Advice about recent thyroid results : God I feel... - Thyroid UK

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Advice about recent thyroid results

Bearcubs profile image
10 Replies

God I feel so deflated....been taking 100mg of levothyroxine since being diagnosed with hypothyroidism around 2 year ago. I was taking it on a morning and my thyroid was improving but only a little in 8month, i changed to taking it on a night just because that works better for me and I was told it's better to take on a night . It's been another 8month and I've been taking it religiously, got my bloods took last week and they have come back low again so Dr wants to see me, I just don't understand it. How can it be lower...my results where TSH level 8.02mu/L, my T4 was 14.0pmol. Does someone know why this may have happened or what this result means please. I thought I was getting somewhere with at least one of my health issues but guess not. I appreciate any responses

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SlowDragon profile image
SlowDragonAdministrator

my results where TSH level 8.02mu/L, my T4 was 14.0pmol

High, over range TSH

So you need 25mcg dose increase to 125mcg

On levothyroxine aiming for TSH to ALWAYS be under 2 . Most people when adequately treated will have TSH around or below 1

Looking at your profile info you were previously on 200mcg

So had massive (and inappropriate) dose reduction

Approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

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

Bearcubs profile image
Bearcubs in reply toSlowDragon

Yes, so my Dr put me on 200mg straight away when I was first diagnosed, then another Dr reviewed it and ive slowly came down to 100mg and been here a while. I weigh 26stone 7lbs at the moment, I've never been this heavy in my whole life. I am seeing a dietitian and I also took your advice and ordered a T4 and T3 test privately so that's on its way. Thankyou for the information I'll definitely read them now x

SlowDragon profile image
SlowDragonAdministrator in reply toBearcubs

26 stone 7lbs = 168 kilo

So you are likely to need several further increases in Levo

Get next increase to 125mcg

Retest in 8 weeks

Likely to be ready for further increase then

Bearcubs profile image
Bearcubs in reply toSlowDragon

And sorry I missed a few things out, I am taking Ferrous fumarate 200mg daily due to low hemoglobin, I also take vitaminC, and nothing else. I don't actually know the reason for my hypothyroidism...I've never been told. Maybe it's my weight if that can affect it x

McPammy profile image
McPammy in reply toBearcubs

If you’re taking ferris fumerate do you leave at least 4/5hrs after your levothyroxine dose. Ferris fumerate has contra indications with levothyroxine. It stops levothyroxine absorption. So it’s always tricky. I take both levothyroxine and ferris fumerate and make sure there are a good few hours between them. Another thing you could ask your prescribing Dr is if they could switch you from tablet form levothyroxine to liquid form. I take the liquid now. Liquid absorbs much better than tablets and you don’t need to avoid food with liquid like you do when taking the tablets. Liquid is more expensive but it’s so much better. And you can alter your dose effectively too as it’s liquid. Push your Dr to prescribe in the most professional way possible

You should check T3 also to ensure you are converting the levothyroxine T4 to the most important hormone T3. Low T3 can cause loads of issue. I put on 4st when under medicated. As soon as I was prescribed T3 liothyronine medication alongside my usual T4 levothyroxine I lost all the weight without trying. T3 controls your metabolic rate and energy levels amongst a host of other things. Get the test done as soon as you can.

It’s all about good absorption and eating healthy alongside keeping active best you can. Keep positive.

Bearcubs profile image
Bearcubs in reply toMcPammy

Wow thankyou so much 💓 I've been taking them together! What a idiot I am. Thankyou so much for this and replying. It all makes sense now. I'm getting my t3 checked privately so hopefully thats a step in the right direction. X

SlowDragon profile image
SlowDragonAdministrator in reply toBearcubs

I'm getting my t3 checked privately so hopefully thats a step in the right direction. X

Suggest you wait to retest 6-8 weeks after being on 125mcg daily

And essential to take iron at least 4 hours away from levothyroxine

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...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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)

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

elaar profile image
elaar in reply toBearcubs

Iron can have a large impact on Levo absorption. They suggest taking it at least 4 hours away, and some studies have shown an impact even up to 8 hours. So something to bear in mind if you're switching Levo intake from Morning to bedtime.

Astrido profile image
Astrido in reply toelaar

Is this also true for the mouth spray iron or just the tablets? (Leaving a gap)

Sleepman profile image
Sleepman

Most are autoimmune.

They should test for thyroid antibody TPO.

It is frustratingly slow to get dose right but we have to keep plodding on.

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