Change in dosage HELP!

[Moonlight5]

The GP says I must lower my Levothyroxine from 100 to 75 after I recent blood test. I am 5 ft 2 and weigh 72kg.I attach my results.

Please advise as I have noticed my hair is falling out more than normal.

I started on Levothyroxine Dec 22.

[TiggerMe Ambassador]

Based in what? I can't see a TSH level but your fT3/4 are both well within range? That is a big drop when you think of it as dropping a quarter of your current dose, going by your weight 115mcg is nearer the mark!

Free T4 (fT4) 14.8 pmol/L (9 - 23) 41.4%

Free T3 (fT3) 4.7 pmol/L (2.4 - 6) 63.9%

T4:T3 Ratio 3.149 

Hair loss could be low iron, lack of protein in your diet.... stress from dealing with a GP 🙃

I would refuse if you are feeling well on this dose

[Moonlight5 in reply to TiggerMe]

Thank you. I think I should pay and get the full blood works which should give a more accurate picture.GP wouldn't elaborate or explain

[TiggerMe Ambassador in reply to Moonlight5]

You actually have the best bits of the blood works there as most GP's won't test the all important fT3/4 so I wouldn't waste money on another test which they will ignore anyway.... I would just refuse to lower your dose as your bloods are well within range and you don't wish to lower them! Especially if they can't explain the need to lower, if you agree you might have a devil of a job getting them to increase later on

You could ask them to do a full iron panel to see where you are

[SlowDragon Administrator]

Contact GP

There’s no TSH result and Ft4 is only 40% through range

Refuse to reduce dose and say you are getting full thyroid and vitamin testing done BEFORE considering changing dose

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

ESSENTIAL to test vitamin D, folate, B12 and ferritin

[Moonlight5 in reply to SlowDragon]

Thanks SlowDragon I will use medichecks

I did it first thing, didn't take tablet

[SlowDragon Administrator in reply to Moonlight5]

GP wouldn't elaborate or explain

There’s not even TSH result on these results

Most people when adequately treated on just levothyroxine would need Ft4 at least 60-70% through range

Guidelines on dose by weight suggests 115mcg per day

Which is approximately 800mcg per week

And you low Ft4 suggests you’re not on high enough dose levothyroxine

[Moonlight5]

I was thinking to pay and go private and get the breakdown that way. What do you think TiggerMe

[TiggerMe Ambassador in reply to Moonlight5]

Depends what you are hoping to achieve?

I would try and educate this bunch first before thinking of paying, most people have to fork out for private tests as they don't get the fT3/4's done by their GP, you are entitled to free prescriptions from the NHS why should you have to pay privately, also it looks like you convert quite well so hopefully you will only ever need the correct dose of levo...... you have every right to refuse to drop your dose as they certainly can't justify it with these results and if you do drop you will likely feel too unwell to argue the point with them 😕 you are nowhere near overdosing.

If you would rather then write it all down and send it to them... chances are when questioned they will back peddle pretty quickly 😏

I have had to do this myself and after the initial huffing and puffing at my refusal my script was re-instated without further comment

[SlowDragon Administrator]

I would agree with TiggerMe

Write to /email GP

Point out Ft4 is only 40% through range

Therefore you don’t think you should be reducing dose levothyroxine

Request full iron panel including ferritin as you have hair loss and understand this is often linked to being anaemic

Also please can GP test B12, folate and vitamin D

[TiggerMe Ambassador in reply to SlowDragon]

Absolutely SD, hold firm and ask for more 😁 you can even mention Thyroid UK as your source of information if they would like to get up to speed 😉

You could add that a rise is recommended rather than a decrease due to low fT4

[Moonlight5]

I appreciate the guidance thanks it can be quite overwhelming

[TiggerMe Ambassador in reply to Moonlight5]

It can be daunting as we assume they are doing their best for us... once you get over the shocking fact that this isn't the case and realize you need to wise up, question things and self advocate to make sure you get optimal treatment..... it'll still be up to you to add supplements as they are unlikely to show any interest, even though very necessary for the hormones they provide to actually work

Don't be afraid to question them as the decisions they make you have to live with 🤗

[crimple]

Moonlight5, I suffered from dosing by TSH rather than my symptoms. Then I found this site and learned a lot , more than my docs!! So when they tried to reduce my dose yet again I was ready.

There were dire warnings about osteoporosis and heart issues. I told them I prefer a life to an existence and they now ignore my 0.05 TSH readings.

My T4 and T3 are always in range( well they were until the upset with reduced efficacy of Accord 100mcgm) getting back on track now with vencamil.

Doctors are not there to dictate, our health is meant to be a partnership with the medics!

[Sparklingsunshine in reply to crimple]

When I got diagnosed I was told at the outset that my surgery GP's dose by TSH, a locum registrar I saw, so not even a fully fledged GP told me they do this, so any hope or expectation that they were going to help make me well died on that day, RIP. Frankly might as well burn entrails or consult the runes, its about as up to date and scientific as the methods the NHS uses.

[Vixen54]

Why are they lowering dose that reading looks normal to me.

[Digger0]

I'm 5ft 6ins, weigh 63kg and am on 100/125 on alternate days, and I'm 72! The "normal" dosage is :

Adult

Initially 1.6 micrograms/kg once daily, adjusted according to response, round dose to the nearest 25 micrograms, dose to be taken preferably 30–60 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.

Elderly

Initially 25–50 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably 30–60 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.

So according to your weight you should be on 115.2! When did you last have a dose change?

[Humphre]

Don't lower your levo my GP tried same got the medical centre pharmacist to try too. I'd already dropped from 75/100 every other day but felt awful so managed to get 100mcg daily started to feel better, private blood tests & GP very worried about suppressed TSH level I refused & I'm concentrating on vitamin levels. Good luck it can be hard work but loads of help/advice/alternatives here👍

[Shelleyblue]

Your fT4 and fT3 are well within range. You don't need to change anything. He doesn't know what he is talking about. Ask to be referred to an endocrinologist, don't change anything yet. Do you know what your TSH is at present ? He is probably focusing on just the TSH LEVEL which is wrong when you are taking levothyroxine. Do not agree to change, only agree to be referred to an endocrinologist. :/ If you are feeling hypo symptoms more it could be you need more levothyroxine or even need to add liothyronine (t3) tablets , in which case you need to be referred to an endocrinologist. Ask for your folate, B12 and iron to be checked too. And vitamin D3. Good luck.