So I have a big problem that myself and my doctors can not seem to figure out and get under control. It’s been going on for almost two years now. I have listed below all the factors I think are connected and related and affecting this issue and I would appreciate any suggestions. The problem is driving me crazy with frustration and making it difficult to overcome depression. And I just want to give up after all this time with no positive results.
I am a type 1
I take Humalog and use a pump
I also have PCOS
I am on birth control pill and 2K mg of metformin a day to help control it’s symptoms
I am severely insulin resistant
The Metformin has not helped much with insulin resistance
I do walking, weight lifting, yoga, and everyday chores to stay active
I eat virtually no carbs, I only eat 700-1000 calories a day…if I eat any more no amount of insulin seems to bring my BG down!
Despite everything I’ve tried I am continuing to gain weight
Despite everything I’ve tried I remain severely insulin resistant
My doctors say I’m a perplexing, strange, odd case. I just want to fix this! Why doesn’t my body even want to use insulin at all anymore? I need to lose weight! I don’t want to leave my house anymore, I don’t feel like this is my body anymore. I’m 5’2" tall and weigh 220lbs now.
I am starving myself because it’s the only way I can keep my BG even close to normal.
There some short spurts of time now and then where for no apparent reason I suddenly have low BG’s for a few days in a row. And at one point I lost 6lbs without making any changes…but then I regained it and then some.
I can’t live like this.
What can I do? What is going on with my body? Has anyone else experienced this?
Tamra, I’m so sorry to hear you’re going through this!
I’m Type 2 and have PCOS. I have -crazy- insulin resistance.
• How much insulin are you using per day, total?
• Do you have any other medical conditions?
• Are you on any other medications not listed, for other conditions? Even things like allergy medications, niacin for cholesterol, anti-depressants, etc. etc. can raise blood sugars.
• Have you had your thyroid checked? Thyroid conditions just seem to go hand in hand with other conditions, especially when BGs are being wonky for no understandable reason.
• Where are the majority of your calories coming from - protein or fat? Have you tried switching the balance of where they come from?
• Have you tried a different rapid-acting insulin instead of Humalog? Some people find that one insulin or the other just flat out doesn’t work for them while another, such as Novolog, works great.
type 1, PCOS, mild gastroparesis, heart disease, peripheral neuropathy, diabetic retinopathy, early signs of kidney damage
Metoprolol, low dose aspirin, lisinopril, cymbalta, Metformin, Lipitor, Humalog, birth control pill (but many of these meds were started either after or long before the weight trouble started).
My thyroid has been thoroughly checked and is normal
the majority of my food is non-starchy veggies, my protein is normal daily recommendation, fats I try to eat a higher amount of than is recommended for healthy adult women…basically the Bernstein LCHF diet.
I have been planning to ask my endo to switch me to a different insulin. Both this endo and my previous one say my insulin is probably not the culprit. But my issues started not long (like a month) after I started on Humalog. I think that might be a bit too coincidental, don’t you?
That’s quite a dance of issues and meds you have going on. I can empathize. Due to my own blood pressure, weight, and blood glucose issues my OB/GYN opted to put me on strictly Medroxyprogesterone rather than your typical birth control pill with estrogen. The estrogen is the part that can raise blood pressure, increases risk of blood clots, and increases insulin resistance. Is it possible that you have become more estrogen-dominant over time, and thus more insulin resistant? Having your hormone levels checked might be worth looking into as a last result.
But, definitely, I think the fact that the issues started not long after switching to Humalog is too big of a coincidence to ignore. If your Endo is willing to switch you, I think that’d be my first step before testing out other theories.
The weight gain started before I started the birth control. Although I have been insulin resistant for years, it’s has gotten worse since I’ve been on birth control.
I think I am going to request a change of insulin and see what happens. If I don’t see results with that, then I will talk to my Ob/gyn about a different birth control.
Thanks for the suggestions, sometimes we just need some fresh eyes on the matter.
I’ve seen a couple of posts where Dr’s were resisting letting people switch between Novolog and Humalog. I’ve switched between Novolog and Humalog a couple of times and for me they’re indistinguishable, but for some people it seems to make quite a difference. So it seems worth a try.
