Symptoms worse but GP wants to reduce Levo - Thyroid UK

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Symptoms worse but GP wants to reduce Levo

BlueLight87 profile image
7 Replies

I've been on Thyroxine for about 5 years. My current dose is 75. My T4 has always been the low end of the normal range as has my TSH. The endocrinologist said that my I'm odd as the TSH isn't slightly elevated as he would expect but if the meds helps with the meds then carry on.

Unfortunately its stopped working and I feel like death. Exhaustion, nails splitting, hands shaking, weight gain, joint pain, sweating like I'm constantly in a sauna... New blood results including T3 this time and I could cry....

TSH:0.05 ( 0.2 - 5.5 miU/L)

FT4 : 17.8 (10 - 24.5 pmol/L)

FT3: 3 (3.1 - 6.8 pmol/L)

Anyone have any ideas or theories on what's going on?I do shift work and this destroying me.

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SlowDragon profile image
SlowDragonAdministrator

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 know if 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, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Your results show extremely low Ft3....likely to have very low vitamin levels

Low vitamin levels tend to lower TSH....hence why so important to test vitamins too

We frequently need to supplement some, or all of these virtually continuously to maintain OPTIMAL vitamin levels

Have you had any vitamin levels tested recently?

75mcg levothyroxine is low dose ....most people need at least 100mcg...

Unless you are very petite

Guidelines on dose by weight is 1.6mcg levothyroxine per kilo of your weight

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...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies and vitamins by DIY fingerpick 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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

SlowDragon profile image
SlowDragonAdministrator

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 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...

Do you always get same brand of levothyroxine?

Which brand?

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).

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)

Do you currently take any vitamin supplements?

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL thyroid testing

Likely to need dose increase in levothyroxine....not decrease...

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is)

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

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

tukadmin@thyroiduk.org

If your Ft4 is low in range you are under medicated and need dose increase in levothyroxine

BlueLight87 profile image
BlueLight87

I'm on vitamin D supplements but all other vitamins inc iron and cortisol came back normal.

I've always been on the same brand and take it on an empty stomach as I go to bed depending on if I'm on an early or night shift. I found first thing in the morning made me feel worse.

I'm definitely not petite- about 5ft9 and 11 st. The endocrinologist clinics aren't running at the moment so they wrote a letter authorising the free T4, T3 and TSH. My tsh or T3 has never been this low. I was only diagnosed with hypothyroidism not hashimoto's.

SlowDragon profile image
SlowDragonAdministrator in reply to BlueLight87

So you need to get a 25mcg dose increase in levothyroxine up to 100mcg

Try to always stick to same brand of levothyroxine

Please add actual results and ranges on folate, ferritin and B12

Being within range is not the same as being at optimal levels

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

SlowDragon profile image
SlowDragonAdministrator in reply to BlueLight87

So 11 stone = 70kilo

70 x 1.6 = 112mcg likely dose levothyroxine required

Rare to need less...some people need higher dose than guidelines

DippyDame profile image
DippyDame

You need to see a medic who knows about thyroid disease!

I'm not surprised you feel"like death".

Your FT3 is abysmally low., for the body to function successfully every cell in the body needs an adequate and constant supply of T3

Your FT4 is 53.79% through the ref range

Your FT3 sits a shocking -2.7%

Both should be close to 75% through their range

Have you had vit D, vit B12, folate and ferritin tested

To support thyroid function thse need to be optimal

Your conversion is very poor and may be inproved with optimum nutrients

thyroiduk.org/managing-your...

But it is also possible that you need T3

But first try an increase of levo which should raise your Frees.

If that doesn't help then I suggest you ask your endo for a trial of T3 because your FT3 needs to be raised immediately

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

Your GP needs to concentrate on your Frees not your TSH. Medics claim TSH is the main test....this is rubbish as this paper explains

bmcendocrdisord.biomedcentr...

Have you had antibodies tested to check for Hashimoto's?

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

75mcg is not a large dose you have room for an increase, say 25mcg, then test again after 6 to 8 weeks and alter dose if required.

Test nutrients ( above) asap and supplement as necessarily

Do you take your levo away from food and drinks?

thyroiduk.org/treatment-opt...

Your symptoms are typical of hypothyroidism

thyroiduk.org/signs-symptom...

Make a note of all the things you wish to discuss with your medic and take it to your appointment......I found this helped prevent a stilted explanation for my visit.

You will get better with the correct medication!

Good luck

DD

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