When Frustration Turns to Hope

[Tamra11]

This was originally posted to my blog, Diabetes Odyssey.

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.

[Seydlitz]

Your visit with the endocrinologist reminds me of why I decided not to have one. There is no way they can ever know one one-trillionth as much about the disease and its management as the average type 1 patient who has had the disease for any length of time, so we are confronted with a relative idiot who presumes to control and judge our life on every visit! Why do that?

I remember reading a medical textbook on diabetes and the chapter of the book discussing complications began, “Diabetics who choose not to control their blood sugar may suffer complications.” Choose?! Imagine of reading this kind of utter nonsense was the only thing you had ever learned about the disease, aside from the bedside hours you had spent dealing with diabetics (overwhelmingly type 2) under the totally artificial and misleading circumstances of a hospital stay.

[Tamra11]

This doctor has been my endocrinologist on and off since the early '90’s and although I have had my headaches with her on occasion (very rarely) she remains by far the best doctor I have ever had,

She never, ever lies or is fake with me. She openly talks with me and listens to me and she has absolutely no problem saying when she doesn’t know something. She has a son just a bit younger than myself who is a type 1 diabetic so she knows and understands not just the medical end of it but the emotional, psychological, and daily living end of it as well.

I have never, ever put all my faith in doctors. They are only human. But this one I trust and am 98% comfortable with regarding my diabetes, which is a very high percentage, all other doctors I’ve had, endo’s or otherwise, fall far below 50%. I have only been dealing with her for my thyroid for a little over a year, so we’ll see how good she is there, hopefully as good as she is with diabetes.

We, as patients, must also realize that our doctors only know what the labs tell them, what they find in their physical examinations of us, what science has discovered (a good doctor always continues to study) ,and just as importantly in what we communicate to them. If we don’t communicate openly and coherently to our doctors then they are most certainly going to not have all the facts at hand. And this is what makes my endo so good at her job, she listens to me, she asks all the questions she can, she makes sure I get all the info she can offer as well. We usually work quite well together.

She never has tried to control my life. In fact, she works as my partner-in-care, not my superior, boss, parent, or otherwise. She is quite aware that I know all there is to know about MY diabetes and relies on me to let her know how and where I am struggling and works with me, not lording over me. She never once has said “you need to…” do this or that, but has offered valuable insight and suggestions on things I might try based on my labs, BG and pump information, and the information I provide regarding ME, my life, MY diabetes. She sees ME, the person with a life, emotions, and struggles, not a disease she needs to manage but a person she is helping to manage something she knows a lot about and has the tools to help with.

[Seydlitz]

I agree. Doctors who are either type 1 diabetics themselves or have type 1 diabetics in their immediate family ‘get it’ in a way that those who are simply professionally trained and experienced in the disease never will. My endocrinologist for a while was a professor of endocrinology at the local medical school, and after he had married a type 1 diabetic, he apologized to me for all the stupid things he had said before having gained his direct experience of living with someone who actually had the disease. As has been said on this forum before, endocrinologists would learn more by living with a type 1 diabetic for a weekend than they will in 40 years of treating patients with the disease.

[meee]

That’s great your endo was on board and you’re going to try armour! I hope it helps you. Thyroid disease and type1 / diabetes are the worst. Just a nightmare. Ugh. I guess I’m also one of the ones who don’t respond well to just Levo because I’m not converting it prolly. I’m also on too low a dose of everything. So far on the t3 I feel a bit better but I think there’s a long way to go yet. I may have some other issues going on too. I was reading another site where someone said she takes her Levo in the am I think and then takes t3 twice per day otherwise she loses energy.

[Tamra11]

I have been so shocked at how fast I am already seeing improvement with the Armour! I took my first dose yesterday at 8 A.M. and by noon my BG was 61! Although it crept back up to 243 by 6 P.M. it is still markedly lower than it’s been in a long time. My BG’s are usually at their highest (300 - 500) first thing in the morning but today it was only 190.

I am hoping this isn’t just some fluke because I am really feeling hopeful now and I don’t want my heart broken again.

[meee]

Keeping my fingers crossed for you! Don’t get totally discouraged if things bounce around a bit. It takes a while to adjust to things. This week my Bg crashed at work twice as soon as I got there I’m not sure if but I think the t3 played a role along with other things like daylight savings which should be abolished. the t4 when I increased it made me spike I think so maybe t3 really is better for me.