My first endo visit in over 30 years!

I had my first meeting with an endocrinologist who works with insulin pump patients last month.  In the past I’ve used either my GP or a doctor that works in the endocrine area of the health field, but does not hold the title after their name (just like me, at times I’m like a CDE, but in reality, I’m just someone with 50 years of experience with T1D).  None of my past care givers understood pump technology, so as I’ve mentioned in the past, I do my own tweaking, and had been doing fine until menopause hit me last year.

The last time I’d seen an endocrinologist was way back in the 80’s … and I rarely saw them due to being busy with life, and in those days, we didn’t have all the technology today, so in some ways, at least for me, diabetes was just something in my life that today now seems to encompass my every waking moment with machines that read your blood sugars (CGM), or control the amount of insulin that goes into your body (insulin pump), along with blood glucose (BG) meters, and different types of insulin. 

It was an interesting meet up with the, originally they were coming to where I live (an hour and a half drive for them), but then a week before I was told they would have their head contained in a screen (my words – not the CDE’s words) … think of Max Headroom if you are of my age group you will know.  So, with the CDE in the meeting … we got started on figuring out my control of my diabetes, that I’ve basically been doing by myself the past 30 years.

I’d downloaded all my pump/CGM/BG meter info to Diasend that morning from home, so while the endo asked me questions, the CDE punched numbers on her screen while listening.   The endo couldn’t quite understand why I wanted a lower A1c which puzzled me, as I thought she would encourage me to attain a better number.  Explaining how many of us want to avoid complications, etc. with keeping a lower A1c didn’t interest her.

Their main concern was the hypoglycemic (hypo) reactions I have been having at night lately that they saw with the Diasend report.  Which is understandable after learning from various conferences I’ve attended over the year, hypos are harder on a diabetic body then a hyperglycemic (hyper) – e.g. going up high.  Of course, it all depends on how high you go up, but to me, anything over 15 / 270 freaks me out and the methods I use to bring even higher ones down she did not approve of.  I’m also still very lucky, I wake up to hypos, CGM or not, and generally do not over treat them which is what many diabetics do which results in that crazy roller swing.  I’ve learned over the years, depending on the BG number, to go from 5-15 grams of fast acting carbs, wait 15 minutes, retest.   Helps to offset that crazy high in the morning when you wake up.

The endo asked me to set my CGM alarm during sleep time to 15 / 270 in order to have a solid sleep (as we all know – lack of sleep can affect our blood sugars not just our sanity in our work place the next day or relationship that for me is already compromised by menopausal mood swings!).   Of course, freak out, I did request permission from CDE a week later after tying to follow endo’s instructions so I am now able to correct anything over that number, “safety first” as the CDE told me.  They just want me to be more sparse about it and only anything over 10 / 180 – which I have been doing – but this is way against the way I’ve handled my diabetes over the years by myself.  They are hoping to see what happens with my BG without correction, does it go up and stay up, or does basal bring it down.

I started to realise around that point that I had an endo that sticks to the rules and no matter what I said (e.g. I asked her if I could go on metformin, which has been shown to help T1D teenagers in attaining more level blood sugars … and that a study was being done with adult T1D’s using the drug and showing great success).  No, unless I was using over 50 units of insulin a day, she would not consider it.  I felt like I had the door slammed in my face at that point.

 My promise to follow a snack plan (carb/protein) in the evening as the endo requested in order to avoid hypos overnight – nope - that didn't last long.  Though I have now gotten into soaking almonds in water, and having about a ¼ of a cup before bed time and BG’s seem to be great overnight.  I really don’t do snacks at night time, which is something I did as a kid at home when my parents followed the CDA/ADA meal plan.

So, overall, I am realizing that it is the CDE team that is the most knowledgeable in diabetes management.  I have yet to tell them that I’ve gone ahead with upping my basal (the high wake up blood sugars during some of my major hot flash periods that last longer since I had the hysterectomy a few months ago was too much for my control level of diabetes).

