I have diabetes. I eat low carb meals and exercise. I go to all my doctor appointments. And I take all my medications every day and at the same time everyday. Yet, my diabetic medications are not working. My sugar levels are very high. Doctors don’t have answers as to why my medications aren’t working on reducing my sugar levels. I am frustrated and often depressed because of this. I feel all alone.
However, a quick search on Google shows that multiple people are having the same issues as I am. I keep asking myself what else can I do and why is this happening to me. But I haven’t found answers to any of my questions or problems. It seems hopeless right now. I hope I get answers soon as I may, one day soon, have serious complications due to diabetes.
I have a family history of diabetes, both Type 1 and Type 2. My grandmother lost her foot to diabetes and my mother is suffering from diabetic neuropathy. I was determined that diabetes would not happen to me. I would go for diabetic testing whenever I was at the doctor’s office. But I ended up with diabetes anyways.
My diabetes all started in 2016. I went to my family doctor’s office because, at that time, I was pregnant. It was there that I found out I was diabetic. I was told that it was gestational diabetes. Diabetes in pregnancy is considered a high risk pregnancy. My family doctor did not treat high risk pregnancies so he scheduled an appointment for me at one of two diabetes clinics in my city.
I went to the recommended diabetes clinic for my appointment. There, I was told to do light exercises (because of the high risk pregnancy) and to eat a low carb diet. I was told to test my sugar levels four times a day, as well as to write down all my meals in a food diary, all of which I did. I ate everything that was low carb and in the proper proportions. I was determined to have a healthy fetus. It was during this time I was put on insulin. I was having issues with insulin then but I was told that my symptoms were part of the pregnancy related issues, which I believed the doctor at the time. I followed everything the diabetes clinic told me to do. Yet, nothing was working. My sugar levels would not go down no matter what I did. The following two weeks after going to the diabetes clinic, I had a miscarriage. The doctors’ were unsure if the miscarriage was due to the high sugar levels or something else. Regardless of any reason for the miscarriage, I was devastated.
I continued going to the diabetes clinic as my sugar levels were still very high, even after the miscarriage. It was here that I was diagnosed as having Type 2 diabetes. I was told that if it were gestational diabetes it would have gone away by now (it had been three weeks since the miscarriage). I was told to continue the insulin. However, my sugar levels would not go down. The doctor would always say increase the amount of insulin. I was then put on another type of insulin to be used with the first insulin I was prescribed. I was at 88 units of both insulins. Despite the high unit amounts, the sugar levels would not decrease. I was told that I needed to go on metformin (to be used with the two insulins at the same time) as a way to quickly lower my high sugar levels: Metformin was to help with my insulin resistance. I was never told that I was being treated for polycystic ovaries which I did not, and do not, have. The metformin never did lower my sugar levels, and I had adverse reactions to not only insulin but to metformin as well.
The side effects
The first diabetic medication I was on was called Levemir. I had a sore throat, which at first, I assumed was due to a cold. I was told that my immune system is now comprised due to diabetes which is probably why my so-called cold was lasting for several weeks. My sugar levels would not go down. I was told by the doctor at the diabetes clinic to increase my insulin units. It still did not go down. I was then put on Novo Rapid. Novo Rapid was to help the sugar levels 24 hours a day whereas Levemir is immediate. I was having the same symptoms with Novo Rapid as I did with Levemir. The doctors decided that all the problems was from Levemir and not Novo Rapid. They replaced the Levemir with Humulin. Humulin would be a lot better since it closely resembles the human hormone insulin. But like the other two insulins, I also I had breathing problems, rashes, and sores at the injection sites and severe diarrhea. I explained multiple times to my family doctor and the diabetes clinic doctors about the side effects. Unfortunately for me, my symptoms were ignored. The diabetic doctor even said Insulin does not do that. My sugar levels continued to be high.
There are people allergic to insulin. It use to be common because it came from bovine or pork. They found ways to synthetize insulin which lead to decreases in allergic reactions. Brand name insulin websites do mention allergic reactions to their product. It may not be common, but it doesn’t mean that they don’t happen. For me, I have to go to see an adverse consultant to determine if it is a sensitivity or an allergic reaction. However, this appointment is months away.
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During my time on insulin and metformin, I was told that I wasn’t following my diet and not losing weight. This infuriated me: I was following my diet; I was testing up to six times a day; I was exercising. Yet, no one believed me. They made it seem as if I was lying. But why would I lie? I wanted to get better. I wanted to be able to get pregnant and have a healthy pregnancy. I didn’t want to lose my foot as my grandmother did. How dare they make me feel as if I was lying. I was angry. I wanted them to do their jobs right and figure out why my sugar levels were so high.
