broken record.

I stepped on the scale this morning and discovered that I’ve gained five pounds.
I took a 3 hour nap this afternoon. Woke up feeling just as tired as I did when I first laid down.
I tried composing a response to my doctor today, but I literally couldn’t think clear enough to form a comprehensive email.
My hair is all over the floor throughout my house.
But my numbers are in the “normal range.” So, whatever.
I was emailing back and forth with a woman who also has Hashimoto’s. There was something she said that made me nod my head furiously in agreement.
“I agree this is awful, I feel like..not me. I guess that’s the best way to describe it.”
That’s exactly the way to describe it. I feel like NOT ME. I don’t look the same, I don’t think the same, I don’t react to things the same. This has changed everything about who I am. Sometimes, I think I’ve come to terms with it, but then, I’ll see an old picture of myself and think “Wow, I used to have such thick, shiny hair.” Or I’ll read an old blog post that was funny and feel frustrated that I can’t write that way anymore. And suddenly I realize I’ve not yet come to terms with this disease and the havoc it has wreaked on my body and my mind.
The rational part of my brain understands that this is NOT THE WORST THING THAT I COULD HAVE. It’s not cancer. It’s not a brain tumor. It’s not MS. But on days like today, days where I have a hard time functioning, days where I have trouble thinking straight from the fatigue, days where I cry at the THOUGHT of having to put shoes on and exercise, it FEELS like the worst.

31 thoughts on “broken record.

  1. Mahala

    I’ve got FMF, different disease, similar suckage. Sometimes my weight jumps 8lbs in 24 hours. It’s enough to make you want to hurl the bath scales at the latest “jenny craig” commercial. Hang in there.

    Reply
  2. mrs.chicken

    This is the worst thing that is happening TO YOU. So for you, it is the worst thing you are dealing with right now. And it is OK for you to feel that way. You hear me? We don’t need a disclaimer. You are suffering and that is all there is to it.
    I understand. I do. I know you want to say “oh, it could be worse.” I have chronic autoimmune issues that are now attacking my joints. Next up? Heart and liver, if I’m not careful. So yeah, it could be worse, but it is also f**cking terrible for me now.
    I hear you and I am listening, still. Love to you.

    Reply
  3. Dawn

    I have heard a lot about eating a high raw food diet doing wonders for thyroid issues. Wish I could remember the exact link of the most informative one…if I come across it again, I’ll send it to you. In the meantime, maybe you can search around the internet to look into it. It certainly can’t hurt! :)

    Reply
  4. jadine

    Hi. I have been a lurker for a long time now. I was taking a tiny amount of synthroid for mild hypothyroidism for, I don’t know, 15 years or so. Then my sister and my mother both got thyroid cancer, and I requested that they ultrasound my thyroid to see if there was anything up with mine (I was gaining weight, losing hair, was exhausted, felt weird, etc., and my levels were “within normal limits”). Sure enough, I had thyroid cancer and had my thyroid removed in December. You know what? At least I could get the damned thing removed and could get on with things. You feel crappy, and you’re sort of stuck there. You say at least it’s not cancer, but if it was, you could at least get it cut the heck out and maybe be done with it :( Anyway, don’t minimize the effect it’s had on your life. It sucks until it doesn’t :(

    Reply
  5. Positively Present

    Even though it’s not the worst thing you can have, it’s okay to be upset about it and to feel unhappy for a bit. The key is to try to focus on the positive and look at what’s wonderful in your life, but certainly don’t beat yourself up over feeling down from time to time. It’s completely understandable and sometimes we need to take the time to just feel bad in order to feel more positive in the long run.

    Reply
  6. DJ

    I have Lupus – and maybe it’s not the worst thing I could have… just like what you have may not be the worst thing you could have but it’s like comparing apples and oranges. They’re both fruits. Different and yet there’s common threads there… they are both fruits – good for you – etc… Often I will talk to my friend who has Crohn’s – it’s not the same as Lupus but she understands what I whine about something typically Lupus like and she may not have the same thing but there’s common threads there as well… we are both sick – we are both sick of being sick – etc…
    What I’m trying to say (and not very eloquently) is that there are people out there who will always say “it could be worse” but you don’t need to qualify or justify being upset with your medical situation just because it could be worse. Those of us who suffer understand.

    Reply
  7. Cristin

    I have MS. And some days it sucks, enough that I want to throw someone through a wall. And on MANY days (or moments, whatever) I feel profoundly grateful that I don’t have a family history of cancer, but our autoimmune stew is bad enough. I UNDERSTAND your frustration and grief, you are allowed to hate your thyroid. And you don’t have to suffer in silence and be grateful you don’t have something worse. This is awful for you, and I wish you weren’t sick.
    Hugs

    Reply
  8. Becky

    I have thyroid issues too and man, I understand this. Somedays I really wonder if it’s all worth it. Which is *SO* not who I am, you know?
    Hang in there Y. You need to find a good endocrinologist.

