Okay, this is the first time posting on this site, and I was hoping to get some advice from some of you who are in the same boat as I.
A little aboput myself…
I was diagnosed as type 2 a few months ago, but was shocked the more I read about diabetes. I am 36, very active, and only weigh about 97 lbs (I am 5’1"). Anyway I started researching and decided to go see a new endo who tested me and said my insulin and c peptide were low-normal. Anyway, she wanted me to come back in 3 months (I go back in two weeks). I have very little first phase insulin, as I can eat an apple and spike to 160 in less than 30 minutes, although I am always in normal range by 2 hours. My fasting is another matter. I am almost always around the 100 level, give or take a few points, even if I am in the 80’s before bed.
Well, as it turns out, I am spiking overnight. I have tested about 1:30 to 2:30 am and been in the 130 t0 140 range. So she wants to put me on metformin, but I have heard that one of the side effects of met is thinning hair, which incidentally is what got me to the dr in the first place. I used to have very thick hair and over the course of the last year, I have lost so much that I don’t want to chance it by going on a medication that is known to cause hair loss. I have also heard that it can cause a B12 deficiency and can raise homocysteine levels.
I was wondering if I could have some luck with going on a basal insulin like Levemir instead. Her theory is that the met will take some of the pressure off my pancreas, but will the Levemir not do the same thing? What do you guys think?
I sure can understand why you don’t want to go on a drug that thins hair. Not my problem, thank heavens. But, my friend has the trouble with it and they make remarkably few products for female hair loss.
One question I have, though, is there another oral drug you can go on without that side effect? I just know that I didn’t want to go on insulin at first. There are sooooooo many oral drugs out there that I can’t help but wonder if the DR couldn’t suggest another type of drug instead of your suggestion of insulin. Believe me, I don’t think you want to be injecting yourself 3-5 times a day. It gets older faster than taking pills. Sit down and have a talk with the DR before agreeing to take anything else. Let her know that you are absolutely opposed to losing more hair. As a woman, maybe she would understand faster than a male.
Hope all goes well with you and you find a drug that can help without having to go on insulin. Remember, there is a time for everything on this earth … in it’s season.
Have you been checked out for PCOS? It sounds very odd to me that you should be so slender and active yet be Type 2 diabetic–that’s not the normal pattern, and if you were taking in the kind of high-carb diet that would put you into insulin resistance (and from there, diabetes) you wouldn’t likely be so skinny (unless you’re so incredibly active you burn it all off, and even then, all that exercise should promote insulin sensitivity). My gut reaction is, there’s something else going on. Take a look at this article here: http://www.womentowomen.com/insulinresistance/pcos.aspx and see if it rings any bells. There are a number of things you can do to address the problem if you do have PCOS. BTW Metformin tends to be the drug of choice for PCOS, so it’s interesting to me that your doctor reached for that without stopping to think about the possibility of PCOS.
Are you able to get a second opinion by another Endo? I did on another matter, and ended up staying with the second doctor because his practice/personality/etc seems to be a better fit. Just remember, you can never be too kind to your panceas~
I would certainly think so, injecting exogenous insulin will take the heat off your own pancreas as well as metformin. 100 fasting is a very good reading. Just shows that fasting blood sugar is not a good test in the beggining of diabetes for detecting the disease. 160 after eating an apple is still not enormous but not a good sign for the future. According to the CMA (Canadian medical ass) treatment protocol you would not qualify for any treatment much less insulin. They liked to wait till your pancreas is completely destroyed before putting you on insulin. This was the situation 10 years ago.
The only thing that insulin does not do is reduce insulin resistance which may not even be a problem for you, in your case it is more about the pancreas not working as well as it should…
I dont know about patient rights in the USA but I would fully agree with your desire for insulin right away. Some long lasting like Lantus or Levemir in the beggining and if 2 hour after meal numbers are still not good you should demand some fast acting also.
Hopefully, but by no absolute certainty, the insulin may keep your diabetes as a mild (fun) disease instead of a horrible nightmare once the pancreas dies completely.
Dear Saundra,
I can see why you don’t want metformin. However, going on an insulin at your stage seems a bit of overkill with possibility of hypoglycemia at this point.
There are lots of other oral drugs, but you need to look them up so you can be aware of their side effects, too, and be knowledgeable when talking with the Endo. The Endo and you need to be together on your goals and what you’re going to try first, and then the next option.
I don’t know about all the drug’ hair loss potentials! There’s fotamet, glumetza, and riomet that all have the same /similar effect as metformin. These are biguanides which will come up in google. Your Endo was suggesting one that does not cause low blood glucose and that could have carbohydrate inhibitors and sulfonylureas and insulin added later.
