Finally! But a question please...

[aohara]

Hi, so after well over a decade of battling with the NHS who wouldn't treat despite all the symptoms, massive family history, often top or just over top of range results, I did a private test (Thriva) so I could specify the tests. Got a TSH of 7.8 with normal T4 and comments from their doctor that this indicated hypothyroidism. So wrote an accompanying letter to GP and am finally starting treatment! However - I've heard the starting dose is 25mg, and that's what I've been given. The leaflet says starting dose for adults is 50mg, plus I'm on Sertraline and it looks like that could be something which affects efficacy. Per instructions I'm taking the levothyroxine in the morning well before food, but I also take the Sertraline in the morning at the moment.

Is anyone else in this situation, any tips?

I read something about absorption may be better if taken at night (will have to watch how late I have food though!)

[SlowDragon Administrator]

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

At least 2 hours after a meal.....three hours if had a feast

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)

Have you had thyroid antibodies tested and vitamin D, folate, ferritin and B12?

Many people find Levothyroxine brands are not interchangeable.

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.

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

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

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).

[aohara in reply to SlowDragon]

Thank you When you say people don't get on with a brand, is that in terms of efficacy or side effects? I have had the other tests, antibodies were both 20.something, Vit D very low so I'm on that now, but in the past that's been fine whereas I've had these symptoms for years.

[SlowDragon Administrator in reply to aohara]

Can you add the actual results and ranges on vitamins and antibodies

How much vitamin D are you taking?

Is this prescribed by GP

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

[aohara in reply to SlowDragon]

Vitamin D is prescribed and it's 20,000IU, 2 once a week for 3 months.

BIOCHEMISTRY

25 OH Vitamin D L 40 75 - 175 nmol/L

HAEMATINICS

Ferritin 33 13 - 150 ug/L

Active B12 142.0 37.5 - 188 pmol/L

Folate (serum) 29.6 8.83 - 60.8 nmol/L

THYROID FUNCTION TESTS

Thyroid Stim. Hormone H 7.84 0.270 - 4.2 mIU/L

Free T3 3.6 3.1 - 6.8 pmol/L

Free Thyroxine (FT4) 12.4 12 - 22 pmol/L

Thyroglobulin Antibodies 20.6 0 - 115 kU/L Method: Roche Cobas

Thyroid Peroxidase Antibodies 20.3 0 - 34 kIU/L Method: Roche Cobas

Total Thyroxine (T4) 89.00 59 - 154 nmol/L

[SlowDragon Administrator in reply to aohara]

So ferritin is low and you need to look at increasing iron rich foods in your diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Ask GP for ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to aohara]

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

If GP doesn’t retest vitamin D at end of prescribed course, test yourself

NHS postal kit test - very easy

vitamindtest.org.uk

Improving vitamin D to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, you will probably need on going maintenance dose to keep it there.

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need,

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

Calculator for working out how much to supplement

grassrootshealth.net/projec...

[SlowDragon Administrator in reply to aohara]

Obviously you are going to find 25mcg a low dose ....it can make you feel worse...try to stick it out until retest at 6 weeks

But you may need to push for increase up to 50mcg before 6 weeks testing....and certainly after next blood test

[aohara in reply to SlowDragon]

Thank you Re Vit D he did say I'd be able to go on to over the counter stuff after these initial 3 months at a higher dose. Haven't had an issue with Vit D in the past. I've only been given four weeks levo anyway, so no doubt it'll be another battle to get it increased and if I try to get a blood test beforehand it'll only have been 3 weeks...

[SlowDragon Administrator in reply to aohara]

You will need to request new prescription BEFORE getting next blood test

Bloods should be retested 6-8 weeks after each dose increase

Important to get dose increased upwards as fast as tolerated

Once we start levothyroxine, it’s usually for life

You are entitled to free prescriptions on levothyroxine

[SlowDragon Administrator]

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Bloods should be retested 6-8 weeks after each dose increase

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, best not mentioned to GP or phlebotomist)

[Girlslovescifi in reply to SlowDragon]

When I finally got my GP to diagnose hypothyroidism (really had to be persistent), I was left on 25mcg for well over a year, despite my symptoms being no better. Saw endo privately and he just held my hand and took my pulse to know I was way under medicated. Best £200 I ever spent. Changed surgeries after that.

[SlowDragon Administrator in reply to Girlslovescifi]

Astonishing isn’t it ...guidelines are quite clear...most people on levothyroxine will need full replacement dose...even if initially starting cautiously...

dose should almost always be increased slowly upwards until on full replacement dose......obviously many GP’s never read guidelines

We see thousands of people left languishing on 25mcg or 50mcg for months or years

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

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...