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I am really sick of this.

Discussion in 'Parents of Children with Type 1' started by CaitlynGrisham, Apr 14, 2013.

  1. CaitlynGrisham

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    So, some of you may recall that I made a threat a while ago talking about an insulin allergy that I thought I have/had. I went to the ER, fought for some Humalog, and found out that I was still reacting to the insulin. I've used Humalog, Novolog, and Apidra -- none of them worked for me. I've changed needles, used different adhesives, and tried a variety of different pills to take away the pain, itchiness, and inflammation. I've visited three dermatologists, two general care doctors, and an endocrinologist, none of which have been able to tell me what's going on with my body.

    My sites are raised about the skin about 1/2 inch. They are red and swollen and tender below the skin. The pain spreads to wherever the insulin infuses at the end of the cannula. When I take the site(s) out, insulin leaks out from the sites, no matter how long ago it was that I gave a bolus.

    I feel the insulin under my skin whenever I give a bolus, and I can feel the basals every time that they're given. I feel sick in a weird way; it's not like a ketone sort of sickness. It sort of feels like I am just empty in my head and like it's stuffed with cotton balls even when I get my blood sugar to relative normality. The pain from the sites becomes the only thing that I can think about, so my attention is really divided, and college is becoming difficult. I can't take a break from college, because if I stop for a quarter, I lose all of my financial aid.

    My last A1C was 7.4, and I want to get that way lower, but my blood sugars seem to be stuck in the 200-300s no matter what I do.

    I am really tired, really upset, and really confused. I don't know what else to do.
     
  2. mom2Hanna

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    I'm so sorry Caitlyn. Have you considered going to MDI?
     
  3. nebby3

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    I was wondering too if you have tried MDI and if works any better for you. Personally, I would try alternative things. We have had a lot of luck for them for various health issues. I find alternative medicine providers of various kinds are much more willing to find answers. They actually seem to really care about the problems and to view them as challenges to which they want to find a solution. I see you are gluten intolerant and so I would also wonder if there might be more dietary factors in play. I know from my dd's extreme eczema that once the immue system reacts to something it seems to react to everything. So it could be helpful to eliminate a lot more and see if you can get it to scale back on the inflamation over all. We have never been desperate enough to try the GAPS diet but I have looked at it many times. It might be worth checking out. It claims to actually heal allergies.
     
  4. SandiT

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    You know, maybe at this point you really need hormone therapy. Go to your doctor and state that you want to try it.

    Have you taken anything that would help with an allergy, like Benadryl? Try taking something like that and see if it helps at all.

    If you have developed an allergy to the insulin, taking something like that might help to alleviate it enough for you to demand steroid treatments and thus get greater relief.

    Someone else said that you have a gluten issue, as well. I'm just asking in passing if you take a probiotic to help strengthen your intestines? I know a lot of people don't "get with" that "homeopathic stuff", so if you don't, I won't mention it again. If you're not currently doing it and aren't against it, then please give taking some a try for a month or so. Sometimes, it can help soothe your immune system into settling back down. It's a natural thing present in your body, so it certainly won't hurt you. :)
     
  5. Joretta

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    Is it possible that it is a latex allergy getting worse. My daughter had the same thing if we use insulin from a vile. But insulin from a kik pen did not cause a reaction. If you are filling the pump with vial insulin you could possibly be getting contamination. I know it sounds weird.
     
  6. Michelle'sMom

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    With BGs already being stuck so high, I would be very hesitant to even consider steroids.

    I hope you find someone who can help. It must be very frustrating.
     
  7. TheLegoRef

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    Have you tried supplements that are kind of controversial whether they work or not, to help with the bgs? Like cinnamon, turmeric, etc.

    I am NOT at all saying to do this instead of insulin. No way no how. I'm just saying that when my ds seemed stuck in the 200's and bouncy, giving him a cinnamon supplement pill each morning seemed to help. When you're at your wit's end, trying little things like that are just one more thing that you can try, even if they don't work for everyone.
     
  8. Ellen

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  9. mmgirls

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    I was going to suggest trying maybe NPH or Regular and feed the insulin for meals/corrections via MDI, or Regular in the pump.

    At this point continue to seek medically advise, don't give up. You can not.

    Look into the resources that Ellen posted.

    Goodluck.
     
