Thyroid Update

I haven’t been posting as often lately because…well, because of a few reasons I guess. I think I’m ready to admit I’ve been burnt out. Not just diabetic burnout, but all my health problems burnout. I’m tired of it all. I know there is no end in sight for my health issues, there is no healthy me hiding inside this body. The diseases I have are not curable and I am stuck with this shit forever.

I am standing on the tightrope between giving up and continuing to fight. It’s tough because I am not the type who ever gives up…but I just don’t have any energy left in me.

I am depressed. I’m on a high dose of depression meds and going to therapy. But I am still depressed.

Very depressed.

Anyway, this post is supposed to be an update on my thyroid issues. I haven’t spoken much about it because I’ve been in limbo for the past few months regarding this issue.

And I still don’t have an official diagnosis (Grave’s? Hashimoto’s? Something else?)…

Let me start at what I believe is the beginning for all of you who don’t know the whole story.

November 2014: I suddenly lose a significant amount of weight even though I’ve changed nothing in my diet or activity. I also begin to have hot flashes and sweat a lot. I really don’t think anything of it, probably because I view the weight loss as a good thing.

January 2015: I notice I have gained all the weight back.

April 2015: I am concerned that I am still gaining weight even though I am doing everything right to be losing. I am beginning to notice other strange symptoms as well: My hair is falling out (only noticeable to me), I am tired all the time, I am cold all the time (although I still have hot flashes as well). I do not connect the symptoms at this time because I have never had thyroid issues and don’t know anything about the thyroid.  My thyroid labs (part of normal yearly labs) at this time come back normal.

June 2015: I still have all the symptoms. Other people have suggested thyroid issues so I talk to my endo about it. She runs a full thyroid panel and it comes back normal so she is not concerned…and neither am I.

February 2016: I have continued to have all the symptoms, although they have fluctuated between severities, and now have new insurance and a new endo. I tell her all about my ongoing issues with weight gain and not being able to lose even though I live healthy enough that I should be smaller. I also let her know about my constant fatigue. She reviews my labs and sees that my thyroid results are all normal so suggests my issues are being caused by something else.

April 2016: I am so depressed and unable to function adequately that my endo refers me to a psychologist.

August 2016: The past month I have been feeling good. I have lost some weight and have had energy up the wazoo. I am having overheating problems and sweating like mad, though, but I contribute that to the summer heat and my activity level. I have just had my labs drawn, though, and my endo sends me an e-mail saying my thyroid is hyperactive, how do I feel?, and let’s keep an eye on it. She orders a thyroid scan and uptake test.

September 2016: I am in severe pain from my hair roots down to my shoulders, I have a swollen lymph node on the left side of my neck. I am also weak, tired, sweating profusely, have a racing heartbeat and shortness of breath, continue to lose weight, have trouble swallowing, BG’s are stubbornly high, and am always physically hungry. I have several doctors trying to figure out what’s up and am put on antibiotics and given a CT scan of my neck which shows nothing significant. I finally do the thyroid scan and uptake and the results come back inconclusive because of the CT scan (with contrast) I had earlier in the month.

October 2016: The swelling and pain go away, but all of the other symptoms remain severe. Thyroid labs come back still hyper. I can not function and feel like I am going to die. At the end of the month I start to feel a goiter on my thyroid.


November 2016: My endo is ready to put me on Methimazole for hyperthyroidism, but then spontaneously my symptoms all just disappear and I feel fine. At the end of the month my thyroid tests come back now hypo (low function). Endo wants to keep an eye on it, she thinks maybe (and hopefully) my issue is simply general thyroiditis and the problem will probably resolve itself.

February 2017: We have been keeping an eye on my thyroid function and it has stayed stubbornly low. I have many symptoms of hypothyroidism still : weight gain and inability to lose, thinning hair (not severe), acne, constant sleepiness, depression, sensitivity to cold, muscle and joint pain, stubborn high BG’s, memory issues. My endo has now decided my hypothyroidism is not going to go away on its own and has put in a prescription for thyroid replacement hormone pills.

I love my endo, she has been my doctor for my type 1 diabetes on and off for almost 27 years and has never let me down or caused me to question her competence. But I can’t shake the feeling that she has dropped the ball on this issue a bit. I know thyroid illnesses can be difficult to diagnose because they all have the same symptoms, etc. I intend to talk to her in a couple of weeks and remind her of all my issues going all the way back to 2014..especially that my thyroid labs kept coming back normal at first. Maybe this will help her to put things in better perspective and give me a definitive diagnosis?

I don’t know, I just need concrete answers.



3 thoughts on “Thyroid Update”

  1. I’ve been on thyroid pills for years. They get upped rarely. I think they need to be upped MORE. I lose hair like a pup shedding in spring, but I’m also under a TON of stress. I get pimples everywhere and I’m worn out. However, I am under a great deal of stress. When I get back to my endo, she’ll do another test and I hope they increase my tablets again. I don’t get why they don’t just do it. It isn’t like too much will make me worse! The wishy washy, we’ll wait and see how things go drives me nuts. I totally get where you are coming from with your depression. If you need to talk, feel free to contact me via my ‘contact me’ link on my blog. When I got this stupid disease of Type 1 weeks after I graduated from high school, I had no idea how much it would carve my life. I laugh and tell people it is the one graduation gift that I’ve kept, but really? it freaking sucks. It has helped me when I take care of my mom, but it still is nowhere near one of my top 550 favorite things. Thinking of you, sending you hope from one who absolutely understands.


  2. I wish , I’ve read this post earlier. it looks to me like severe form of subacute thyroiditis, perhaps made more severe by using iodine contrast for CT scan.


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