I’ve gotten a lot of emails, comments and tweets asking me about my progress on getting a diagnosis.
Unfortunately, there really hasn’t been much progress. Hence the lack of updates.
It’s an awkward thing to talk about sometimes. I don’t want it to become the thing that defines me. I don’t want to be “The Sick Girl.” I want to have fun with friends like at the Healthy Living Summit (with Court, above)…not be the downer.
Here’s what we have figured out:
My endocrinologist (who didn’t think hypothyroidism was my main problem), took me off of 90% of my thyroid medication for six weeks in July + August, just to see if it made a difference in how I felt. Some days, I did feel a little better, but I couldn’t tell if it was because of the lack of thyroid medicine or was just a coincidence. We did some blood work after those six weeks, and discovered that since being off medication, my thyroid levels were not where they should be.
So basically, I’m sick due to a combination of hypothyroidism and something else that is still unknown. We at least are starting to get a list of things it is not.
And that’s where everything stands until I meet with a new {family} doctor in early October. Until then, I am managing my headaches { which I get 2-4 times a week }, fatigue and nausea/lack of appetite as best I can.
And having fun and focusing on the positive instead of my symptoms.
Here’s what’s been helping:
- Drinking plenty of water.
- Pilates. It is a hard workout, but doesn’t require as much endurance or energy output as cycling. Plus, it helps with my achiness.
- Working from home, which I know I am very, very lucky to be able to do. When my headaches are at their absolute worse, I can’t handle much light or sound. Working from home, I can take a break when I need to, and catch up the next evening or on the weekend when I am feeling better.
- Getting at least 8 hours of sleep every night. No exceptions.
- The little things, like mugs of chai and cuddling with the puppy and watching old episodes of Lost with Dan.
- Self-set deadlines, which motivate me to write and develop new recipes even when I don’t want to.
For more about my experience with hypothyroidism and whatever else this is, check out these posts:
{ 26 comments… read them below or add one }
I didn’t want to intrude, but I was wondering how you were doing! Good to hear things aren’t worse, but sad that they still don’t know. It seems like so much of medicine is trial and error. Try this, try that and see how you feel. It’s so frustrating, because so much of that burden falls on you.
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A friend asking is never an intrusion!
this must be so frustrating for you.
at least it sounds like your doctor acknowledges that something is wrong and that you’re working together to try to figure out what that is.
i’m amazed at your ability to remain positive and stay productive despite your symptoms! keep us updated.
sarah (sarah learns) recently posted..101 in 1001: number 79
Yes, it is terrific progress from 3 years ago when multiple doctors told me it was “all in my head.” Um, no it’s not.
Ughh, I’m so sorry you’re still in the dark on things. Don’t worry…it’ll get figured out! I have high hopes!
And I’m not gonna lie…I got a little excited when I saw the two of us at the beginning of your post
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Ha. It is a good picture!
<3
Ashley M. [at] (never home)maker recently posted..HU-MOUSSE — Dessert Hummus
Thanks for being willing to update us with this really difficult and frustrating process. It’s a good thing your doc is willing to do so much investigating. Hope some answers start coming soon! <3
You and me both! Thank you.
i hope they figure out something soon. i can’t imagine how frustrating this is, but that’s so nice that you can work from home and take breaks and be comfortable when you need to!
Hi,
I was just wondering if you have been checked for any auto-immune disease, such as Hashimota’s…if they have not already looked into this perhaps you might ask your doc about doing some labs to check for Hashimota’s or other auto-immune illnesses. It just sort of sounds like an auto-immune process and with the hypothryoidism it makes me wonder about Hashimota’s. My mother had it and my sister currently has it and the symptoms you describe sound very familiar.
good luck and get better! Keep us posted!
kelly recently posted..Great Reasons To Eat Watermelon!
We’re looking into other autoimmune diseases, but I have been tested for thyroid antibodies a few times, with negative results. Thanks!
<3 you!
I so feel your pain Julie! I have Lupus (or something like Lupus) and it took forever for my doctors to figure out what was wrong with me (and by forever I mean 10+ years…). I hope you start to feel better soon!
Wow, that is a LONG time! At least now you know!
So many people in your shoes would let themselves get down on the negative side of things, and you seem to be doing such a good job of keeping the positives in mind. You spread a very good message
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Aw, thank you dear. Your comment made my day!
I agree with Kelly, comment #7. This sounds so much like Hashimoto’s disease (or syndrome). My uncle has this and Grave’s disease. It’s an awful combination to have as these fight with each other constantly and make him very sick. Grave’s usually wins the battles. Anyway, here is a link about Hashimoto’s. The symptoms you describe sound so much like my uncle’s. Here is the link:
http://www.mayoclinic.com/health/hashimotos-disease/DS00567/DSECTION=symptoms
I hope this helps.
Thanks, Anne. We have largely ruled out Hashimoto’s because I don’t have the antibodies that usually indicate it. We’ll see, though! Thank you!
I hope this gets figured out soon. *sigh* I decided to have saliva hormone testing done recently and the results ended up being way different compared to my serum results. May be a good idea to do saliva testing to look at hormone/adrenal issues. May also recommend a micronutrient assessment called spectracell. It’s a really interesting test that could explain some symptoms. I was questioning autoimmune as well. Fibromyalgia? something with mitrochondrial activity? Mystery diagnosis is one of my favorite shows! hang in there
We did saliva testing for cortisol, but I think that is all they tested there.
What does spectracell look at/do?
It is a nutritional assessment that measures how micronutrients are actually functioning within your white blood cells vs. serum so it gives you a long term and very specific, functional picture. Their website explains in more detail — http://www.spectracell.com/mnt/ and they have some interesting webinars archived. It’s interesting though because I recently went to a presentation by their lead dietitian and many common pathologies (i.e. headaches, thyroid function, etc) can be linked to deficiencies. I actually just got my results back and was pretty surprised I had some minor deficiencies related to antioxidant function even though I eat lots of fruits and veggies and take a multi.
Hope you find out what this darn thing is and more importantly begin
to feel better !
You seem like a sweet young woman and I can only imgine how frustrating
and depressing it must be at times.
It just goes to show life continues to throw twists and turns when we least expect it.
You are still pretty “newlywed ” and so is Healthy Ashley, but you are both
suffering healthwise now,as of course is the amazing Susan (Great Balancing Act) I know yours may not be life threatening persay, but it has affected your quality of life and so hope you feel the warm wishes and hope we are,all sending each and every one of you.
As we all know, “There but the grace of God (Buddha. spirit,whatever!)go I”….
Take care and best wishes!
Thank you so much for your sweet comment!
Thank you for being so positive about this. I know it’s not easy and I’m sure you’re super frustrated, but the post doesn’t have the air of complaining or whining. I am pretty sure I would be super depressed if I was in your situation and I have gotten super down for far less.
Thank you for reminding us that even when life gets rough, we do have the option of picking ourselves up and moving on. And making delicious food and sharing it with others.
{Will be praying for you AND your doctors!}
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Thank you! Next doctor appointment is in 2 weeks, so I will definitely share more then