I’ve had uncontrolled type 1 diabetes for a long time now. Recently, I’ve decided to buckle down and really work on getting my bloodsugars under control. My goal is to bring my 11.something A1c down to at least a 9 by Xmas. The insulin I am on now is Lantus and Apidra flexpen injections for the last 2 or 3 years, and have been diabetic for 12 years. I have not had consistent bloodsugars for years now (my own neglect) and now that I am actually DOING my insulin injections and getting good bloodsugar readings consistently, I’m noticing strange side effects that make me wonder if it’s the insulin or something causing them. Whenever my bloodsugar stays within a normal range (70-130) for a day or two, I get sinus allergy-like symptoms. My sinuses become completely stuffed up, my eyes get swollen and itch, my face, hands, feet, and basically my entire body gets swollen and puffy, and my ears itch. I walk around feeling like a suffed sausage in my own skin! I don’t have any allergies to things like pollen, dust, or pet dander, and I do not recall ever having this problem before. Furthermore, all of these symptoms are exacerbated when I wake up in the morning, or when I wake up from a nap. But here’s the thing- as soon as my bloodsugars become high again, or when I skip a couple of insulin injections, all these symptoms go away. What’s going on?! Could I have an allergy to my insulin? Does anyone have any insight on this? Has anyone even heard of something like this happening? I could really use some advice, as my doctor has thus far been unhelpful, and I don’t have another apt. till mid November. I feel discouraged, upset, and pretty annoyed!
I would get a referral to an allergist so you can ask them. I don’t know if there’s any kind of test for an insulin allergy, but there might be. Personally, I would think a drug allergy would have more severe symptoms than what you describe, but who knows.
Also, you can develop allergies at any age, so it’s possible you’ve developed allergies to pollen, grass, dust, etc. even if you never had them before. I didn’t have any allergies growing up other than one severe food allergy, and all of a sudden when I was 24 I developed TONS of allergies to pollen, grass, weeds, mold, dust, dust mites, animal dander, and probably some other things I’m forgetting. They have been getting worse every year, too. They are year-round (though spring and fall are definitely worse than summer and winter) and cause similar symptoms to what you describe—stuffed up, sneezing, itchy nose/throat/ears, itchy/red/puffy/watery eyes, coughing, sometimes even hives if I’ve touched something I’m allergic to.
Good luck figuring it out. Hopefully it’s not insulin, as that would be a really inconvenient allergy to have!
On one my other forum(s), we did have a Type 1 who became allergic to insulin. We never did learn the outcome, though, as the person hasn’t been around for quite some time. Call your doctor in the morning, just to be on the safe side. Don’t take any chances, get it checked out.
Stress can also cause some of those symptoms, BTDT when going through a nasty divorce a long time ago.
Jen is correct on the allergies can hit at any time. I have some of those that she has.
Trisha
Get to the doctor immediately. Waiting until mid-November is not an option (IMO). Tell the doctor’s office this is pretty much an emergency, because you can’t keep taking your insulin and having this happen. There are additives in insulins that can cause allergic reactions, and sometimes those reactions can get progressively worse over time.
Have you tried taking a benadryl and seeing if the symptoms go away?
Also, I know some people report odd symptoms when they first get their Bgs under control, but to me it sounds like you’re having more of an allergic reaction.
I have to tell you, allergies tend to occur in proportion to the allergen. You are describing a condition that is proportional to blood sugar, as though you are allergic to low blood sugars.
That being said, you can be allergic to insulins, but the condition is rare. The basic symptoms are:
Red welts
Rash
Rapid swelling under the skin and mucus tissues
Drop in blood pressure
Shortness of breath
In a mild allergic reaction, the symptoms (like rash and welts) will be localized (at the injection site). A body wide response (Anaphylaxis) is a much more severe and additional symptoms may include
Flushing
Swelling of the lips, tongue and throat
Wheezing and constriction of breathing.
Diarrhea and vomiting
Heart racing and heart spasms
Overall nervous response
Lightheadedness, loss in conciousness
It certainly is worth checking whether you have an allergic reaction. There are some tests that can be done to confirm a reaction. But I would suggest that you probably don’t have an allergic reaction, this is about your body adjusting to tighter control.
