My levothyroxine isn't helping me

Hello everyone. I have been diagnosed with under active thyroid 6 years ago. I was on 50mcg Levo for years, during Pregnancy it was upped to 75mcg. To be honest I have never felt any difference after taking it. I have recently put on 2 stones, I have no energy, I am feeling low and have other symptoms of underactive thyroid. I am going to my GP next week but I know they will be reluctant to even test my T3, free T4 and thyroid antibodies. They normally test TSH and it is always 'normal'. I will try to get my minerals and vitamins deficiency tested but have no hope. I am considering buying T3 from the health store but I doubt it is a genuine liothyronin. I would like to order some pills from abroad but don't know how much to take and where to order them from. Please advice.

9 Replies

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  • Welcome to the forum, VictoriaSimpson.

    Ask your GP receptionist for your thyroid results and ranges. Normal TSH range is very broad. 0.35 - 1.0 is good for most people but >1.0 may be under medicated. TSH only isn't very helpful. FT3 is rarely tested in primary care and if thyroid antibodies were previously positive they won't be retested. If your GP won't test FT4 you can order a private thyroid test. It is worth checking TSH, FT4, FT3, thyroid peroxidase, thyroglobulin antibodies, ferritin, vitamin D, B12 and folate. Medichecks have a special offer ending on Friday 24th.

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

    In the UK Liothyronine (T3) requires a prescription so T3 sold in a health store won't be thyroid hormone T3.

  • Thank you! I will ask my GP on monday what my last results were precisely and will ask for those tests you have mentioned before going private.

  • Your dose of 75mcg of levo seems very low to me if you've been diagnosed six years ago. It sounds as if your doctor could be another who is mistaken in how to treat patients with hypothyroidism, i.e. blood tests are o.k if we are being diagnosed but once on hormone replacement, our TSH should be around 1 or lower, not somewhere in the 'normal range' which refers to people who don't have hypo.

  • Hi

    It is actually 50mcg, I have only been on 75mcg for about 6 months. I have read a study somewhere that anyone s hypothyroidism should start from at least 100mcg to notice the difference. I have been moving a lot and have been seeing about 5 doctors with my condition and no one is interested to help because 'blood is fine'. I have been abroad (in my home country) last year, had an ultrasound done and some nodules have been found in my thyroid but GP isn't even interested because 'TSH is under control'. I don't know what needs to happen to me so I can get help or see endo :(

  • I would raise an issue with the word 'start'. We start low to get our body used to the Levo. It doesn't suit everyone though thatcis often the fillers you can get a reaction to so. Enter to find this out with a low dose as well and then change brands if you need to. It also takes 6 weeks for each dose to build up to its maximum so again we can't guess where I ideal dose will be so you should start at a low dose and work up by testing every 6 weeks if bloods say you are still undermedicated. The 100 may just be a guess of where your best dose lies but if it is a little high for you you could start to feel worse.

    50mcg is now the recognised starting dose and lower if you are elderly or have any heart issues. Increases should then be in 25 increments. I now that increases the time it will take to get to your best dose but you get more problems if you go passed it.

  • If anyone can private message me with some direction I will really appreciate it.

  • In general we very much prefer things to be discussed on forum than in private messages.

    If I make a simple typo, or an outrageously stupid suggestion, then others on the forum can question or correct that. In private messages they cannot be seen so no-one would notice.

    Use PMs for those things that really have to be private.

  • Thank you Helvella. I was hoping someone would direct me where to buy liothyronin safely.

    I went to doctor yesterday and she has ordered some tests. Not everything I wanted but it is a start. Will take over the week for the results to come back because of vitamin D test.

  • If you have not heard, write a new post asking exactly that! :-)

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