Panicking!

[ElizaMaye]

I have just today returned to work after having 3 months off due to being unable to concentrate an suffering with pains a fatigue. My results around 6 weeks ago were TSH 1.92 (0.35 - 5.5) T4 10.1 (7-17), T3 4.6 (3.5 - 6.5). I managed to get the doctor to increase me to 100mcg (levo) and started to feel an improvement, (less pain, more energy), hence the return to work (although still not completely right). I had my bloods done on Friday and my T4 has gone up to 15.8 but my TSH has gone down to 0.17 and they haven't even tested my T3!!!! I've had a call off the doctor asking me to ring in about my TSH so I know they're going to reduce me again and I just can't cope, I've only been back a day! Can anyone offer any advice on what I can say to the Doctor? I do finally have an endo appointment but that is a couple of weeks away and I'm already hanging by a thread, I can't take my symptoms worsening again

[Greybeard]

Hi, I would just say no to a reduction. Your tsh is not suppresed,(suppressed is below 0.1) if doctor gets pushy say you will reduce if they can prove ft3 is over range.

[ElizaMaye in reply to Greybeard]

Thank you, that’s sounds sensible I really appreciate that I feel like I’m spinning out of control! I just hope they don’t just refuse to give me the right dose, I cannot believe how difficult this all is 😞

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Insist on FT3 and FT4 both being tested BEFORE you would consider reducing dose

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take 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)

Also ask for vitamin D, folate, ferritin and B12 to be tested

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

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

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

[SlowDragon Administrator]

Just seen you are having B12 injections. Are these happening regularly enough?

What about folate levels?

And ferritin also needs testing

Presumably you have autoimmune thyroid disease diagnosed by high thyroid antibodies. Also called Hashimoto's.

Have you had both thyroid antibodies tested?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[ElizaMaye in reply to SlowDragon]

Thank you very much for the info, sorry I’m slow for responding! ☺️