When Everything Falls Into Place

This past week has been full of joy, excitement, and renewal of motivation. It has also had a sobering, humbling kind of effect, this I was expecting so it wasn’t a bad thing but a good and happy one.

For those of you new to my blog or that haven’t been keeping up, let me give you a few points of fact to help you fully understand this post:

  • I have been struggling with hypothyroidism for the past year + some.
  • I am a type 1 diabetic
  • Although I was on a thyroid medication (synthetic) and my labs were saying everything was in range, I still continued to have bad hypothyroid symptoms including very bad insulin resistance and weight gain with the inability to lose.

A bit over a week ago I switched from a synthetic thyroid medication (Levothyroxine) to a natural desiccated thyroid (Armour) medication. Immediately, IMMEDIATELY, the insulin resistance went way, way down. It isn’t totally gone (probably because I have other illnesses that contribute to insulin resistance) but it is massively improved.

I was shocked – and super super excited- at how immediate the improvement happened. My BG’s went from the 300’s to below 100 within 4 hours with no changes to my lifestyle or medications other than the thyroid medication. I changed nothing but the thyroid medication for the first three days just so I could see what the thyroid medication was doing to me. So one week in and here’s what I’ve noticed:

  • The insulin resistance is markedly improved
  • my acne is clearing up
  • I have more energy and less fatigue and sleepiness
  • I sleep better.  Way better!
  • I feel less muscle weakness in my arms and legs

For so long I was trying so hard to get my BG’s under control and lose weight. No matter how hard I tried, no matter how healthy I ate and how much exercise I got and how much insulin I pumped into my body I could not bring my BG’s down or lose even one pound! It was a vicious circle.

I’m sure you can imagine the frustration and hopelessness! I just gave up for a while. Why try if you know nothing will work!

I knew this wasn’t my fault, I was doing everything right, so something else was going on here! So I did my research and discovered the well-known issue many hypothyroid patients have with synthetic thyroid medication.

I changed my thyroid medication and, viola, all of a sudden everything is as it should have been all along!

Now I am re-motivated to do my part. I’m going back to eating right and getting plenty of exercise.

Now I just need to get labs done in a few weeks to see if my thyroid levels are in the sweet spot. I’m sure there will be some dose adjustments, but all is good!

Hopefully soon I will start to see weight-loss! I already feel a million times lighter!  😀

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When Frustration Turns to Hope

April 11th was the last time I met with my endocrinologist before today. Any type 1 diabetic knows that nearly 7 months between visits is not good.  I was supposed to see her in July but cancelled the appointment and didn’t reschedule until now. Let me explain why.

A bit over a year ago I was diagnosed with hypothyroidism, at the time I wasn’t happy about yet another new diagnosis of an incurable disease, but I took it in stride and figured “Just another thing to add to my managements”.

I tried, people, I worked with my endo and tried so frickin’ hard to get and keep everything, EVERYTHING, under control. But life doesn’t cooperate and hypothyroidism mixed with type 1 diabetes is the worst oil and water mixture you can get…as far as I’ve experienced.

Very quickly after my diagnosis, and eventually getting on medication, and getting my TSH, T4, and T3 in line (as of April results) I noticed I was still gaining weight and unable to lose despite tight diet and exercise, and also my insulin resistance was through the roof! There are other hypothyroid symptoms I still have as well, but these are the only two that halt my life and rip my sanity to shreds.

What’s the point in being on medication and having good labs if you still have the horrible symptoms of the disease!? The medication is helping nothing at all; all it is doing is tricking my body into thinking everything is okie dokie when it is not at all okie dokie!

The most soul-crushing thing to experience is putting everything you have into working so hard to do everything right to make things better and then seeing zero positive results of those efforts.  This was me trying to regain control of my blood sugars and to lose this extra 30 lbs I gained from being hypothyroid.

All that hard work for absolutely nothing.

I gave up…I stopped trying at anything at all. Why try if nothing you do works? I shut down for several months.

Then, as is classic me, I thought to myself, “Me, we need to look at this problem from a different perspective.”

There obviously is a cause to this outrageous insulin resistance and weight gain.  Duh, hypothyroidism. OK, so, we know the problem, we know the cause, so why is the treatment not helping?

Who cares why the treatment isn’t working, it isn’t, that’s all we need to know at the moment.

OK, so what are my other treatment options? Is there something out there that will treat my hypothyroidism AND counter the symptoms?

I did my research and I talked to other type 1 diabetics who happen to be hypothyroid (there are a lot out there). I discovered three options I could try, they were not guaranteed to work, but since my current treatment isn’t working the other ones are worth a try.

