Allergic to all insulins

Hi am type 1 for almost 28 years. am allergic to all insulins. was on Lilly pork for years but never felt well. Have tried all human and synthetic insulins but became very ill- not just rashes but intolerable symptoms. have seen countless endos; allergists; some believe me but are not sure how to treat. I have tried animal insulins from England but they are intolerable for me. I am on an insulin pump for the last 1 and half years and am taking Apidra for the last two years; tolerating it to a degree with the help of Benadry al few times a day; but suffer from agitation and unusual dreams. Am seeing an endo in NYC who can only suggest antihistamines-Benadry is only one ican tolerate and does help but still suffer other symptoms. Has anyone ever heard of being allergic to all insulins; either themselves or know of anyone else. I know it is very rare but thought I could get some feedback which I would so appreciate. Thank you.

Hi, Gail. Mollie (with an alert dog named Dixie) has written about being allergic to insulin: damdiabetes/ What an awful problem! Good luck.

Are you asking about with Mollie and Dixie? It is valid; I looked at it today, but I’m not very good at giving links. If I recall correctly from reading her discussion on the subject some years ago, she takes steroids to help with the insulin allergy.

Hi Lynne

I am definitely allergic to Lantus.
I’ve gained large insulin resistance to Humalog, Novolog, and Regular.
Levemir and Apidra are the only ones that are working for me right now.
I’ve been type 1 for 13 years.

Good luck!

Hi Gail

I’m sorry to hear of this! I don’t much about it, but have read a realistic book (I say realistic because I’m not sure “how much” of the story is true) called Some Kind of Normal by Heidi Willis, which is about this exact thing. The daughter was allergic to insulins and they went through trying different kinds of drugs to help her cope with type 1 and insulin allergies. I think they ended up transplanting her in the end? I don’t remember.

Only insulin I ever became allergic to was Levemir - wroteabout it last year. How are your blood sugars then if you have allergy to most insulins? I know with the Levemir - it seemed to pool up in skin - and blood sugars were abit wacky. Good luck in finding the solution - and keep us updated as to how it’s going.

BTW, have you ever considered going for the Edmonton Protocol- or something similar in your country of residence? I have been in contact with some of the receipients of this procedure and hoping to write about them soon. So far - they are doing well - or on very little insulin - for them it was dire circumstances that lead them to islet transplants - otherwise they would die.

I’m allergic to ANY fast acting insulin myself so I just have to take the long acting ones in my pump. The Dr tried everything but it’s just me I guess.

There are researchers out there working on ways to desensitize individuals with insulin allergies. The trouble is that there aren’t a lot of them out there because it is much rarer to be allergic to human insulins than the cow or pig insulins. It’s mostly just individual case reports. But some of them seem fairly simple. there have been reports that using an insulin pump rather than injection helped, or administering i.v. insulin concurrent with traditional subcutaneous injections for a few days reversed it. In the most severe cases, immunosuppressants have been used.

I think the first must-do is to find an endocrinologist and/or allergist that is willing to go the extra mile for you. An allergist may even be better than endo if it’s more in their interests. Unfortunately, with patient demand what it is, this may be difficult to find because it will require them to do quite a bit of reading if they aren’t already familiar with it… So if there is someone researching the topic within travel distance of you, I’d go there first. They’ll do all of the appropriate tests and hopefully give this a few more whacks before they throw up their hands!

I wish you the best of luck with this!!!

hi- from Gail N. tyhanks to the people who have responded so far. truly appreciate your suggestions. To answer some of your questions; my symptoms on Lilly pork-NPH and Regular were a vague feeling alll of the time of not feeling right. O f course I had highs and lows on pork and NPH. I also had blotchiness on my chest and a few hives a year- very few; usually not at injection sights-so I stayed on it all those years because when i switched to humulin; novolin etc; all of human and synthetics; I felt worse; like passing out; weird symptoms of intolerance; fleeting rashes not hives; heart symptoms; vasal vagal symptoms as my endo has put it. felt absolutely awful. many endos did not understand even those claiming to be in research in diabetes.I mentioned before I found a society in England of people who also do not tolerate synthetic-human-RDNa insulins but feel fine on beef and pork insulins from England but I felt awful on thosse also and my eyes became really swollen-intolerable; even though they claimed their pork was close to Lilly pork; was told they used a lot more preservatives and it could be the solution the insulin was dissolved in- who knows with me? Now on Apidra; I have different symptoms almost llike i am on a steroid- distinct feeling of agitation very bad at times which I treat with a sedative I never felt that way on Lilly pork. Cerebral symptoms and feeling ill with swollen eyelids and hives just during the summertime but lots of hives for 8 weeks and then they completely disappear. I take small doses of liquid Benadry during the day which helps a lot- but suffer from itching on stomach- no hives- and very vivid and unusual dreams which wake me up 3 or 4 times a night- every night without exception. I called a Miami islet transplant center once and they told me I WAS NOT a candidate because I could not tolerate human insulin.
Does the person who mentioned the Edmonton Protocol know how to get in touch with them or the patients that she said she knew who were treated there? My endo in the city believes me and so does my latest allergist and they say it is the way that insulin unfolds in the body that causes this reaction in me; because it unfolds differently when you inject it even if it is identical to human produced insulin. I’ve asked my endos about transplants but I don’t think I could tolerate immunosuppressive agents because I am so intolerant to most medications I;ve tried including insulin. Also to Tom; I;ve tried to find doctors researching this problem thru the internet but could not= even calling big hospitals in NYC area but had no luck- any suggestions on how to possibly find a research doctor? I’ve asked my endo about taking prednisone if the Benadry should stop working but he says that I do not want to take such a drug because of it’s side effects and that one cannot remain on it endlessly although I have heard of rare people taking it to tolerate insulin such as some of you have mentioned; Sorry to be so detailed but i wanted to fill some of the people who asked in with more details. Thank all of you so much for reading and trying to be of help. I cannot tell you how much it means to me to have a place to explain my issue and have some understanding and knowledge being offered to me. Again; any and all suggesti;ons welcome and I will try to read that book mentioned; Some Kind of Normal; thanks for the suggestion

