This post is a little overdue (by 6 months), but whatever- my stories, my schedule. Or something... The thoughts and emotions remain valid..
So in one of my previous posts i mentioned that my last bunch of lab tests were... Interesting. Everytime i get blood drawn for an appointment with my doctor, she tests my HbA1C, my lipid profile, and my TSH (thyroid stimulating hormone) levels. Once a year or so she tests for a whole bunch of other stuff. But for my regular blood draws, those are the golden three. I had tests done towards the end of last year and lipids and TSH came back normal and my HbA1c was hugely improved (yay!). Fast forward a few months to my next bunch of pre-appointment tests at the end of april this year: my TSH levels came back high. Like, 10-times-what-they-should-be high. Like, good glory, how-are-you-not-falling-over-puffy-skinned-and-where-is-your-goitre?? kind of high... (and with it some less than ideal lipogram results, and an unchanged HbA1c- well yay for that at least?). Some more tests (which I had to pester my doctor for a bit more than i would have liked, surely confirmatory tests should be normal before you make a diagnosis? Otherwise it's just an assumption? A well educated guess?) confirmed that i did indeed have elevated antibodies against my thyroid, and lowered T3/T4 levels.
Well hi, hashimoto's hypothyroid, nice to meet you...
I know that this is not, technically, a big deal. I know that hypothyroidism is relatively common among women in general, and that a lot of people with type 1 diabetes have hypothyroidism. And i know it's easily managed. A pill, once a day, every day for the rest of your life, and you're A-OK. Please, in comparison to testing blood sugar 8-10 times a day, multiple injections or pumping insulin, lowering highs, raising lows, watching what you eat and making sure to get regular exercise- and avoiding lows in the progress? In comparison, one pill a day and regular blood tests (which i do anyway) is nothing. Really.
I am not overly upset or stressed about this. Exhausted, maybe, at the thought of having one more thing to deal with. Exhausted, just in general? I confess, there is something particularly disconcerting about realising that , despite all your efforts to control a pre-existing chronic condition (diabetes), your current lifestyle is so unhealthy, so high-paced and high-pressured and so sleep-deprived; that you assume it's perfectly reasonable and normal to feel as crap as you do, to be permanently exhausted, emotional, stressed out and on-edge, that you don't even recognise the way you feel to be symptoms of a disease state. Surely, surely, there's something wrong with that? And, perhaps, something wrong with the post-graduate research system, or the research community, and maybe even society, that we encourage and reward people who live like this? Maybe? (ok, perhaps that's a tirade for another post).
Aside from my exhaustion, there is a slight sense of mourning, a sense of loss that doesn't particularly make much sense. I'm already used to having one endocrine gland that doesn't work all that well, and resigned to living with it for the rest of my life. So the life-long aspect of hashimoto's is not a big deal for me. Maybe its more just the fact that i was so young when my pancreas died that its just always been my "normal" for me. This is the first time i have to consciously realise and accept that a part of my body that was working just fine not too long ago is now defunct. Dead. No more. And with it, my body has lost one more tool available to it to fine tune and regulate my metabolism and maintain homeostasis. And so, even though i can just take eltroxin and carry on and this doesn't really affect much else, on the other hand, in a myriad of small ways, this affects everything. And that makes me a little sad.
Perhaps the bigger over-riding reaction to this, that has simmered down since april but remains always lurking in the background, is a loss of faith in my immune system. No, make that the gain of a deep sense of suspicion of my immune system. For this, perhaps a bit of background information may be useful.
I am the only person in my family with diabetes. Among all the aunts and uncles and cousins and grandparents, parents and siblings (ok, i only have one sibling, but that's besides the point), i'm the only one. There's not type two diabetes in my family either. Nothing. It's just me. This may strike people as unusual, but there's another clear pattern in my family which makes perfect sense. Autoimmune diseases. Almost exclusively from my father's side of the family, there is a very strong pattern of autoimmune disorders, big and small. Besides my diabetes, there's addison's, lupus, hypothyroidism, hyperthyroidism, hypoparathyroidism, otosclerosis, scleroderma, vitiligo, dermatitis and rheumatoid arthritis- all autoimmune linked. And that's just the stuff i know about. My point is, we do autoimmune diseases. You may as well make us t-shirts.
Up until this year, i had mostly just accepted diabetes as my portion of these lovely (<-- sarcasm) genes. I figured my immune system had chosen to pick on my pancreas, it got that genetic aggression out of its, uh, system, and now we can all move on with life. Not so much apparently.
With a hashimoto's diagnosis, it's not longer just diabetes. I now have diabetes AND ---. l'm now more complicated, more high maintenance. And more at risk of more autoimmune crap. A lot of people get no more than the diabetes-hyothyroid combo. But some others go on to get a third disease, usually addisons. Its common enough to have a name: poly-glandular autoimmune syndrome. Knowing this, and knowing my genetic background makes me nervous. I had some extra tests done when my hashimoto's was diagnosed, and nothing looks unusual so far. But i know i need more extensive tests done. And most probably semi-regularly from now on.
