Self medicating

Hi iv been on levothyroxine for three years in that time iv gained three stones ,suffer hair loss and felt dreadfull,I changed doctors thinking I might get somewhere..while the doctor is lovely she blamed weight on birth controll so I came off it and got the mirena still no change..I was talking to a girl at slimming world who increased her own thyroxine so I decided to..I put it up to 150 and feel great,at some point I will need to go tell my gp but I'm scared to..anyone else done this??

9 Replies

  • Hi Audrey,

    Unfortunately a lot of people have to resort to increasing their dose and self medicating. What was your previous dose and do you have recent thyroid results with lab ref ranges?

  • I was on 100 mg and don't have any results as they won't give me them.they say I don't need them it's normal range..maybe it is on paper but I felt rubbish..

  • Hi. I was prescribed 150 mcg per day but I knew that it wasn't enough so I started taking 175mcg, and that wasn't enough, so then I went to 200mcg, I felt better but thought what the heck, I am now taking 225 mcg a day, I still don't feel 100% but as I will be 65 in October I suppose my age will also be slowing me up a bit, although I still work full time in quite a physical job. I told the doctor, he seemed a bit suprised but has given me a blood test form to check what is happening. I also have some white spots on toe nails so he is checking calcium levels. Our GPs are very good.

  • I put my meds up to 200mgs from 150mgs for two months over xmas and new year as I just felt I could not manage, I did feel better but no where near 'normal', had to to go back to 150mgs ran out of tablets and thought am bound to be found out if I keep asking for repeat script before time, how can you keep your dose up, doesn't anyone at GPs notice?

    I have had my meds increased now by a miserly 25mgs and still feel like cr*p :( off for a nap zzzzzzzzzzzzzzzz

  • I believe that you have a right to your results (certainly the diabetes community are quite militant on this point). So go to reception and ask for your last thyroid function test results, together with the reference ranges. If they won't give them to you, ask to see the Practice Manager. Only then can you determine at what levels you feel 'normal'. Some people do well when TSH is <1.0 and free T4 is in the middle to bottom of the range; I find I do best with TSH at >0.1 and fT4 at 19 (top of the range). A range is just that, a range. I start getting hypothyroid symptoms when my TSH goes over 1.0 and my fT4 goes below 17!

  • Yes I have been doing this also but scared to tell Dr. Was considering buying more online...!

  • If you feel much better, don't be afraid to tell your GP. When your next thyroid gland blood test is due, just don't take your medication until afterwards. If she goes only by the TSH Dr Toft of the BTA says:-

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. "

    He also goes on to say some need a lower or suppressed TSH or the addition of 10mcg of T3 to a reduced T4.

  • Hi iv just rang gp they gave me results but no tsh is t4 is 15.9...i cant get an appointment untill 27 th this is when ill tell my the couple of weeks ov increase my dose o feel much better..still not 100% and still can shift weight..5 weeks at slimming world an 3 off..

  • No but am thinking of doing so myself if after my next blood test my dose is not increased.

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