Fed up with Levothyroxine : Hello, my youngest... - Thyroid UK

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Fed up with Levothyroxine

Charliebrowne profile image
5 Replies

Hello, my youngest daughter is two and a half and since having her life has been a struggle. I guessed my thyroid was under active long before I was able to fight for it to be tested. I've been diagnosed as hypothyroid for a year now. I'm 43 and live in the U.K. I take 50mcg levothyroxine and have had a thyroid ultra scan that showed I have one nodule and areas showing past damage, but not troublesome now. My TSH has gone from 8 to 4.2 and is now considered normal. I don't feel well, I'm gaining weight. It's horrible to not only have not lost my baby weight but to have put on. I teach yoga and am a guided cycle ride leader. I can burn myself out.

Please can someone recommend how I can buy a good T3 as I think I would benefit from natural dessicated thyroid. Thank you

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Charliebrowne
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jamiface profile image
jamiface

You're undermedicated with a TSH of 4.2, that's not 'normal', that's within range, but treated hypothyroid people usually feel better with a TSH nearer to 1 (or below?)

Someone more knowledgeable than I will come along in a minute and give you a much better reply

SeasideSusie profile image
SeasideSusieRemembering

Charliebrowne If your GP has told you that you are now 'normal', presumably because your TSH is now in range then he is very wrong. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

From ThyroidUK's main website

About the Thyroid > Hypothyroidism > Treatment Options:

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

'According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.'

The booklet is by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. You can buy it from your local pharmacy or Amazon for about £4.95. Well worth buying to show your GP.

Also:

'Dr Toft states in Pulse Magazine,

"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)." '

You can obtain a copy of the Pulse article by emailing louise.roberts@thyroiduk.org.uk print it off and highlight question 6 to show your GP.

So what you need at this stage is an increase in your Levo.

You also need FT4 and FT3 testing. You won't know if you need T3 unless you have both tested at the same time to see how you are converting. If you are converting well and your FT3 is good, then adding T3 when you don't need it can cause problems.

By the way, T3 is not natural desiccated thyroid (NDT), it is a separate thing altogether. NDT contains both T4 and T3 and is made from animal thyroid (porcine usually or bovine) and T3 is synthetic and is just T3 only.

So your first step should be to see your GP, discuss the article by Dr Toft, ask for TSH, FT4 and FT3 to be tested, then see about an increase in Levo.

If you have a conversion problem you can then consider T3 which is now virtually impossible to get prescribed on the NHS and has become quite difficult to self source. Or you could consider NDT which would have to be self sourced and self funded like T3. You might also find yourself in the position of having to do all your own thyroid tests privately if you self medicate.

It would also be a good idea to get vitamins and minerals tested as these all need to be optimal for thyroid hormone to work. You need

Vit D

B12

Folate

Ferritin

Inana profile image
Inana

It sounds, and I'm no expert, like this is not a Levothyroxine issue but it is your thyroid that is failing you. I understand the frustration of doing everything to keep fit but having the weight pack on and on. It can mess with your confidence and I hope that you can get to the bottom of it. Your TSH being 4.2, from what I have read here, is still very problematic. In fact, my TSH was 2.33 and I still gained 20kgs from just breathing, so since you are medicating, forget the TSH reading and concentrate on your T3 and T4 and getting more Levothyroxine in you (upping your dose) if possible.

When you find out where to get good T3, please PM me because I would also like to know. All the best.

SlowDragon profile image
SlowDragonAdministrator

Do you know if the cause of your hypo is autoimmune, called Hashimoto's. Have you had antibodies test? Ever had high TPO antibodies ?

It's the most common cause, here in UK. Hashimoto's affects the gut, especially if under medicated as you are. Leads to low vitamin levels as outlined by SeasideSusie and extremely common to also have hidden food intolerance, most commonly gluten, but can be dairy and/or nightshades (tomatoes, peppers, potatoes, aubergines)

Before considering adding T3 or NDT we need vitamins at tip top levels and to address food intolerances. Extremely common to have very low vitamin D, folate, B12 and/or ferritin.

Don't be surprised if your GP is unaware of gut connection to thyroid issues, and particularly gluten /food intolerances aspect.

Other things that can help repair leaky gut if you have Hashimoto's, are good probiotic and old fashioned bone broth

Charliebrowne profile image
Charliebrowne

Sorry for the late reply. Everyone of you have offered me a very valuable response. I have ordered the booklet, I've emailed to get a copy of pulse. I have a drs appointment today. I'm in so much pain in my right hip. My jobs of yoga teacher and cycling leader are very much in jeapody.

I want to be referred to a rheumatologist again. Last time they gave me phisio as I was still breastfeeding.

I'm going to ask for a copy of my previous blood test in April. I have written down my hypothyroid symptoms to prove I do not feel well.

Next eeek I have a blood test booked and will request all the tests mentioned. I want to know if I have hashimotos.

I am very sensitive to gluten and dairy but the blood test did not suggest celiac disease.

Thank you again everyone. It's so overwhelming.

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