What you may have is something called “Insulin Edema.” This occurs in newly diagnosed or poorly controlled patients after starting intensive insulin therapy. There are some that suggest this occurs because of an imbalance in electrolytes. Insulin edema is often a complication of treatment for DKA, which involves intensive insulin treatment and substantial reductions in blood sugar. If it is insulin edema, it should improve within days or a couple of weeks, but it would be prudent to see your doctor and discuss the problem. One treatment that has been used in the past is diuretics.
And never trust advice from someone with a goofy face like mine, do check with your doctor.
ps. I am sure you will be fine.
pps. And I am really proud of you for taking the steps to get better control.
Thanks so much everyone for your input! I’ts really good to know that I have somewhere to turn to for answers!
I called my doctor this morning. She is out of town now, but I have basically demanded an appointment ASAP, and got one for the 26th. Since she is out of town, I spoke briefly with another doctor in the office, and she told me to stop the Apidra and switched me over to Humalog, saying that it could absolutely be the insulin. I spoke to her around 8am this morning, and she didn’t mention the insulin edema issue, but I think I’m going to call her back about it right now! In the mean time! I have a prescription for Hydroclorothiazide, but my swelling issue is steadily getting worse, and someone suggested to me that I get a prescription for Lasix. I’ll be talking to the doctor about that, as well. In a way, I hope that IS the issue, because an allergy to actual insulin would be HORRIBLE.
In the event that this is an edema problem, are there any immediate actions I can take? How long is too long for this to last?
Once again, thanks everyone so much!
I’m seeing an Endo. (what’s a PCP?) Is pitting when you press down and there’s an indentation of your fingers on your skin? Because… that’s what I have going on in my legs right now. I don’t have hives, I’m not itching other than my eyes and my ears, but I do not have any problems with my injection sites!
Wow, thanks for this info. Both you and BSC! This has put my mind at ease, as I’m pretty sure this is what I have. I have been tested for allergies, which is why this came as a surprise for me!
Captain,
Be careful with the Hydroclorothiazide. According to the insert that comes with mine, it can raise blood glucose levels. It does for me sometimes. It can lower your K (potassium). It has screwed with my electolytes, and did have to be decreased in dosage. It can lower GFR (glomerular filtration rate). It has lowered mine some, but not enough to change my stage level.
If there is any swelling about the eyes - call them STAT (=right now!); and if especially of mouth or throat - call 911 STAT or have someone take you to ER. Also, be sure to ask the doc what immediate measures to take.
Trisha
You know, it is ok to work towards your goal. Going from an A1c of 11 to keeping your blood sugar 70-130 is a “huge” change. It would be ok to run a little higher until you got this whole swelling under control. I’m not saying to run your blood sugars up to 300, but if your swelling goes away with your blood sugars 140-200, then perhaps you can do this in steps.
And I would not take a diuretic without consulting a doctor.
I am amazed people can walk around with chronic high glucose levels and not feel out of their skull. I am not kidding when I say I start becoming edgy post 100 mgdl for a premeal. My body mind and soul only likes the 80 to 95 range and 115 max post meal. Allergic to a life support drug has got to be pretty scary ■■■■. Donnate whatever you can to Dr Faustman to help possibly end this nightmare!
When my son was first dx he was put on Lantus and humalog. when we got home the insurance put hi on Novolog. He began to itch terribly all over- it was horrific, and get headaches and nausea. We switched him back to Humalog and he has been fine since. Some people do have allergies to certain insulin (or the preservative they use) but it is rare.
It was actually my old endo from years ago that gave me the Hydrochlorothiazide, saying that it had the LEAST chance of screwing with my diabetes. Being that this guy is supposedly a huge leader in diabetes research (Dr. Jay Skylar) I trusted that it was ok. BUT, now that this has been brought to my attention, I’ll be discussing it with my current doctor!
Trisha- I have had swelling around my eyes. In fact my entire face/body is all swollen, including my sinuses. However I have not had any trouble breathing, and I have not felt that my mouth, tongue, or throat is swollen at all. In my eyes it’s mainly my eyelids, and this is when I wake up. It tends to go down a bit once I’m up and awake for a while. Is this still something I should be more concerned about? Does it pose a greater threat?
