gp agreed to increase dose of thyroxine

I've been feeling increasingly tired and other symptoms especially crying a lot after being initially not too bad when my thyroxine was increased to 75 mcg back in the spring. I did a Blue horizon test in August which came back at about 2 for TSH which I feel is too high whilst being treated but I knew my GP would have said it was fine so I had another with the GP and cut my levo down for 10 days before going and success my TSH was 5.03 (range 0.3 to 5.5) which is near enough to the top of the range to get a prescription for 100. Now I will increase by 12.5 for four weeks and then up to 100 to give my body time to adjust and retest just before Christmas. Hopefully this will help but it is crazy that on treatment and with a TSH of 5.03 and FT4 of 12 (near the bottom of the range) I feel the doctor is really reluctant to increase my dose and I felt I have to try and "trick" the test to get the increase I feel I need.

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  • thats a brill idea - i wish i thought of that! im alternating between 100 and 50 at the minute because my dr wont increase my dosage on 50, the tests show 2.96 which is a drop from 5.8 at the end of july. but because it now within range they wont increase it anymore, so im self dosing, and i feel better now for it.

  • i just hope they dont cotton on to me running out of pills earlier lol

  • You can buy your own T4 on-line, you know. :)

  • There is something in the NICE guidelines in the UK which says that if your TSH in the upper part of the range and you still have symptoms then it is "reasonable" to try an increase in dose and that is how I got the first dose increase to 75 from 50 as my TSH was 3.98 (range up to 4.4). They are using a new lab and the score of 5.03 was "in range" and so normal but as it is so near the top of the range (up to 5.5) I negotiated an increase in dose. She keeps a very close eye on my prescriptions and I daren't just increase my dose as I will then always be too low on the TSH to get some from her. I wish my GP had read and taken on board the guidance (in every book I get) that says the aim of treatment is to have a TSH of near to 1 and a FT4 in the top part of the range as then I would not have to make myself ill before the tests! I once got near to 1 and felt hugely better!

  • The NICE guidelines are just inherited Clinical Knowledge Summaries. That is, they were not produced with the full rigour of formal NICE guidelines.

    Maybe they can be used to your advantage but they don't have the full authority of other NICE guidelines.

  • Did you find you lost weight with a range of 1

  • Weight is not one of my symptoms. I lost a bit of weight when I first got ill over 2 years ago and changed my diet to cope and just carried on losing until I had gone almost the whole way down through from overweight (80 kg) to almost underweight (60 kg) . Thankfully I have now stopped losing weight but am still 15 kg lighter than when I started really being sick (and I'm still sticking to the diet!)

  • Sad but true. Last time I felt so ill and was worried they'd mess w my meds so I didn't take them for two days. Even only two days meant my tsh was over 5 so I'm clear I needed an increase. But I hate to do it. My current gp is nice and not bad on thyroid stuff, but I fear she'll eventually be compelled to mess w my t3 and I'm not having it.

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