Why is my body hooked on only 200mcg thyroxine?!

I had my sub-total thyroidectomy surgery back in 2009 and was started off on 25 mcg thyroxine and gradually increased until I felt normal and fine on 200mcg.

And ever since I have been happy on that dose. I feel perfectly fine and normal on it. However, when my lab results indicate a high t3 & t4 & low tsh, and the doctor reduces the dose in any way, I immediately start feeling horrible hypo symptoms: weakness, slow and sluggish movements, hoarse voice, tingling eye sensations.

Its unbearable. And when the dose is returned to 200 mcg, I feel back to normal and happy, even though my lab results show elevated t3 & t4.

How can I get my dose reduced? What could be an ideal dose that would make me feel normal and still have my lab results also normal?

9 Replies

oldestnewest
  • Other than satisfying your doctor, why on earth would you want to get your dose reduced?

    I could make all sorts of suggestions - but at the end of the day, if 200 micrograms is what you need, so be it.

    What are your lab results that are making your doctor want to reduce your dose?

    Do you make sure you do not take your levothyroxine in the hours before your blood is drawn for a test?

  • Before the Holy Miracle of the Infallible TSH Test

    we were treated according to how we felt. You are simply living proof that this sh*tty test has as much use as a bicycle to a fish in some cases.

    Who is suggesting that you should reduce your dose and that you are 'hooked' on 200mcg ? Do you have your latest bloods ? Does your GP want this to happen ? S/he is a dangerous tool and is merely showing ignorance. Change your GP. Thyroid conditions need to be dealt with by medics on a consultative basis and yours simply doesn't hold to this view. The authoritative sadist... just my opinion, of course. And I'm a user of thyroid hormones, so clearly I'm 'hooked' too :X

  • I love this video!

  • It's got nothing to do with being hooked. Levo isn't a drug. That's just the dose you need, and no intelligent, knowledgeable doctor would try and change that dose, merely because of a blood test. Blood tests are just guides. How you feel is much more important. Stick to the dose you feel good on, it's your body, not your doctor's.

  • I wonder if your doctor tells type 1 diabetics that they are hooked on insulin?

  • We are all different and results and doses can vary but itsxall about finding what is right for you. Doctors also aren't always experts at reading and understanding results. Have you had your Vit D, B12, folate and ferritin tested as these all help the thyroid but may be are too low in their ranges to make much of an impact. Doctors often think if you are in range then that's good but it's often where in the range that happens. Getting these optimal may well get rid of some of your symptoms and may make it possible to lower your meds as I supper the amount youbare taking may be worrying your GP rather than the actually results so if you can post any ressulrs and ranges of any other tests and tell us of any lingering symptoms that could help with any side effects etc.

  • When you say high FT3 and high FT4, what do you mean? Over-range? (It doesn't matter if TSH is suppressed).

  • Do you have autoimmune hypothyroidism (Hashimoto's disease)? If so, you may need a suppressed TSH in order to feel well, as that tends to lower your antibody levels. That is the only thing that worked for me when I was on thyroxine only (now on NDT). My doctor at the time wanted my TSH between 0.05-0.1 in order to calm the antibody activity down (that means a suppressed TSH as the lab ref ranges are 0.2-4.0). I needed 200 mcg of T4 in order to achieve that.

    If your FT3 levels are proportionately higher than your FT4 levels, I guess it could mean you are effectively converting the inactive storage hormone T4 to the active hormone T3...my FTs looked the other way around on thyroxine only (high FT4 levels, low FT3 levels), which is why my hormone doctor concluded I was not a good converter and therefore would do better on NDT. If you are a good converter, you should be happy about it, as it is so much easier taking thyroxine only compared to NDT or even synthetic T3...NDT and synthetic T3 are more difficult to get, more expensive, you often have to import them illegally, not to mention the problems you run into with doctors who fail to understand that T4 drugs only may not be enough for you...I honestly wish I had achieved the same results as you have on thyroxine only!

  • I would ask the question a few others have asked - are your freeT4 and freeT3 actually over the range, and have you seen the figures with your own eyes? Or is the doctor just getting squeamish because they're high-ish?

    Even if that is true, there is actually an awful lot of individual differences in what levels are right. Just like some people are extraordibrily tall, some people are unusual enough to be comfortable outside the usual reference range. Symptoms are far more important than the blood numbers.

    It sounds like you've been on the roundabout several times, and know really clearly what the results will be, so it's fine to just stick to your guns. It's your right to refuse to have a dose changed, but also some members here refuse to even take the blood test so the doctor has no ammunition.

You may also like...