Thyroid UK
90,558 members104,941 posts

Ranting! Will I ever catch a break

Hi all, this is more of a “let off steam” rather than a question.

I was diagnosed in October with hypothyroidism after 6 months of nobody listening to me! borderline antibodies so possible hashimotos. Then started on 50mcg, TSH was 3.9 so upped to 75mcg.

Blood test on Monday has come back as TSH 0.01 and T4 20.9 so now dropping back to 50mcg

I’ve felt so unwell the last week with what feels like hypo symptoms, exhausted, bloated etc.

I feel like I’m at my wits end!

6 Replies

Your body has been shocked into the sudden lump of thyroid hormone and so tsh has shut down, even though ft4 is not over range.

This means your body is not really using the t4 that well. Ideally tsh will be 1 so meaning the thyroid is still asking the body to make more and ft4 is higher in the range. It would be an idea to get ft3 done privately to see how conversion is going.

Vitamin attention can help improve thyroid performance so look into this area. There are lots of posts on here detailing the vitamins and minerals we should be on to support poor thyroid function.

Low or high cortisol can inhibit thyroid uptake. This needs to be explored.

Taking t4 at bedtime can give better results as well. Worth doing at least one night.

1 like

Is your FT4 in range. My lab's range is 9-19 but we often see 12-22 on here. If your FT4 is in range you shouldn't have accepted a reduction in dose.

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.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Available on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 print it and highlight question 6 to show your doctor if you want to ask for an increase in dose.

1 like

Your doctor is clueless should not have a dose decrease

Whats needed is to have tested the important T3

Your t4 is high and you probably are not converting the T4 in levo into the vital T 3


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

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available

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 ideally 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)

Is this how you did test?

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are extremely common and need supplementing to improve to help thyroid hormones

Do you have any gut symptoms?

1 like

Some yes, I don’t have the constipation and am extremely bloated, I’m trying gluten free at present


Thankyou everyone. I just feel like I’ve been messed around so much, I work full time and have children and I’m sick of feeling rubbish (to be polite!) every day!

So you think my next step should be to check T3?

I can guarantee they’ll disagree and make me wait 6 weeks


You may also like...