    Reply
  9. Brandy

    Um, no on the raw food diet. There are certain foods in their raw form that can harm your thyroid function. They are called goitrogens. Also, has your Doctor checked your adrenal out-put? Seems that can be affected with hypothyroidism as well. There is a forum at About.com for thyroid. And I am so sorry. I have hit the same position with my Doc. All I can do is send HUGS!

    Reply
  10. Shaunta Alburger

    I am a long time reader, even though I rarely post. But I wanted to say that I’ve been having the exact same symptoms as you for a long time. I finally found out that I have a gluten intolerance. It can be Celiac’s Disease, but there is also non-celiac gluten intolerance. It only took two or three days for me to stop being crushingly tired even after 12 hours sleep. I’ve not been able to lose weight, and my weight has continued to go up since my four year old was born. Since giving up gluten, I’ve lost 15 pounds without much effort (that’s in about 6 weeks.) Just thought I’d throw it out there for you to google :)

    Reply
  11. CATE

    You know I have the same issues. Exact same. Fortunately I found an endo who will look beyond the numbers and listen to my description of how I’m feeling and what my symptoms are. That said, I was still struggling even though my synthroid dosage was great and my levels were on the low end (where I need them to be to feel good). What helped? The crazy pills! Yep…got myself some Zoloft to help kick the depression in the ass. Is it possible that you need a little “help”, too?

    Reply
  12. Janice

    I have lupus, have had it for four years. One of my friends told me the other day that she thinks I really need to let go and forget about who I used to be implying all that encompases– used to look, used to think, used to feel, used to be.
    If only it was that simple.

    Reply
  13. Stefanie

    I’m just so sorry you’re feeling like this. And you can be a broken record all you want. It’s your darn blog. I’m going to keep reading it. and loving you thinning hair and all.

    Reply
  14. Paul Blake MH

    Hi,
    Just a few observations I have made. Have you noticed that modern medicine says they need your money to find a cure and yet they have not found a cure in 60 years, 0. And autoimmune diseases like Thyroid disease are interesting there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. And medical science cannot explain why we have this autoimmune epidemic. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine, even too much stress says latest research. Naturopathic medicine says, “Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for an Thyroid sufferer you are attacking your body with your immune system, a world upside down. God bless you in your search.
    Sincerely
    Paul

    Reply
  15. Sara

    I know how you feel (in some ways). My doctor is refusing to give me my monthly B12 shot because my blood tests showed a level of 630. He considers anything over 200 to be “normal”. Problem is, I FALL APART at under 800 or so. I can’t remember anything. I walk into doorways. I start having neurological symptoms. I stop being able to sleep. My appetite disappears and I become suicidal.
    The idea of having to drop down to 200 kills me.
    Doctors don’t listen. They don’t seem to understand that EVEN IF the numbers are “fine” or “within normal” that we do NOT feel “fine” or “normal” and that they should be trying to figure out what they CAN do for us, or why we feel so crappy and are having more symptoms when the numbers are so f*ing normal.
    I feel for you.
    I hope you get answers soon.

    Reply
  16. CookingSchoolConfidential.com

    I was just feeling all sorry for myself because I had just done hours worth of midterm exams (I’m a culinary school student) and was exhausted and drained.
    I love how life steps in and puts things into perspective.
    It gets better. I always does.
    Cheers!

    Reply
  17. flippay

    you need an endo who treats by symptoms, not by numbers. Many people only feel normal at 1 or 0, so you need to find an endo who will bring your numbers down to get rid of your symptoms…even if you need to pay cash to get someone decent outside of your network. The cost is worth it to feel normal again. I hate to sound like a broken record, but I can give you the studies to prove it. It works – I’ve seen it work on Leigh-Ann. She doesn’t have ins. So she’s seen experts in the field by paying cash. I don’t know the experts
    Are in your area, but Dr. Brian Berelowitz in Vegas and Dr. Alan Cohen in No CA are both doctors who will treat you based on how you feel. Perhaps you can get referrals from them in your area. You need a doctor who cares about how you FEEL, not just look at your numbers because some people ONLY feel ok at zero. It’s worth the $ to pay cash if necessay or to give your doctors the studi

    Reply
  18. flippay

    oops, got cut off. I’m writing on my iPod so it’s a bit tedious. Anyway, if you want the article about how some people need to be at zero or 1, let me know. I’m sure it would help you; however, I promise this will be my last comment on it. Our hope is for you to feel better, and Leigh-Ann’s experience a/ Hashimoto’s has led to lots of research and hopefully can help others in the same boat. As always, your mileage may vary. (too hard to proof, sorry)

    Reply
  19. patois

    I’ve just gotten my hyperthyroidism under control. Not the same thing, for sure, but I mention it because in working to get that sorted out, I encountered several people with Hashimoto’s who have discovered that the meds they take can vary widely in efficacy. It depends on the lot, how old the meds are, etc. They’ve befriended pharmacists who understand the issue and who work with them to find a lot that works for them. I don’t know if you have a friendly pharmacist, but I thought I’d just put that out there for you.
    And, dear God, rage about this. You don’t need permission from cancer victims or others with “worse” chronic diseases to bitch.

    Reply

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