On Levo, 125mg daily for 1year, TSH and T4 normal now, but gained 13kgs. Was fat before, when hyper, so had RAI ablation. Help!

I had RAI treatment about 18 months ago. I was overweight, but clinically hyperthyroid and I felt crap. My dose of Levo has increased to 125mg daily, but I seem to be getting fatter with each increase. Endorse says my TSH and T4 are Normal. I asked for T3 to be measured, but endo says as my TSH is normal, I can’t have a conversion issue. To be honest I felt better before. I’ve gained over 13kgs in under a year, eating carefully. I’m so depressed. Any ideas? I’m in UK.

[Clutter]

Montmorency68,

Can you post your recent thyroid results and ranges so we can check whether you are optimally dosed on 125mcg.

Endo is wrong about conversion. I had suppressed TSH with good FT4 yet FT3 was below range. If your TSH and FT4 indicate you are adequately dosed it may be worth you ordering a private TSH, FT4 and FT3 test to check conversion.

[SlowDragon Administrator]

Can you add your most recent results

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment for patients after RAI or thyroidectomy

rcpe.ac.uk/sites/default/fi...

For full Thyroid evaluation TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[Kell-E]

Have you ever done any research on reverse T3? Because you probably had a high level of rT3 when you were hyper and you certainly could have a lot of it now on levo. When you describe doing worse with every increase, that is the hallmark of rT3 interfering will cellular metabolism.

[Hidden in reply to Kell-E]

The irony is that I am a neuroendocrinologist: researcher and professor, but not a clinician, so they take no notice of me even when I cite current literature on rT3. I teach these people for goodness sake in Med school! My view is that I have loads of rT3, but they will not measure or listen to me in the clinic. My lectures are now focussed on the “non traditional” views, but the students keep coming back with “but the book says.....” . Just had a new blood test done: fasted, no Levo for 2 days, results next week, but it will not report rT3 as in UK it’s not included in the thyroid panel...so fed up.....

[helvella Administrator Thyroid UK in reply to Hidden]

Have you considered getting a full set of thyroid tests - including rT3 - privately?

For example:

bluehorizonmedicals.co.uk/t...

Not cheap (I have not searched for the least expensive rT3 test - just the first UK one).

Also, have you noticed the posts here by diogenes? Such as this one:

healthunlocked.com/thyroidu...