Looking for advice : Been underactive for about... - Thyroid UK

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shazthescot profile image
9 Replies

Been underactive for about 8 years had a routine blood check 6 weeks ago then doc called said needed to up levo from 75 to 100 i was feeling fine at that point. Now tired night sweats cramps in my legs feeling terrible had bloods monday called today oh results fine . Results TSH 3.31

T4 12.4 they dont test T3 . Are these normal if on levothyroxine?

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shazthescot
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9 Replies
SlowDragon profile image
SlowDragonAdministrator

What were results from before dose increase?

Just testing TSH and Ft4 is completely inadequate

TSH should always be under 2 when adequately treated

Ft4 near top of range.

What’s the range on Ft4 result?

Low vitamin levels are extremely common, especially if been under medicated

Low B12 often causes night sweats

Cramp often low magnesium, common if vitamin D is low

Do you always get same brand of levothyroxine

Which brand

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Just Vitamin D NHS postal kit

vitamindtest.org.uk

shazthescot profile image
shazthescot in reply to SlowDragon

Hi yes test was in the morning fasted and levo was taken 24hours before . Never been given vitamin levels or t3 i am waiting on doctor calling me back as receptionist says as TSH under 4 then everything normal to be honest she was shocked when i asked for t4 and t3 result and says oh the only thing thats in results is t4 not t3 .

SlowDragon profile image
SlowDragonAdministrator in reply to shazthescot

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

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)."

(That’s Ft3 at 58% minimum through range)

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

tukadmin@thyroiduk.org

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

shazthescot profile image
shazthescot in reply to SlowDragon

Hi docs here are useless i am going to get it tested privately when i follow the link says can get home test finger prick would this give as good results

SlowDragon profile image
SlowDragonAdministrator in reply to shazthescot

Yes

Follow tips on how to do here

DIY finger prick test

healthunlocked.com/thyroidu...

Only do test early Monday or Tuesday morning and then post back via tracked 24 hour postal service

What vitamin supplements are you currently taking if any?

Do you always get same brand levothyroxine?

Which one?

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

shazthescot profile image
shazthescot in reply to SlowDragon

Almus it says on front and yes always these i take them early morning not on any vitamins . Doctor didnt bother to call me not surprised they are useless.

helvella profile image
helvellaAdministratorThyroid UK in reply to shazthescot

If you look on the long edge you can see the PL Holder (might say MAH) - which on the Almus pack was Actavis. Has now changed name of company to Accord.

This information will be present on the card outer packaging of all makes.

Image of card outer packaging of Almus levothyroxine
shazthescot profile image
shazthescot in reply to helvella

Yes it says Accord

SlowDragon profile image
SlowDragonAdministrator in reply to shazthescot

Remember do NOT take levothyroxine before test.

Take it after done test

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