On 50mcg thyroxine but still not feeling great after a year

I am a 26 year old female and in December 2013 I was diagnosed with a thyroid cyst. My thyroid results were all in the normal range. I had a hemi-thyroidectomy in February 2014. After looking at the cyst it ended up being a para-thyroid cyst. 1 month after the op my thyroid results were in normal range. 3 months after, I felt awful, taking naps in the middle of the day etc. TSH was 6.0. Dr wasn't going to do anything and tested for other things, but in the end I was put on 50mcg of thyroxine. I felt worse and then better after a few months so thought nothing of it.

Now I am feeling ok, but still tired and achey. The normal sort of symptoms. It's not as bad as it was but I am wondering if this is normal or if I should feel like I can run a marathon. My latest results were TSH 2.76. That's the only result the Dr would give me. Should I go back and ask for more tests? I have read that TSH should be less than 2. Should I ask for my dosage to be increased. Are there any risk factors to increasing the dosage?

Any advice would be great. Thank you in advance to your replies.

3 Replies

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  • I think you would do best to change your doctor. Many don't understand metabolism or treating a failing thyroid gland.

    50mcg is a starting dose and should have been increased after 6 weeks by 25mcg and so on until you feel well She may not have thought your original TSH of 6 was high enough to diagnose you but it is. The British Thyroid Association state that we should be treated until TSH is 10 but that is quite inhumane for people who have clear symptoms or operations like you have had.

    Make an appointment, the earliest possible for a new thyroid hormone blood test, ask for a Full Thyroid Function Test, especially since you have ops. That should be TSH, T4, T3, Free T4 and Free T3. Vitamin B12, Vitamin D, iron, ferritin and folate. Tell her it's your New Year Resolution to get better. We are usually low in vits/minerals as well.

    When you are having a blood test for your thyroid hormones, leave 24 hours between taking levo and the test. Have it as early as possible and take meds after.

    Email louise.warvill@thyroiduk.org and ask for a copy of Dr Tofts (British Thyroid Association) Pulse Online article and discuss with your GP the request for more levothyroxine to bring your TSH to the level Dr T suggests, also the additon of some T3. Ignore his last para which is typical, I believe.

  • Hi Bright, listen to Shaws. I think there are very few people who remain on 50 mcg. of T4. The GPs do not understand how the thyroid works and unfortunately patients don't either and why should they. You expect your GP to know more than you but for hypothyroidism, the patient can find out much more than your doctor will. They will tell you to stay off the internet. It's just a defense mechanism. You will have to start learning and as you find out how you have been mistreated you will be motivated to learn more. You are only 26 and too young to have your health ruined by the ignorance at large.

    There are many good sources. I like this website which taught me so much for many years but first this basic article.

    health.howstuffworks.com/hu...

    stopthethyroidmadness.com/m...

  • Thanks Shaws and Heloise. I've recently moved so went to my new GP with your advice. The new Dr agreed to do full thyroid test and to go from there. However, she did mention that the lab decided whether to look at T3/T4 depending on TSH result. She has put a note to check them all anyways. She did agree that 50mcg was very low and may need increasing. She's also not heard of NDT but we can cross that bridge when the results come back.

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