Advice on starts meds: Hi all. I need some... - Thyroid UK

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Advice on starts meds

Teac profile image
Teac
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Hi all. I need some advice. Recently I began taking Tirosint 50mcg. But for the life of me, I just couldn't get used to it. In the first few weeks, I would have bouts of anxiousness, jitteryness, sweating, and times where I just couldn't catch my breath. My doctor said everything was fine to continue. So, I did but I continued to have these symptoms just more severe. It got to the point that I could hardly sleep, couldn't rest, real jitteryness, anxiety, and the worst symptom of all was this "air hunger." My lungs were fine and I could take a deep breath, but I just couldn't get enough air in my lungs. It got so severe I finally had to quit in week 9. My doctor told me that the meds couldn't be causing the symptoms but I just couldn't take the meds anymore. I couldn't think straight and couldn't function in my job. I honestly thought I was going to have a heart attack or something...it was bad. So, my question is.....is it possible to be over-medicated even though my TSH didn't show that or could this be a horrible side effect to the medicine? I asked if I could try 25 mcg and my doctor refused saying I should be on even more than 50. Now, I'm at a loss as to what I should do. Thank you for any advice.

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Teac
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greygoose profile image
greygoose

These sound more like hypo symptoms than hyper symptoms or side-effects of levo. And, there are two possible causes for this:

a) it's well-known that when starting levo, new symptoms can appear, and old ones can be exacerbated.

b) what's not so well-known - especially not by doctors - is that thyroid hormone replacement (levo) doesn't 'top-up' our level of thyroid hormone made by our failing thyroids. It replaces it. What happens is, taking levo reduces TSH. As the TSH - Thyroid Stimulating Hormone - drops, the thyroid makes lesss and less hormone. It cannot make hormone without the stimulous of the TSH. So, imagine your thyroid was making 60 mcg of T4 a day, plus a little bit of T3, and you start taking 50 mcg, with no T3, your thyroid stops making hormone, so you find yourself with less hormone in your system than you had when you started.

How long were you taking the Tirosint? You should be retested after 6 weeks, and your dose increased by 25 mcg. And, gradually, these new symptoms, along with the old ones, should disappear. It's a huge problem if we're left on a starter dose - 50 mcg - for too long.

Teac profile image
Teac in reply to greygoose

HI! Wow, great way to think about it. That never occurred to me. I was on the dose for 9 weeks and my doctor didn't want to change anything until I saw her in about 6 more weeks. But honestly the symptoms were so severe, that i just had to quit altogether. I've never experienced such distressing symptoms and I was scared I would need to be hospitalized. The inability to get a deep breath is very disconcerting on top of the fact that I just couldn't sleep. Nothing....I would wake up exhausted and then try and take a nap later in the day, but I just couldn't rest....I felt so revvved up. My lungs were even sore from trying to get in enough oxygen. My resting heart rate was higher than normal, and I felt so warm. I just couldn't continue the meds when I have to function in my daily life. I can't lie down all day. And what's worse is that for now, I feel so much better OFF the meds. I've only been off them for 6 days now, but I already feel many times better.

greygoose profile image
greygoose in reply to Teac

Yes, of course you feel better off them. Anybody that stops levo, T3, NDT for a while feels better than ever. And we don't know why that happens. But it doesn't last. Little by little the hypo symptoms come creeping back in. So, that doesn't mean anything.

All the symptoms you mention are hypo symptoms. When you see your doctor in 6 weeks time - typical GP! - they have no idea how to treat hypothyroidism. She was leaving you on a starter dose for far too long. So, when you see her again, tell her you want to try starting on 75 mcg. 50 mcg is the usual cautious starting dose, but it doesn't suit everyone. Some people do very well starting on 100 mcg. We're all different. But, it's very, very important to get that retest after six weeks for the next increase. :)

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