Option 1: Switch to a Natural Desiccated Thyroid (NDT) medication.

Option 2: Stay on my synthetic thyroid medication (Levothyroxine) and add synthetic T3 to the mix.

Option 3: Switch to an NDT and also add synthetic T3.

Now I had a plan of action, all I needed to do was go in and run it by my endo and hope she would be on board for me switching things up, and possibly switching to a homeopathic treatment….and hope my insurance covers it.

Oh, and there was the issue of facing my endo with the fact that I hadn’t been checking my BG’s hardly at all (why bother when I know they’re high no matter what I do).

Let me add here that in the mean time I was so upset with the knowledge that the go-to treatment for hypothyroidism so commonly doesn’t work well at all, and the knowledge that the go-to “treatment” for insulin resistance is to not treat it but to just give in to it (take more insulin) that I was just livid at doctors, big pharma, scientists, the government, and everyone who has a hand in how very screwed up medicine is and how the patients are the ones who suffer so very badly…

The frustration is very, very real….and constant.

Where are the useful treatments?! Where are the cures?!

So anyway, today was the day, the moment of truth. I was expecting my endo to be very disappointed in my behavior. I was expecting my endo to be not on board with the whole homeopathic approach.  But, yay, she totally surprised me.

I told her my story and experiences from the past several months. And I told her how I want (NEED) to try a new approach to treatment for my thyroid. I suggested to try option 1, the NDT. She listened.

“When you use the term ‘soul-crushing’, believe me, I totally understand, I totally get you.” She said (I swear I saw a glimmer of a tear in her eye).

She was ‘all for’ me switching to an NDT. “Personally I have nothing against homeopathic treatments.” But, of course, because she is a scientist, she does have her concerns. But, in the end she is fully aware as an endocrinologist that specializes in both diabetes and thyroid issues, that although the standard treatment for hypothyroidism (synthetic thyroid replacement hormone) works most of the time, sometimes (in a large enough group of patients to warrant attention) it doesn’t work well at all.

“We must acknowledge that there is something we don’t know.” She says. “So, yes, I do support an alternate approach to treatment in patients like yourself where the synthetic just isn’t cutting it.” (I don’t remember her exact words, but this is the gist of it).

So, beginning tomorrow morning I will no longer be on Levothyroxine. I will be trying the NDT known as Armour Thyroid. Here’s to hoping that it helps me.

There is one other thing my endocrinologist surprised me with after we finished discussing my thyroid:

“OK, now that we’re done with your topic of discussion, we can move on to my topic. I’m so excited to talk to you about this!” She said with such excitement in her voice and a big smile. “Do you know about the Medtronic Minimed 670G? It’s an artificial pancreas…”

“Yes! I’ve been so excited about it ever since it was approved by the FDA.” I responded.

“So you want it? I think it would be great for you.” She said (or something very similar).

“Yes. But I want to take a short pump break first.”

I swear I could see her heart sink. “Oh, Really?”

“Yeah, not for long, it’s just that…well there are a lot of reasons that lead to this decision, but I just want a break for a short while. Then, absolutely I want the 670!”

We made the agreement that I will go back to MDI for a couple months, then, in January when I see her again, I’m gonna be artificial pancreasing it!

All-in-all a good visit, I’d say.

 

 

 

 

 

Paradox of Suicide

*Explanation: I am toying with an idea for what I think will end up being a short story. This is an excerpt from my very rough draft. Thoughts? *

With the thought of what One should say when One writes their suicide note; what should One say? What, in actuality, is the point of the note? To explain why? To try to make them understand? To say goodbye?

To whom? Who would read the note? One is unloved, unwanted.  One is worthless, ugly. One can never do anything right. One has failed at everything and will fail at this as well. One cannot live right, and One will not die right, either.  No One wants to read One’s note because no One cares, everyone will be happy to be rid of that worthless burden.

But One would digress to say such things. The note is not for others as much as it is for One. But One could not write a note to One’s self because One has never lived with One’s self in mind… One has loathed One’s self more than anyone else could ever loathe One. One’s self-destruction did not begin recently; it has been in existence as long as One has existed. One has always lived with others in mind. One has not loved One’s self, but One has loved all others beyond reason.

So One must write the note with others in mind, even if they do not care. Even though they do not love One.

One would begin by letting the others know that they hold no burden of fault in this; it is all One’s fault. One knows that One is loved, One knows that others care. But One can never believe it. What One knows to be true One cannot believe. This is One’s mind.

