A Rare and Strange Case

Community Share Your Stories
1

This was originally posted to my blog, Diabetes Odyssey.

It’s been a long day. Today I had an appointment with my new primary doctor. One appointment ended up being three, and an all day event. You see, we just changed insurance providers so I had to see a primary in order to get new valid prescriptions and referrals to all the specialists I need.

I went to my primary appointment. My new primary is nice, knowledgeable, listens, and is helpful. She listened and asked questions as I told her my history and what I need. As I went over the list of medications I take, she only had an issue with one of them.

I was totally heartbroken to find out that Kaiser does not cover Farxiga! My miracle drug and Kaiser doesn’t cover it!

NOOOOOOOO!

She also suggested I switch from Pravastatin to a “better and newer” drug called Lipitor.

She ordered a new medication for me for my neuropathy pain. Cymbalta. This drug also happens to treat depression which I’ve been struggling a bit with lately.

I also discovered that Kaiser doesn’t cover the meter or test strips I use, so she ordered me a new one.

I told her about my frozen shoulder and how I’ve never gotten help for it. She ordered an x-ray and scheduled me for therapy.

She then looked up the endocrinology department on her computer and saw that there was an appointment available this afternoon. We scheduled me.

After my primary appointment I went over to the pharmacy and picked up all the orders that were ready. You don’t even want to know the chunk of change that cost me.

Then we drove to the other (Fresno) Kaiser so I could get my x-ray done. We happened to run into two old friends while we were waiting. We chatted and caught up a bit. I got called in fairly quick. They took x-rays in three different positions, none of them comfortable.

We had time before my endo appointment so we went to Sweet Tomatoes for lunch.

I ended up at my endo appointment an hour early so I just sat and waited. I got called back and this is when things got…interesting.

The endo automatically assumed my type 1 diagnosis was a misdiagnosis and that I’m actually type 2. She assumed this because she saw that I am on Farxiga and Metformin. I had to explain to her that I was diagnosed type 1 at the tender age of 8 way back in 1987 and that I’ve always been type 1.

“Why were you put on Metformin and Farxiga?”

I had to explain to an endocrinologist that I am a type 1 who also happens to be insulin resistant and this has caused massive weight gain and that is why I’m on Metformin and Farxiga.

Faith in this doctor absolutely not established.

She finally got it through her head. She actually called me a “rare and strange case”.

She explained to me that Farxiga and Metformin are not used with type 1’s and they aren’t healthy for type 1’s.

I told her they are helping me to use less insulin and hopefully soon to lose weight and I haven’t had any illness or side effects from either of them.

She explained that Farxiga is not covered by Kaiser but she can order it as a “special circumstance” but she didn’t know how much they would charge me.

I said go for it.

She wasn’t impressed by my pump. I use an Animas Vibe and I guess Kaiser prefers the T Slim or something else. At least the Animas Vibe is covered by Kaiser, they just don’t push it.

She was very happy to see that I use a CGM.

We talked about some other things. She ordered some labs. She strongly asked me to actually use the carb and BG functions for bolusing on my pump so next time she can see all the pertinent information and make suggestions, etc.

I said OK even though in my head I was groaning. More work. I do it all in my head, why use the pump for it? Truthfully I completely understand why and agree…but it’s just more work for me. rolls eyes

She asked to see me in a month.

After the appointment we made a stop by the pharmacy again to pick up my new meter and test strips. It hadn’t been ready the first time around.

When I got home I called the ophthalmology department to make an appointment since I absolutely need to have my Avastin injections every eight weeks.

I really hope Kaiser works out. Most of my issues today were just changes, things they do differently than my old insurance. I’m just not sure I want to keep this endo.

2 Likes
2

Sounds as though they put up some obstacles, but that most of them are things you can manage to work through. Your conversation with the endo about metformin is not all that atypical. The value of metformin for T1 is only s l o w l y percolating through the health care community. It’s another example of the one-size-fits-all, I-memorized-this-in-school-and-see-no-reason-to-learn-anything-new mentality that is depressingly common. Another example of why we must each be our own advocate—no one else is going to do it.

3 Likes
3

I hope that your new doctors work out. The whole system of U.S. healthcare where only certain doctors can be seen and must all be changed is so foreign to me.

4

i hope your new doctors work out for you. we had ones i did not like.

5

I’m on Metformin, too, for insulin resistance, though I’ve reduced my dose to 500 mg twice a day since I lost too much weight. Anyway, with the CGM I learned just how resistant I am in the morning–usually have to wait 50-60 minutes to eat breakfast.

1 Like
6

I don’t know from Farxiga, but lots of T1s use Metformin, including yours truly.

2 Likes
7

Same here–figures into the whole dawn phenom thing, that was the reason my endo (at Joslin–hardly uninformed about current practice with T1) prescribed it. Helped a lot. Dunno what this doc was thinking.

2 Likes
8

Joslin is the gold standard and leading edge, no question. When the DCCT results first surfaced, showing an irrefutable correlation between good control and good outcomes, the Joslin people were all walking around wearing buttons that said “We Told You So”. :laughing:

1 Like
9

Tamra, thank you for continuing to post about the trials, tribulations, and successes you encounter on your T1D journey!