In the mean time, it feels like there's always a constant worry in the back of my mind. i no longer trust my immune system to stay at bay. I don't trust it to keep me healthy. I supplement my diet with a whole bunch of stuff, including high quality, high dose omega-3 FAs (EPA and DHA). I'm trying to exercise more. I'm trying to reduce my carbohydrate in take (although i'm not completely sure i buy the whole low-carb thing- more research into that is on my to-do list). I'm trying, really really trying to minimise any levels of inflammation in my body. I've tried to not be too stressed about my thesis and up-coming exam (way easier said than done).
And everytime i don't feel that great, feel a little more run-down or emotional than usual, a little more drained and tired, every time i get a joint or muscle injury that resurfaces or just won't clear up; a little bit of that worry resurfaces. Just for a moment. But it's there.
Your words really resonate with me, Caron. The "and" is what gets me, too - almost as much as the "what will be next"?
ReplyDeleteI was diagnosed as hypothyroid right before T2 (and think the latter was influenced by years of subclinical hypothyroidism). And that lends itself to the newer potential evidence of T2 being autoimmune. And then what else...yeah.
ReplyDeleteAfter 20 years of being hypothyroid, I suddenly became so hyperthyroid they had to zap me with the radioactive iodine. I'm back to being a somewhat controlled hypothyroid but every time I get sick, it annoys my three remaining active thyroid cells and I go back to being a raging hyper. Drives my endo nuts.
ReplyDeleteThanks for your comments ladies! It is indeed the "what next/what else?" that gets to me. And if its' all linked to inflammation and autoimmune issues then your story makes sense, Rachel. Mary, your thyroid (or those last few cells) sounds like it gives you a hard time- how do you and your endo keep up with it?
ReplyDeleteIt's a strange wish, but sometimes I wish my tiredness/feeling like crap/etc were the result of some condition that someone could discover. Is it just my bad A1c? Is it depression? Am I so stressed out that I'm making myself feel like crap? There are some days I wish for a speedy medical diagnosis to make it all make sense. I'm sure, of course, that would come with its own feelings and emotions. But still. Sometimes when you feel like you've been searching for answers for years, you wonder what it would be like to be diagnosed with something easily treatable.
ReplyDeleteNot a strange wish at all. I've heard doctors i know speak of the importance of diagnosis, and with it, prognosis, not only for treatment, but for peace of mind for the patient as well. One of the challenges as patients is when we have to be the driving force behind working out what the problem is (of course, after recognising that something isn't quite right- i think we tend to seriously underestimate the role and effect of stress in our lives). All the best in your search for answers!
DeleteYour comments about your hectic lifestyle really hit a nerve...especially as I'm currently in my office grading a stack of bibliographies at 10 pm and I haven't even gotten to my own homework yet. I was diagnosed last January in my second semester of grad school. I thought I was exhausted from the stress--apparently, I was exhausted from stress AND type 1 diabetes. Feeling for you.
ReplyDeleteYikes, a T1D diagnosis in grad school- not cool, sorry :( i empathize right back at you about the long hours and stress! It really makes me wonder if there's not a better way
DeleteHey Caron, great post, and I hope it was helpful to pour these words out onto the screen. It is totally sucky to question our own bodies, and very worthy of mourning and sadness. I'm right there with ya.
ReplyDeleteHey, thanks. It was indeed helpful getting the words out, but also hearing back from people that these worries are not unique, i'm ot alone in this. That's pretty powerful. Thanks for the encouragement on getting stuff going here again!
DeleteHey Caron, I'm really sorry to hear about your diagnosis! I notice you said you're yet to try the low carb route and still want to do some research. I switched to a Paleo diet (read: eat REAL food) in nov last year and can't explain to you how it has changed the way I feel and manage my diabetes. I really want to encourage you to just try it. What if, after 30 days - it has changed the way you feel and improved your health? What if it doesn't? Well then at least you know, and you're back to where you are now. Check out this link for further encouragement,http://robbwolf.com/2012/02/27/testimonial-kymberlys-story/ and feel free to email or tweet me for any questions or concerns - I recently helped another diabetic make the switch and he can't get over the difference!
ReplyDeleteHey mark, thanks for the comment. I was vaguely expecting someone to bring up paleo ;) I'm not the averse to the idea, but the way my brain and personality work, i need to know more before i make such an extreme diet change. The field of dietary and nutritional research is a mess, trying to decipher valid results from the crackpots out there is a bit time consuming. I have a lot of questions about it, especially regarding biochem and metabolism and such- it definately is on my to-do list to read up on it. In a similar vein, i've also been looking at the "slow-carb" diet, ala tim ferris (and alot of the same questions and necessary homework applies). I'll keep you posted if i decide to make the give it a shot (or not, and why/not, if you like) and if i have any specific questions i'll definately shoot them your way!
Delete