Advice please

[Duke38]

Hi fellow thyroid sufferers. I'm after some advice please. I was diagnosed in 2017 with hypothyroid, currently taking 100mcg daily but still struggle with symptoms. Mainly lack of energy, low mood but also anxiety and overwhelmed feelings - do others get this? I was tested in December when I felt particularly bad and was told the result was just within parameters so give it a few months. Just got checked again and TSH 4.52 so still in range. I have been dismissed by GP before when explained still having symptoms as I'm a mum of small children so this must be making me tired. Could I be in need of T3 replacement? I wonder what my next move is? Do I ask the GP for this DIO2 test and/or ask to be referred to endocrinology?

[greygoose]

First thing you need to do is get full thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Nobody can suggest what you need to take without seeing the results to all those tests. But, with a TSH over 4, it's obvious that you're under-medicated. The TSH should come down to 1 or under when taking levo. But, not many doctors seem to understand that.

[Duke38 in reply to greygoose]

Thank you for your reply, do you find GPs willing to test for all these or is private the way to go?

[greygoose in reply to Duke38]

Some are, some aren't. But, it's rare to get tested for FT3 and Tg antibodies. And vit d is difficult. So, a private test, without recourse to a doctor, is often the best way to go.

[SeasideSusie Remembering]

Duke38

Could I be in need of T3 replacement?

Not at this stage, maybe not at all.

Just got checked again and TSH 4.52 so still in range.

There is your clue. Your TSH is far too high. The aim of a hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Testing just TSH is totally inadequate, it's not a thyroid hormone anyway, it's a message from the pituitary for the thyroid to make hormone when it detects there's not enough. With your TSH that high it's detecting there isn't enough thyroid hormone and it's asking for more. If your FT4 and FT3 were tested they would be low in range, they are the thyroid hormones.

Your GP should increase your Levo, 25mcg immediately, retest in 6-8 weeks. Repeat until levels are where they should be for you to feel well. In support of your request for a dose increase, use the following information:

NHS Leeds Teaching Hospitals who say

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

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

Also, 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.

We also need optimal nutrient levels for thyroid hormone to work so we also need to test Vit D, B12, Folate and Ferritin.

If you can't get full thyroid/vitamin testing from your GP then we have recommended private labs who do these tests with a fingerprick sample or "arrange your own blood draw". If you would like details, please ask.

[SlowDragon Administrator]

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)

See different GP and request 25mcg dose increase in levothyroxine and request testing of vitamin D, folate, ferritin and B12

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

Have you had thyroid antibodies tested?

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

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

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

Post re how to push for dose increase in levothyroxine

healthunlocked.com/thyroidu....

Links to print off ready (if need be) if GP reluctant to increase dose

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 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...