cutting down

[tilleytolley]

can you ever stop

thyroxine or cut down or is it for life

[SeasideSusie Remembering]

tilleytolley

It depends on the cause of your hypothyroidism, sometimes it's temporary thyroiditis, mostly it's Primary Hypothyroidism or Autoimmune Thyroid Disease (Hashimoto's) and Levo tends to be for life because the thyroid gland can't produce enough thyroxine naturally.

What is your diagnosis and what are your test results and reference ranges for

TSH

FT4

FT3

Thyroid antibodies

[tilleytolley in reply to SeasideSusie]

Tsh 1.93

T4 13

I take 100mg levo just wandered if one can cut down or not due to so much weight gain

[SeasideSusie Remembering in reply to tilleytolley]

tilleytolley

I imagine your weight gain is due to undermedication.

You haven't given the ranges (always include these as they vary from lab to lab) but when on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

So we need the range for FT4 and you also need FT3 testing at the same time as TSH and FT4 as this tells us whether you are converting the T4 (storage/pro-hormone) into T3 (the active hormone that every cell in our bodies need.

If you cut down on your Levo you will become more hypothyroid and that could make you put on more weight.

[tilleytolley in reply to SeasideSusie]

tsh 1.93 (0.25-4.00 )

t4 13 ( 11.0 22.0 )

never had tests for the other bits you mention guess i am stuck with taking it forever , thanks

[SeasideSusie Remembering in reply to tilleytolley]

tilleytolley

You definitely need an increase in dose. 25mcg now, retest 6-8 weeks later. Repeat until levels are where you need to be for you to feel well. But FT3 should be done because if T3 remains low then weight loss will be difficult.

Ask your GP for an increase in dose and use the following to support your request:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

[shaws Administrator in reply to tilleytolley]

Levothroxine can be the cause of weight gain, if you are not on a sufficient dose as it wont be able to convert to sufficient T3.

T4 (levothyroxine) is an inactive hormone and converts to T3. T3 is required in our millions of T3 receptor cells. T4 being inactive and T3 being the Active Hormone which raises our metabolism.

p.s. I'm not medically qualified but had struggles like the majority on this forum..

[SlowDragon Administrator]

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 Thyroid antibodies are raised or if under medicated as you currently are

FT4 is too low, FT3 needs testing and thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Ask GP to test vitamin levels and thyroid antibodies if these have never been done

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 and FT4 in top third of range when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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

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

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Come back with new post once you get results and ranges on vitamins and antibodies

[elwins]

I was told I would be on it for life and that was 60 odd years ago. Looks like you have some very knowledgeable people offering advice to you. We are so lucky to have this forum.