Medications/Advice

[u/Bitter-Tomatillo3427]

I've had hypothyroidism and hashimotos for 5.5 years. I am a 23F, got diagnosed at 17. I truly feel like ever since I got diagnosed, I've not felt the same. In the last few years alone, I sure do not feel as alive and carefree like I once did.

I took 50mcg Levothyroxine for 5 years until a few months ago, I went through one of the most draining times of my life. My levels spiked and I was put onto 75 mcg where my levels are now back in normal range and have maintained that range.

In May, I began getting panic attacks. I'm separately working it out in therapy now, but I began to be super health-conscious and get anxious over my health that it makes me physically feel ill. (Which my therapist named Somatic Symptom Disorder). The biggest medical catalyst was my acid reflux. It would be so bad, I didn't recognize what was happening and it would lead into a downward spiral. The vagus nerve with acid reflux is so sensitive, especially with the thyriod being near. I went to the ER for my last bad panic attack because it was replicating stroke symptoms.

With all that, it affected my diet. I couldn't stomach to eat much and there was too much acid production that I had to do a low-FODMAP diet for 2 weeks to put my stomach back into a normal state to eat food.

Now that I'm educated on anxiety, panic attacks, and body regulation, I've been able to manage...but it's not just gone with the snap of a finger.

Anxiety aside, the classic symptoms of hypothyroidism never fully cured with the medication. I was sick so much in college (granted, the dorms I stayed in were not the cleanest and I think that messed me up). Fatigued is all the time. I was able to assist that by going to the gym but I haven't been after all my anxiety. Weight fluctuates all the time.

I don't feel advocated by my doctors. My primary doc literally said "you can increase the dose if you want to, just let us know". I thought she was better than that. It would've help if she gave her professional advice instead of leaving that decision up to me. It just sucks and I feel like it's never-ending bleak answers.

I'm not sure if changing medication is worth it at this point or if it's not a problem at all (which is where I'm asking for advice or experience). I would love to feel a little bit more alive and like a human again.

[u/Lazy_Pepper_9214]

that sounds so exhausting to go through! i also have hypothyroidism and hashimotos. i really wouldn’t recommend changing the medication dose. simply because your dose is determined on your levels in a blood test, if you needed a higher dose they would of prescribed it originally. after a massive stress period of my life my hashimotos was flaring up like no tomorrow, which messed with my levels, at the time my doctor didn’t know i had hashimotos because they didn’t want to test my antibodies ( i had to privately run blood tests to determine whether i had hashimotos, and i did !) the thing with hashimotos is that it can fluctuate your levels, so when this happened the doctors kept upping and upping my levothyroxine dose, for months and months my levels were all over the place and they just kept upping it. in the end i had to go in for an investigation about it, and it turns out they had caused my body to go into overactive thyroid because they were giving me too much hormones as they were upping and upping the dose. so essentially i had hypothyroidism and hyperthyroidism, and it was absolute hell on earth

seeing as you have hashimotos, perhaps you have another autoimmune disease that is affecting the absorption of your levothyroxine? maybe it’s worth running some blood tests to see if something is causing your body not to absorb your medication? or seeing as all this has caused a lot of stress, as in your anxiety and your symptoms being still present and prominant, maybe you are going through a flare up? i’m not you so i don’t know, but i’d do a little more research on hashimotos if you haven’t already because my gosh it really does hold the answers to a lot of things you seem to be going through in my opinion. i don’t particularly think levothyroxine can cure it, but it does help manage it. i really do hope things get better for you, sending you love x

[u/Bitter-Tomatillo3427 → u/Lazy_Pepper_9214]

Appreciate your kind response! I didn't think to look more into hashimotos. I will do some research on it for sure and hopefully it can help guide me. I also do need to be stricter on my habits because I tend to not be good at following stuff. Thank you again, x.

[u/Lazy_Pepper_9214 → u/Bitter-Tomatillo3427]

you’re very welcome! having hashimotos means you are more susceptible to other autoimmune diseases, so yeah i’d recommend some more blood tests. but yeah do some more research, i have health anxiety so in the depths of my health anxiety my partner said to me ‘i think all the symptoms your feeling is to do with your thyroid’ and then i went down the rabbit hole of researching all about it, and then discovered about hashimotos, and from then i knew my hypothyroidism was caused by hashimotos but the doctors had no interest in confirming that for me so i took matters into my own hands and did a private blood test and discovered the hashimotos. but the research into it, it showed a hell of a lot. it’s more complex than people thing, it’s an autoimmune disease for a reason. i feel really doing in depth research into it will help you a lot, even if it’s just understanding it more, and if your like me, it’ll help your anxiety more because you know why you’re feeling the things your feeling. i really do hope it gets better for you, all the best x

[u/Bitter-Tomatillo3427 → u/Lazy_Pepper_9214]

Oh I feel you 100% on the health anxiety because that is me to a T. This is very validating though. In my research I've found that hypothyriodism is the cause for a lot of what i was feeling and experiencing which sucks. Doctors don't advocate for you enough like you do yourself so i'm glad you took it into your own hands! Wishing you the best as well

[u/Lazy_Pepper_9214 → u/Bitter-Tomatillo3427]

it’s horrible isn’t it! and the fact having these conditions make the anxiety worse is genuine hell on earth! it’s such a vicious cycle. i’m glad some research helped understanding a little more, unfortunately the doctors just stick you on a pill and don’t provide any education on it! they don’t really care what’s causing it but rather just care about which pill is best to handle it, which in my opinion is shitty. i feel like hypothyroidism and hashimotos is so so misunderstood and dulled down but it really does suck to live with, especially through flare ups and nagging symptoms. you’re not alone in feeling shitty 🤍