# Could Levothyroxine make me feel worse? Has it helped or hindered you??



## Alyssa726 (Mar 10, 2017)

I have been on 25 mcg of levothyroxine for 3 1/2 weeks. I feel pretty bad, maybe even worse than before I started it. I don't know if it is because of the medication, but I feel like it may be, at least partially.

OK so here's what's up with me- let me know if this sounds familiar or any other thoughts or feelings you experts may have.


I've been "tired all the time" for years, but I used to push myself to do more things. I'd be exhausted, but still push myself to go to yoga, go out to dinner with friends, clean up the house, etc. The past few days, I have had to come right home after work and get into bed. I've been too tired to even make myself something to eat.
Yesterday I got this weird dizzy/headache/blurred vision attack. It last about 20 minutes, and I felt better when I took some deep breaths and had something to eat.
I have been having trouble getting to sleep and staying asleep.

Does this sound like something you have experienced with this medication? Thanks!


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## joplin1975 (Jul 21, 2011)

Getting used to Levi can be a challenge.

What do you lab results look like?


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## Alyssa726 (Mar 10, 2017)

joplin1975 said:


> What do you lab results look like?


I'll get re-tested next week after 4 weeks of levothyroxine. Do you think that is enough time or should i wait to be on it for 5 or 6 weeks? on the day i get tested, should i skip my morning dose?


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## joplin1975 (Jul 21, 2011)

Six weeks is better, but if you do feel awful you can push it to four weeks.

Skip your morning dose and take it after your labs.

If you have your pre-med labs, that would be great to see.


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## visc (Feb 22, 2014)

I felt crappy for 2 1/2 years with various symptoms, told I had anxiety etc. Finally diagnosed with Hashimotos (TSH 15); my doctor wanted me to start 112mcg. Being afraid of prescriptions, bad reaction to antidepressant I didn't need, I argued for 25mcg. For six months I felt crumby as the medication worked through my system. By six months time I was ready to increase to 50mcg, then 75 (3 months later), and finally 100mcg for 2 years now.

I believe early on in the disease process we feel ok, then when we get diagnosed we are drained of thyroid hormones we adequately need and we feel like crap. When I was taking my 25mcg and before I was diagnosed, I'd sleep right after college classes. I'd buy food, sleep and then wake up for a few hours, then sleep until the next day. School work rarely got done.

I did experience the weirder nervous system symptoms. I remember one episode similar to the vision problems / headaches before I was officially diagnosed with the disease. I told my mom for months, "Mom I've read about my symptoms and diseases, I'm 100% sure it's Hashimotos" Basically diagnosed my self before doctors caught it in a TSH test.

I agree with others, it does take time to get the hormone to work right in your body. Keep communicating with your doctor. Thats how they know what they are doing for you is working out. Ultimately they work for you, so if you think something is good for you bring it up and make yourself clear. Preventative care is important and those that say "oh blood test x was normal, you are fine" have no idea what you are experiencing. So don't listen to those people if you know something is wrong.

Do you ever experience vibrations or sleep issues? that was another symptom I got along with tingling and muscle twitches.

hugs


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## creepingdeath (Apr 6, 2014)

I took almost every brand of synthetic on the market for over two years.
It made my thyroid shrink and all the blood ranges within that magical place.
But it made me feel like I was dying. I could hardly walk and used a cane.
I'd be consistent and took it like a good patient but it would get to the point where I would have to stop.
Then I was just offered another brand which caused the same reaction.
I got fed up and found a doctor who let me try desiccated thyroid.
Within two weeks I started feeling alive again.
I obviously have a bad reaction or am allergic to synthetic hormone.
I was tested for allergies to the fillers and have none.
NDT isn't perfect and I still get minor symptoms.
If it wasn't for my PCP I would have taken my own Life by now.
I'd rather die than take synthetic thyroid hormone again.


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## Alyssa726 (Mar 10, 2017)

visc said:


> Do you ever experience vibrations or sleep issues? that was another symptom I got along with tingling and muscle twitches.


like tremors? no. but i am having very sore/tight/uncomfortable muscles and tendons in my legs. My IT bands have always been tight and angry, but it's excessive now, and my calves, too, are extremely tender. I know pregnant women inexplicably get a lot of charlie horses, so I assume it's hormonal and somehow related to all of this.

Re: sleep issues - when I posted a month ago I was having trouble getting to sleep and staying asleep. Then for a few weeks I was having more vivid dreams (nightmares!) and waking up in the middle of the night covered in sweat. Now I go right to sleep and sleep through the night. And don't want to get up. And I always want to sleep. Ha, can't catch a break.

I did 37.5 mcg for a week and just started 50. Maybe I should try NDT instead.   

Thanks for responding!


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## WhatHappened (Nov 12, 2015)

It takes time.... I need to update my signature, but I'm at 150mg Levo daily and 178lbs (a little more than recommended for full replacement) and still have my thyroid (or at 150mg of levo what looks like a thryoid but is probably a useless burnt out thing in my neck).

At my lowest, I had every symptom in the book.

Trembling, twitches, tics, seemed to be tied to magnesium and a couple of glasses of OJ helped get me through.

Aches, muscle aches, charlie horses, inability to open my fingers or curl my toes, bend my legs was tied to the disease AND elevated levels of creatine kinase (enzyme from damaged muscle like heart attacks or over working out). Which was tied directly to my thyroid levels. (few ever seem to mention that one here, and it should be checked).

This disease requires persistence and patience. Persistence to see it through, find what works for you and patience to let the meds build up sufficient concentration, patience to see if the current approach is starting to work, and then the persitence and patience to find a new doc if needed.

It ain't easy, when you are hypo, your patience and persistence ain't great. I remember being thrilled because every 6 weeks I knew my meds would go up and would start to feel even better after a few days as the levo did its thing and I couldn't wait for the next six weeks to go by (I was really bad and my doc, while pretty cool, was pretty conservative in upping my dosages, 25, 50, 100, 137, 150, etc. Made me wait a couple of months later on a couple of times to see if the blood work would change). Ugg. But anyway, it can and often does get better. You have to keep track of your health and keep your doctor on track and don't be afraid to switch doctors if needed.


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## Lovlkn (Dec 20, 2009)

"This disease requires persistence and patience. Persistence to see it through, find what works for you and patience to let the meds build up sufficient concentration, patience to see if the current approach is starting to work, and then the persitence and patience to find a new doc if needed."

Well said and TRUTH

Slow and steady wins this race. Patience is difficult when you do not feel well, but sticking to a medication and dosage for 6 weeks before changing is the only way. Keep a log of doses , lab results and how you feel. Eventually a pattern will develop.

I've seen too many people change doses too fast or jump around from levothyroxine to NDT before giving it enough time to see if a dose adjustment fixes the current issue they are experiencing.

Hang in there- patience and persistence will help you find your way through thyroid issues.


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## Nelly (Jun 2, 2017)

This is interesting to read as I was diagnosed 2 weeks ago, having loads of symptoms and I know they said 3/4 weeks to start to see a difference but I feel worse now than I did. More achy, painful body, and so exhausted. I hope you are feeling better now that you are a few more weeks along


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## Lovlkn (Dec 20, 2009)

Nelly said:


> This is interesting to read as I was diagnosed 2 weeks ago, having loads of symptoms and I know they said 3/4 weeks to start to see a difference but I feel worse now than I did. More achy, painful body, and so exhausted. I hope you are feeling better now that you are a few more weeks along


Often a body will feel that way as thyroid hormones are moving - up or down.


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