Hi folks, I've recently started Levo after being stupidly stubborn for a few years post-Hashi's diagnosis hoping I could make lifestyle changes which would stop symptoms/progression (suprise surprise: it did not).
I see a lot of people talking about how they didn't feel really well until they ended up on T4/T3, T3, or NDT. Are there people here who returned to (or close to) full health just on Levo? I'd love to know, I don't want to go into this looking for it not to work for me!
P.S. this forum is amazing and if I hadn't found it I'd have spent years more in the dark and getting sicker!
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Rosannaclare
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Many people do well on levothyroxine, others do not. It seems sensible to start on levo and then consider other options if it doesn't work well. It might help if you get some up to date blood tests.
Yes, there are members here who do very well on Levo only. We have to bear in mind that most members here are those who are unwell for one reason or another, it could be that their doctor is ignorant of treating hypothyroidism and keep them undermedicated, their nutrient levels may not be optimal so thyroid hormone wont work as well. Generally those who are well on Levo wont be on a forum because they are busy leading and enjoying normal lives.
thanks SeasideSusie and fuchsia-pink , that's actually a really good point! I hadn't thought about the particular snapshot I'm seeing of members who're often not getting proper diagnosis/treatment. I'll give it time and be optimistic!
I'll also keep a good eye on my nutrients, I'm currently trying to get my iron up since my Ferritin is disappointingly low. I've gotten Vit D up, I'm taking selenium & zinc, anything else you'd recommend?
For Ferritin, if you haven't been tested for and diagnosed with iron deficiency or anaemia, then eat iron rich foods regularly such as liver, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
I was very happy for well over a decade just on levo
My understanding is that so are 80% + of hypos - it's just that this forum necessarily self-selects the "tricky cases" - who may not respond for any number of reasons, usually insufficient dose (often GP dosing just on the basis of TSH) - as SeasideSusie says.
Follow the tips on how to take levo and early morning blood testing and there's no reason to expect you won't be one of the happy majority x
In a strict sense, you will never quite regain your original health level when on thyroxine therapy and with no or very little thyroid left working. You can only perform as long as you do things that are not too strenuous and also long lasting in time. For example, if you did 20 mile fell walks when well, perhaps only 10 on therapy. It's always important to keep going and keep fit, but only to the limits you are comfortable with.
thanks diogenes , it's helpful to be realistic with expectations... I have to admit that fact does bring some grief, accepting that you can never go back to "normal", but that's part of the process I suppose (any improvement is a win). I was never doing 20 mile fell walks so at least that's a comfort!
P.S. you should know, your contributions to this field and therefore my own personal understanding of my condition (being able to advocate for my health/QoL) have made a huge difference to me (my husband has to patiently sit through a chat about every new paper you share!). So thank you
Hi Rosannaclare, I have a good friend who's thyroid basically doesn't work at all. She is on Levothyroxine, and completed an Ironman triathlon (2.4 mile swim, 112 mile bike ride and 26.2 mile run all in under 17 hours) at Ironman Wales last year. She was due to do another this year before Covid delayed it to 2021.
So, I wouldn't limit yourself to what you can do in advance. Just see how you get on, but be cautious. There is no doubt you have to change things, give yourself more time to rest etc. But with correctly focused effort and good nutrition you should be able to do what you want to do. Bear in mind, I'm no expert, I'm just going on how I have seen friends deal with and how I have dealt with thyroid problems myself in relation to endurance racing. I've done 9 Ironmans so far, and plan to do more in the future.
For me, Levo has helped a lot but not completely and my endo has told me I really need to try T3, which the people on this forum were wonderful in helping me to get hold of, from Andorra in the end. I should start that next week and I'm excited to see how I progress.
Good luck though, I hope you start feeling amazing soon!
thanks ironchica that's really wonderful to hear, and good motivation to give it time and patience. It's made me hopeful that with the right meds I can have something approaching an 'active lifestyle' again!
Good luck with your T3, I hope it works well for you (how great you have an endo actually suggesting it)!
Thanks for your kind words. Yes he is very good! Mind you, I was sitting in a room in Mallorca at the time, so maybe it prompted him. Still, fingers crossed it works!
Hi I’m wakeham I can’t say that you will get back to your old self but it helps.The problem is you might have waited too long for help! I was not diagnosed for a long time! and have now got a Rheumatoid arthritis as a complication from hash IMO !! All the best hope it works out for you.
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