From GAIL N sorry one more thing- I;ve developed lumps in my legs past few years; not at all where I injected years ago but on middle to inner thighs both of them at first was told they were fatty but doc thinks they are insulin resistance related and yes; because of my insulin allergies I have many unexplained highs and lows that are not my fault- always have and still do on Apidra and pump; saw a substitute endo today who screamed at me for the lows and did not understand some highs and lows are probably due to the insulin binding and releasing unpredictably; also endo in city ran an insulin antibody test that came back high and said this is possible proof of insulin allergy; but was also told by others that a lot of people who took pork insulin have a high antibody test result to insulin- anyone know anything about this- forgive me for all of these details

Gail - the link for the Edmonton Protocol is in my reply to you above - scroll up and you’ll find it - just click on the word - and you’ll be whisked away to the website. I didn’t realise you live in the UK (I’m an ex-pat living in Canada now). Just scroll down the page when you open it up and look for International - and you should be well on your way to finding out more info (also talk to your endo or whoever takes care of your diabetic health). Okay?

I can’t use Pork or cow insulin, I used it back in the late 70-80’s and my family even says they thought I was dying from something a mistry illness. I felt weak, and half dead and I wanted to be asleep all the time. I was so nasuated on the Pork and cow. I lost so much weight to.
But Novolin N has been different to me. I have vivid dreams, but I also take Vit D 50,000 so which it is, I don’t know.

When I first started Novolin N when I had to add more units I would throw up and be done with it. This didn’t seem to bother my Doctor. But as I got more stable, my stomach is fine. So I do like this Insulin.

I was wondering if you or your doctors might think it is something else causing these symptoms. Just wondering…

Thanks for your story; I am interested in all other’s experiences and unusual symptoms on insulin. I; ALSO never felt well on pork but when I tried to switch to any human insulin; I felt worse in a different way, I never understood all of my reactions but they were always real and always severe. The doctors only seem tobe slightly familiar with only an all over rash or anaphylaxis; then sometines they can desensitize; but anything else; throws them and they don’t know what to do with unusual intolerances or allergies that manifest in different but just as severe manners. I do seen to be overreactive to most meds- canoot tolerate antibiotics; beta blockers; almost everything there is; but I do think there are people who just cannot tolerate many medications;
To answer some previous questions; I live on LI; NY; not in Canada. and also I have all of my symptoms; year round day in an day our- including vivid dreams all night long every single night- agitiation; etc. but I get hives all over only during the summer months; both summers that I have been on Apidra; all my other symptpms of allergy/intolerance are always with me. Perhaps I was not clear before; and the allergist does say it could be the Apidra causing the hives even if I just ex[erience them during the summer.
Another unusual problem i have and i am wondering if anyone ever experiences chronically swollen lymph glands they swell and recede for the past 20 or more years; sort of a chronic fatigue type of syndrome- i think somehow connected to the insulin or maybe diabetes itself; I’ve had complete workups cannot be attributed to anything else- another mystery- but somehow maybe connected to the insulin; I’ve also developed strange lumps in legs on both; not where i used to inject for years but towards more inner part of thighs- docs think it might be signs of insulin reistance- anyone else have lumps not where they injected? i’m not talking about lipoatrophy; i think i have that also but that’s where i used to inject and that is different.

Lynne, allergic reactions are not as specific as that. They vary widely. And you can certainly have allergies to injected medicines without anaphylactic shock. And I don’t see any reason why someone CAN’T be allergic to every insulin – if the allergen is in the part of the insulin that’s the same in every variety, then allergy to all of them could happen.

