Category Archives: Endocrinology

YouTube

I fully intend on continuing to write here, I’m just a bit burnt out on it for now.

In the meantime I have been making videos on YouTube regarding all the same stuff I write about here. I have a total of three videos posted as of this post.

Check them out if you like.

https://www.youtube.com/channel/UC3KOi-Y0gQioRcQpG17hwGw

I have the videos set to 18+, so you will probably have to log in and/or “verify” your age.

Why So Fat, yo?

I have a very serious problem and I need the help of my readers to hopefully figure it out or at least get some direction to put me on a path to figuring it out.

I have spoken to several of my doctors, especially my endocrinologist and primary doctor but they are not listening very well and aren’t concerned (and don’t seem to see how very concerned I am), and simply assume my problem is solely due to my lifestyle even though I have stressed that my lifestyle contradicts what is happening here!

My problem is that I am continuing to gain weight (fat) even though I have been working for months upon months to lose weight (fat)!

How is this even possible!?

I exercise and I do not overeat! I eat a healthy, low carb diet with lots of non-starchy veggies, protein, and healthy fats. I do not eat too many calories, either. It’s a great diet for type 1 diabetics and for weight loss! I’m not perfect, but I do very well most the time.

I have a million health issues, and yes some of them make it difficult to lose weight and very easy to gain.  But the extent to which I have gained and continue to gain is extreme and I do not believe it is totally my health issues to blame here.

Type 1 diabetes, mild gastroperisis, mild PCOS, severe insulin resistance, peripheral neuropathy, heart disease, hypothyroidism, blah, blah, blah…

Researching all my medications I am not taking any that cause weight gain except my insulin which I do have to take a large amount of (at the very least 75 units a day but usually much more). But my endocrinologist tells me my insulin is probably not to blame here, at least not to a large extent.

I do take several supplements for several different reasons- deficiencies, immune health, and metabolism health. I am not taking zinc or selenium at the moment but I plan to start because I recently read that they may help with weight-loss because they help to treat hypothyroidism where medication fails (T3 conversion).

Just this year alone I have gained over 20 lbs while exercising and eating healthy (geared toward weight-loss). I have not been able to lose even one pound.

I’m sure you can imagine how heart-wrenching and frustrating this is!

I shouldn’t be anywhere near as big as I am! I shouldn’t look like this!

Why won’t my doctor’s do anything helpful! All they do is say “I can refer you to a dietitian” or “I can prescribe you some diet pills”.

I don’t need a dietitian, I know how to eat right, I am eating right!

I don’t need your stupid pills!  I need to know what’s causing this and fix it! I need a permanent cure for this!

GAHHHH!

I don’t need or want another diagnosis of yet another illness. But since I am so lost and frustrated I looked up “reasons for weight-gain not related to lifestyle” or something to that effect, I don’t remember exactly.  And the answer I got that does match literally all my symptoms is Cushing’s Syndrome (endogenous).  The only problem here is that all the symptoms for Cushing’s can be explained by many of my other illnesses. At this point I don’t think I have it. It wouldn’t hurt to ask my doctor to run tests.

Any suggestions are appreciated.

A Bit of Random

I spend too much time writing blog posts that simply report what is going on in my medical life. I had this appointment, these symptoms, etc. I really need to get back to actually writing the way I love to and know how to. I need to stop being lazy about my writing.

As an uncontrolled type 1 diabetic I have a butt ton of health issues. Although I’m told time and time again that it is not all my fault, it can happen to even the most well controlled diabetic, I am no fool. I know and do not shy away from the fact that my lifetime of rebellion and self-destructive behavior… purposely not taking care of myself, has earned me these punishments. I do my best to take them in stride and try to be good…better late than never.

I am very prone to staph infection. The only thing I can say is good about this is that these infections are only skin deep. I have never had an internal and life threatening staph infection. But these infections must be treated promptly and aggressively because they are tough and can take awhile to overcome. I must check my body daily to make sure no new infections have popped up. These infections don’t hurt or let off any noticeable symptoms most of the time. They are only noticed by sight; usually a dime sized crater in the skin that is hollow to the touch. If I don’t catch it early it may abscess…that’s when the pain hits.

I have lived with powerful anxiety my entire life, but it has only been this past 3 years that it got severe enough that I finally admitted I need help with it. I have been going to counseling. This started out as group therapy and art therapy, but is now one-on-one. I am very glad to be doing this. It helps to talk to someone who is neutral and not judgemental, and understands how I feel and what I’m struggling with. I am given some homework after each session, something to work on, an exercise, or just something to actively think about. Currently I am writing a personal diary that no one reads but me. In this diary I write about all those things I would never tell a soul (it’s not really that much since I am mostly an open book). It’s just a way to get it out of me, to actively think about it and face my fear, shame, anger, etc. in a manner that is still private. One thing I knew, but had not admitted, that I’ve learned in therapy is that I am agoraphobic (afraid to leave my home). I would say it’s borderline because I do leave my house – when I have no other option – it is just difficult because being around people makes me profoundly uncomfortable (anxious) and I just want to hide in my safe place (home).

