Newbie to this

Hi there, I'm newly diagnosed with hypothyroidism kinda - I was put on levothyroxine last year by my gp after years of being borderline and didn't feel much better so my endo took me off it after 6 months as I didn't feel much better. So 6 months on from not being on meds my TSH was 10.9 so I'm now back on levothyroxine (my endo said he took me off it to test if I really needed it as my results before were less than 10!!). So I'm In Scotland and wondering how I can obtain amour as I honestly didnt feel better before on levothyroxine (when my levels were fine) and would like to explore other options. Thanks in advance

17 Replies

oldestnewest
  • did your endo up your dose every few weeks through the treatment?

    How long have you been on the meds this time?

  • Thank you for the replies. When I was first on it I started on 50mcg and then went up to 75mcg which I stayed on for a few months as my results were all fine (0.68 I think for my TSH) although I didn't feel much better. This time the Endo has put me straight onto 100mcg - when I asked why such a high dose he said because last time I didn't feel right even although 75 showed my bloods were all good. Does levothyroxone work for most people as the more I read it seems not and people prefer NDT?

    Thanks again

    Sarah

  • Most people do fine on Levo. A lot of those who don't are here :-) So we aren't representative of the national experience of thyroid treatment. Although we are a significant minority. :-(

    Unfortunately you'll need to give it several months, with raises every few months, before you know whether it's doing the biz for you, or not.

    It's a tedious time to go through, being a work in progress. And - as you've worked out - it may not be the best solution for you at the end of that. Try and cultivate patience: it just does take time. And if you feel rubbish, there's a recent thread about 'spoons' (yes, honestly) which is all about how to manage scarce energy resources.

  • Thank you - I'm only on my first week so will persevere and look for the spoons thread. I've started recording what I eat as I've gained 11lbs in 3weeks!! thanks again

  • Recording what you eat will be useful ammunition when you tell the doc about your weight gain and s/he says something crass like 'just go on a diet'. When you stop gaining weight will be a good indicator of when you're on enough hormone. Why doctors continue to ignore weight gain as a well known and documented symptom of thyroidism ... don't get me started!

    You need to be careful of dieting when hypothyroid and not well-medicated. Here is a link to information about the role of carbs with hypothyroidism: chriskresser.com/is-a-low-c...

    and there are some foods which hypothyroid peeps do well to avoid eating too much of - soy (can be a big no-no), raw or lightly cooked cruciferous veg, strawberries (boo hoo) and various other things one mightn't think would make the slightest difference! The lists vary a bit according to which site you hit. Here's one: naturalendocrinesolutions.c...

  • If they don't make the slightest difference, they don't make the slightest difference - if you see what l mean. Only avoid goitrgens if they have an adverse effect on you, not just because they're goitrgens. Most hypos are totally unaffected by the majority of goitrgens.

  • That's good to know, GG. I have been treating strawberries like a guilty pleasure since I found them on the list. And avocados are there too - another boo-hoo. I am, however, quite happy to have found a reason to refuse soy and kale when pressed to 'enjoy' them ;-)

  • Everybody has a reason to refuse soy! It's dreadful stuff and nobody should eat it if they want to stay healthy.

  • Here's a link to what Wikipedia says about the 'spoons' thing. I realised after I'd posted, that that isn't what the thread is headed, so you'd probably never find it.

    en.wikipedia.org/wiki/Spoon...

    Basically it is a visual aid for others as to how easily energy drains from someone with one of the 'invisible' illnesses, such as ours, ME, Lupus etc.

    And it's permission for us to pace ourselves and give ourselves the time we need to rest. I do much better now I'm not continually flogging myself to keep going. I schedule my week with care, not allowing two big 'out of the house' days on the trot, for example. But then, I'm lucky in that I work from home, so I can control my time more easily than most.

  • Thanks for the link I'll give it a read

  • It can take months for you to get the dose of levothyroxine right. Normally you start on a small dose, which often makes you feel worse after a couple of days of feeling much better. Every 6-8 weeks you should then have a blood test, which you should have done first thing in the morning after not taking your meds the day before, and your dose should be increased until your TSH is around 1 and your symptoms abate. Often when people start on thyroid hormone replacement their poor tired thyroid takes the opportunity to have a break, so the net result is that they feel no better. Persevere and I hope you feel much better soon

  • Thank you. Hoping since I've been started on a higher dose i may feel better soon although I do worry about it being too high a dose! I've started taking it at night which is good for me too as it stops me eating (picking) food from about 8. Any advice and information welcome.

    Thanks

    Sarah x

  • Thank you very much. Im new to this so no doubt will be back online with more questions and advice.

  • Sarah - have you checked that your ferritin, folate, B12 and Vit D are optimal? Just a thought, if these are not right, your ability to convert the T4 in levo to T3 will be impaired.

    Also, if you continue not to feel better, even on a gluten/dairy free diet, you may have the MTFHR gene (if that's right), and be unable to convert and need T3 directly, or NDT.

  • Misty dog I had a copy of my bloods but the registrar took when I was at my ends appt (by mistake). I will call tomorrow and ask for a copy of my blood results and post them on here once have. Thank you for responding - im currently trying to educate myself about the condition so I'm sure I'll be asking more questions.

  • You are very welcome.

  • Just called for a copy of my bloods which I will post when they arrive but here are the result from a few weeks ago that I wrote down - before I started on Levo - sure there was more tested but only wrote these down. TSH 10.4, free T4 9, Total T3 1.5 & Free T3 3.7. Not sure how some of these are with regards to normal range etc

You may also like...