Levothyroxine Success Stories Please Post Here

It's the way of forums that it often happens that people post when things aren't going well then disappear when things improve.

I have been on the hypothyroid road since the 80's and some of the time on levothyroxine.

I have made attempts at life-style changes over the years and did my stint of life without levothyroxine due to the hormone treatment messing with an underlying heart problem,

Things have settled down nicely....gluten free has helped as has selenium and learning as I go along

11 Replies

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  • What a good idea GosportNancy. I am always careful not to blame levothyroxine for palpitations as has them before I knew I had thyroid problem blaming it on too much coffee. Overall I feel ok on it. Don't sleep well but don't drink enough water during day so wake up during night for a drink of water. Hair great. Overweight but blame that on not moving about too much and cakes at tea time few years ago Going to join a gym and see if can shift weight. So doing ok on 100mcg Levo. About to get Blue Horizon test soon as well as a useless NHS TSH test just to see what comes up.

  • It may be hard to find the success stories on here, as people come on here due to problems, especially when on T4-only treatment.

    However, I first came on here with minor problems for many years, on T4 only, and growing problems as GPs starting harrassing me about my high level of FT4. As I felt obliged to try a lower dose, my minor problems became major ones, and I had to reduce my activity level to one I could manage. My blood tests stayed the same, so they harrassed me further. Doctors all ignored my low, or below reference range FT3. I insisted on a return to my normal dose as the "trial" of the lower dose was making me ill.

    The good news is, that having studied everything I can find online about thyroid treatment, and having learned loads from this website, I finally bought T3 online without a prescription. It took a lot of courage to start taking it, but it has got rid of the symptoms I had suffered from for about 15 years. I am now healthier than I have been since before starting thyroid medication (following thyroidectomy).

    My FT4 result is now always only mid-range, instead of being above the top of the range, and my FT4 is a little higher. All this is despite taking the same dose of T4 that I took for 15 or 16 years. It shows that my T4 is now being used more efficiently ie better converted as well as used once converted.

    My endocrinologist is now asking permission for T3 to be prescribed by the NHS for me. He's not optimistic that they'll say yes, and neither am I, but at least he has learned from all of this. At the outset, he said he wasn't interested in my FT3 levels, but now he can see the difference that T3 has made.

  • I think I may need that t3 as levo isn't stopping symtoms for me. Is it exspesive, what site is safe to order from and did you stop taking prescribed meds the same day you started the t3

  • It is expensive on prescription (which I believe partly explains why doctors avoid prescribing it), but in countries like Greece it is very cheap.

    However, before you even think about taking T3, you need to check all the other measures (vitamins, iron etc - other people know more than I do about which to check).

    Then, most importantly, you need to know your level of FT3. Taking T3 is perfectly safe (and necessary) when your level is too low, but if you don't need it, then it is dangerous.

    Find out what you need to check first, and get the blood tests done. Then people on this site can share their views on what to do next.

  • I'll ask for my f3 to be checked, thanks.

  • I was diagnosed in April 2014 with a TSH of 240 and levo has been a wonder drug for me, restoring me to health and vitality. I had a gradual increase in dose up to 125mcg and have stayed at that in spite of the endo's efforts to get me to reduce it - thankfully my GP has more sense as the last time I was on 100mcg in Sept 2014 my symptoms were enough to put me in hospital even though my TSH was still (just) in range.

    That's not the whole story though - I am gluten and dairy free and eat as much organic food as I can. I have a big problem with vitamin D which falls dramatically unless regularly supplemented, and also get other vitamins and minerals regularly checked and supplemented.

    I am well and more or less symptom-free - last week I climbed two 2000m alpine peaks in 3 days, and cycled 30km on the in-between day without feeling tired. I'm so grateful for my life back :)

  • Wow!...that is such a great story. I am improving on a daily basis through making lots of little life changes along the way. My health crisis earlier this year (multiple organ failure, cardiac arrest and several days in a coma) focussed my mind somewhat. I now take a good quality vitamin and mineral supplement daily along with Co-enzyme Q10, probiotics and 100mcg Levothyroxine.

    I get outside in the sunshine when the sun isn't hiding and do balance and muscle strengthening and toning every day.

  • Hi Rusty Mary, i hope you don't mind me asking. Once you became optimally medicated at 125mcg, how long did it take to feel well again or for most symptoms to disappear? Thank you

  • Of course I don't mind. I started taking 125mcg in September 2014 and then started looking at nutrition. My vit D was really low so that was supplemented. I went gluten-free in October, and dairy-free in Jan 2015, and by April 2015, a year post-diagnosis and 6 months after optimal medication I felt fantastic. But I was feeling a lot better by Dec after going GF, so it's hard to say exactly when.

    I want to make the point that although levo has been a wonder-drug for me, it has been very strongly supported by the dietary things - I'm not sure how I would be if I'd carried on eating wheat, milk etc.

  • Thank you for quick reply. I am gluten and dairy free also. My antibodies came down a bit after going gluten and dairy free but symptoms so far the same but hopefully they will get better in the coming months!

  • I hope so too for you. It's difficult enough being gluten and dairy free without it not showing any benefits! I would say you need at least 3 months to be sure of a difference (or not). I do see a private nutritionist which is really worth it - doctors tend not to know much about nutrition. Check that you've got all your vits and minerals at optimum levels.

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