BEYOND frustrated.. is this just an allergy or what?
We'll skip past the fact that I CANNOT get ahold of my endo right now (seriously, that is a completely separate rant)... I've left a message, but I'm not holding my breath that anyone is actually going to call me back any time soon... I've been doing the same for almost 3 weeks and so far no one has bothered to contact me.
Back in January it felt like I hit a brick wall in terms of insulin needs. I doubled my basal rates and I:C's and corrections and for nearly 3 weeks it was everything I could do to get down to just 200. It was really just BAD all over.. and I don't know what changed, but things settled down, and I had started metformin thinking that maybe I was just experiencing some odd IR and that might help. My A1C at the beginning of Feb was insane as a result. It was back down as of 3 weeks ago, but I really do feel like I'm on the verge of double digits again, and it's not for lack of trying right now.
It was also discovered around that time (end of Jan) that I was severely hyperthyroid thanks to my endo overmedicating me (awesome, right?). My synthroid dosage has been reduced but I am 99.999% sure I am still hyper, however NO ONE at their office will get back to me with the results of my bloodwork from almost 3 weeks ago, so I can't say for sure. My CDE did elude to the fact that if I was THAT hyper (my TSH was <.01 - basically unable to be measured by the lab) it was likely impacting my insulin needs. So everything seemed to be okay for a while. My cycles are still all screwed up which is why I presume I am still hyper, but whatever, if they won't give me my lab results or call in a different dosage of synthroid, what am I supposed to do?
This past week however, I've run through an entire box of infusion sets (and then some) all failing with actual leakage, not just "hey, my #'s are high, I think my site is bad". I've even tried some other sets (the last of my Inset 30's as well as some metal sets) It's super frustrating, because I'm basically having the SAME irritation and swelling at the sites with Apidra that I had been having with Novolog and Humalog, not to mention it is now taking over four times as much insulin to notice any real change in my BG lately.. I get large lumps wherever I inject, and I feel like my body is literally fighting the insulin, and it has nothing to do with the type of infusion set - they all stop working after about 18 hours, even with modest amounts of bolus insulin.. it's like all it takes is a couple of units, and that irritation settles in, and that's it. I've been plagued by hives over the past two weeks as well, which may or may not be related, I have no idea. I actually went back to using Lantus a few days ago thinking I'd try going untethered for a while to see how that worked out since I was sick of all the failures and constantly feeling horrible because I had ketones due to no insulin, but I was still going through infusion sets just as quickly... as of today I've given up, and I'm fully back on MDI, however my lantus dosage is basically TRIPLE what it was exactly a year ago, about triple what my typical basal pattern was as of about two weeks ago, and I am still running moderately high. It's incredibly frustrating :(
Also possibly related, but maybe not, has been an increase in Petechiae-like bruising at my infusion sites.. it's really 50/50 any more if I'll have this bruising when I remove a set. It's usually not right at the insertion point, but in the surrounding areas - basically whatever is covered by the set tape, has this polka-dot type bruising. I did bring this up with my Endo about 6 months ago, and she wrote it down in my chart as likely being a developing allergy, however at that point I wasn't trying to make that connection, it's just how she wrote it down. I just wanted to know if she'd seen anything similar.
I really don't know what I am supposed to do.. Levemir didn't work at all for me so I'm automatically not trying that one again.. but it seems like my body is just rejecting every single one of the analogs. Do I go back to R and NPH to see if that helps? Do I seek the help of an allergist or something? I really am at a loss as far as what I am "supposed" to do in this case, and since I can't reach my endo at all I'm just that much more frustrated by the entire thing. I am going to email my CDE about all of this to see what she'd recommend, but I need to calm down first, since it's not her fault my doctor's office is totally sucking lately, and I don't want to take anything out on her.
Right now I feel like I am doomed to struggle with control forever, and take massive doses of insulin for no reason other than my body doesn't like the stuff - and I really do want to make it clear this isn't really typical IR.. it's localized irritation at the injection sites - I feel like a majority of the insulin is being rendered useless by my immune system immediately.
Back in January it felt like I hit a brick wall in terms of insulin needs. I doubled my basal rates and I:C's and corrections and for nearly 3 weeks it was everything I could do to get down to just 200. It was really just BAD all over.. and I don't know what changed, but things settled down, and I had started metformin thinking that maybe I was just experiencing some odd IR and that might help. My A1C at the beginning of Feb was insane as a result. It was back down as of 3 weeks ago, but I really do feel like I'm on the verge of double digits again, and it's not for lack of trying right now.
It was also discovered around that time (end of Jan) that I was severely hyperthyroid thanks to my endo overmedicating me (awesome, right?). My synthroid dosage has been reduced but I am 99.999% sure I am still hyper, however NO ONE at their office will get back to me with the results of my bloodwork from almost 3 weeks ago, so I can't say for sure. My CDE did elude to the fact that if I was THAT hyper (my TSH was <.01 - basically unable to be measured by the lab) it was likely impacting my insulin needs. So everything seemed to be okay for a while. My cycles are still all screwed up which is why I presume I am still hyper, but whatever, if they won't give me my lab results or call in a different dosage of synthroid, what am I supposed to do?