It’ll be interesting to see how things go for my next visit at the end of January.  I do have a friend in Ottawa (he is on the study with Metformin) who has told me his GP who follows his diabetes is taking on new patients.  It’s something to think about, and with how I’ve always taken care of my diabetes, where I only go to see a doctor when I need a new prescription or have blood work done to see how I’m doing … I may just go back to that routine. 

Main thing for me, it’s an interesting experience to have a CDE team after all these years of my time with diabetes and even better is that they understand much of today's technology unlike my former doctors and I don't quite feel alone in working in the coal mine of my diabetes control.

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When life is just a bowl of hormonal chocolate cherries!

I haven’t had much time lately to blog.  Life has been crazy with the move in June,   recent death of my little Mia the black cat (aka my hypo awareness cat ... sigh).   Dealing with diabetes has been the easy thing, especially with the assistance of Bowie aka my Dexcom CGMS.  He’s actually singing away right now as I compose this … telling me I’m low … urrrhh … silly hormones that are going wacky lately (menopause, thyroid, lack of sleep, etc.) making life abit of a roller coaster ride.

What’s going on right now with me is from a recent trip to the ER in the new town I live in the province of Ontario (alot of folks from Quebec come here since the wait time in less – found that interesting).

It all started off with a visit to the CDE’s (Certified Diabetes Educator) team end of August.  They have knowledge of insulin pumping since Ontario has the insulin pump program (I think I qualify – but I just bought a new pump – on my credit card to get 5 years warranty instead of the 4 years Animas offers - having supplies covered would be nice until I need a new pump).  I do have a feeling though that I maybe the first CGMS user they've come across, after meeting up with another T1D pumper the other day, he was wearing a Medtronic pump and didn't know what it was along with Sure-T infusion sets (stainless steel ones) - or what an A1C test meant.   Out came my calling card, and hopefully I can get him to discover the #DOC .

I’ve been in menopause for over a year, hot flashes, emotions up/down/all around (combine that with thyroid that has once again wacky wacky … but no doctor to review TSH levels means I’m on my own until I find a doctor who I can convince I need help).  Well, maybe due to stress of move, etc.  I started to no longer experience those lovely symptoms, and instead, started to bleed heavy like I had during peri-menopause period.  That had lead my gyno in Quebec to decide the fibroids were too big and surgery was to be done (I opted out as you can see by this blog post).

The CDE’s were worried about my blood loss and exhaustion I was experiencing, so told me to go to the walk in clinic next door to the hospital.  I did, but after a 2 hour wait, seeing the head surgeon from the hospital that was doing his stint in the walk in clinic … he told me to go to ER … STAT.  He didn’t like the way things were in the nether regions and my history.

ER … ultrasound … gyno … biopsies … and just 2 weeks ago I got the results that things weren’t right.  We are not sure if the ovaries can be saved.  I am hoping so, but gyno is not sure until he can get to them.  I know at present I have what I call an “Igor” in my left side along with some little stragglers, I feel pregnant and ready to pop.  Dull pain is something I can handle, but it’s getting tiring along with now going back to menopause symptoms again.  Ovey … I feel like a woman!!!

So, really, diabetes is the least of my problems right now.  Being on the insulin pump, along with the CGMS aka Bowie (Continuous Glucose Monitoring System) I am managing to sort of keep things okay in that area of my health.  The rest is crap, but I know it’ll get better.

Pre-op is this Tuesday with surgery scheduled a few days later (yeah – no 6-12 month wait like Quebec).  I am hoping that I’ll be allowed to wear both my pump and CGMS during the operation (LAVH or Laparoscopically Assisted Vaginal Hysterectomy will be performed – less recovery time – yippee!!).  So cross your fingers for me.  I’m hoping that due to the high amount of pump users here in Ontario, that more hospital staff will be familiar with how they work, unlike where I was in Quebec.