Blood test results - help!

[dylansmum]

I reluctantly had to have a blood test this week, TSH only! that's all you get at my GP's! I am reluctant because, over the years whenever I have a blood test, I get a call, and they reduce, my Levothyroxine. I had to see the practice nurse this week for a hearing problem, and it flagged up on my records that a blood test was long overdue! For the past year I have had to argue that I feel ok on 125mgs Levothyroxine.

Guess what! Today I got a call from the pharmacy at my GP's telling me they are reducing my Levo from 125mg to 100mg. My blood test result TSH is 0.02, can anyone tell me if that needs a reduction in Levo? I have been feeling ok, still can't loose any weight, achy joints, I am a bit anxious that they (the nurse's decision) have reduced my Levo. XX

[Hidden]

Hi,don't know that this is any help but just to say- I had test recently like you at gp's only TSH done.result was TSH of 0.01. For my own info I then had a private test done,since it was muted that dose should be reduced( only on 62.5 mcg).I felt great so was reluctant to reduce but the private test was 0.01 TSH ft4 28 over range and t3 was 8.6 I believe from memory and top of range was 6.5. SOooo. I reduced from 62.5 to 50mcg,quite a small drop of just 12.5 mcg and next test 3 months later showed TSH gone up to 4.9. Both t4 and t3 middle of range then and not feeling unwell but just not quite as good as i was.So now hedging bets and going for 62.5 very other day! Seemed quite a difference in my case for such a small change in dose. Hope you get to a good place with your dose soon.

[sorrel89]

Just a quick question did you take the levo in the morning before your blood test?

[puncturedbicycle]

I think you can refuse to reduce the dose, at least unless they can do you a t3 test to see if your t3 is elevated (esp since as you say you're okay but not 100% with the joints and weight). Of course you may prefer to comply and reduce the dose to see how you feel but as cupi found you can see your tsh rise pretty dramatically seemingly out of proportion to the small reduction. You may want to try reducing gradually over time too, as it can make you feel a bit rubbish to do the reduction all at once depending on how sensitive you are.

How would you feel telling them that you will comply for a specific period of time but if you start to feel unwell or at the end of the specified period you have your test and your tsh is up you expect to resume your normal dose - ?

[roslin]

Decisions about YOUR health is supposed to be taken in collaboration with you and your Dr. He certainly can't just decide to reduce without discussing it with you. You have to stand your ground and tell them that a low TSH is not a problem as long as T3 is in range. And as long as T3 and T4 hasnt been measured there is no way they can say that you are overmedicated. This has been documented in a interview by Dr Toft in a Pulse magazine article, which is a GP magazine. I cant put my hands on that article at the moment but I am sure sombody here will send it to you.

Roslin

[dylansmum in reply to roslin]

Thanks roslin x

[dylansmum]

Hi Sorrel89, thank you for your reply. No I didn't take my Levo until after the blood test!

I have hashimotos and saw a endo 18 months ago, he told me to carry on with 125mgs levo, then depending of how I am feeling, drop the 25mgs for a day or so if I feel I can. I am a bit upset that a practice nurse can stop your drugs without even speaking to you, or asking how you feel about it x

[sorrel89]

Ok, I would start by emailing your practice. Request for confirmation on what evidence are they lowering your Levo ....just TSH? If this is the case it is appalling. A practice nurse should not be lowering your meds and they should be put right. Good Luck

[silverfox7]

I've usually said yes I take your point about reducing but I've tried it before and it showed I can't manage without but I will just cut it down very gradually and see if that helps or not and of course I shall let you know how I am feeling. You never know dropping a very little on one day a week may help if you are very sensitive. Plus each dose change should be left for 6 weeks before you get some idea how you are responding and/or need another blood test. This way you are playing for time, your GP thinks he has you onside and you never know you might feel better! If you feel worse after such a small reduction then that suggests you shouldn't drop at all and you can share that with him.