  10. sarahspins

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    None of the currently manufactured insulins use latex stoppers.

    I have to agree though, switch to MDI for a while, I find that when I start reacting more and more to sites that going back to shots stops the cascading reactions that I get from pump sites. Steroid cream at your injection sites may also help a lot but it may be difficult to get a doctor who is actually willing to prescribe it for this use.
     
  11. TheLegoRef

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    I don't know if this would help, but have you tried Benadryl cream?
     
  12. CaitlynGrisham

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    Hello, again. Thank you all so much for your quick responses. I'm going to try to address all of the things that you guys said without quoting anyone. So, here goes.

    MDI/Pens
    I have tried switching back to MDI, both through the use of injections and through the use of insulin pens. Neither worked for me. My blood sugars were still stuck in the 200-300s, which I suspect may be due in part to the widely varying basal rates that my pump allows me to have. I require drastically different amounts of insulin at different parts of the day/night. I also still have the reactions using this method. I tried changing the pen tips to practically everything on the market, and I still get a reaction to the insulin. The red swelling fans out from the point of injection. It is a less severe reaction, but the high blood sugars lead me to suspect that it's not worth it for me to go back to MDI.

    Alternative Medicine
    I am very, very open to the idea of Alternative Medicine, and I will definitely check out the things that you guys recommended. Thank you so much!

    Benedryl, etc.
    I have been taking one zyrtec in the morning and one benedryl at night to try and ease the swelling and pain, but they haven't made any noticeable difference. I tried using the cream before and after site changes, but, again, no change.

    Latex Allergy
    I have never had trouble with latex before, but I will bring this up to the next dermatologist that I see. Maybe he or she can see if that might be the problem.

    Thanks again, you guys. I really appreciate all of your help.
     
  13. SandiT

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    ((EDIT before posting: First, I'd read the discussions on insulin allergy as linked above. :)

    If that doesn't sound right to you, then... ))

    You did say that you're open to alternative methods. So... One way that we might be able to help see if this is some sort of toxic reaction would be to use a little topical application plantain on it. [Of course, ask your doctor before you do anything; it's the law that I remind you of that.]

    Here's a nice picture of plantain for you. http://www.dansdepot.com/blog/ediblemedicinal-plant-plantain/ I don't know where you live, but if it has already started to act like spring there as it has here, you can probably find some growing around abouts. It's considered by most to be a weed, and in most areas of the world nowadays, it's one that you can find pretty much anywhere.

    Hopefully, you'll be able to find it somewhere that hasn't been sprayed yet for weeds (or fertilized yet).

    The thing about plantain is that it will draw toxins out of your skin. It's very efficient at removing any poisons or pus or things of that nature. What you do if you can find a little plant of it, is chew up a bit in the front of your mouth. (It's bitter. Your bitter receptors are in the back, so use your front teeth). Place it on the swollen or painful skin chewed (or ground) up. Fresh and raw is great.

    If you have significant relief by the next day (usually faster), then the chances are pretty huge that this is some sort of toxin that your body is either absorbing or creating in response to something.

    If there's no significant change different from the way that it's been, then I think it would be okay to tentatively rule out allergy and start looking for another answer until you've exhausted other avenues.

    And if there is some sort of toxin in the skin, the plantain will assist in drawing it out, which may help with other symptoms.

    I am curious, however; could some of your other symptoms, like the head feeling, be from the high sugars?


    (EDIT: By the way, this is intended just to assist you in alleviating some measure of your discomfort if possible. You still need to continue pursuing whatever it takes for insulin to have the proper effect for you; and to end the irritation instead of just alleviating some of the suffering from it. I'm not trying to cure it or anything, just bring you a measure of comfort from the skin pain if possible.)
     
    Last edited: Apr 14, 2013
  14. CaitlynGrisham

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    Oh, also:

    I've had unexplained weight gain and my hair has been super dry. My nails are no longer growing. I had them take blood and test for thyroid issues as well as do a normal blood panel, but everything came back alright. They said I was a bit dehydrated, though.

    I have been eating pretty well. I don't eat junk, and I am still seeing this weight gain. I have been needing massive amounts of insulin per day, as well (upwards of 150 units per day)!

    When I walk, my calves have been cramping. This has only happened since the start of the allergic reaction(s).

    I don't know if these things are all connected, but that's been going on.
     