This past week however, I've run through an entire box of infusion sets (and then some) all failing with actual leakage, not just "hey, my #'s are high, I think my site is bad". I've even tried some other sets (the last of my Inset 30's as well as some metal sets) It's super frustrating, because I'm basically having the SAME irritation and swelling at the sites with Apidra that I had been having with Novolog and Humalog, not to mention it is now taking over four times as much insulin to notice any real change in my BG lately.. I get large lumps wherever I inject, and I feel like my body is literally fighting the insulin, and it has nothing to do with the type of infusion set - they all stop working after about 18 hours, even with modest amounts of bolus insulin.. it's like all it takes is a couple of units, and that irritation settles in, and that's it. I've been plagued by hives over the past two weeks as well, which may or may not be related, I have no idea. I actually went back to using Lantus a few days ago thinking I'd try going untethered for a while to see how that worked out since I was sick of all the failures and constantly feeling horrible because I had ketones due to no insulin, but I was still going through infusion sets just as quickly... as of today I've given up, and I'm fully back on MDI, however my lantus dosage is basically TRIPLE what it was exactly a year ago, about triple what my typical basal pattern was as of about two weeks ago, and I am still running moderately high. It's incredibly frustrating :(
Also possibly related, but maybe not, has been an increase in Petechiae-like bruising at my infusion sites.. it's really 50/50 any more if I'll have this bruising when I remove a set. It's usually not right at the insertion point, but in the surrounding areas - basically whatever is covered by the set tape, has this polka-dot type bruising. I did bring this up with my Endo about 6 months ago, and she wrote it down in my chart as likely being a developing allergy, however at that point I wasn't trying to make that connection, it's just how she wrote it down. I just wanted to know if she'd seen anything similar.
I really don't know what I am supposed to do.. Levemir didn't work at all for me so I'm automatically not trying that one again.. but it seems like my body is just rejecting every single one of the analogs. Do I go back to R and NPH to see if that helps? Do I seek the help of an allergist or something? I really am at a loss as far as what I am "supposed" to do in this case, and since I can't reach my endo at all I'm just that much more frustrated by the entire thing. I am going to email my CDE about all of this to see what she'd recommend, but I need to calm down first, since it's not her fault my doctor's office is totally sucking lately, and I don't want to take anything out on her.
Right now I feel like I am doomed to struggle with control forever, and take massive doses of insulin for no reason other than my body doesn't like the stuff - and I really do want to make it clear this isn't really typical IR.. it's localized irritation at the injection sites - I feel like a majority of the insulin is being rendered useless by my immune system immediately.
Tags: allergy, analog, failure, insulin, irritation, pump, pumping, sites
Replies to This Discussion
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Permalink Reply by Gerri on -
Terribly sorry to hear of your struggles. Frustrating doesn't begin to describe it. Having a non-responsive endo sure doesn't help.
Wondering if it's possible that some of the overdosed Synthroid is still circulating & what you can do to help get it out. Eat a ton of raw cabbage:)
Has MDI shooting into different sites helped at all?
I'd see an allergist & also try R & NPH in the meanwhile. Know going back on NPH isn't something to look forward to. I take R because it greatly helps with gastroparesis dosing problems. My endo wanted me to take NPH along with it to slow the action down further, but I opted for more testing & more injections instead.
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Permalink Reply by TS on -
I'd like to send you hugs, 'cause I don't have much else for you.
My only, probably useless, comment is - I've found I can't take more than 3u as a bolus - I take 3u as a bolus then "infuse" (square wave or whatever your pump brand calls it) the rest over 30 min - I get much less trouble with leakage, irritation and swelling that way and my BGs are infinitely better.
My endo thinks I'm nuts, but I'm not, I've been doing this for the last few years and the improvement is extreme and still present.
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Permalink Reply by Sarah on -
I had been doing that... which had been working well, but what is happening now is just super frustrating because NOTHING works.
I am convinced I am having an immune-mediated reaction (an arthus reaction at each injection site), and all the "other stuff" that I've been dealing with for the past 9 months or so.. is... probably serum sickness (about 6 months ago I had all but convinced myself I had RA.. testing was all negative, my Rheumatologist shrugged at me, said he couldn't do much but diagnose me with EDS, which could explain a lot of my joint pain and malaise and I am certain that I have, as well as my dad, all 3 of my kids, and my brother...).
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Permalink Reply by Gerri on
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The buccal spray isn't available in the US yet, though it's been prescribed in several Asian countries for years. There may be a way to get it. Hopefully, that might bypass a skin reaction.
Generex Biotechnology Corporation Oral-lyn
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Permalink Reply by Sarah on
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I don't really know that it's a needle allergy, honestly... I don't react to my CGM sensor at all... not even to the tape.
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Permalink Reply by Gerri on
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It's probably not the needles, but maybe non-injected insulin won't cause the same allergic reaction (if it's an allergy).
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Permalink Reply by Cheryl on -
Sarah,
If you search for insulin allergies, you will find a variety of articles on the internet including the attached which you can cut and paste into your web browser to read.
http://care.diabetesjournals.org/content/24/11/2008.full
or
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1352375/
The second article has some photos that might help you to identify if you are current having a similar reaction. Try to get some help with this soon, as you will definitely need medical help to solve this if it turns out that you have an insulin allergy.
Let us know how things go.
Cheryl
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Permalink Reply by Sarah on
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Thanks, Cheryl, I've done some googling of my own and I have a friend pulling some pubmed articles for me tomorrow... hopefully it will give me a better idea of what to present to my doctor.
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Permalink Reply by Chris on -
Can you show up at your endo's office? i would go there and raise f****** hell if this was happening to me. No excuse for a doc to not get back to their patient AT ALL. The only way I would leave is by arrest or with answers or help.
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Permalink Reply by nel on
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Sarah ...those 60 minutes of driving maybe the best 60 minutes spent in your quest for getting answers to your questions ...I feel for you .
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Permalink Reply by Brett on -
Hi Sarah,
Hugs, and keep your chin up. You'll get through this.
I would suspect your synthroid first as a cause of the IR. Synthroid is a known cause of insulin resistance, and if you are taking way too much it could be really messing up your basal and bolus needs. You really need to get that blood work back and see what your thyroid is doing. Did you have your blood work done at an independent lab? They might be able to tell you if you call.
What is your synthroid dosage?
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