What made my anxiety begin to get worse was my broken heart. Call it a near death experience. I more accurately call it a wake-up call. I finally realized exactly what all those warnings really meant. “Take care of your diabetes or you’ll have a heart attack and die.” “Take care of your blood sugar or you’ll go blind.”, etc.. These things actually really do happen! I am living proof. We are not immortal. We are not the exception. It can, and will happen to you if you don’t take care of yourself. I lay in my hospital bed, about to be rolled into open heart surgery, and all I could do was bawl in terror and cry for my mommy.

From that moment on the anxiety was constant and crippling.

As many diabetics do, I suffer with depression as well as the anxiety. Although I never haven’t had anxiety, the depression began at my type 1 diagnosis. Again, I never realized I was depressed. I just thought this was how life was; doesn’t everyone feel this way? It wasn’t until several months ago that I lay in bed in my week old filth, thinking I should get up and do something, but then thinking what’s the point, that I realized I needed help. I’m on happy pills now and the depression is well under control. My smile is actually genuine, no longer a mask. 🙂

I never haven’t struggled with my diabetes. I used to think it was all my fault ( in many ways I still do) but over the past couple of years I’ve learned so much more about this disease than I ever have known. And I’ve learned that I am justified in thinking I’m a bad diabetic, but for different reasons than I first thought. I used to think I was bad because I couldn’t control my blood sugar even when I tried and did everything right. I now know that wasn’t my bad, it’s just the nature of the disease. There’s just too many factors that effect blood sugar. I am a bad diabetic only when I don’t try.

Living with diabetes has made me a much stronger person. I have a high tolerance for pain, hell I had invasive eye surgery (which is done while you are awake) where the nerve block wore off and I remained still -in agonizing pain –  and quiet while the doctor “quickly” finished up. I persevere despite a million setbacks and frustrations over my health and BG’s. I try to make the best of my circumstances and use my experiences to reach out and help other diabetics.

I don’t know about most diabetics, but I love my endocrinologist. We get along great, we understand each other. She lets me talk, and actually listens. She is aware of the stress and emotional toll diabetes takes. She schedules 15 minute appointments because she is required to, but she’ll spend as much time as is necessary with her patient. She knows diabetes inside and out and makes treatment plans for the individual, not the ‘ideal’ or ‘average’ diabetic. She was my endo from age 11 to 19, and then from 21 to 27, and then just this year, at age 37, I started seeing her again. I keep coming back because I have never found a better endo.

There is a condition common among diabetics called gastroperisis. This is basically nerve damage of the stomach  probably caused from years of inflammation from high blood sugar. This nerve damage causes the stomach to become paralyzed and no longer digests and empties properly. This causes a lot of distressing symptoms such as loss of appetite, malnutrition, nausea, vomiting (often hours or days after eating you’ll vomit up undigested food that’s just been sitting in your tummy twiddling it’s thumbs).  This condition is not fun. I found a great way to ease a lot of the symptoms. One probiotic pill every single day.

I’ve had a lot of non-diabetics assume that the symptoms of hypoglycemia (low blood sugar) are the same every single time you experience a low. This couldn’t be farther from the truth. There are many, many symptoms of low blood sugar – confusion, aphasia, blurry vision, sweating, random tingling and numbness, weakness, shakiness, panic, lethargy, loss of consciousness, mood swings, nausea….I could go on and on with symptoms. Every time I have a low the symptoms are in a different order, some I have, many I don’t, and they come in different severities depending on the severity of the low.  It’s like drawing a lottery.

Another misconception of diabetes is that the diabetic must follow an extremely strict and restricted diet. Pshh, we can eat whatever the hell we want as long as we are smart about it. And every diabetic is different, unique. What one diabetic has a hard time eating without spiking another diabetic might have no problem with. So, don’t go judging or asking things like, “are you sure you can eat that?”. Watch me…

My most recent struggle has been with my thyroid. You think the symptoms of hypoglycemia are bad…OMG, the symptoms of hyperthyroidism are down right terrifying! I thought my heart was going bad again. But, thank the gods, after a month of terrifically galling symptoms I finally, and quite spontaneously, got better. It wasn’t Grave’s Disease as we feared, it was just a case of thyroiditis, which cures itself.  Whew.

Well, there you go. I’m rusty in my writing, but I’ll get back on track soon.

