A Decade of Problems

Hi everyone. I've been having a lot of problems over the last decade or so regulating my blood glucose levels. During this time period, I have worked with several endocrinologists, dietitians, exercise specialists, and just about everything in between to get some help with this, but everyone says that the tests that they run show no complications and no true problems with my levels. You may be thinking, lucky you. What's the problem then?

The problem is that the test results do not reflect what is going on in my body, mostly because they're based on averages. Let me give you some context before I explain the symptoms.

I'm a Type 1. I've had Diabetes for 15 years. I'm on a medtronic paradigm insulin pump and take apidra. I also am hypothyroid.I have switched through several diets, but have had best control on the Paleo diet and removing gluten and dairy completely. My last A1C was 6.3, which is pretty decent. The only problem is that it's reflective of the average blood glucose levels I have on a daily basis, which are often many lows and some pretty high blood glucose levels. However, the kicker is that the lows and highs are not consistent from day to day and they often do not correspond to meals. Additionally, all of my blood tests constantly come back with normal results, so that's not helping anything.

I've been monitoring my levels very carefully and recording basal rate changes whenever I implement them. My body is very sensitive to sleep deprivation, stress, and additions of anything that I have removed from my diet, which I almost never deviate from. I often sleep 8-9 hours a night, but sometimes 7 hours.

Despite all of this tight wad control, my blood glucose levels can run from 30 mg/mL to 350 mg/mL daily. The highs are not reflected in my A1C because I can feel the highs coming on and I correct very quickly. I've checked that my correction rates for highs are effective and not overkill dosages and they seem to work very well. It is the same case for my carb dosages. This is why I'm thinking that the problem may be something else including, but not limited to problems with the insulin I am using, another possible medical issue (infection?), or something that I'm not thinking of.

Here is also a list of the kinds of symptoms I've been experiencing over the past few years that have lasted so long that I'm not sure that they're completely normal (i.e. related to BGL fluctuations):

-mental fogginess (inability to think to full capacity. even doing very simple things is very difficult at times.)
-Inability to work even decently because of the mental spottiness.
-unexplained and unusual (no trend) lows and highs.
-inability to speak well without tripping over words more than occassionally
-constant exhaustion
-mildly spotty vision (I've seen an ophthalmologist about this- she says she can't see anything wrong).
-Inability to sleep well.

I also experience other symptoms related to my hypo and hyperglycemic struggles, but these seems a little different to me.

Please let me know if you think of anything that might be contributing to these symptoms. I'm losing my mind here...

Thank you!

For the spotty vision I highly recommend to ask for an angiogram of the eye. In this procedure a contrast liquid is injected into your vains and then a sequence of digital photos of the eyebackground is shot. These photos would reveal tiny and invisible bleedings that can start to happen before anything is visible in the eyeground.

Related to the variation of your blood glucose:

Have you figured out how the progesterone of your menstrual cycle is affecting your blood glucose? Usually progesterone levels are rising in the week before the menstrual bleedings. This rise will cause insulin resistance. With a higher basal rate in this week you can work against the resistance. This will reduce the influence of the cycle. Take more of these influences out of the equation will allow you to see the causes for fluctuations more clearly. At minumum you should keep track of your cycle. Starting from day 21 you can then watch for signs of increasing resistance. Then you can find out which TBR setting will help you to overcome it.

More generally I would ask your endo about Metformin too. This drug will make you more sentitive to insulin by moderating the glucose output of your liver. This drug can be hard on your stomach but at least you will find out if it is indeed the liver that is causing your fluctuations. If Metformin turns out to be benefitial you can try different approaches to find more stomach friendly variants (minimum dosage, drugs with slow release etc).

I have no ideas to offer but keep up your hard work. I wouldn't like the highs and lows either but at least the 6.3 is very good.

I have sleep apnea and your symptoms match apnea. Have you ever had a sleep study done?

I don't know what could be causing all of this but I have a lot of fluctuations too, not as dramatic as yours and I'm concerned about it. I would definitely go to a retinologist if you haven't and get that test that Holger suggested too. You don't want to take any chances with your eyes.
Figuring out how your hormonal levels may be affecting the fluctuations is a good idea too. I'm not sure about this but I think it is still better to have a lower a1c even with some fluctuations than a really high one, so that is great! I think there could also be something else going on besides diabetes, something neurological maybe? Have you thought about that?

I forgot to say the sleep issue brian mentioned makes sense too.. I need tons of sleep to feel good... 9-10 hours. I'm also sensitive to sleep deprivation. Lack of quality sleep could be causing those symptoms.

you mentioned : hypothyroid ...have you received follow up tests ?? ..is the amount you take daily enough ??

Hi everyone! Thank you for getting back to me so quickly and for your thoughtful ideas. I don't know how to respond to your posts individually, so I'll do my best.