Out of frustration and hopelessness, I purposely started skipping meals in hopes of lowering sugar levels and to help with the weight loss. One day, I skipped breakfast because my fasting number was high. I didn’t even have water. So I was shocked and upset to find out that it spiked even higher. I kept thinking to myself that I’m not even eating or drinking and my sugars are so high that the universe is telling me to die from diabetes. Of all the appointments with doctors and dieticians, no one told me that your liver produces more glucose if you do not eat as it thinks it’s going into starvation mode. As well, no one told me that you can gain up to 25lbs if you are on insulin. It’s a terrible conundrum: You need to lose weight to help with the sugars but the medications make you gain weight. The more you gain, the more insulin you will need. It’s a vicious cycle.
Another issue I was having was that I was misdiagnosed. I was eventually told that I may have these issues because of polycystic ovaries. I explained that in the past I had been tested a few times for it but I did not have this. Yet, I was ignored again, and the endocrinologist had this attitude that she was always right, and continued to treat me as if I had polycystic ovaries. That doctor never did a blood test or an ultra sound to see if I actually had polycystic ovaries. I finally had enough of this doctor and the people at this diabetes clinic. No one was helping me. I was tired and frustrated by the lack of support. I finally called my family doctor and told him that they weren’t helping me at all. I then booked an appointment to see my family doctor.
My symptoms continued to increase in severity (it was to the point that I was gasping for air after taking my insulin). One night, my partner woke me up. I was gasping for air in my sleep and did not know it. My partner had to sit me up and patted my back for half an hour. I called the doctor the next day. I was told by the nurse at my family doctor’s office to stop taking it, and they booked an appointment.
When I was at the diabetes clinic, the doctor there thought I was making things up and over exaggerating -which infuriated me. I was then told that there was no link between my adverse symptoms and insulin. When I went to my appointment at my family doctor, I almost cried when explaining all my symptoms. The family doctor told me to stop taking insulin immediately. I was told to continue with Metformin. I continued to have severe diarrhea -it got to the point where I could no longer go to work. I continued for two more weeks of pain and diarrhea. My family doctor said the answer to my symptom was to take an opiate called Lomotil. Lomotil actually worked but I was cautioned not to take it too much. After a month of taking Lomotil, I was told I was taking too much and since metformin wasn’t working anyways, they needed to start a new medication. This is when I started taking Gliclazide.
Although I never had any side effects from Gliclazide and it helped lower my sugar levels better than the insulin, my sugar levels were still very high. My family doctor did two things: one, he ran a blood test and ultra sound to test polycystic ovaries and, as I stated multiple times before, I did not have polycystic ovaries; two, he sent me to see a pharmaceutical specialist. The pharmaceutical specialist read articles of people not being able to be treated with medications, but he never encountered someone in real life. We went over my medical history multiple times and decided to experiment with two drugs. The first drug he put me on was Januvia. I was to use Januvia along with Gliclazide. Again, there was no dent in my sugar levels. I did have side effects with this drug: I had fatigue with Januvia. I was then told to take Forxiga. I was to use all three drugs together: Forxiga, Januvia and Gliclazide. I was on Forxiga for two weeks and it was the worse two weeks. It did not lower my sugar levels, it made me even more tired; I was constantly hungry; I had a very dried mouth; and I had an yeast infections which did not go away with medication. I was told to stop taking Forxiga but continue to take Januvia and Gliclazide. I asked why I should take Januvia if it’s not lowering my sugar levels. The answer I got was that it may kick in but I needed to give it more time (because the first 60 days wasn’t good enough apparently). During this time, my family doctor retired. I then had to rely on walk-in clinics for help. I was very lucky in that the walk-in clinic was able to get me to the another diabetes clinic in my city.
I was very hopeful at this new diabetes clinic. Unfortunately, I didn’t get any answers I was seeking, other than the doctor saw three cases over twenty years ago that were similar to mine. That doctor explained that he didn’t know the cause for those three cases either as to why medications would not work. I felt defeated when he told me that. During my visit, I was told to stop taking the two medications (Januvia and Gliclazide) and to start Jardiance. I did what I was told. Unfortunately, I had severe side effects and high sugar levels as well with the new medication: I would sleep 15 hours a day; had a constant need to urinate; yeast infections; nausea and dizziness. I was only on Jardiance for not even two weeks. I recently went to a walk-in clinic (as my next appointment for the diabetes clinic is six months away). The walk-in doctor prescribed Onglyza, and since I didn’t have any side effects with Gliclazide, I was to take it along with Gliclazide. Unfortunately, I had to stop taking Onglyza: I had severe diarrhea, and was sleeping all day and night; as well, it did not drop my sugar levels. I now have to wait for my next appointment with the diabetes clinic to find out if there is another medication I can try. I am still taking Gliclazide.
So after going through multiple diabetic medications with no success, I do feel hopeless, and frankly, like a Guinea pig. I sometimes get depressed by this. I have a constant fear; I feel this disease will get the best of me, that I will suffer and die from diabetic complications. I hope no one has to go through what I’ve been through. I hope that all the diabetics out there are able to lower his or her sugar levels. But most of all, I hope for a cure in the near future.
A Family's Journey to Insulin Allergy
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2017 L S MacLeod