FWIW, I experienced a 20lb weight gain when I went from MDI to a pump. Unlike some people who talk about bingeing when they get their first pump because of the “freedom to eat what I want” (as if!) feeling, I didn’t change my eating habits or anything else. In fact my TDD decreased 10 units or more. Because I was and am on low carb, I was using a lot of Lantus relative to Novolog on MDI, and I think the big difference was switching to all-Novolog. I don’t have any hard evidence for that other than that it’s the only factor that significantly changed.
Oddly enough, TuDiabetes decided to pop your “A Rare and Strange Case” post from Jan 2015 up in my “suggested reading” list, and I clicked on it.
I see that a year ago you were on Farxiga. I’m guessing that you can no longer take these types of medications due to the early signs of kidney damage? The lack would definitely of course be impacting how much more insulin you’ve had to take since stopping it.
I also noticed that you switched from Pravastatin to Lipitor at that time, about a year and a half ago now. Oddly, this may be part of the link. Some statins seem to increase insulin resistance, but studies showed that Pravastatin actually increased insulin sensitivity. Lipitor “non-significantly worsened insulin sensitivity” while apparently Zocor (simvastatin) had more noted effects. Effects of Statins on Insulin Resistance
I would consider the possibility of each medication’s contribution to insulin sensitivity/resistance, alone & in combination. Some oral contraceptives cause more resistance than others as well, so maybe a look at other formulations would be worthwhile. PCOS alone can make weight loss or even limiting weight gain a much harder battle.
I started the Lipitor long after the insulin resistance and weight gain began, I started it just in February of this year. I was only on Farxiga for one month (Dec-Jan of 2015-2016) because then I switched insurance providers and my new provider doesn’t cover it…also I was worried about the possible damage to my already struggling kidneys.
It’s really difficult to keep track of side effects, and what is contributing to what. I wish I didn’t have so many problems to further confuse things. Hell, I wish I didn’t have any problems at all!
Thanks for the information, though, I’ll for sure keep it in mind.
Yes, I’m sure I’ve had PCOS since puberty, but wasn’t diagnosed until 2015. I’ve had a weight problem since puberty, but my weight stayed the same (no fluctuations for many, many years) and comfortable until close to two years ago when I suddenly just started gaining, gaining, gaining!
I do think it is worth it to study the meds, I’ve been wanting to work my dosages down and possibly even go off of a couple. Doctors don’t seem to keep track of whether a patient still needs a med or not. You have to be your own advocate and bring it up to your doctor most of the time.
If it’s any help at all, you definitely aren’t alone. I have Type 2 diabetes, degenerative discs, bone spurs and arthritis in my spine, hypothyroidism, fibromyalgia, PCOS, hypotension, and am overweight.
Meds for the PCOS can cause problems with hypotension so I had to be careful there. Meds for fibromyalgia can cause weight gain. I got switched to one that doesn’t but it turns out that it does reduce the amount of Metformin that the body clears from the body, so I suddenly started having massive BG lows and had to change my insulin regimen after taking it (and the Neurologist didn’t know about that side effect, whups!).
I thought I was having simple depression due to pain, but it turns out that I was having the typical low Vitamin D associated with being overweight, Diabetic, and on Metformin. My Vitamin D levels were through the floor and once I got off of that I was able to get off of an anti-depressant I was on (prescribed by my PCP without checking my Vitamin D levels first!) and that also helped my BG levels as well.
I started taking baths with a generous amount of epsom salts in them for my fibromyalgia, completely unaware that magnesium could reduce insulin resistance, and couldn’t figure out why I was suddenly going lower than normal after taking a bath every. single. time.
Some days I feel like I’m one of those circus performers juggling plates!
To my knowledge the Menstrual Cycle ends with elevated Progesterone levels. In this phase which lasts for about a week before the bleedings this will result in some insulin resistance. Depending on your birth control pills you now might have higher levels of progesterone all the time. Just a thought.
I also think that changing insulin out of the blue is a bad idea. Endos should provide one test vial first to make sure that the insulin works for the patient.
Obviously heaps going on here. We need a real life Dr. House maybe.
If at all possible, would look very closely at which meds you absolutely must take and stop the rest (at least for a trial), and this should be done in very close coordination with your Dr.
Would look closely at thyroid and adrenals, and exactly where everything is in terms of that. Would also want to be sure your vitamin D levels are optimal, along with iron levels / anaemia. If available and you can afford it would want a nutritional profile (blood levels).
