Severe hypothyroidism/ hashimotos

[Amethyst91]

So I know I’m annoying but trying to understand hypothyroidism after years of being hyper is just much different and just awful compared to the hyper. My Tsh was at 30.800 normal range cut off is 4 four weeks ago before any meds. Since my thyroid dropped I honest feel like walking corps. I don’t have the energy to move, speak write, get dressed, function, think , or pretty much anything. I can feel myself coming in and out of it all the time and I’m in 24/7 pain of some form. My drs just smile and tell me take this pill and I’ll be fine but I’m just not feeling fine. Hyperthyroidism took me to the urgent care a couple times because my heart rate was always crazy high but that was it. Hypothyroidism has me feeling like I’m just going collapse one day. I feel so close to just zoning out all the time. I get fatigue is a thing but holy shit I never knew I would barely have the strength and energy to function in anyway. I also smell smoke all the time and my mouth always feel like I burnt it drinking hot tea or something. Does anyone else experience these things? I’m so new to thins I just don’t know how to take it all in.

[Hidden]

You're not annoying. Asking questions is what this forum is for!

You have my every sympathy. It's really really sucky being Hypo and you're more hypo than I have every been so you must be feeling dreadful.

Recovery takes time. When you're in it you just want to feel better but it's a slow process and at this point it's a case of making your peace with how you feel now.

Are you taking levo? When is your next blood test?

[Amethyst91 in reply to Hidden]

Yes they started me on 75 and I took it for a week then bumped up to 88. I have repeat labs on Friday. I was kinda of hanging in there at first with treatment 3 weeks ago but I’m feeling even more dreadful now. I move so slow and feel like I have pain in my left arm and wrist along with muscle aches in my legs now and just generally feeling unwell. It’s all so frustrating as I started working my full time retail job again and I feel like I can hardly keep up but I guess the good thing is I’m still able to complete full 8 hr days. I just fear getting so bad I won’t be able to.

[Hidden in reply to Amethyst91]

It takes 6-8 weeks for each increase to take full effect in your system, which I know feels torturous. I felt great on 25mcg, worse on 50, but somewhat reasonable on 75. Don't lose heart! Restoring your health isn't a straight line but you'll get there.

You're aiming for a dose of around 1.6mcg for every kilo of body weight.

[Amethyst91 in reply to Hidden]

Thank you. It helps just hearing from others who have gone through it. I guess I worry about the levels being so high but my drs don’t seem too freaked out but then again idk if they would ever show that anyway. She told me upping the dose might cause some discomfort at first but did advise against trying it. I just wish I never let them talk me into it. I feel way closer to death being hypo than I ever felt being hyper and at least the hyper episodes only lasted a few hours. It seems like hypo is a life long never ending struggle. I thought a thyroid storm was scary but then I read that hypo can cause strokes or seizures and I’m freaked out by it.

[Amethyst91 in reply to Amethyst91]

I’d also like to ask, should I take my Levo the same day as my labs? I take my levo at 5:30am and my labs are at 1:45pm on Friday. I do not plan to have anything besides water until I finish my labs but I’m confused on how to do these since I never really took my meds for hyperthyroidism I’m not used to this.

[SlowDragon Administrator in reply to Amethyst91]

Bloods should be retested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Very important to regularly test vitamin D, folate, ferritin and B12

When hypothyroid we tend to have low stomach acid and this lowers vitamin levels

Many hypothyroid patients need to supplement to maintain optimal vitamin levels

[Hidden in reply to Amethyst91]

Your levels *will* come down but it probably won't be overnight.

I also recognise that feeling of finding out everything you can about your illness as quickly as you can but maybe just step back from Google for a couple of weeks. I personally think the process is a bit of a grieving process. Acknowledging that you've got a lifelong issue can take time. Be gentle with yourself and try not to look at the worst case scenarios. It's good to be fully educated on your condition so maybe revisit them in a few weeks (if you're still so inclined!).

[Amethyst91 in reply to Hidden]

Thanks I guess your right. My aunts are hypo and acted normally as I did while being hyper so when they said they’d prefer to bring me to a hypo state as the medication was supposed to be easier on my body I just never thought much if it. My aunts are in there 70s kicking ass working two jobs and seem to just have normal struggles of aging and even themselves said they never actually felt hypo. I never thought this is how I was going to end up feeling but then again I guess I also didn’t know and my drs didn’t know that I was actually a hashimotos suffer before doing the radiation. Thank you for the advice, I really hope I can at least stop the pain and get some energy back soon.

[Hidden in reply to Amethyst91]

This forum is amazing at empowering people to take control of their health.

Keep asking questions, keep reading, and keep the faith! You'll get there.

[Meanbeannyc in reply to Hidden]

This is a rough ball park. I’m 52kg on 112. Someone else I know is 60kg on 175.

[thyr01d]

I think, but am not sure, that the burning mouth feel goes with low iron or low ferritin (possibly both). Apparently unless ferritin is mid-range we can't convert T4 into the active T3. Might this be contributing to the way you feel?