Update I had a discussion with the endocrinolog... - Thyroid UK

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Update I had a discussion with the endocrinologist today I think I need to be more assertive next time . Will I NEED T3

Toddy66 profile image
24 Replies

He also agreed with the nuclear dr . He said I was slightly over but I told him how I felt and he agreed also to keep me on 125mg levo for next month until next blood test .

My results were tsh 0.04 ( said I’m over as my tsh is suppressed? T4 20.1 ( 11-20) t3 4.8 (3 - 4.9) . I did say to him I thought my t3 was to low it would be better over 5 but he said it was fine and within range :-( . My last blood test prior to my graves reappearing was tsh 7-3 they didn’t do the t3 or t4 so no results other than this. I asked about testing my vitamins and he said it wasn’t needed. Looks like I’ll have to get my own blood test done privately then for vitamin levels etc.

Thank you all for your advice just updating my last post . Hope everyone is as good as they can be x

He did actually say they were thinking of putting up the range to 6 for T3 my reply was . Yes you should do it . I’m a bit confused to why different endo/ drs would be using different ranges anyway ? He also said looking at my latest bloods he thinks my levo dose should be 100 mg not 125 as they are at present . I don’t feel hyper at all very sluggish muscle pain constipated , he told me to eat more fibre , don’t think I’m going to be heard at all . 🧐 next bloods are 10th feb , see what happens then !

I feel like a slug have put on a lot of weight hardly eat and I’ve been slim all my life I hate this it’s getting me really down would T3 help and where can I get it ? Thanks in advance . Or is there a supplement I can take to help with the conversion , I already take selenium .

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SlowDragon profile image
SlowDragonAdministrator

Refuse to reduce dose

Do you always get same brand of levothyroxine

Which brand

What vitamin supplements are you currently taking?

Get full thyroid and vitamin testing done before that meeting

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. EXTREMELY important to test vitamin D, folate, ferritin and B12

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)

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Come back with new post once you get results

Toddy66 profile image
Toddy66 in reply to SlowDragon

The brand is accord I’ve asked the pharmacist to give me same brand Just waiting for my next prescription and we shall see . Can I actually say your not lowering my dose ? I’ve just looked at all the private blood test you have rec. and I will send off for them Tom . Thank you slow dragon .

SlowDragon profile image
SlowDragonAdministrator in reply to Toddy66

If Ft3 is not over range....yes you can argue you are not over medicated

Accord don’t make 25mcg.

Do you cut 50mcg in half?

Important to have OPTIMAL vitamin levels

What vitamin supplements are you currently taking?

Toddy66 profile image
Toddy66 in reply to SlowDragon

Ok thank you . Accord is the 100 mg the 25 is wockhardt so sorry . Vit d 1000 selenium 200 vitamin b12 and b 6

SlowDragon profile image
SlowDragonAdministrator in reply to Toddy66

Do you mean B12 and folate (B9)

Vitamin D dose may not be high enough, especially in winter

Come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator

As you have Graves’ disease are you on strictly gluten free diet....or tried it

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Toddy66 profile image
Toddy66 in reply to SlowDragon

Ok will do . I’ll try a gluten free diet and I’ll also have a blood test . Thanks for the advice once again .

SlowDragon profile image
SlowDragonAdministrator in reply to Toddy66

Recommend getting coeliac blood test first

pennyannie profile image
pennyannie

Hey there again :

Ok I too don't understand how they can move the T3 goal posts :

I've never seen a T3 range like this - 3 - 4.90 ???

Most blood tests for T3 are in a range of 3.10 - 6.80 - I do know it depends on the lab used but now I am very curious : Most T4 ranges are 12 - 22.00 ;

Do you have any other blood tests from the same hospital - do you see different T3 ranges ?

So, you are still not over medicated - even with this range, and do not need a dose reduction, your feedback loop is broken, your TSH is irrelevant, as you must be treated and dosed on T3 and T4 blood test results.

It is also known that the TSH reading in Graves patients is an unreliable measure of anything, as we can have antibodies attached to our TSH receptors, which is how we first went into overproduction but since the gland has now been burnt out, there is nothing left there now, to " revv up" and send overactive.

The RAI doesn't remove the antibodies which can sit there on TSH receptors for years distorting TSH readings.

Suggest you read up :

Tired Thyroid - From Hyper to Hypo To Healing : Breaking the TSH rule by Barbara S Lougheed - just checked it's on Amazon and a Kindle ?

Suggest you organise a full thyroid panel with the vitamins and minerals and let's see where we go from there when you post the results and ranges back on here for considered opinion.

I'm sorry you felt as though you didn't get very far with these doctors, maybe also get a print out of the Thyroid UK list of recommended endocrinologists and see if there are any near you that you could be referred to through your doctor.

The symptoms you describe are those of someone who is hypothyroid and not of a slug :

I feel I was up against similar dogma within the NHS, but we can turn this around as many of us on here know only too well.

