Anyone Taking Levoxyl?

[WyomingGal]

I was recently prescribed Levoxyl 50mcg for hypothyroidism and goiter. Anyone take this?

Thoughts?

I am a bit nervous to start it!

[Maiysa]

Hi WyomingGal,

I just wanted you to know that I do take Levoxyl. I was taking 125, but am down to 88. I had thyroid schmanser, (I don't like the c word) so I have to take it to keep my TSH levels at hyper level, to keep the thyroid from growing back after I had it removed. I'm telling you, I can't take any meds, not even pepto bismol, flonase, children's allery pills, or vitamins, but I did fine with the levoxyl. I gues your body naturally produces it, so it shouldn't be too hard on it. The only thing with thyroid medication and POTS, I used to have a case of it for a year or more, now I only have occasional orthostatic intolerance, but you don't want to get too hyperthyroid as it can mess with dysautonomia. It won't happen right away but gradually. I can tell when I'm taking too much thyroid medication, my heart gets a little racing and I get hyper. But now my endocronologist is trying to taper me down to a more normal thyroid level, he said it can worsen my autonomic neuropathy symptoms. Does your dysautonomia doc know about the thyroid meds? And vice versa, does your endo know about the POTS? I also notice if I wait the entire hour to eat after I take the medication I get too shaky, so my doc has me eating about a half hour after I take it. My body is very used to it now. But I did get a little shaky at first, but nothing too out of the normal. Just eat if that happens. I'm down to mostly just protein for breakfast since any sugar made it worse. Feel free to ask me about any thyroid issues-just learning about dysautonomia. I hope this helps.

[WyomingGal]

Maiysa,

Thank you so much for your reply! It really makes me feel much better. It also got me thinking-so thanks! After reading it I send my blood work from my endo (who knows I have POTS) to my neurologist. Also I saw that you were diagnosed at Mayo in Scottsdale-I went there in February to see Dr. Goodman. Did your POTS change after getting all your thyroid hormones back to normal?

The eating in the morning advice sounds good. I also asked my pharmacist and she said waiting 30 minutes should be enough if I need to eat right when I get up, which I usually do. The only problem is that I take midodrine an hour before getting out of bed in the morning. The pharmacist did say I can take Levoxyl and Midodrine in the morning together and wait about an hour to eat and it should be okay. I am checking all of these medication and vitamin questions with three different people, ha.

Kinda off topic, but schmanser made me thing of it...have you see the show The Big C with Laura Linney? It is funny, touching, and refreshing.

[Maiysa]

HI WyomingGal,

Oh, you went to see Dr. Goodman in Scottsdale. He's great isn't he.

Actually now that mention it about the POTS, my situation did get better. But I didn't have it as bad as some of the patients on this site did and it wasn't my main symptom. But my heart was so messy and all over the place with crazy sweating and then not sweating. I had fevers all the time. To say the least, I was sick. But I had a toxic thyroid which is possible that it was from the severe lung infection I had a few years prior. I was told it wasn't the thyroid schmanser that was making me sick, but the toxic thyroid lobe on the opposite side. Everytime my thyroid released, it was putting poison into my system. It was left untreated for 2 years or more. I am a thin girl and I lost about 17 pounds. Within hours of having my thyroid removed, I looked human again and gained all my weight back within a few months. My heart is much better, but I still have some days where it's messy, but not like it was and the not being able to stand up, got much better-but I still have the severe black outs occasionally. Unfortunately, I still get pretty sick on some days from the autonomic neuropathy. But I just felt better overall getting rid of the thyroid and my fevers have cut down alot!

We obviously have different situations, so I don't know if it's going to fix your POTS issue, but it would be nice if it did. I will keep you in my prayers for that. But I think you will probably have more energy with the medication since you are hypothyroid. Fixing hypothyroidism can also help you feel better mentally. Some people get a little depressed with hypo. So there will be some positives for sure, some I forgot to mention. I feel terrible that I can't give you more on this and wish I could tell you it will fix the POTS, but I'm not sure about that. Please keep me updated as to how you are feeling. I hope they told you it can take a few weeks to notice a difference. Did they ultrasound the goiter to make sure nothing bad is in there? Did you have to have a biopsy with this condition? So sorry you have this on top of everything else.

PS No I didn't see the Big C with Laura L. Does she call it schmanser? Schmanser sounds way less threatening and makes me feel better. haha.

[sue1234]

I tried Levoxyl a couple of times, and it does the same thing everytime--it worsens my episodes of low blood sugar! I have no clue why. I have tried it like 3 or 4 times over the last 5-6 years, and every time I would get awful hypoglycemia within a week of starting it.

Synthroid makes my stomach bloat worse. Unithroid is the only thing I can take that doesn't bloat me or make my hypoglycemia worse. It isn't perfect, but the lesser of all the evils.