Advice on meds for underactive thyroid - Thyroid UK

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Advice on meds for underactive thyroid

Notnip profile image
7 Replies

Hi wonderful people!

I'm looking for advice here because I see there are many knowledgeable people here. I have Hashimotos, and I've been taking Teva for around one year (75mcg).

Two questions:

1. Has anyone tried liquid levo? Do we have access to this in the UK (I'm based in Edinburgh)? I'm from Italy, I used to take liquid meds there and I feel I was doing better then.

2. Has anyone shifted from taking levo in the morning to taking it before bed/3-4 hours after dinner? Does it work best? And if shifting to taking levo at night how do you do this change (I guess you don't take double dose in a day)?

Many many thanks to anyone who will take the time to answer!

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Notnip
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SlowDragon profile image
SlowDragonAdministrator

75mcg levothyroxine is only one step up from starter dose

Also which brand levothyroxine are you currently taking. Teva is the only brand that makes 75mcg tablets. Teva upsets many people

Some people do get prescribed liquid levothyroxine, but it’s expensive and usually only initially prescribed via endocrinologist

Many people find taking levothyroxine at bedtime is more convenient and possibly more effective

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Hashimoto’s

Ask GP to test vitamin levels

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)

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

There’s recommended thyroid specialist endocrinologist in Edinburgh on the list

Notnip profile image
Notnip in reply to SlowDragon

Hi SlowDragon, thanks for your very informative reply.

In what ways does Teva UPSET people? What would be the symptoms? What brand seems to be best for most people?

I know 75mcg is a low dose, but 100 is too much (bad hyper side effects), and that's why in the past year I've done many life changes (that I wasn't aware before..) to manage my autoimmune disease (eat super clean, avoid environmental toxins as much as possible, sleep enough, stress management, gentle exercise, meditation, etc.). Also I'm 28 and I'm a very small person.

I did my last labs through Thriva (GP wouldn't test). Not all the results came back as there wasn't enough viable blood for all the advanced thyroid panel labs. But at least I got something:

- ACTIVE B12: 79pmol/L (normal)

- Ferritin: 68ug/L (optimal)

- Folate: 24.8nmol/L (normal)

- FT3: 4.6 pmol/L (optimal)

- T4: 117nmol/L (normal)

- FT4: 18.3 pmol/L (normal)

- Vit D: 70 nmol/L (sufficient)

As I said couldn't get the antibodies as well as TSH. But my TSH has been between 1.1 and 1.4 for the past one year. Going to try again Thriva around April, hopefully I can get my antibodies tested this time.

Let me know what are your thoughts!

SlowDragon profile image
SlowDragonAdministrator in reply to Notnip

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

SlowDragon profile image
SlowDragonAdministrator in reply to Notnip

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Ft4 is 63% through range Ft3 only 41% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Many people would find those levels too low

You might need 100mcg 3 or 4 days week and 75mcg on the rest

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 can be helpful

How much do you weigh in kilo

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...

All your vitamins are ok, but not brilliant, apart from folate

Vitamin D at least around 80nmol and around 100nmol maybe better

B12 minimum of 70.

Ferritin minimum of 70

Notnip profile image
Notnip in reply to SlowDragon

wow so much info to process, thank you so much for this. Yes the blood test was done in the earky morning 24h after last levo dose. I've been wondering about Teva because even if generally speaking I improved my health I do get a lot of 'minor' symptoms and I've just realised it's been exactly for the time I've been taking Teva.

I'm 50 kg and I was diagnosed with Hashi in 2016 (it doesn't run in the family I'm the only one, probably poor diet environmental triggers and high stress levels) I wish I could reach optimal levels and reverse this autoimmunity and take less meds instead of increasing them. Has anyone been able to do that?

SlowDragon profile image
SlowDragonAdministrator in reply to Notnip

So 50kg x1.6 = 80mcg likely minimum daily dose required

80mcg x 7 days week = 560mcg per week

Currently taking 75mcg x 7 days week = 525mcg per week

So you may very need slightly higher dose

But first step is to try different brand levothyroxine

Notnip profile image
Notnip in reply to SlowDragon

The Teva poll just blew my mind! Thank you very much for all this valuable info.

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