 

 

The Good, The Bad, and The Gray

Today I had and Endocrinology appointment. I was nervous for one reason only. You see, I usually have access to my lab results before I see my doctor. I’ve worked it this way by getting my labs done soon enough that the 14 day California regulatory withholding period for patient access goes by, and I am able to see my lab results before I see my doctor.  I like it this way so I can have questions available before the appointment.  You know how often you are in the doctor’s office, get news, and then after you are on your way home and have had time to think it through…then you think up a bunch of questions!  I hate that; I want to be prepared before the visit.

This time I was unable to get my lab results ahead of time, so I felt so very unprepared.

Anyway, I went through the normal pre-doctor routine; weight (I’ve gained 8lbs in the last four months!), BP (120/74). Then I followed the nurse to the consult room and waited nervously for the doctor (Diabetes Educator, actually). Several minutes passed and then she came in and greeted me happily. Then we got down to business.

“Congratulations! Your A1c is down to 7.7. That’s a great improvement from the past.”

“Yay! I’m so happy!” I smiled big.

“So, the CGM is helping you a lot…”

“Yes, I love it!”

We went over my other lab results. My liver is good, my cholesterol is great. Then she told me my kidneys are showing signs of trouble. Not bad, but something to keep an eye on.  I explained that my kidney function has been stuck at this exact place for quite a few years. She said that that is confirmation of mild kidney disease and it probably will never get better but the fact that I am doing so well and getting my blood sugars under control will help to keep it from getting worse.

Next we talked a bit about my PCOS. I told her that the Metformin and birth control seem to be doing something, but I have yet to see any real results; but I’ve only been on it for a couple months.

I told her my major concern right now is that I am doing so well at getting my BG’s under control, eating healthy, getting as much exercise as I can push myself to do everyday before I crumble into pain and tears (neuropathy)…I’m doing everything right to be healthy and lose weight, but instead I am gaining?!

She looked over my labs and meds, and took everything I had just told her into consideration and after pointing out that weight gain is a possible side effect of Gabapentin… she concluded that I am probably gaining weight because my blood sugars are under better control.

Really?!  There’s never a happy ending for a diabetic!

You see, when my blood sugars were chronically sky high, my body spilled all the excess sugar through my urine. A side effect of this is weight-loss.  Now that my blood sugars are much lower, my body uses the sugar it needs, and stores the excess as FAT!

Fuck you, body!

She suggested a few weight-loss drugs that might help me. She also suggested I join the weight-loss program they offer at this office.  She gave me brochures for both suggestions.IMAG0838

I asked her if maybe the Humalog and Lantus I started on back in February (just a few weeks before I started ballooning up) might be partially to blame for the weight gain.  She doubted it.

I asked her about going on a pump.  She was all for this idea and suggested the Animas Vibe because I already have a Dexcom CGM and the Animas links with it.  I was all for that and she said she would contact the rep and get the ball rolling. She also gave me a booklet for the Animas Vibe.

“A pump may help with weight-loss as well, because you’ll use less insulin.” She pointed out. IMAG0839

The conversation soon turned to my foot issue. She actually remembered my injury from February, which pleasantly surprised me. I asked her what might be causing the continued discoloration. She examined it while I explained the entire situation.  She then told me it looked like it was still in the healing process.  This is very slow healing probably because of my poor circulation due mainly because of the vein they took from this leg for my heart. She assured me it was OK, no worries.

Finally, she gave me a lab slip for my future labs before my next visit in three months. I asked for refills on some prescriptions, and then we said our goodbyes.

The only thing I forgot to ask her was if it might be beneficial (especially for weight-loss) for me to up my Metformin dose. I guess I’ll just have to call or e-mail…or maybe I’ll just hold off until my next visit and see what happens in the meantime.

Seeing an Endocrinologist After Eight Years Off

I never thought I’d say this but I was downright excited and giddy to see an endocrinologist today.  Why? Because it’s been eight years since I’ve been able to see one.  I went nearly seven years without insurance and then once I regained insurance it took a year and a half before I was able to get a referral for an endocrinologist to go through.

So what happened at my appointment today?  A lot of extremely good things.  First I filled out a bunch of forms giving a detailed medical history and family medical history.  With six type 1’s in the family this took a bit of time. Then I was weighed, I gained five pounds this week…this is getting seriously worrisome.  Then my blood pressure, 128/83.  Blood sugar, 103. The nurse asked a few questions like why am I no longer taking the low dose aspirin.  I explained that it was causing too much bruising and unstoppable bleeding. So I am now only on Plavix.

I was then taken in to an exam room and a few minutes later the doctor came in.  She explained that she was not the actual endocrinologist I will be officially under the care of, but a diabetes educator.  She asked me a few questions regarding my health history.

“How long have you been type one?”

“27 years.”

I told her I asked to be referred to this doctor because my brother (who is also a type 1) is a patient of hers. She was pleased to hear this.  After some more routine questions and answers, she asked me what my expectations for diabetes care are right now.  I explained I obviously want to gain tight control and one thing I hope will help is to get a CGM (continuous glucose monitor).