If other’s that care were to actually exist, they would want to understand why. And this One could try with all One’s power to explain, but One would know for certain that they won’t, they can’t, fathom the depths of torture One’s mind has forever wreaked upon One.

No matter what One knows to be utter truth, One’s mind has cemented other certainties that can never be torn down. “It is impossible for anyone to love you. You are not worth loving.” “You are disgusting, ugly, repulsive.” “You are good at nothing, you are worthless. You fail at everything and you will never be good enough.” “You are not worth the air you breathe. You are a waste of space.” “Nobody wants you around; you should leave, just disappear.” “Even your own body is trying to kill you, let it!”

On and on they speak with authority. One’s mind is never quiet from them. One’s mind cannot escape itself. One fights it. One screams for it to shut the fuck up. One cries.

One has lived with this One’s entire life.

One is tired. One is done.

If One understands even One thing, it is that the others who would read the note would feel compelled to comment. “You are loved.” “You do matter.” “Think happy thoughts.” “Just ignore it.” “Pray, have faith in God.” “Let him and God will heal you.” “Get some therapy.” “Go on medication.”

And with these comments and many, many others like them One would be utterly certain that One failed at getting others to understand. Just like One fails at everything in life.

Their comments and suggestions would simply make it all worse. Do they not realize One has done all of that? One has tried everything to make it go away, to make it better, to fix One’s self. If it were so easy as thinking it away or having faith, it would have been gone forever ago!

One is alone, even when others are around; especially when others are around.

So, One thinks of death. There is nothing once life has ended. Nothing.  Total nothingness. That sounds comforting to One. No noise, no feeling, no weight. Nothing. This sounds like heaven to One.

But One does not go to the nothingness because One knows for certain that One fails at everything. This means One will fail at suicide as well. And that failure is unacceptable.

One fails at life, and One fails at death as well.

 

I’m More Than Just an Illness

My life doesn’t solely revolve around my illnesses. It’s easy to think that it might if you only read my blog. I have dedicated this blog to my illnesses, primarily type 1 diabetes (hence the name of the blog, Diabetes Odyssey), but my health is not the only thing in my life.

I have a few loves that take up my time; reading, writing (not just blogging but all kinds of story-telling), crocheting, cooking, singing, and even recently I have found a love for dancing even though I have no talent for it.

And I love to help. You might not be surprised about this one seeing as I try to stay involved in the diabetes community, spreading awareness and education, as well as trying to ‘be there’ for other diabetics in need of a shoulder or otherwise.

But I also try to help in other areas of life as well.

I recently discovered a really wonderful organization called Random Acts. That’s just what they do, inspire random acts of kindness. Making the world a better place through kindness. It’s such a simple idea, and with it they accomplish wonderful things.

One thing they are currently working on is building a free high school in Nicaragua. Education in the rural areas there is not easy to come by. Many of the people are poor and spend their lives working just to grow food for their families (subsistence living) and can not afford to go to school, or do not have access for a number of other reasons such as distance.

The Free High School of San Juan Del Sur brings access to the people who were previously unable to attain a high school education. They are currently working on building a second structure as well as fully furnishing and making sure they have all they need to function.

Can you imagine what wonderful possibilities suddenly are able to become realities for these people once they become educated? A whole new world, a whole new wonderful life!

I couldn’t pass up the opportunity to help this project so I decided to do this random act of kindness and try to raise some money for the high school.

Please click this link if you would like to know more, and if you would like to donate to a wonderful cause.

 

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 Guide to Failing Hard at Diabetes

  1. Get really super angry at your diagnosis. Never let that anger go. Wallow in it. Marinate your whole being in the anger and hatred of being diabetic.  Let it fill every crack and crevasse of your mind, body, and all that you are.
  2. Be resentful of your diabetes. How dare my body treat me this way! It’s not fair! Why me?! What the fuck, yo! My life is ruined because of this shit!
  3. Rebel at every turn. What ever you are told you should or shouldn’t do, do the opposite. Nobody tells you how to live your life! Do what you want. Screw counting carbs. Screw checking blood sugars. Screw doctor appointments! Screw labs!
  4. Eat too much… and too little.  Yes, you can do both at the same time. Eat all the carbs! Eat until you’re so full you can’t move… then don’t eat at all for at least an entire day. Screw ‘small frequent meals’, nobody has time for that shit.
  5. Self-loathe. Your body is trying to kill you. Your own damned body hates you! So why not hate you, too.
  6. Be as self-destructive as you possibly can. Don’t try, just don’t try anything that could possibly be healthy or helpful. Really, it’s probably best to just sit on the couch day  in and day out binge-watching television shows on Netflix while stuffing your face with anything and everything you like… hell, things you don’t even like, too.
  7. On the super rare occasion that you actually have a low, wait as long as you possibly can to treat it. It actually feels good to be low, once the initial ‘panic’ feeling your body gives you passes you kind of just feel relaxed and comfy, as if you’re just laying down after a long busy day and this is the most comfy spot on earth. Give in to it for a bit, treatment can wait, this feels good, why make a good feeling go away?
  8. Bolus? What’s a bolus?
  9. When you start to have symptoms of complications, just ignore them, it’s no big deal, they’ll go away on their own…
  10. Make sure you put in your will that you want your headstone to read “Fuck diabetes”.

