Endocrine appt

[Sk19]

Hi, I have an appointment to see an endocrine consultant in a few weeks. Referred from my GP. Interactive thyroid from 2016 and I started taking T3 a couple years after diagnosis and still do. When I have routine bloods I lower my dose or stop T3 for a few days. Sometimes it comes up in the bloods as high. My question is, I don’t know whether to tell the consultant I take T3 and have done for some time. I buy abroad when on holiday and dose myself. Will the consultant frown on my disclosure? The last bloods I had done T4 15.3 T3 I think was over 9. I live in the UK. Any suggestions will be kindly appreciated. Many thanks

[SlowDragon Administrator]

There’s no point seeing an endocrinologist without being honest and testing correctly

How much levothyroxine and how much T3 are you currently taking

What about vitamin supplements

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)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Do you normally split your dose T3

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

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/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

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

[Sk19 in reply to SlowDragon]

I understand but am anxious I’ll be frowned upon for independently taking T3.

T4 dose 150mg and T3 50mg both taken at once.

I have free blood tests which test both and do not have any medication for 24h beforehand.

[SlowDragon Administrator in reply to Sk19]

T4 dose 150mg and T3 50mg both taken at once.

I have free blood tests which test both and do not have any medication for 24h beforehand.

That’s a high dose T3 ……especially with levothyroxine as well……quite possibly too high

More typical is 15mcg or 20mcg T3 per day …..

Day before test …..split T3 as 3 doses…so 20mcg waking, 20mcg mid afternoon and 10mcg at 8pm

important to test vitamin levels

[thyr01d]

I completely agree with SlowDragon about the importance of being open and transparent with the endocrinologist. Any reasonable endo will understand, if you explain, why you self-treat with T3. One of the reasons I think it's important is because some people believe T3 causes weight loss and so try to 'trick' the medics into prescribing it and I think the endo will work out that you are taking T3 when interpreting your results even if you don't explain. I could be wrong of course, this is just a viewpoint with your best interests at heart.

[serenfach]

First things first - check that he is a thyroid specialist and not a diabetic specilist - they lump them together and the Endo's I have seen know about diabetes but not lot about the thyroid. The diabetes will go by your TSH and nothing else - it does not matter how you feel, you must fit the box!

The first thing to say is how you feel - then tell him you take T3 because when you took just T4 you just felt awful, and the T3 has really really helped. They may not take any notice of how you feel - just fit the box!

I hope it goes well and you get what you need from the appointment.

[Easylover]

I think T3 is an awesome idea. UK Paul Robinson wrote a couple of books on Recovering with T3. Just divide the doses.

[Sk19]

Hi,

So I went to my endocrine appt and told the consultant I was supplementing with T3 as well as T4. She frowned upon it and long story short, she wants to lower both my dosages slowly. She even said that she would only prescribe T3 in the UK in the most rarest of cases.

She tried to scare me with osteoporosis when older and if I had a fall I would die from it. Heart attacks, and irregular heart. Did bloods and has booked in for a follow up next month.

Tbh I shouldn’t have told her anything.

[Sk19 in reply to Sk19]

She did also say bodybuilders use it anabolic steroids with T3 to shred. I know that, and told her I’m not a bodybuilder lol. My use of T3 is to feel normal and I did mention I do not want to go back to functioning low in life when I first got diagnosed with being under.

[TiggerMe Ambassador in reply to Sk19]

So she didn't tell you to stop taking T3 but reduce which is absolutely right with a result of over 9 you are over doing it and longer term it will cause you problems, it really does cause bone loss... if she is willing to work with you to get it within range then that is a good result.

What is the range on you fT4? 15.3 could be on the low side if it's the standard range 12-22 which would make you feel grim so I would refuse to lower T4 and stat with getting fT3 within range

50mcg of T3 is a big dose when on combination you likely need less than half that

[Sk19 in reply to TiggerMe]

Eventually she wants me to stop T3 all together. I honestly don’t want to, she said maybe I’m on dependant on it - which maybe I am. I don’t want to feel horrid again and not be able to live normally. I need to function.

I think free range T4 is between 10-24 UK.

[Jaydee1507 Administrator in reply to Sk19]

T3 is not an addicitive hormone. You either need it or you don't.

If you're not happy with how your consultations are going then try and find a different Endo or private doctor.

You can email [e-mail] for a list of T3 friendly Endos.

[TiggerMe Ambassador in reply to Sk19]

Is she NHS? Was your fT3 still over 9 when you had stopped for 3 days?

[TiggerMe Ambassador in reply to Sk19]

That is going to make it way too low...

Free T4 (fT4) 15.3 pmol/L (12 - 24) 27.5%

Many people need it to be around 75%

[Sk19 in reply to TiggerMe]

So my blood test results done on the same day as my appt have come back as:

T4 : 18.4

T3: 4.5

[TiggerMe Ambassador in reply to Sk19]

What are the ranges used?

How long before the test had you taken your last dose of T4 and T3 and what size of dose?

[Sk19 in reply to TiggerMe]

T4 range 10-22 . Mine was 18.4

T3 range 3.1-6.8 mine was 4.5

Last dose taken together 150mg T4 and 50mg T3. 24h prior to bloods

[TiggerMe Ambassador in reply to Sk19]

So your fT3 is a false low as T3 has all but left your system after 24 hours, I think it has a half life of 8-12 hours?

 SlowDragon has explained further up this page how to get a proper reading

But if the Endo has now seen these results why is she looking to reduce your dose?

What are you trying to achieve by seeing her?

[Sk19 in reply to TiggerMe]

She wanted to lower my dose based on my previous bloods when T3 was like 9.

I don’t want to change anything. She wants to gradually take me off T3 and lower my T4. But I’ve been feeling tired since summer. Always feel like the sleep I’ve had isn’t enough. I do get about 8h but sometimes it’s broken with going to the bathroom at night. Honestly don’t want to change anything that could be detrimental

[TiggerMe Ambassador in reply to Sk19]

Taking too much can make you feel tired and will exhaust your adrenals trying to keep up just as much as taking too little... I'd get a properly timed test done and then you might have a better understanding of what you need to do

[TiggerMe Ambassador in reply to Sk19]

If you hadn't told her and your bloods came back high she would have taken you off medication all together and possibly put you on blockers 🤷‍♀️

[Easylover]

SK19 I wish you never told her anything. How unfortunate that she is stuck in an old model of therapy and knows nothing at all about our condition....God Help us all. I trust noone.

[Sk19 in reply to Easylover]

I know too late now. It’s only because I originally posted on here prior to my appt asking for advice on whether to tell the consultant. I took the advice and unfortunately it’s too late. Note to future self … do what you think is best for you !

[Easylover in reply to Sk19]

Same note to myself. Everything that has ever gone WRONG in my life i second guessed my gut feeling or was codependent in some way!

[Sk19 in reply to Easylover]

I think it’s good to get opinions, but then only do what YOU think is best. Lesson learnt for me.