Levothyroxine and still feeling yuk!

I've been taking levothyroxine for about three years drs say my bloods ok (normal). I'm getting fatter and fatter over 3 stone gained, I'm lethargic, tired, itchy dry skin, and worst of all permanently constipated which makes me feel horrible. Even when I do go to the loo I feel no relief. Reading everyone's posts makes me think I would like to try t3 tablets, I know the dr won't give me them cos my results are normal can anyone advise me? I will tell the dr I'm taking or thinking of taking but would like some advice please. I take 100mg levothyroxine. Thank you

24 Replies

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  • Hi Jane - it may be that you are still under-medicated, your symptoms do sound like that is the case. Doctors are notorious for thinking in-range means normal when it is not so. If you give us your latest test results with ranges - the numbers in brackets - we will be able to advise. If you don't have these then ask your doctors receptionist, you are entitled to these.

    Gillian x

  • Thanks Gillian I have appointment on Tuesday morning I'll get a copy then and also mention t3 - will let you know

    Jane x

  • Janeamber,

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

  • I'll do that now thank you x

  • Janeamber,

    Ask your GP receptionist for a printout of your recent thyroid results and ranges (the ranges are the figures in brackets after results). Normal is a very broad range. There may be scope to raise your 100mcg Levothyroxine dose to improve levels and symptoms if you are under medicated.

  • Yes will do that thanks clutter what are your thoughts on taking t3 medication x

  • Janeamber,

    I'm all for it if Levothyroxine isn't helping but you should check first whether or not you are optimally medicated on Levothyroxine and what your FT3 level is.

  • I'll ask for copy of my results but I don't think they screen t3 here in the U.K. But I will ask. Thank you x

  • Janeamber,

    Not many GP practices test FT3 unless TSH is suppressed <0.03. You can order private thyroid tests from Blue Horizon if your GP can't do FT3. Blue Horizon Thyroid Plus 6 or Thyroid Plus 11 which includes antibodies and vitamin are worth considering.

    thyroiduk.org.uk/tuk/testin...

  • Hello

    Maybe ask for a Assay interference test.

    I have had this done, it appears that the lab kit or something else unknown are interfering with my lab results.

    One out of four hospital lab tests are coming out "normal".

    Worth asking, my endo is now treating my symptoms and not solely going on the lab tests.

    I hope this information helps.

  • What's an assay test please? I ask because gps in the U.K. Are reluctant to take any extra tests I think it's down to money x

  • Hello

    I am uk based too. An assay interference test is a test to see if something is interfering with absorption, like our own proteins, something we are eating or other.

    In my case it was the 'other'. My endocrinologist says it could possibly be the kab kit itself!!

    This has given me the ability to challenge professionals when they say 'your blood labs are normal'!

    I am (according to the lab tests) within the optimum range, yet i feel dreadful.

    Off to see endo in a couple of weeks, I too am hoping for T3 to add to levo.

  • Great thanks I'll ask about that x

  • Good luck, don't let them fob you off!

  • I'll do my best !! Will report back on Tuesday thank you x

  • If you want the most accurate blood test results, it should be done at the very earliest and fasting (you can drink water). You should also allow 24 hours gap between your last dose of levo and the tesgt and take it afterwards. This keeps the TSH higher as it drops throughout the day and most doctors make their diagnosis on the TSH alone and adjust doses unnecessarily.

  • "normal" means zilch

    you need to insist on having copies of your actual blood tests

    all your symptoms scream hypothyroid and clearly your doctors useless

  • Thank you I think so too although in dr defence I don't think whoever controls the money let them order tests etc. But I'm certainly am going to ask about t3 and if I ever have enough money to spare will get bloods done privately then I have a starting point. Thanks for responding will keep in touch x

  • Hi Jane, this sounds quite like my situation. Feel like crap, taking levothyroxine but still getting loads of symptoms despite my bloods apparently being "normal" . Even when they come back abnormal I'm told that it's normal for me lol really can't win. I've tried everything I can think of and nothing worked. Steadily gaining more and more weight and having loads of symptoms. I've read loads about it and can't really afford the private tests. I'm in UK too and gp not really keen to test anything so I've decided to order b12, folate, d3 and iron and start myself on them. I was prescribed b12 and folate before from gp and I really noticed a difference but when my levels went back up in was taken off them . I've also ordered t3 to try too . Fingers crossed you get some answers xx

  • Are you taking t3 on your own i.e. Without gp input? I'm thinking of doing that but will tell gp cos have appt on Tuesday. I can't lose weight and it's really getting me down and not being able to 'go' makes me feel ten times worse and demotivated. If you do get t3 will you let me know how you get on and also where's the best place to get them. Just ordering online is a bit scary without help. I'll see what go says on Tuesday but I'm still tempted to try with or without his blessing!! Keep in touch, I'll post after my appt. what area of U.K. Do you live, I'm Lancashire x

  • Above all you need to become educated in what you may discuss with medics. So read up about the thyroid on this forum and others that may be mentioned here. Do not let anybody intimidate you as the chances are that any medically trained people you speak to know only what they have learned from "official" sources which do not necessarily reflect the best course of action for their patients.

  • Thanks Panda, trouble is, there is so much information it becomes overwhelming and I can't really take it in, I need an 'easy read guide' ! Am going to Dr tomorrow and will ask for a copy of my bloods then come back to this website and see if anyone can guide me as to what they mean.

    Thanks

    Jane

  • Excellent course of action, print them here, in a new thread, and you will get good advice from others. BUT DO NOT tell your doc that this is what you are about to do at this stage as you are likely for him/her to blow up on you which would probably be most upsetting for you.

    I cannot help you with blood test results as my problems have never revolved around them and I know nothing about Hashimoto disease, if that is what you have.

  • All I have been told is that I have low thyroid so I don't know if that's Hashimoto's. Thanks for the tip about not telling Doc what I'm doing at this stage, I won't ask him for a printout, I'll ask the receptionist!!

    Thank you

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