Can't function normally: I suffer with... - Thyroid UK

Thyroid UK

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Can't function normally

Ronnierenault
Ronnierenault

I suffer with underactive thyroid and have been prescribed levithyroxine 75mg.i have been on it now for a couple of years and to be honest, it hasn't made me feel any different at. I do suffer with fibromyalgia which I know doesn't help but I am constantly really tired, like by 8pm, I'm in bed, I just cannot lose weight even though I eat a healthy diet, and recently I am constantly hot. I'm going out in just a tee shirt and everyone around me is wrapped up in coats and hats!!! When I'm indoors, I am having to keep on going outside to cool down even though I have no heating on and the windows all open. Is anyone else suffering like this and have they been given any answers??

4 Replies

Hi

Welcome to the forum.

In order to see what’s going on we ask that you put your latest thyroid blood results on here for the experienced members to advise.

You are entitled to a copy of your results by law, go in ask the GP receptionist for the official copy of your results (including lab ranges)

75 mcg of Levothyroxine is a small dosage to still be on. 50mcg is a starter dosage and then the procedure is an increase of 25mcg every 6 weeks with blood tests every 6 weeks, testing TSH, T3 & T4.

Just testing TSH, is no good.

Best Wishes

Peanut31

Thank you. I'll do that. X

SlowDragon
SlowDragonAdministrator

First thing is, do you have any actual blood test results?

if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018

75mcg Levothyroxine is not very much, you sound like you're not on high enough dose

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you do your tests?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

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. Though it is the only one for lactose intolerant patients

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

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

Dose of Levothyroxine should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Often vitamins need regular testing and supplements to maintain levels

SlowDragon
SlowDragonAdministrator

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...

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