Holger Schmeken: I think that asking for an angiogram is a good idea. I'll request that the next time I see my ophthalmologist.

I have noticed higher blood glucose levels the week before and during my menstrual cycle and I have adjusted my basal rates accordingly. The problem is that the basal rates I use are not consistent between cycles. However, sometimes they are very close. The other problem is that my BGLs are not always higher. They're just higher at certain times during the afternoon, namely after breakfast until late afternoon. Do you know if progesterone is the only hormone that could influence blood glucose levels during this period? I'll have to look more into this. It seems very interesting.

Additionally, I've been monitoring my insulin intake and BGLs during the week before and during my MS and although there are trends, the amount of insulin taken sometimes varies greatly from day to day. This is why I haven't ben able to set up oone temp BR to treat it. I would need one for each day, if I could narrow down what I need for each day. That just seems a little abnormal to me though. I don't know any other diabetics who fluctuate as much during this period.

II will look into metformin, especially because many of my complications seem like they might be related to a release of abnormally high amounts of sugar during certain times of the day (Dawn phenomenon aside).

Additionally, the fluctuations do not only occur during the week before and of my MS. This is strange to me, Especially because I can't see any noticeable trends in the highs.

Don: Thank you for the encouragement. It's always nice to have support from someone who can empathize with me about my situation.

Brian: I have considered that my levels might be effected by sleep apnea. I haven't had a sleep study done to investigate the cause of these symptoms. Sleep apnea runs in my family. I've heard that most people that have sleep apnea snore. I don't snore when I sleep, according to my family and friends. I'll definitely have to look into it though.

I've noticed that hypoglycemia during sleep often contributes to these symptoms, but I don't think it's the main cause because the hypoglyemia happens very seldom and the symptoms are persistent.

Thank you for your insights!

meee: I agree that Holger's idea about seeing a retinologist is a good one to try out. I definitely don't want to take any chances with my eyes. I've considered that something else might be going on. In fact, I'm pretty sure that something else is going on. I've considered that the problem might be neurologically related, but I don't even know where to begin to try to combat something like that other than seeing a neurologist and explaining my symptoms, which could honestly be related to a lot of things. I'm afraid that my concerns will not be taken seriously because, as I have mentioned before, many doctors have overlooked these symptoms in the past. This is, in fact, the reason that I have become so committed to caring for most of it on my own. That's not to say that I'm not still seeing anyone. I am, but I am definitely the primary source of care for myself.

Additionally, I think that a lack of quality sleep might play a role as well. I will have to look into that as well. Thank you for your feedback.

RogerAlyn

I call myself a "Brittle Diabetic" too and it's nice to know someone else that is going through the same sort of things. I've noticed that my blood sugar levels are much MUCH better when I'm not eating gluten and dairy. There have been some recent studies on the effects that gluten and dairy can have on diabetics. I'm working with a few guys at Specialty Health in Reno, NV, one of which sent me information about a few studies on the affect of dairy and gluten on diabetics as well as the affect of sleep deprivation and a few other things on BGLs. Here are the links that he sent me:

http://robbwolf.com/2011/10/17/type-1-diabetes-the-numbers-dont-lie/

http://qjmed.oxfordjournals.org/content/98/8/547.long

http://www.ncbi.nlm.nih.gov/pubmed/14519706

http://www.ncbi.nlm.nih.gov/pubmed/22729336

http://www.ncbi.nlm.nih.gov/pubmed/10931424

http://www.ncbi.nlm.nih.gov/pubmed/15220190

http://care.diabetesjournals.org/content/33/11/e142.full

http://www.ncbi.nlm.nih.gov/pubmed/20357381 - Another one on Sleep

I haven't heard much about foods that help modulate BGLs. I used to take soluble fiber, but I don't know if I'd be able to find a set that doesn't have gluten protein or dairy protein in it. I'll definitely look into it though. This is really interesting information. Do you know what other foods help modulate BGLs?

Thank you for the support. It's great to know that someone else is going through the same thing, though it isn't great to know that you are suffering as well. This disease can just be a little lonely sometimes. Especially because I am going to school with a few other diabetics who do not experience as many fluctuations and also are not half as disciplined as I am about it. To be clear, I think it's great that they aren't experiencing severe fluctuations like I am, but I can't help but be a little jealous about it...especially because it is very painful at times. I' going to have to think of some questions to ask you, because I really like the idea of us helping each other out.

Thank you for all of your help!

nel:

Yes, I have received follow up tests and I do take a thyroid supplement. The amount of the supplement that I take is very high, but none of my physicians have seemed too worried about it. The amount I take daily is definitely enough based on the blood tests they have taken.

Thanks for mentioning the idea!