  15. Ali

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    Well you are dealing with a whole mess of stuff. Sorry. As you say so hard to know if you have a bunch of separate issues or one underlying issue. Have you talked with an Endo about doing a full work up of hormonal issues, not just thyroid? All I can suggest is to try and find a fresh pair of eyes to meet with you. The insulin you may just need to try (with syringes) all your insulin types and see if any work better, the other stuff sounds like you just need loads of testing. So sorry. Ali oh wanted to add, try the animal insulins also, beef or pork, some T1s do need to use animal sourced insulin.
     
  16. TheLegoRef

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    Have you tried lowering your insulin? This has not happened to us, but I have seen some people here post about battling highs, and lowering their doses to do so, and then the BG's fall back in range. Hopefully someone who has done this will read my post and comment on it, because I can't speak to it very much.
     
  17. Megnyc

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    Hi there,
    First, I am so so sorry you are going through this. It sounds really rough...

    I guess you need to focus on 2 things. The first would be trying to get to the bottom of what is going on and actually treating that issue. The second would be figuring out how to live with it in the meantime (which I know is easier said then done).

    For the first issue:
    Can you see an allergist? I am pretty sure meta-cresol is the only common substance in those three insulin that has been documented as a cause of allergic reactions. It is possible to test for this allergy and an allergist could do that. I think I linked you to how to test for it previously, if you don't have it let me know and I will dig up the article.

    Random question: Have you switched to a new lot of reservoirs since this started? It seems very unlikely but I guess possible that your lot of reservoirs was contaminated maybe even while being shipped to you (and that would have spread to the insulin vial so contaminated it for the use of mdi).

    On living with it:
    Can you try reducing your insulin dose? Have you tried metformin or symlin? I would assume if you could reduce the amount of whatever you are allergic to that you put into your body that would reduce your symptoms.

    Does your college health center offer massages or acupuncture? You could try that.

    I know exercise really helps me. Even if you don't feel up to running you could try swimming or something like that.

    Again, I am so sorry. Feel free to pm me if you just want someone to talk to (or for any other reason). College and diabetes are tough enough already with out these added issues you are having...
     
  18. kirsteng

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    I can't add any medical advice either, but wanted to send you a ((hug))... you're going through a LOT! Keep looking, keep asking, you'll find the answer if you keep at it - and do come back and let us know what you found out!
     
  19. Ti'sMom

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    So sorry to hear all your troubles! On the allergy side of things, I just had this conversation with our diabetologist. She said that she had a patient at Joslin that was allergic to the additives in all the insulin brands. She had to have a special insulin made for her and all her issues stopped. I don't know if that's a possibility or not, but maybe that's the issue:confused:

    On the symptoms you are having, they do sound like thyroid to me. I've been dealing with thyroid problems for 20 years and went 10 of those misdiagnosed because of "normal" labs. I have since linked up to the Thyroid Sexy (great name) facebook page and have learned so much!! I took the info to my doctor and we have gotten me on the right track! There is a type 2 hypothyroid that is a lot like type 2 diabetes. There is enough thyroid in your system but the cells aren't accepting it. It is treated with thyroid meds but doesn't show up on labs. I would read through the info on there and see if that helps. My doc is excited about all the new info that she wasn't taught in medical school. Should we be surprised???:rolleyes:

    I hope you are able to get to the bottom of this and find some relief. I'll keep you in my prayers! Good luck!
     
  20. CaitlynGrisham

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    I went on a trader joe's trip today and grabbed a bunch of the things that you guys recommended. Maybe that will help a little bit.

    I had myself tested for a meta cresol allergy, but the results were fudged a bit by the fact that I had dermatographia, and my skin reacts to EVERYTHING.

    I have switched to a new lot number of sites and of cartridges. I also tried opening varying vials of insulin from different lots.

    Metformin made me violently sick, and Symlin had no effect on me. My endo was frustrated with that, as I recall.

    I tried reducing my insulin, trying to see if maybe that would work, but I was just hitting 400-500 all day. It didn't seem to have any positive effect.

    I will definitely try to get some exercise and see if that helps. I can't really do much as I feel the swollen, painful sites with every movement. I might try to do some light yoga.

    Massages and acupuncture are $60 per hour here, and I don't really have that kind of money. Although, I will do it if it comes to it.

    Also, thank you Meg. I will likely PM you.
     

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