I absolutely do not want to be a “Debbie Downer” (apologies to everyone named Debbie), but PLEASE be especially diligent RE questioning and challenging the statements, recommendations, decisions, treatment plans, etc. provided by any/all K-P care providers. Without going into pathetic details about how the K-P system screwed my family and countless patients I provided care for when they ended up in the Emergency Room of the University Hospital where I did my residency training, please trust me when I say that K-P is a great health care system IF you are a relatively healthy and young person who has essentially no serious health issues, but is very sorely lacking when it comes to the rest of the patient population they serve. I suspect you had no choice in making the K-P switch. But when it is feasible/possible for you to be covered by another health care provider/system, please do so. I worry a little less about your dealings with K-P because you are so incredibly knowledgeable about your T1D and other conditions, know how to research the facts, and are a strong self-advocate. But be on guard during your K-P experience, and may it be as brief an experience as possible!

10

@Tamra11,

I’m sorry to hear of your stressful day. I really don’t like starting over with new or changed insurance and new doctors and all that brings. Blech! What a mess. It sounds like even though it tested your patience that you did a good job.

I’ve heard of many type 1’s taking metformin and farxiga. My endo is a big supporter of T1’s taking them in certain circumstances. I’ve also heard of many endo’s in support of this.
So you said Kaiser doesn’t cover Farxiga but do they cover Invokana or a similar drug? I took Invokana and its like a sister drug to Farxiga. I would research that. This might be more important especially if the cost of Farxiga is more than you expected and can handle.

Whatever, you aren’t rare, you are rare to her because she is inexperienced. Sounds like she could stand to learn more from you as a patient. Although, I tend to agree with you, If I was in the same situation, I’m not sure I would want to stay with that endo. Sounds like you might need an endo that has some field experience.

Busybee

2 Likes
11

+1. Agree.

1 Like
12

Oh, I also just remembered that for Invokana, many endo offices have coupons for the drug to offset the cost completely or partially for a year or more. Look into coupons as well.
You probably already know this, you are very knowledgeable.
Best wishes,
Busybee

13

Sounds like you handles all situations well. Stay strong.

1 Like
14

talk about a stressful day. i hope things get better. Stay strong.

1 Like
15

Farxiga is very expensive, my blue cross does not cover but I was able to sign up for their card and I get it free. Farxigasavingsrx.com. Btw I am also type 1 and with farxiga I was able to lower my a1c into the low 6 range effortlessly

1 Like
16

Looks like your new endo does not know that it is possible to have both type 1 and type 2 at the same time. This combination is often called double diabetes, but there doesn’t seem to be any standard name for it yet.

1 Like
17

This has been addressed before. There is no such thing as “double diabetes” or " having both Type 1 and Type 2". There are, however, PWD who have Type 1 and are extremely insulin resistant. One can argue that this is a matter of semantics, but I just prefer to be as accurate as I can when it comes to all things medical and scientific.

3 Likes
18

And then there are T1s with a family history of metabolic syndrome & T2, which makes treatment & management of T1 a whole new ballgame. If only DM was as cut & dried as many seem to believe. FWIW, the IDF not only recognizes double diabetes, they believe it’s an issue worth addressing.

https://myglu.org/articles/double-diabetes-dealing-with-insulin-resistance-in-type-1-diabetes

Francine Kaufman:

Redirect Notice

Effect of Parental Type 2 Diabetes on Offspring With Type 1 Diabetes - PMC

http://m.care.diabetesjournals.org/content/30/3/707.full

Redirect Notice

Metabolic syndrome in type 1 diabetes - ScienceDirect

SciELO - Brasil - Body composition, metabolic syndrome and insulin resistance in type 1 diabetes mellitus Body composition, metabolic syndrome and insulin resistance in type 1 diabetes mellitus

http://www.pubfacts.com/detail/17327345/Insulin-resistance-the-metabolic-syndrome-and-complication-risk-in-type-1-diabetes-double-diabetes-i

" Both of these major diabetes types are believed to include different stages of disease, ranging from non–insulin-requiring to insulin-requiring for control or survival. According to this classification adopted by the World Health Organization, it is quite possible that both processes would operate in a single patient and contribute to the phenotype of the patient."
http://m.diabetes.diabetesjournals.org/content/54/suppl_2/S40.full

1 Like
19

I have to support this view. Type 2 diabetes is “diabetes of unknown cause.” You can have T1 and become insulin resistant and display other defects but that doesn’t mean you get a different diagnosis. You already have a specific diagnosis, you have T1. A better way of viewing this is that you have T1 and are displaying additional defects associated with diabetes.

If someone has been given a diagnosis of T2 and they are found to have T1 they are diagnosed as T1. It doesn’t matter if they are insulin resistant or have other defects commonly found in diabetes.

2 Likes
20

It isn’t about dx as much as genetics. Someone with a specific dx of T1 with a strong family history of T2 can not only find it harder to manage glucose levels due to insulin resistance, but also be at higher risk of CKD & CVD regardless of A1c & a tight range of control. Personally, I’m grateful my daughter’s endo has been involved in the research & understands her risks.