Switching insulins… at least for a trial may be worth considering - though don’t make too many changes at once, and i’d want to make sure thyroid etc are optimal.
Although it may seem counter intuitive, I would consider that you may be eating so few calories that your body has totally fixed itself into starvation mode and is clinging to every calorie it can. Further, with such low calorie intake I would think it would be very very hard to get adequate nutrition. If you are suffering malnutrition, then even more your body will cling to whatever it has. I would want to look more at diet. Work with a functional medicine dr if you could find a really good one.
Agree with low carb/ even ketogenic perhaps, but maybe as someone posted above you need to look at your proportions of fat and protein. From my reading fat has next to no impact on insulin requirements. So I’d want to increase the fat by a lot to get your calories at least 1500 - 2000 calories a day. I would be looking at very high quality nutritional supplements to be sure you are getting optimal nutrients. I would be looking into juicing maybe (green veges etc) for the nutrition.
Hope these ideas can be of some help or at least give some different ways of looking at what is going on.
I am also having terribly hard time with losing weight. I am using intermittent fasting and low carb approach. It is not really working - but at least I’m not gaining.
ask your Dr about the following…
first learn that diet ketones and normal BG is good,…high BG and high ketones is bad…
fats are good for your heart and other stuff… carbs are bad.
for insulin resistance 100U isn’t extreme 200U plus is getting high.
the treatment for insulin resistance is low carb ketogenic and if you want, alternate day or once or twice a week fasting… you are probably leptin/hypothalamus resistant too, but low carb to reduce insulin is the same treatment.
retinopathy, a good statin for vascular, maybe a blood thinner… no grain,vegetable oil or margarine…,just good animal fats, butter, and olive, coconut oils
but if your A1c is high, it may get worse for a while when you go normal A1c, see specialist if you need to drop 3% A1c or more http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm
I don’t think you read this post or really appreciate @Tamra1’s story. She has been working extremely hard to manage her health with a low carb diet and get healthy. Her frustration is that her efforts to lose weight and become more insulin sensitive have not worked. I’m certain suggestions on those questions would be appreciated.
yes I read it, and correct me if I missed a symptom, the reason I specified fats was because of the 700-1,000 calorie diet
I even added fatty liver as a possibility with the PCOS. also included leptin resistance, as I felt that was important.
I was actually going to include metabolic syndrome, but where do you stop ?
I was just covering the important bases.
So let me make a few suggestions. First, on your diet. If you have been eating a severely calorie restricted diet your body may have gone into starvation mode and be hanging onto every little calorie. By my calculation you should be getting at least 1600 calories a day, even more if you are at all active. For most people doing very low carb alone should be good for weight loss without calorie restriction. So I would look at the precise calorie intake and see if a more modest calorie restriction can get you back to a more normal situation.
Second, I would suggest that you talk with your doctor about whether you could undertake some exercises to help improve your insulin sensitivity. In particular some sort of weight or resistance training or perhaps interval training.
Finally, although you found your insurance didn’t cover Farxiga, it may well cover Invokana which has been on the market longer. And Invokana comes in a combination with Metformin called Invokamet which may enable you to get two medications for a single co-pay. Invokana has been found to result in weight loss and is ok even with moderate renal impairment.
And double finally, you might also consider one of the GLP-1 drugs that have been found to reduce appetite and cause weight loss.
With PCOS you know that your hormones are out of balance. This could be the reason for your weight gain. It also contributes to more insulin resistance. The pill can raise your blood sugars and it increases your risk of complications. Yet, it does not even heal PCOS. It merely suspends your ovulations which is ironic because with PCOS you would already be anovulatory most of the time. I would quit the pill and try natural progesterone cream for the PCOS. When you are not ovulating you are not making progesterone. You are thus progesterone-deficient. Natural progesterone is not the same as the progestin in birth control pills. Look into Dr John Lee’s research on the role of progesterone in the body; its importance outside of pregnancy is often overlooked. He pioneered the use of natural progesterone to alleviate hormonal imbalances that are commonly but often unsuccessfully treated with birth control pills.
@Tamra11 This came up for me today elsewhere. Unfortunately it looks like a couple of both of our meds are on it. Not that I plan on going without my thyroid medication or my medroxyprogesterone.
