Long battle with confusing T1D problems

Hi everyone, Patrick here.

This is my first post on here so ill try and keep my intro short and sweet and hopefully some of you can shed some knowledge on my situation.

Im 24, diagnosed 7 years ago and manage my diabetes very well with my hba1c usually around 6.2 - 6.8

For the past 2-3 years my body seems to become very resistant to my insulin to the point where im taking 1unit per 5grams of carbs when usually i take the standard dose of 1unit per 15g carbs.

Ive been admitted to hospital for hypokalemia due to taking around 70units of insulin in a day just to keep my sugars down and normal, but i cant seem to figure out what could be causing this insulin resistance and all the problems that come with it.

Im ALWAYS sore, especially in my legs after taking a lot of insulin. I also had blood work done and my potassium levels were NORMAL and my CK levels came back 2700 where the range is between 100-400 where i live. So my body is experiencing extreme levels of muscle pain and insulin resistance to the point where i cant work my job, or go to the gym or live a normal life.

Im currently taking T3 to see if it could possibly be from hypothyroidism so well see if that fixes the insulin resistance and muscle pain.

If anyone could shed some light on the situation or share your own experiences id appreciate it very much!

ps. My endo and normal GP cant figure out what is going on, the next step for me is to get skin and muscle biopsy and get specialist work done to see if there is any chronic immune disease or anything else causing it.

(sorry for the long paragraph but there was a lot to touch on, and probably even more)

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Hi @SkinnyCapp welcome to TypeOneNation. Just a thought, because I’m not a doctor, have you considered talking to someone who specializes in autoimmune issues ( not just endocrine). I mean if you have pain you might want to rule out lupus and celiac and other possible inflammation issues elevated allergies. That’s all I got. Hope you are ok. Good luck :four_leaf_clover:

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Hey Joe thanks for the reply! After this thyroid experiment Im doing to hopefully fix things up that was definitely on my list of things to speak to my GP about and get a referral for. Hopefully it could just be a food allergy to something im eating, problem solved!

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It might be a good idea to consult with another endo. If you’ve done well by the first one for all this time - and it seems you have - it would be a second opinion (as opposed to switching doctors for some).
I’m not familiar with CK tests so I had to Google them (I know, I know) and found that CK can have to do with muscle and skeletal issues. Did your GP recommend that you see a specialist? Since I don’t know anything about CK I’ll share what I imagine I would do in your situation - possibilities to consider related to that and just overall:

  1. Some people find certain formulations of insulin work better than others. I would ask if a different one might work better. It’s at least worth asking.
  2. I see my primary care doctor as the first line of treatment if I can’t figure out what’s happening. They may send me for tests and then refer me to someone in the appropriate specialty/specialties based on the results if it is not something they can manage. I would talk to my PCP (or your GP) about what the possibilities could be, and get recommendations from them on who to see. One possibility from Google was neurological. My first thought would be to consult with a neurologist, but again there may be others your GP would recommend.
  3. As a side note - which may not apply since you are able to get your numbers down - in my case if I’m not able to get them down - with either my pump or injections - I find I have some sort of infection running. They’ve always been internal for me (no untreated cuts or that kind of thing) - a UTI or a tooth going bad - and in my case (note I use that term repeatedly for a reason - this may or may not apply to you) it was the first and often only symptom. You might check into that.
  4. One final thought - and this is a long shot - my suspicious little mind wonders if there may be an actual issue with the insulin you are taking. Of course insulin is highly regulated for safety, but it might be worth saving some of the insulin and the package/bottle it came in to rule out the possibility of something wrong. I don’t know how to go about it but you could speak with your endo. I’m probably way off and don’t want to cause a panic for you or on the forum. It’s highly unlikely but I’m an out of the box thinker and like to consider all the possibilities, however remote they may be.
    I wish you all the best. Hopefully hard work and perseverance will get to the bottom of your medical mystery and start you on the road to treatment and recovery. Please keep us posted.

@SkinnyCapp Hi Patrick, and welcome to the JDRF TypeOneNation Forum! As you know from reading the sign-up agreements, members on here do not offer “medical advice”, but rather tips and suggestions based on individual experiences while living with diabetes; I’m not a medical doctor so what I say is “stuff” I’ve gathered during the seven decades I’ve used insulin to keep me alive. A couple of points I’d like to make:

  • A body’s “sensitivity” to insulin changes over time, and from time-to-time. Nothing unusual about that; my current daily average is about 20 units while eating 200++ grams of carb every day - in the past, I’ve needed more than 100 units/day while eating about the same foods.
  • For autoimmune [TypeOne] Diabetes, there isn’t anything like a “1:15 gram standard”. Insulin to carbohydrate ratios, for most people with T1D vary during the day; for instance, my breakfast ratio is CURRENTLY 1:9.2, and my supper ratio is 1:18.
  • Your Hemoglobin A1c readings are impressive, indicating an average body glucose level between 125 and 150 mg/dl; Congratulations! Look too at your glucose range during each day.
  • Did you mean HYPOGLYCEMIA [low glucose] caused hospital admission after you took 70 units of insulin, or HYPOKALEMIA [low potassium] ? Hypokalemia develops [slowly] over time and Insulin does not cause it. Your hypokalemia condition migh fit better on another forum.
  • Insulin resistance can be a very serious condition, and a good endocrinologist can diagnose and guide you in management; Lilly has been making an U-500 strength insulin for this condition since the standard strength insulin changed to U-100 in 1974.

