Lactose free levothyroxine?: Hello does anyone... - Thyroid UK

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Lactose free levothyroxine?

acunatang profile image
15 Replies

Hello does anyone know if you can get levothyroxine without lactose please?

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acunatang
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SlowDragon profile image
SlowDragonAdministrator

Yes

Teva or Aristo are lactose free tablets

Teva brand contains mannitol, which upsets some people. But generally, if lactose intolerant, Teva seems to suit many people

Teva easily available. Aristo more difficult

List of different brands available plus ingredients

thyroiduk.org/if-you-are-hy...

Liquid levothyroxine available too lactose free

Niteflite profile image
Niteflite

My doctor prescribed Glenmark as I wanted to avoid mannitol and lactose. I haven’t been able to get any yet but I live in hope. Pharmacy2U said they were trying to source it. 🤞

helvella profile image
helvellaAdministrator in reply toNiteflite

Although it has a UK licence, I have not yet heard of anyone receiving Glenmark.

Niteflite profile image
Niteflite in reply tohelvella

No I haven’t . I checked on here when my dr mentioned it . I’ll be very surprised if I get it She told me that liquid Levothyroxine is too expensive 😟

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

Aristo is lactose and mannitol free

A few people managed to get this one

Niteflite profile image
Niteflite in reply toSlowDragon

I have reduced again to 50/75 and Aristo unfortunately only do 100mcg tablets. My dr said I wouldn’t be able to split them and ruled them out. That is when, after consultation, she came up with Glenmark!

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

Jesus wept ...Of course you can cut them

Levothyroxine is a storage hormone.

That’s an incredibly small dose levothyroxine

Usually if lactose intolerant need higher than typical dose levothyroxine

Or are you taking T3 as well?

What are your most recent thyroid and vitamin results and ranges

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

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)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Niteflite profile image
Niteflite in reply toSlowDragon

I argued with her about cutting them but she didn’t budge. I ask for an increase every time and I’ve told her that on the tablet leaflet it says 50 mcg is a starting dose. I regularly change from 50 to 50/75 to 75 in response to my TSH and T4 see-sawing! I am not on T3.

These are from Medichecks on 15 January at 8.57

CRP HS 0.15 mg/L (<5)

Ferritin 128 ug/L (13-150)

Folate 19.01 ug/L (>3.89)

B12 140 (>37.5)

D 74.50 nmol/L (50-175)

TSH 0.27 (0.27-4.2)

T4 20.700 pmol/L (12-22)

Thyroglobulin antibodies 16.600 kIU/L (<115)

Peroxidase antibodies 20.80 kIU/L (<34)

On same day at 8.15 NHS test

Vitamin D 62 (50-120)

TSH 0.27 (0.35-3.5)

T4 14.5 (7.5-21.1)

My most recent tests

11 Jan TSH 0.27 (0.35-3.5), T4 14.5 (7.5-21.1)

12 Mar TSH 5.88, T4 11.7

Most recent with T3

30 Nov TSH 0.22, T4 14.5, T3 3.5 (3.8-6)

Tests taken as advised on here. The supplements I am taking are Igennus Super B-Complex and Nutrizing Vitamin K2 & D3 + magnesium.

I hope I haven’t made this too confusing!

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

TSH 0.27 (0.35-3.5)

T4 14.5 (7.5-21.1)

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

Ft4 is only 51% through range

Most people when adequately treated will need Ft4 at least 70-80% through range

Roughly how much do you weigh in kilo

Unless extremely petite likely to need to be on at least 100mcg levothyroxine per day

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually 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...

Essential to stop vitamin B complex a week before test

Niteflite profile image
Niteflite in reply toSlowDragon

I am always lucky enough to get my NHS tests done between 8 - 8.30 and I only have water beforehand and take my medication 24 hours before. I weigh 54kg. I also stop the vitamin B a week before.

The trouble is my dr is adamant that low/suppressed TSH causes osteoporosis due to her personal experience and I cannot argue against that. At the moment she is trying to help with my bloating issue. I have a C T scan coming up. Once I’m on a level keel and blood tests are further apart I hope to go it alone to some extent. I want to still receive my medication which I can top up with my stash of Levothyroxine which I have due to inefficiencies of my previous surgery. Then I’ll know, with the help of private testing, what I actually need. With the help of you and others on this site I should then be able to move forward.

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

LOW Ft3 will cause osteoporosis

When we have thyroid disease we need OPTIMAL Ft3

You don’t want Ft3 too low or too high

Osteoporosis

thyroidpatients.ca/2018/07/...

54 kilo x 1.6 = 86.4mcg as likely daily dose levothyroxine required

In other words 75mcg and 100mcg on alternate days is likely to be roughly optimal

86.4 x 7 days = 604.8 mcg per week

4 x 75mcg and 3 x 100mcg per week = 600mcg per week

Though if lactose intolerant it’s common to need higher dose that guidelines

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

At the moment she is trying to help with my bloating issue.

Bloating is inevitable result of being under medicated

When hypothyroid we frequently/always have low stomach acid

Low stomach acid leads to bloating, poor nutrient absorption and low vitamin levels

Gluten intolerance and lactose intolerance common as direct result

Often lactose intolerance improves after year or two on gluten free diet

coeliac.org.uk/information-...

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...

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

See Diogenes reply in this post

healthunlocked.com/thyroidu...

the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing

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

Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2

Niteflite profile image
Niteflite in reply toSlowDragon

I will study all this and hopefully have some ammunition to use although I don’t think it will get through to her - but we will see. Thank you for your considerable knowledge and help. I am getting there!

SlowDragon profile image
SlowDragonAdministrator in reply toNiteflite

30 Nov

TSH 0.22,

T4 14.5,

Ft4 only 50% through range

T3 3.5 (3.8-6)

Clearly FT3 was well below range .....surprised your functioning at all

11 Jan

TSH 0.27 (0.35-3.5),

T4 14.5 (7.5-21.1)

Ft4 only 50% through range

12 Mar

TSH 5.88,

T4 11.7

Ft4 is only 30% through range - clearly ridiculously low

So you need immediate 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks later

You will very likely need further 25mcg increase in levothyroxine after next test

Aiming for

Ft4 at least around 18-19

And Ft3 at least over 5

All four vitamins need to be optimal

acunatang profile image
acunatang

Thanks for all your answers, I am going to try and get them on prescription but if not I will have to buy them. I have previously been taking Nature Throid but I can't seem to get it now

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