having such a hard time. The sustained high sugars rather than the insulin itself made me feel sick at the beginning. It may be be counter-intuitive but are you sure you're taking enough insulin. The way to give your body a break is to get closer to normal.

Maurie

Jeannie, I wish I could eat 10 carbs with a meal and so thankful that the metformin is working for you. My diet is protein and veg. with lots of fats. I have to use cream instead of milk because of the sugar content in milk. Even beans have to much carb and I have to watch the intake. I am glad to hear there are other (not typical) diabetics out there.

still_young_at_heart, the sick feeling is the insulin because as soon as I take any of my insulins I am in the bathroom within a half hour. As far as dose, I am already at 1000mg of Metformin morn and night, 11 units Lantus before bed and Apidra 3+ units with every meal or snack. The sad thing is that I need 3 units of Apidra just to eat a serving of protein. Here in the middle of no-where a specialist is hard to find because they see mostly the typical diabetic. I'm sure if I up the insulin I could control the sugar levels but then when I seem to get my #'s normal all of a sudden my pancreas decides to work and I hit an incredible low. The low's scare me much more than the high's because I just want to curl up and go to sleep. I really have no idea what is normal insulin for other people, maybe I take a low dose.

Sherrie -

If you have good health insurance and a few days that you could spend in Boston - I know that these are two big ifs - the Joslin has a wonderful program (DOIT) where you work with a senior endo and other professionals to help you get a handle on your situation. People attend from all of the country (and the world).

Maurie

That would be incredible...I actually would love to be part of testing to find out more about why and how type 1.5 works. Unfortunately, we don't have insurance and just the supplies are taxing on income. I already have to find freebies to maintain being proactive about my levels.

Hi Sherrie,

I'm sorry I don't have any answers for you, but there are people here who have a lot of knowledge. Keep asking here, and I'm sure that some of them will be able to share similar experiences and/or be able to give you good advice.

And may I ask, have you read any of the books that get recommended here?

Also, Dr. Bernstein will answer questions on his monthly internet presentation. It's wisest to read his book first. And then write him a very clear question about what you want to know the most.

I'm sending you my sympathy and my best wishes for good solutions.

marty1492

I am the same, i am thin and i need insulin right away when i eat carbs i spike immediately.

I lost 20 pounds in 3 months.

It seems my endo and my family doctor have different opinions.
The Endo thinks i am 1.5 and family doctor thinks i am type 2.

I been feeling like crap and very tired ever since i take insulin only.
I get anxiety and i get vision problems and dizziness at times.
I was doing better with metformin and insulin combined.

I am on Lantus at bedtime and novorapid for meals.
sometimes i take too much, sometimes not enough and my sugar goes up and down.
It's very hard to get the target range.

What kind of side effects are you getting from Lantus?

Since posting this...I have learned it is not the insulin that I am having severe reactions to. The insulin is making the Metformin kick in which is causing me the grief. They pulled me off Metformin completely just yesterday and since then my #'s have been low 100's and I feel like the old me. Still tired because I'm not eating carbs yet but at least my family doesn't have to put up with an extremely mean person and someone who can't get out of bed. My side effects were like having a bad flu. Severe nausea, cramping, bathroom time (not throwing up) but didn't dare leave the house because I couldn't trust my bowels. I do get the vision problems and dizziness. I didn't get depression but was so aggressive feeling that it was borderline verbal abuse. We are a family that doesn't drink, smoke, or swear and have adopted a few kids with issues so that was just unacceptable to me. So I guess I am going to be called type 1 but I am sure for me it's LADA. My c-pep was on the low side. I'm just glad to see I might be able to control this because we would like to adopt more kids in the future. I believe everything happens for a reason. I was an abused child but it helps me with foster kids now maybe this will help if we end up with a diabetic child. Thanks for your reply...helps to know there are others.