“You are definitely an excellent candidate for a CGM.  We will start the process today.”

She asked me why I am on such old insulin. I explained that it is the only insulin I could buy over the counter when I didn’t have insurance and once I got insurance my primary just kept me on it.  She said the first thing she wants to do for me is to put me on Lantus and Humalog.

We talked some more and the conversation moved on to my neuropathy. She asked if I have been seeing a neurologist. I said no.  She probably would have gone on to suggest I see one but somehow the conversation went on to discussing my toe fracture and swelling. She wanted to examine it so I got up on the table and she first listened to my heart and then examined my toe.  She was concerned about the redness and said she was going to prescribe an antibiotic.  I told her an x-ray was taken but I don’t know what it showed because they wouldn’t tell me until I see my primary later this week.  She said she would call and request the results and call me with them as soon as she gets them.

At this point I am loving her so far.

The conversation moved on to me telling her I think I may have PCOS because I can’t lose weight, I have hair where only men should have hair, I think I’m insulin resistant, and I’ve never gotten pregnant.  She said I might just have PCOS and she would order a lab test for it. I asked if she thought it was a good idea for me to go on Metformin and she said yes but let’s do the lab work first.

We discussed diet and insulin some more. She asked how comfortable I was with my carb counting.  I said I think I’m getting by but could use some one on one discussion on it.  She immediately called in the dietitian.  Right then and there I had a wonderful talk with the dietitian (who is a type 1 herself) on how to balance healthy meals and count carbs for blood sugar control. She gave me several print outs with information and tips for healthy diabetic eating and carb counting.

I am feeling awful bright about my future now. 🙂

After the dietitian, the diabetes educator returned and gave me some insulin samples, pen injector samples, and a new meter (Accu-Chek Nano). She also gave me a Dexcom booklet with a form to fill out to get the process started. I filled out the form right then and there and turned it in to the front desk to fax out.

The educator asked to see me back in three weeks to follow-up on how the new insulin is working for me, turn in three weeks worth of blood sugars, and follow-up on my lab work.  I left with prescriptions for an antibiotic, Humalog, Lantus, and test strips. I also left with a lab slip for A1c, DHEA-Sulfate, Follicle Stimulating Hormone, Luteinizing Hormone, Prolactin, Testosterone, Lipid Panel, Microalbumin (random).

I am so very happy with this visit.  I feel like I am finally getting things truly moving with my diabetes care. I am feeling very optimistic about the future now.

What Goes Up…

This was originally posted to my old blog on December 6, 2014

I’ve been raving about how good things have been going for me lately.  After many years of nothing but bad things happening, I finally had hit a good patch and everything was coming up roses.  Well, of course as soon as I let my guard down and give in to the goodness and let myself feel good and happy, it all comes crashing down around me.

After nearly eight years of not being able to see an endocrinologist, and over a year of actually trying and fighting to see an endocrinologist, I finally got an appointment. I was so happy, relieved, and excited to see this doctor after so long without care.  I had a month long blood sugar profile ready to hand over, I was eager to request a CGM, I was eager to talk to someone who knew my condition and could help me to better care for my diabetes.  I was ready.

I went to the doctor’s office this morning, I signed in and sat to wait for my appointment.  After 45 minutes of waiting, the desk person called me up.  I thought she was just going to ask about my new address or something; nope, she informed me that the endocrinologist doesn’t accept my insurance…

This particular office isn’t his, he only comes here once a month to help out.  If I want to see him and have my insurance accepted, I have to travel to his private office, in Hanford!  That’s like a half hour drive from me and in a direction I rarely go.  I don’t have a valid driver license (diabetic retinopathy), I rely on rides from others.  I’m screwed.

So, I didn’t get to see the endocrinologist.  I need to search for another in my area and get my primary to send in a referral…and wait god knows how much longer.  I’m sobbing as I type this.  I’m so fed up with insurance and rules and everything working against us diabetics!  Why can’t we get help even from those who are supposed to be here to help us?!

As if that wasn’t enough to ruin my day, I headed over to the pharmacy to refill my test strips and lancets.  What do you think I ran into when I got there?  My primary, who gave me the prescription for test strips, put on the order to test once…ONCE… a day.  So the pharmacy refused to fill my request because “It’s too early”.  I test no less than four times a day!  I need my strips…NOW!

So I have to call my doctor’s office on Monday and have him correct the order so I can actually do what I need to to stay healthy.

This all makes me want to give up and head on over to the Italian restaurant down the street and fill up on bread, pasta, and calzone!

Of course I may not do that, because no matter how insurance, doctor’s, and prescription regulations work, I can still, for the most part, take care of myself!  I just need to cool off, gather my self control, and not give up!