There are also carbohydrate inhibitors that slow the absorption of carbs. And there are drugs that increase insulin sensitivity (Actos). With Actos, liver tests are required.
There’s prandin, a meglitinide, which works on post meal glucose.
Go into google and look at insulin sensitizers or put the name of the drug in. Read on the type 2 forum.
Keep real good records, write down exactly what you eat, look up its carbohydrate content, write down the grams, and test at 1 hour, then 2 hour after. A few of those instances will give your endo more info about what you need. Your tests during the night will be interesting to her, too. You will notice a difference in eating fruit versus a starch such as cereal, pasta. You will notice a difference between low glyemic scale foods and high glycemic scale foods. Download the glycemic scale so you can see the difference.
Finally, don’t be afraid to discuss treatment options. She’ll see you’re going up at night if you present your data in the clearest form possible. Do a chart with times along the top and dates along the side.
And keep us all up to date with what you decide on! Best wishes.
You’re stereotyping. I read an article that Jenny or somebody here sent me to and they said that T2s don’t necessarily have to be fat! It is more usual, but not a have-to.
Hi Saundra. I don’t mean to be nosy, but what was your C-peptide level (was it taken while fasting or after eating)? Also, does T2 run in your family? Perhaps you are just in the honeymoon phase and still producing insulin? I had a low (but still normal C-peptide) and tried varying doses of Metformin. While it didn’t cause thinning hair, it didn’t help my BG levels either. After trying another oral–Januvia–I switched to a basal insulin–Lantus–and saw immediate improvement. While I still have to eat fairly low carb (because I’m not using a fast-acting insulin), my fasting and post-prandial levels are much improved. You do, however, have an increased risk of hypos when using insulin vs. metformin. Have you tried low-carbing? An apple would throw my BG over 160, too. Just a few things to think about.
I guess I must have left out the fact that the second endo said I was not type 2. Sorry. She thinks I am type 1 or 1.5. I didn’t think I was either, that is why I got a second opinion.
As far as my numbers, sometimes I think there are fine, and I try not to worry, but she seems to think they need to be treated. As far as PCOS, I asked my gyno, and she said no, I have no symptoms of PCOS.
Thanks, I deserved the spanking–I shoulda known bettah, as the saying goes. But even so… it still sounds a little weird, like maybe there’s something else going on in there, and the main message I was getting at was, if she hasn’t been looked at for PCOS, that’s something to think about. But further down, I see that PCOS has already been ruled out… so, moot point.
Hi Saundra: If you have adult onset Type 1 diabetes (which is what Type 1.5 and LADA are), then you should be on insulin, even if it is just small doses of long acting. Exogenous insulin that provides good blood sugar control has been shown definitively to prolong the life of remaining beta cells in newly diagnosed Type 1s (making complications less likely). Pills for Type 2 diabetes in most cases are not appropriate for those with Type 1 diabetes. Good luck to you! We Type 1s (especially those of us diagnosed as adults) really have to be our own best advocates within the medical system.
Honestly, metformin is a truly great drug. I have heard a few anecdotal stories of hair loss on it but nothing on any scale considering how much of it is taken. The B12 deficiency is something to keep in mind but are many more plus points such as the benefit to the heart, cholesterol, triglycerides, beta-cells, aging in general and generally reduces mortality rates in diabetics. All of this is of course if you don’t get the GI side effects that many do.
To note, there was mention of fotamet, glumetza, and riomet having similar effects to metformin. Well, they all should because they are all just different names for metformin! Fortamet and glumetza are extended release metformin and riomet is liquid metformin.
Your story sounds very much like my own. I was originally diagnosed type 2 put on metformin and had a bad experience. The stuff made me ill, crampy and lethargic. After a meeting with an educator she mentioned I might be type 1.5 and provided me with information about a blood test for the GAAD antibody which is a maker for type 1. Well, I am actually a type 1 in the honey moon phase. Actually, these days it seems the honeymoon is ending:(.
I am not sure if you have had this test done but interpreted correctly it will help you nail down the diagnosis.
Having been on metformin I would vote for insulin any day of the week,
Good luck on your search for a diagnosis but do not rest till you get a plan to help you manage your BG that works for you.
Amen to what you said. I cant get out of bed after 3 weeks on the stuff. My friend Cox who provides me with snippets of medical wisdom said you can live with diabetes but you cant without a liver. Here everyone is a type 2 on diagnosis unless young or proven othewise. However me a diabetic on metformin that lost 65 lb and thats a real winner. Human specific stuff it is.
I have been around. Just not very verbal.