Hi Sherrie,

I'm 6-0 and only 154lbs. When first dx I went down to 142lbs and it wasn't good. No one in my family has diabetes and parents cannot remember anyone in their families either so it looks like I'm the first. I've always been healthy and worked hard at exercising regularly all my life. I'm currently taking 2x500mg Metformin but I really don't think it does anything for me. In order for me to keep my numbers below 200 I have to walk for at least 1/2hr after each meal, sometimes 1hr depending if I've had a few more carbs. If I cannot walk I try to avoid any carbs with meal. Sometimes its not possible and I do spike and just live with it.

My current Dr has labeled me type 2 because she only knows 2 types (never even heard of LADA/1.5). My a1c isn't bad, I would like it in the 5 range but without insulin I don't think this is possible for me.

You might want to try walking after meals if possible. For me it can reduce my BS by almost 1/2 if I walk for an hour after...

Good luck... Paul

Hi -

I couldn't tell from your profile if you use a syringe or pens but at your level of insulin usage pens are much cheaper. An open vial only lasts about one month and you'll waste far less insulin using 300 unit pens.

Maurie

I used to be an excercise finatic. Ran 5 miles a day and 3 hrs in the gym. Now cardiovascular excercise actually raises my BS only to drop 6 hrs later to all time lows. Thanks for your input..sometimes it really bothers me when people see me as anorexic (I've been asked) but it's also a great way to explain non typical diabetes.

I have both - my lantus is in vial and Apidra is in Pen.

Yes, it bothers me also when people say "you should eat more, your too thin"... Sorry to hear exercise raises BG. I would be lost without my walks. Walking allows me to have a few carbs (15-20) esp at dinner.

I'd switch to a Lantus pen. No use leaving money on the table :-)

Hi Sherrie,

So glad that you've found a big part of the answer!

Please keep posting about how you are doing!

Best wishes,

marty1492

I think Metformin helps, it does help to reduce the spikes after meals. If you are feeling lethargic and lack energy, you are not eating enough. I went through this a month ago.

I was off metformin, so anything i ate made my BG spike. I was feeling tired and sleepy all the time. We need calories in our body to function, taking too much insulin and not enough carbs can really take a toll on you, physically and mentally. I know they say to avoid carbs, but in my opinion we can still have some for energy, as long as you dose the insulin according to the carbs you had.

If the carbs make you spike really fast, i think metformin helps slow down that process by storing the glucose in the liver and not releasing it so quickly in the bloodstream.

The only way to know is to Test, test and test again until you find the right dosage.

good luck!

LADA is type 1, just a slow-developing form of it that occurs later in life. Same basic thing happens (immune system destroys insulin-producing cells in pancreas). If your c-peptide levels are low then, yes, you are likely a type 1 of some form or another.

Good for you for thinking about helping a child with diabetes! I have heard about kids in foster care who, because they have type 1, are hard to place. Please let your case manager know you're potentially interested in such a situation. While it would be a challenge, the difference you could make in the life of that child would be significant!!

Hang in there!

Sherrie, I am Type 2 and on an insulin pump plus metformin. Like you I used to have a lot of stomach side effects due to the metformin because I was taking the immediate release formulation. The extended release formulation is purported to have much fewer GI side effects. I found this to be true. All my side effects went away within a couple days after changing to the extended release product. Your post did not specify if you take immediate release or extended release. If you take 1000mg as one tablet - it is immediate release. I would suggest you consider changing to extended release. The highest strength of extemded release is 500mg, so you would have to take two tablets in morning and at night.

Like you Paul, I have been on a low carb diet with excessive exercise to control my bg's. I was finding it hard to exercise and compete because of the low carb intake. Nothing I took oraly helped, but exercise sure did, finally realizing I could not perform at a high level and keep the carb intake down, I found an endo that understands Type 1 honeymooners. He started me on a corrective dose of Humolog Insulin in a pediactric pen, using a sliding scale to address the numbers over 200. This has been a perfect solution as I have increased my carb intake to match my exercise level, I have stabalized in weight and begun to put muscle back on. If I do see a high number a 1/2 unit will quickly correct as I am very sensitive to Insulin due to the consistent exercise. My last A1c was 5.7. I am 5'9" and 142 lbs. I agree with Mylitta that Insulin is what we need to control bloodsugars.