Type A insulin resistance, treatment to be denied for 3 months?

[leamason]

I am writing this to find out what I can do; or if anyone out there might have the same issue. I have Type A insulin resistance syndrome. I was not diagnosed until I was in my late thirties after various trips to endourologist and doctors to find out why I was so tired; tired to the point I would black out. I finally found an endourologist that knew what to test for and found that my blood sugars were extremely high as well as the amount of insulin in my system. I was put on Victoza. This doctor unfortunately left private practice to go into research leaving me at the mercy of doctors that had no idea what was going on with me; however, my insurance company continued to pay for the victoza for 20 years. Now I have a different insurance company and they denied the prescription. My current endocrinologist who I have seen for 11 years thinking they were actually managing my insulin resistance did not fight the insurance company on the denial but suggested I take a different prescription. Currently I found there is Monjoro that is new and specifically designed for people with my condition as well as type 2 diabetes. It worked great. I feel great best I have felt in 30 years. After 9 months being on the medication the insurance is denying the use of it and the doctors sends a patient portal communication that I will have to pay for it myself if I want to stay on the medication since the insurance refuses to pay for weight control. WHAT???? I don't need weight management I need care for insulin resistance. I was under the impression that I was having my actual condition treated, but in reality they thought I was there for weight management. Since my A1C levels test normal when on medication for control of hyperglycemia/ insulin resistance the doctor insists that I go off the medication for 3 months and do the tests again so I can show I am hyperglycemic. She admits that I am insulin resistant, but that in order to stay on the medication I will have to do this. My sugar levels without medical control can get up to 300 and in three months I could actually be dead or in a coma. What do I do?? I find this to be patient abuse. I am in tears and scared to death that I will have to go back to living like I was 30 years ago. I already have reduced kidney function, neuropathy in hands and legs. I tried years of management by diet and exercise. Running 5 miles a day and eating very little. I am 60 now there is no way I can run 5 miles. I run 2 miles 3 times a week and yoga 4 times a week I still have high blood sugar. I am literally terrified of what is going to happen to me.

 

[EllieM]

Hi @leamason and welcome to the forums.

I don't know about the insurance aspect (I'm in New Zealand which has a public health system) but have a few thoughts which may or may not help.

Can you see a different doctor? Has he seen your records which show high blood sugars when unmedicated?

My sugar levels without medical control can get up to 300 and in three months I could actually be dead or in a coma.

While 300mg/dL is high (in UK units that is 300/18 = 16.7mmol/L) many T2s go much longer than 3 months with higher levels. The coma risk is if that is combined with high ketones because you aren't making insulin. (I totally agree that you probably won't feel well and it seems crazy that you are being denied the medication that you need because of a technicality).

However, could you make an appointment for much sooner than 3 months so that the doctor can see your high readings?

Good luck.

 

[leamason]

Hi @leamason and welcome to the forums.

I don't know about the insurance aspect (I'm in New Zealand which has a public health system) but have a few thoughts which may or may not help.

Can you see a different doctor? Has he seen your records which show high blood sugars when unmedicated?



While 300mg/dL is high (in UK units that is 300/18 = 16.7mmol/L) many T2s go much longer than 3 months with higher levels. The coma risk is if that is combined with high ketones because you aren't making insulin. (I totally agree that you probably won't feel well and it seems crazy that you are being denied the medication that you need because of a technicality).

However, could you make an appointment for much sooner than 3 months so that the doctor can see your high readings?

Good luck.

the biggest issue is that 9 months ago she did the same thing to me when my insurance company refused to fill the Victoza. I had to go several months with no medication so I would test out as type 2 again on a blood test. I thought doctors took an oath to do no harm. Keep in mind I have reduced kidney function and nerve damage causing neuropathy in my legs and hands. Doing this in my opinion causes more harm even if it is 3 months. What I am seeing is that she needs for me to do this over and over again every time the insurance has an issue, but not coming up with a treatment plan. What I found out from the Pharmacy is that they can't get the refill even submitted because the Dr will not send them a ICD-9 (diagnosis code) so the insurance currently is not the issue. It is the doctors office. I have an appointment in February with another Dr to see if they are better acquainted with my issues. The other issue I have with them is that they have never run any testing to see if I might actually have Type 1 delayed onset or do genetic testing for inherited markers for this condition. Type 2 is also found to be linked to genetics as well. My doctor says there is no such thing. I just ordered a genetic sequencing test kit online to find out for myself.

As a child I had migraines so bad that they were doing CT scans over and over looking for a brain tumors. I had to go to the hospital over and over again since I was throwing up and could not even see from the pain of the headaches. They would do intravenous pain medications to get it under control. No one ever thought to check my blood work for issues. Now days I can tell when my sugar levels are high because the migraine symptoms start presenting. I am a tax preparer and to do this to me when tax season is just starting is unforgiveable. I have to be able to function.

To answer your question; I called they don't have any appointments available before May when I am currently scheduled. You would think that they would make one available. Right? I have been a patient for 11 years. Do they have a treatment plan, no I just found out, because they have been ignoring me for 11 years. I would think this would constitute malpractice or patient neglect/abuse. You know Women are just ignored hence why it took so long for someone to help me in the first place. I had a doctor I kept telling I was to thirsty and had to urinate so much that I could hardly leave the house. He never suggested any testing. My Dentist noticed that my gums would always bleed and only told me after I was diagnosed with insulin resistance that bleeding gums are a sign of Diabetes. Hey you might suggest testing don't you think.

Prior to being diagnosed I was on a cruise with my Ex husband and he was seeing what I was eating. I got up every morning to go work out and he came with me a few times. Later during the cruise he asked do you work out like that all the time and eat that little. I was like Yeah. He response was something is wrong with you. You need to get checked. Now keep in mind I was 130 lbs and 5'4" and had gained 15 lbs at the time. I barely ate and ran 5 miles a day lifted weights etc etc. and I was gaining weight. The doctor I went to told me I was not telling him the truth and not being honest about what I was eating or my workouts. He agreed to test me for thyroid issues anyways. I left crying. He later called back after the test and apologized saying that of all the patients he has ever seen I was the least likely to be considered for thyroid issues. I am pretty sure at the time if he had tested my A1C he would have found it was elevated saving me another 10 years looking for help. It took till I was 40 and near death before I found help.

All the studies I have read that people with this condition do not have to be obese but the thinner patients die 10 years earlier than their obese counter parts and I find the reason why is that doctors look at physical traits and ignore the patients cry for help since they do not look like the typical candidate for Hyperglycemia / insulin resistance and or type 2 diabetes.

If any doctors are out there reading this please for the love of God listen to your patients. Endocrinology I find is about treatment plans designed for a patients needs. Please stop trying to pound square non normal cases into your round holes. Test results for some issues are more about the individual. Normal is not Normal for everyone. For all you patients out there. You need to take your health care into your hands and demand what you need. Do not be afraid to research your issues and take action for your own health.