To New Diabetics and Those Interested

It’s been a long time since I’ve written something geared specifically toward the newly diagnosed, or family of the newly diagnosed (or newcomers to a diabetic family)… or those who are just curious about diabetes.

So here are some common questions and topics:

What is the difference between type 1 and type 2 diabetes?  Type 1 diabetes is an autoimmune disease and it is more rare than type 2.  It kicks in usually in childhood but sometimes it can kick in in adulthood. In type 1 diabetes the body’s own immune system decides it hates the insulin producing cells that live in the pancreas. The immune system screams, “fuck you assholes!” and murders them all in a brutal and heartless massacre. This leaves the body forever unable to make it’s own insulin and regulate the body’s blood glucose level (Insulin, cells, and glucose interaction and functions is a complex process that is all about making energy for the body to be able to properly function). The effect of not being able to make insulin and regulate blood glucose causes a body-wide turmoil. It is not as simple as just needing to avoid sugar and take shots all the time. But that is the very basics of it. Anyone can develop type 1 diabetes. There is no cure or vaccine.

Type 2 diabetes is a commonly misunderstood metabolic disorder. Most people think it is caused by a poor diet and sedentary lifestyle, this is one of the big misconceptions. Although a poor diet and sedentary lifestyle raise ones risk of developing type 2 diabetes, they are not the cause of the disorder. Absolutely Anyone can develop type 2 diabetes, no matter their lifestyle. It just happens. Type 2 diabetes is when the body is unable to properly take up and use insulin (insulin resistance) or the body is not making enough insulin to properly lower blood glucose (it is a complex process, how insulin, cells, and glucose function to make energy). Some people believe type 2 diabetes can be cured. It can not. If you have been ‘diagnosed’ as pre-diabetic this means you do not yet have diabetes… it is a kind way of saying you are at extremely high risk of developing it and you need to get your health in order. Pre-diabetes can be cured, but it is NOT diabetes. Once you actually have type 2 diabetes you can’t cure it, but you can get it under such good control that you do not have any symptoms. But if you fall off that good control, you will be sorely reminded by your body that you are still type 2 diabetic. There is no cure or vaccine for type 2 diabetes. Most people think that having type 2 diabetes just means you need to avoid sugar, get exercise, and maybe take a pill everyday. Sadly, it is not that simple, but those are the very basics.

What do carbs have to do with diabetes? Carbohydrates (carbs) are sugars. Most diabetics (type 1 and type 2) closely count how many carbohydrates they eat, and limit them per meal and day in order to best help keep blood glucose levels in the healthy range. Carbs are found in a vast majority of foods and drinks and are identified by many, many different names. Most people assume diabetics just avoid sweets, but it is more complex than that. Yes, things like candy, cookies, ice cream, etc. are packed with carbs, But so are potatoes, rice, pasta, starchy vegetables, fruits, and so much more.  Diabetics are not forbidden to eat carbs, we just need to be very careful about it.

Why do diabetics have to check their blood sugar? A ‘normal’ persons blood glucose (sugar) level does not change very much, but for a diabetic it is unstable and needs to be monitored in order to best be able to regulate it.

A type 2 diabetic’s blood sugar changes fairly often and can fluctuate a lot, especially when carbs are eaten, so it is essential that they check their blood glucose level usually about two hours after eating to make sure it has not risen too high. This gives them very important insight into how their eating habits and lifestyle are affecting their blood glucose levels, and how well their medication (if they are on meds) is working for them. Their doctor can look at the BG (blood glucose) charts to get a good picture of their patterns and adjust meds and lifestyle recommendations to better regulate BG.