I wish you well in your search for answers to your CK issues. In this day of Medical Specialty, referrals appear the way conditions are handled; I regularly see three in addition to a very good GP and an excellent Endocrinologist.

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Hey Dorie hope your well!

I was on novorapid and lantus a long time ago when i was first diagnosed and i thought the same thing, maybe my body is just not responding to this type of insulin that great anymore. Since then i switched to fiasp (fast acting) and levemir (slow acting) and it was okay for a couple weeks then same thing happened: insulin resistance like crazy, muscle pains along with very high CK inflammation levels and lower potassium from high insulin dosage. This makes me think perhaps its not the insulin thats causing this.

Ill get blood done fairly soon checking thyroid function levels along with potassium and CK levels and ill keep you posted with how things go :slight_smile:

Hey Dennis,

Yes yes i completely understand the standard 1unit per 15g carbs changes throughout the day because of when we take our slow acting insulin along with exercise levels and also depending on the type of carbohydrate intake we have. I only said that number because among most diabetic 1unit per 10-15g carbs is standard from breakfast untill late arvo, unless other medical condition play a factor.

Hypokalemia caused my hospital admittance. I’ve never had a hypo fit with blood sugars I always feel the shakes and sweats when my sugar gets down below 3.4
Insulin does actually cause hypokalemia aswell, trust me i know. With excess insulin in the blood stream not only is it depositing glucose into muscle/fat/liver cells, its also deposits electrolytes and potassium is one of the dangerous ones when low. I was taking 50-60 units of insulin for a large bowl of nutrigrain, causing potassium levels to drop extremely low and cause my paralysis. Happy to answer any other questions you have in regards to this.

Thank-you for your reply mate, I’m happy to put forth my experience with excess insulin requirements (up to 200 units of fast acting per day) and what negative impacts it has on the body.

If you do a search for fiasp on the forum it seems a number of members have had issues of some kind with it. I don’t remember specific details but some may have had similar responses to it. Just something to add to your checklist. Keep us posted!
Oops - never mind. I didn’t read your response thoroughly - apologies.

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You mentioned 50-60 units for a serving of nutrigrain, which made me think about the glycemic index. In addition to our our aside from carb content, some foods cause a fast, sharp ride in glucose while others are more moderate and keep numbers stable longer. As @Dennis wisely advised no one here is giving medical advice - just sharing experience or suggestions to consider. Perhaps consulting a nutritionist about incorporating the index might be of help. Here’s a website on the index of you would like to do some research: http://www.glycemicindex.com/index.php
Regarding potassium - again I am not a medical professional but when my mother took Warfarin she was advised against taking potassium rich foods (she surely missed her green leafy vegetables, and bananas, but they’re are others as well). Potassium issues could be a separate issue of their own as well and you might consult with a specialist in that.

I understand GI of foods, ive studied nutrition and personal coaching for 5 years. The potassium issue is not a seperate issue i can assure you, it was purely causing by excess insulin dosages. Im currently doing ketogenic dieting and my potassium is absolutely fine, normal levels. It only drops when i take excess insulin. If you dont believe me thats fine believe what you wish Im only providing you with my experience and what many doctors have spoken to me about.

thankyou again for your input and GI references :slight_smile:

Apologies if I appear not to believe you. We learn about each other as we share more about experiences, and sometimes things the original writer shares later help clarify what they wrote before, which in turn helps fill in pieces of the puzzle. Your nutrition studies are invaluable so I wonder (to learn, not to challenge you or your experience) what your or would happen if you took in some potassium rich did in anticipation of that blood sugar drop and the consequences - would that or does that help? Just trying to learn.

It’s not the blood sugar drop, I could have stable 6.4 blood sugars and be taking exogenous insulin to cause the drop in potassium. And eating high potassium foods in an attempt to keep levels high doesn’t work, I’ve tried potatoes and other foods high in potassium and it still drops without IV potassium in a hospital bed

Take a peek at the Autoimmune Protocol (AIP) diet and FODMAPS, too. It’s cumbersome, yet worth a try if your body responds to it favorably. I have absolutely no idea why I am insulin-resistant when I eat no carb no fat cauliflower, yet it spikes my blood sugar in the middle of the night when I eat it for dinner. It’s a cruciferous veggie, and therefore eliminated on the gas reducing FODMAPS diet, yet insulin resistance isn’t really a part of that diet, it just works. The same might go for AIP, as its purpose is to reduce overall body inflammation. For me, it reduces nerve and arthritis-like pain, yet maybe it will help with your insulin resistance, too?? Caffeine can also spike my blood sugar from its adrenaline effects. It’s more likely that you have another condition concurrently happening that is effecting your metabolism, yet some of this dietary intervention was quite powerful for me in pain reduction during my weakest periods. That must be frustrating for you. Good luck with your next round of tests.

Hey thanks so much for your insight! I’ll definently look Into it further :slight_smile:

I have experienced similar problems and found it difficult to find a Dr with much experience in cause and to get it resolved. I am from the Midwest so I always refer to Mayo clinic for info. I added a Total CK test to my lab paper and found elevated CK levels. I believe mine is related to hypothyroidism that is another autoimmune disorder diabetics experience. You should lookup hypothyroid myopathy This is not medical advice just advise as I am not a medical professional but I do have similar experiences and can read…