Morning, since being diagnosed with an under active thyroid in March I've not been feeling better since the doctor stated I was stable using a dose of 100mcg of Levothyroxine. In fact I think symptoms have got worse and not sleeping through the night. I have a GP appointment this afternoon and I've paid for private testing so does anyone have ideas from these results what I should say to them?
Go back to GP ask for dose increase, but also ask for vitamin D, folate, ferritin and B12 to be tested. Very common for these to be too low and that stops the Thyroid hormones being used
Do you know if you have Hashimoto's ? Also called autoimmune thyroid disease. Have you had your thyroid antibodies tested to see if they are high?
Hashimoto's is most common reason in UK for being hypo. But medics don't understand the significance so they just ignore it.
But we need to look for the root cause, usually hidden food intolerances, most common is gluten but can be dairy
Low stomach acid is common too, causing malabsorption of vitamins and sometimes the Levothyroxine too
We are aware that doctors are poorly trained in hypothyroidism, symptoms of them, or anything else except that they should look at the TSH alone and that will reveal everything about the patient.
This is a lot of nonsense. We need optimum thyroid hormones to relieve all clinical symptoms and doses do not come into the equation at all until the patient feels very well with no clinical symptoms. That's the aim but it falls short otherwise we wouldn't have so many people searching for help/advice.
First - your TSH should be 1 or lower. Not higher once diagnosed. Both FT4 and FT3 need to be towards the top of the range.
Just tell him you feel awful and need an increase in your dose as your TSH is far too high when the aim is one or below.
The only person who knows what makes her or him stable is the patient. It cannot be communicated through blood test results alone.
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
Book available from pharmacies or Amazon, approx £4.95. It's a British Medical Association book so a bit hard to argue with if you're a doctor. Written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist.
Dr Toft also 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 article by emailing louise.roberts@thyroiduk.org.uk , print it and highlight question 6 to show your GP.
Then point out your TSH is way over range and you would like an increase in your dose of Levo. That should be 25mcg and you should retest after 6 weeks, possibly another increase, another retest 6 weeks later, until your symptoms abate and you feel well with results maybe similar to those which Dr Toft mentions.
When having thyroid tests, always book the earliest appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours (take after blood draw). This gives the highest possible TSH which is needed when looking for an increase in meds or to avoid a reduction. TSH is highest every early in the morning and lowers during the day, lowest is around mid afternoon, it also lowers after eating.
Thanks for this, my GP started me on 100mcg straight away and only done one test 5 weeks after and wasn't told about leaving 24 hours between dose and morning test. Told after this it was normal and to come back in a year! I can understand how people get frustrated with doctors not looking a an individual.
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