For a type 1 diabetic, everything stated for type 2’s applies, but checking BG is not just a good idea, it is essential for a type 1 to keep living! A type 1’s BG fluctuates (often rapidly and  potentially to extremes) all the time, it is like balancing on a tightrope, the slightest little thing (practically anything) can and will make it go either up or down. A type 1 diabetic who is truly serious about their health and BG control will check their BG a bare minimum of four times a day…but usually much more often. And type 1 diabetics (and some type 2’s) often use a device called a Continuous Glucose Monitor (CGM) that automatically checks BG every 3-5 minutes and can alarm when BG is too high or too low or headed those ways.

What is hypoglycemia and hyperglycemia? Hypoglycemia is commonly called “low blood glucose” or “low blood sugar”. When there is too much insulin in the system it depletes the glucose in the body and this causes a whole lot of trouble. Too little glucose in the body means there is too little energy and the body can not function properly. This can cause fatigue, sleepiness, shakiness, confusion, ‘drunken’ behavior, sweats, unconsciousness, coma, and even death. Hypoglycemia is treated by eating something that has adequate carbohydrates in it (glucose tablets, glucose gel, fruit juice, etc.), or injecting  the sufferer with glucagon.

Hyperglycemia is commonly called “high blood glucose” or “high blood sugar”. When there is not enough insulin in the system then glucose builds up to a dangerous level and this causes a whole lot of trouble. Over time, when BG runs too high too often, widespread inflammation of all the body’s tissues causes damage and any number of illnesses and disorders can occur such as chronic dry skin, chronic yeast infections, heart disease, kidney failure, blindness, etc.. Where low BG is immediately life-threatening, high BG will kill you over time. This is why it is so important to work hard to keep BG under control. Symptoms of high BG include excessive thirst, frequent urination, itchy skin, blurry vision, irritability, chronic fatigue, and more… Really super high BG or high BG combined with another illness can lead to a really super life-threatening condition called Diabetic Ketoacidosis (DKA). DKA can be mistaken for a bad case of the flu but symptoms include all the symptoms of high BG and also nausea, vomiting, a ‘fermented fruit’ smell on the breath, severe dehydration, muscle cramps, uncontrollable fast, short breathing… Yeah, get to the ER quick. Extra insulin (commonly known as a ‘correction bolus’) is usually used to treat high BG. In extreme cases, especially when in DKA, a diabetic will be hooked up to an IV and given insulin drip to lower BG, and fluids to correct dehydration.

Why are there different types of insulin and what’s the difference? Basically there are two types of commonly used insulin, rapid acting and slow acting. Slow acting insulin is called basal insulin and it is used to basically cover the body’s very basic needs to just stay alive and keep BG normal if you were just lying around and not eating or moving at all. Super basic description there.

Rapid acting insulin is commonly called ‘bolus insulin’ and it is used to keep BG from totally spiking and ruining your perfect day when you eat. It is also used to correct your high blood sugar if you, for whatever reason, go high.

The above descriptions were given assuming the diabetic is using syringes or insulin pens to administer their insulin. If the diabetic is using an insulin pump, then both their basal and bolus insulin will be rapid acting insulin. This is because there are not only different types of insulin but also different types of insulin therapies. Insulin therapy is the method in which you  administer, and manner in which you use, insulin to regulate your BG.

Multiple Daily Injections (MDI) Therapy is commonly when slow acting insulin is injected once or twice a day and covers the body’s basic needs (as simply explained above) and rapid acting insulin is injected multiple times (as needed) a day to cover meals and high corrections.

Insulin Pump Therapy is when a pump is used to administer insulin needs. A basal rate is programmed into the pump and every few minutes all day long, everyday, a small amount of rapid acting insulin is pumped into the body to cover the body’s basic functioning needs. You can program different basal rates for different times of the day, as needed for tighter BG control. As needed, the diabetic can pump boluses (food coverage and high corrections).  Only rapid acting insulin is used in pumps.

What does immunocompromised mean and why are type 1 diabetics considered to be? It depends on how you look at it. In my experience, many doctors automatically consider type 1 diabetics to be immunocompromised.  But, in actuality, it really depends on the person. I, for one, do not catch viruses (colds, flu, etc.) very easily or often… but I have a huge weakness for staph infections.

Immunocompromised means the immune system is weak (or not working at all) and therefore the body cannot resist or fight off infection normally (or at all).

In my humble opinion a diabetic (type 1 or 2) is not automatically immunocompromised, but can become immunocompromised if they are not keeping their BG under control. Chronically high BG can compromise the immune system just like it destroys every other part and function of the body.

The better you control your BG, the healthier you will be. Plain and simple.

 

 

Do you have any other questions? Ask in the comments. 🙂