Concerning symptoms. Thyroid?

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I am a 43 y/o female diagnosed with hypothyroidism in 12/2017 after having symptoms of lightheadedness, dizziness, weight gain, fatigue, brain fog, greasy hair and skin, etc. My labs were TSH 4.57, T3 2.9, Free T4 1.0. I had a Thyroid US that showed a small nodule on the left side of my thyroid...too small to do anything about (don't remember size). Was told just to monitor and recheck in 6 months. I was placed on Levothyroxine 50mcg daily and retested blood work three months later. TSH was 2.35, T3 2.9, Free T4 1.1. My symptoms disappeared. Although, I didn't lose weight. I felt better and I was ALL too happy to be rid of the lightheadness and dizzy spells. Never retested ultrasound due to switching jobs.Currently, I am in between insurance plans due to switching jobs (AKA- without insurance right now). Insurance kicks in a month from now. Here's a run down: 

Two Months Ago- 

I started noticing a few things. When the whether changed and it got hotter outside, my energy dropped. It was difficult to be in the heat and it just felt life sucking to be in and out of it all day. My sleep went from good to terrible. I would wake up in the middle of the night and stare at the walls for hours before I could go back to sleep. I, also, noticed an increase in hair loss. My hair is fine and thin already, so ANY decrease in hair is noticeable. At first, I didn't think a lot of it. I think I just didn't stop to really take it into account. I went from emptying my hairbrush every 2-3 weeks to emptying it every week. Plus gobs of it coming out in the shower. The other symptom I noticed is an increase in appetite. I am so hungry all the time. I notice when I do eat or do any kind of exertion (singing,etc) my lightheadedness gets worse for a bit. I try and keep hydrated which seems to help. I haven't had any weightloss, gained only a few.   

One Month Ago- 

I began waking up in the mornings feeling "shaky" in my they are weak. It is difficult to go for short walks because my muscles feel like they get tired quicker or have less endurance. The lightheaded slightly dizzy feeling returned. Off and on throughout the day. At the time, attributed it to stopping my liquid multivitamins for a week while camping. Thought it would go away. Never did.

Two Nights Ago- 

I had a really strange thing happen. After enduring the shaky/weak feeling all day in my legs while at work, I finally sat down and put my feet up for a few minutes. All of a sudden, I felt this unexplained wave of anxiety come over me. For the record, I have never experienced anxiety in my life. I mean, sure...I've been anxious about things before in my 43 years of living, but this was way different. This was unprovoked and odd. It felt like my heart was racing, but it wasn't. It felt like my breathing was more fast paced. My legs and arms felt tingly and slightly numb. My neck and shoulders felt tight and "flushed". I just sat there, waiting for "it" to pass. I took my vitals...all normal. It seemed to let up a bit after about a half hour or longer. My shoulders and neck still felt tight and weak at the same time. I had a very difficult time sleeping last night. Tossed and turned all night. Same feeling of anxiety returned earlier tonight around the same time after work. Felt terrible all day. Muscle weakness/shakiness was generalized today. I stopped taking my Levothyroxine two days ago. I know it can take up to 4-6 weeks to get out of my system, but I'm hoping sooner...and I'm hoping the Levothyroxine is the culprit in all of this. This feels awful! Oddly enough, there may be one day a week (or a half day) where I feel pretty good and don't experience any of these symptoms or barely notice them. Do these symptoms sound similar to what anyone else has experienced? Has anyone's thyroid suddenly gone to "crazy status" after being on thyroid longer than three months (especially after having decent levels month 3 and not changing dosages)? Any words of sympathy, encouragement, etc, would be appreciated. I am going out of my mind thinking there's something far worse going on here. You know how it is. The mind starts running away with stories and conclusions. Thank you in advance for the responses.

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  • Posted

    Hi charcey97, sorry you are not feeling well. Was it ever determined what is causing your hypothyroidism? A common cause is autoimmune hypothyroidism (Hashimoto's thyroiditis). During the initial stage of this disorder, patients can alternate between phases of hypo and hyperthyroidism until eventually ending up permanently hypothyroid. 

    You will need monitoring of your thyroid hormone levels and maybe adjustments of your levothyroxine dose. 

    Btw, the thyroid output is not constant. It varies throughout the day (with a minimum TSH level around 3 pm and a maximum around 3 am). This may explain worsening of hyperthyroid symptoms during the night. 

    Regarding anxiety and this feeling of being on edge (as if one had too much coffee), this is typical for hyperthyroid patients. When I would get a burst of anxiety it helped me to breathe slowly and relax, (remembering that it is caused by biochemical changes in the body and there is no calamity unfolding).



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  • Posted

    Hi Charcey,

    Your symptoms sound very similar to mine, when I was diagnosed with Hashimoto's 20 years ago.  Hashi's sends out "mixed messages" so you can be hyper one minute and hypo the next.  You need to be tested for the antibodies, TPOAb (thyroid peroxidase) and TgAb (thyroglobulin.)  Most people with Hashi's will have an elevation of both or one of these antibodies, indicating an active immune system attack.

    Hashimoto's is more than just a thyroid problem.   The body becomes stuck in a chronic state of immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation and hypoglycaemia in addition to the "typical" hypothyroid symptoms you describe.

    These changes can lead to symptoms of anxiety, depression and chronic fatigue.  Sound familiar?

    My journey has been anything but straightforward as I did not understand why I continued to feel awful on 100 mg thyroxine.  The answer is not simply to take meds, you need to try to find out what triggers a flare up.  Not easy.  I found that eliminating gluten helped. And not taking kelp tablets....I was trying to stop my hair falling out but was inadvertently poisoning myself with the iodine.  The last thing I needed!

    I also found that I didn't do well on the synthetic levothyroxine doled out by the NHS here in the UK, and needed to mix it with the natural dessicated thyroid not normally offered on the NHS.  I now order this, without prescription, from abroad.

    I found 2 books very helpful.  Stop the Thyroid Madness and Hashimoto's Thyroiditis Root Cause by Izabella Wentz.

    But first, you need to ask for those antibody tests to find out if your problem IS Hashi's.

    Good luck.

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    • Posted

      Thank you for your response, Ruth! I will get tested ASAP. Can you tell me whether antibodies can change? I was tested a few years ago for different symptoms and told they were all within normal limits. Is it possible I could have an elevation now?
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  • Posted

    I think they possibly can change.  Mine were even more elevated than they are now when I was first diagnosed.

    Hope you get it sorted soon and get the answers you need.


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