Lynne- I’ve had excellent bloodsugar for the last week or so, so I don’t think I’m dehydrated anymore. I’ve been making sure to drink lots of water. Honestly I’d just as much not take a water pill if it wasn’t so uncomfortable, but I have a full time job in which I am on my feet 8 or more hours a day, 5 days a week! By the middle of my work day, my feet/ankles look like balloons, and HURT. I’m afraid if I don’t do something about the swelling until my body adjusts, it’ll damage my joints again. Again, I’ll be discussing all of this with my doc. She has told me to call her every day until the appointment so I can keep her updated. This far I’ve had no anaphylactic symptoms, so I’m really thinking my problem is the edema. It would make sense, since I’m at 11.something, and I used to binge on candy all the time!
I was wondering about that. It’s on my list of things to talk to my doctor about! I feel the best when I’m at 70-130, but at the same time I think I would feel better without the symptoms I’m getting!
I’m sure when I first started neglecting my diabetes I felt the same way, too, however the body tends to get used to feeling like ■■■■ when it’s felt that way for so long!
Captain,
I would think, that the mouth and throat carry the greatest risk, as that will affect your breathing. When my eyes swelled almost entirely shut, it was due to the stress from that nasty divorce. But I did have hives everywhere, which was also stress induced. (p.s. This is not related, to what I wrote below, about my eyes swelling.) It’s obvious to me, that you have some sort of allergy going on, but I’m not a doctor. (just a retired trauma radiographer - not even close to a doctor!)
Just by chance, have you started a new or different brand of eye makeup? There was one morning, that I started a new eyeliner pencil. By the time I had gotten to work, my eyes were almost swelled shut. The ER doc took one look at me, wrote a script and made me go to our pharmacy to get if filled right then. I had to chew 2 of the allergy pills, before the pharmacy let me go back upstairs. Once the swelling went down enough so I could drive, the ER doc sent me home for the day. Needless to say, that new eyeliner pencil went into the trash. You do know, I hope, that eye makeup needs to be started fresh every 3 months? I’m told that is because bacteria can build up on it, especially with mascara.
Another thought…new face powder, powder puff, liquid makeup, new jewelry, new eyeglass frames?
Any new animals, clothes, furniture, PILLOWS, (just saw the part of when you wake up) etc.?
What are you eating differently, if anything at all? My gut feeling says it could be something with the food. I just can’t pinpoint the why of it.
I agree with BSC, on running your numbers higher for a bit, until you get this straightened out, and also about not doing any diuretics -other than what the doc has told you to do. The Hydroclorothiazide is a diuretic.
I think that we will all be relieved once you get this straightened out, and find what the cause is.
Trisha
Adding my experience to what bsc & Lynne mentioned. After leaving the hospital from DKA, I was swollen–legs & face. The better my BG was, the more swelling there was. The itching was from swollen skin. Not terribly motivating to get BG under control looking like & feeling like that:) Know what you mean about feeling like a stuffed sausage!
Not unusual to be puffier in the morning simply from being horizontal.
Since DKA had done a number on electrolytes & it took a while to raise my potassium levels, I wasn’t given a diruetic. Basically, I was told to drink lots of water, avoid salt & to tough it out while continuing to bring BG down. I ate foods that were natural direutics. After about 10-14 days, the swelling was gone. Hope you get relief soon!
I thought of some of those things, too! But after monitoring everything I was doing and everything I did for the last couple days, I came up with nothing. I use the same make up, and I use it up before 3 months is up. Really Ive done nothing different, which is why I’m so frustrated. I AM, however, allergic to most preservatives in food, which is why I think now that maybe this could be a combo of an allergy to a preservative in the insulin, AND insulin edema, because of going from steady 500+ bloodsugars for years, and then suddenly having 4 straight days of counts in the low 100’s! Today I’ve kept them around 150-190, hoping that the swelling will go down.
As far as the swelling goes, I’m still a freaking balloon! However, now that I know that I know a little more about these issues and know what I need to talk to my doctor about, my mind is much more at ease. I don’t feel like I’m on the verge of a panic attack! I was beginning to think I was cursed for being such a crappy diabetic for so long! I truly do feel better with my counts lower. My quality of life has just been so low because of not caring for myself, and now that my counts are better, it’s really hitting me how much better I feel… minus the balloon-y ness!
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