While allergy testing is a good idea, I suspect that Gail has already done that because she has an allergist.

The only desensitization treatment I’ve ever heard of is gradual introducing of small amounts that increase, just like other allergy problems, but I don’t know anything about how that works when it’s necessary to take insulin to live.

Hi Lynn;
I’m sorry; I disagree with you; my current endo- out of Weill Cornell in NYC and my allergist believe i am having true allergic reactions to this and ;probably other insulins. There is not always mucus in nose; i do have swollen glands constantly; may or may not be related and hives all summmer which i already mentioned allergist says it could definitely be the insulin. I am familiar with a whole society of people based in Europe who cannot tolerate human and synthetic insulins at all; but they have unusual reacions; not only rashes; brain intolerances ans many other symptoms some of which overlap mine. They take animal insulin from England and feel fine; unfortunately those don’t work for me; as I’ve mentioned. I agree with Natalie; thereare many different manifestations of allergies;even my vivid dreams all night long are one of them; my heart beat is always very fast - this also could be a manifestation- also Bendadryl whiich i take for the allergy; also can raise heart rate- just happened to read it in a magazine- even my cardiologist was ignorant of that.
There are many different manifestations of even allergy; brain fog can even be one not just mucus; and rashes and anaphylaxis; and intolerances can overlap with allergies. Everyone is different; and yes; Natalie’ i agree; if you are allergic to one you could be likely allergic to others or all; I could be responding to the unfolding of the insulin; maybe others don’t respond and it could be unique to my chromosomal DNA; everyone is different including diabetics differ widely from one to the other in responses to allergens in insulin; some people are desensitized and some have to take steroids; although I don’t know anyone personally who takes steroids; wish I could talk to them; that may have to be a future step for me.

Hi Lynn;
In my humble opinion; I think you are having some kind of reaction to the insulin; even though you do not experience hives; again i think you should see another allergist because you are suffering from many symptoms that sound allergic to me; again my experience and others agree is that allergy is not always well understood or well recognized and another allergist cou;ld have a different opinion than your current doctor. I have found widely varying opinions about my own condiition for all of these years and I have to find physicians who support and believe my every symptom; ihave dropped those over they years who were ignorant enough to tell me i was not feeling what i knew i was feeling. Maybe they could not help me but at least they believed all of my unusual symptoms and I kept seeing those supportive ones.

Lynne, have they checked your thyroid recently? One of the big things with thyroid is freezing.

The sweat, cold, sweat sound like menopausal hot flashes. They’re there on purpose just to complicate your life, you know! And just like little girls starting puberty, with unstable hormones, the menopausal fluctuations will affect your BGs. Add that in to your sputtering LADA pancreas, and you are just going to have to deal with it by keeping a close eye on BGs and correcting as necessary, because you are just going to have to wait until your hormones settle down, and your pancreas stabilizes. I used hormones when I was menopausal, because I couldn’t tell the difference between a hot flash and a low, and then went off them after a couple of years. But that’s an individual choice that you have to make for yourself.
The heart racing could be menopausal, but maybe not. I have Inappropriate Sinus Tachycardia, which is treated by a Beta Blocker, but that usually develops in younger women in their 20’s and 30’s – I was about 33 or 34 when it started.
I hope you get all this sorted out – I know that when I finished menopause, got my diabetes and thyroid appropriately treated, dealt with my depression and continued to take my heart medicines, I started to feel a whole lot healthier in my 50’s than I had in my 40’s!

Hi Gail

It must indeed be difficult to deal with all that. Being allergic to the one thing we need to live! You sound like you have been just walking through it and looking for answers, as well as compromising with what you can live with. I think you are wise to drop the clinicians who tell you that you couldn’t be feeling what you were in fact feeling because it didn’t fit into some preconceived medical box they recognized. Because of things in my childhood I don’t deal with instances of that response with anything near the grace you do.

I wouldn’t begin to have any answers or knowledge about your situation but you did say a couple things that raised my head a bit. You mentioned a similarity to people who had Chronic Fatigue Syndrome. I had a friend who suffered from that for many years and it manifested in many ways that were different than one would think. One among them was that she was allergic or sensitive to a large variety of things from certain foods, to fragrances, etc. Have you been tested for CFS by an expert? It is a poorly diagnosed and often unrecognized condition. Also, and this is one I really have no clue about but just thought I’d throw out. I had a client once who suffered from Lyme’s Disease. Through her I learned that that condition also had a huge variety of symptoms, emotional as well as physical and was poorly recognized by the medical community. But there is beginning to be more awareness. If you live in an area where ticks are common, that might be something to check as well. It sure would be nice if you could find an underlying cause for all your reactions - one that could be treated, not just symptomatic treatment.