You may well need T3 - Liothyronine but let 's just wait a little longer as no thyroid hormone replacement works well if the vitamins and minerals are not optimal so it's a question of doing the ground work first, and getting everything else optimal and then the transition should be relatively smooth.

Toddy66 profile image
Toddy66 in reply to pennyannie

Thanks that’s why I was confused as the ranges were different from what I’ve read on here I’m going to phone him on Monday and ask for a call back I want to be sure of the ranges their using but he definitely said to me ‘ we are thinking of putting the range up to 6 ‘ that was for t3 when I said I’d rather my t3 was over 5/. Are they just trying to fob me off I really feel like this is the reason now . I am getting my vit bloods done etc so will post results on here when it’s done . Thanks for all your help x

pennyannie profile image
pennyannie in reply to Toddy66

Hey there - I don't know but it does sound " odd " :

Maybe just ask for a fuller explanation as you are confused by what was said and request copies of this blood test with the ranges, plus your back history.

Do you have any previous blood tests to hand as if they re from the same hospital they are more than likely with the same laboratory.

pennyannie profile image
pennyannie in reply to Toddy66

Hey there - just another thought :

Could you speak with the endo secretary and just ask him/her to email all your blood tests and ranges - so you can keep your records updated :

It maybe quicker than waiting for a call back and you may then be better prepared to then speak about your situation.

You have a legal right to copies of all blood test results so you are not asking anything unusual.

DippyDame profile image
DippyDame

Suggest you test, and if necessary optimise, vit B12, vit D folate and ferritin before thinking about adding T3.....which I suspect you may eventually need. Sadly changes have to be made step by step, and slowly, to allow the body to adapt.

I'm wondering if you may have a form of thyroid hormone resistance as well as possibly having poor conversion. Turned out this is my problem....it is complicated, but very basically means low tissue/cellular T3.

Serum T3 levels will be high but, due to some form of hormone resistance,.. the hormone isn't reaching the cells where it does it's work.

The cells need a constant and adequate supply of T3 for good health. It means you need a lot of T3 to overcome the resistance....but try convincing medics who are now trained to dose by TSH which I'm told by an expert, is not the way to go.

Not sure what he means about putting up the T3 range. ....any change would be made by the lab and different labs use different ranges.

He is probably suggesting you lower your dose because FT4 and FT3 are high in range and this is reflected in a very low TSH which usually leads them to immediately think of overmedication!

I'd be inclined to stick with your current dose, optimise nutrients which are mportant to support thyroid function, then have a full thyroid test including nutrients in 6/8 weeks.

You will most likely need to test privately. SlowDragon has given you all the details you need.

That may be all, you need to do but you are absolutely not a slug, you are wrongly medicated. I lost 3 stone when I sorted out my medication....so all is far from lost!! If that doesn't improve things then it's time to consider T3. Many of us self source and self medicate ...but that is possibly for later. Nutrients first.

I can only refer to my personal experiences, I'm not a medic.....details in my profile.

Take care.....this can be sorted!

Best...

DD

Toddy66 profile image
Toddy66 in reply to DippyDame

Thank you for your help much appreciate .

PixieElv profile image
PixieElv

Hi Toddy66Have you looked at your female hormones? My hypothyroidism was confused with menopause for 4 years as some symptoms are the same (brain fog, sluggishness, muscle aches, IBS...).

Worth checking all your hormones and looking into that.

Good luck and all the best

Meanbeannyc profile image
Meanbeannyc

I’m jealous of your conversion. Why do you need T3?

Lotika profile image
Lotika in reply to Meanbeannyc

Meanbeannyc’s comment really interests me, as I had also thought it was funny that the fT4 and fT3 numbers would be my dream too! But they’re obviously not right for you, or not right for you with vitamin levels however they may be, or maybe you need T3 higher than that to feel well... It would all be so much easier if we all felt well on the same numbers, wouldn’t it?!

Fingers crossed that a vitamin test helps to provide some answers for you.

Toddy66 profile image
Toddy66 in reply to Lotika

Thank you

Toddy66 profile image
Toddy66 in reply to Meanbeannyc

I don’t know if I do I was just wondering because I’m feeling so terrible I would like the T3 slightly higher I thought it might make me feel better but as I’ve been advised to test all my vitamin levels etc I will do this first x

Meanbeannyc profile image
Meanbeannyc

A few days ago your tsh was 23 and today it’s 0.04?

Toddy66 profile image
Toddy66 in reply to Meanbeannyc

Yes cos that was my last bloods from November tsh was 23 , bloods from last week was 0.04 ! I was on 50 mg levo but when my bloods came back end of November the dose was increased to 125mg hope that’s a tad clearer now .

Meanbeannyc profile image
Meanbeannyc in reply to Toddy66

On the same dose?

Toddy66 profile image
Toddy66 in reply to Meanbeannyc

How is 50 going to 125 the same dose ? First dose of levo was 50 bloods came back tsh 23 so my levo was put up to 125 then last blood test last week my tsh read 0.04 .

Meanbeannyc profile image
Meanbeannyc in reply to Toddy66

Oh! Gotcha! Okay. That’s why I asked

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