Not responding to T3/T4 combo

Hi All,

I really need your help and advice. I am on a T3 / T4 combo and my meds were put up in April to 125mcg T4 and 25 mcg T3 daily.

My results in April were as follows:-

April 2016 - (taking 100 thyroxine and 20mcg T3)

Free T4 - 10.7pmol/L. (11 - 26.0)

TSH - 0.64 (0.35 - 4.5)

Free T3. - 3.7 (3.1 - 6.8)

I still feel so rough sadly and am really despondent with the whole thing. I was diagnosed nearly four years ago and it has never been right. Currently my weight is increasing despite regular exercise and a good diet, my hair is falling out and I could fall asleep stood up. Has anyone any advice? I've emailed my endo but he is out of the country and I'm not due to see him for six months. Ps... Endo really not keen on NDT despite my requests!

Thank you so much, C xxx

[shaws]

At first glance with your April results, both FT4 and FT3 were low, too low in fact. That's why he's increased the dose and you haven't improved, symptom wise.

I think you may not be converting levo to sufficient T3. You cannot lose weight, you exercise (thus reducing T3 if not on an optimum). It's a viscous circle I am afraid.

I myself know exactly how it feels to be on a reasonable dose of hormones and feel worse.

Either levothyroxine (or the generic you are taking) doesn't agree with you. Have you always been on the same generic?

I improved as I reduced levo and increased T3 but am not medically qualified only my own experience.

Some cannot tolerate levothyroxine for one reason or another. I have also tried NDTs (several) but am well on T3 only. Everyone varies and it is trial and error.

I shall give you a link and you can read some of the topics - as the link is now archived some within may not work.

thyroiduk.org.uk/tuk/about_...

Our receptor cells need to be saturated for T3 for our metabolism to work efficiently.

[Hidden in reply to shaws]

Thank you so much for this, I too have worried about conversion but I'm not sure how to tackle it. I would really like to try T3 only, not sure my endo will like it though

I have always been on the same generic levo, it's so frustrating because most gp's seem to think it is the only thing that works. I'm definitely not a levo fan.

I didn't know exercise could lower T3, I'm probably making myself worse...

Thank you once again

C xxx

[shaws in reply to Hidden]

I think the least the Endo could do is let you trial some T3 to your T4. Mine did at it improved my symptoms a lot (not completely).

Also when you get a blood test for thyroid hormones it should be the very earliest possible and don't eat before it but you can drink water. Also allow 24 hours between your last dose of levo or other hormones and take it after the test.This helps keep TSH at its highest as that's all most doctors think is the 'perfect' way to diagnose whilst ignoring patients' symptoms.

[Clutter]

Clarycat,

I think your endo should have asked you to have a blood test 6-8 weeks after the dose increase. FT4 was below range so you could probably do with an increase of Levothyroxine to 150mcg.

You might also ask your GP to check ferritin, vitamin D, B12 and folate levels. Deficiency and low levels can present similar to hypothyroid symptoms.

[Hidden in reply to Clutter]

Thank you Clutter. I have the paperwork for the bloods that the endo gave me at my last appointment, but he didn't tell me when to have them done 🙄 I'm going to have them done tomorrow, hopefully then he will amend my meds. I am definitely Vitamin D deficient and take 2 X 20000 iu tablets a week, but my iron has never been checked, so will request that. Thank you once again,

C xx

[Clutter in reply to Hidden]

Clarycat,

You may want to check with your endo first. I suspect the blood forms are so you can have levels checked prior to your consultation in 6 months.