Tiromel: I am so angry tonight. I had a very... - Thyroid UK

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Tiromel

yesilkedi profile image
16 Replies

I am so angry tonight. I had a very frustrating telephone consultation with my GP today who was trying to tell me that the tiredness and muscle aches I am having at the moment is down to being depressed and I need counselling. I have had hypothyroidism for 15 years so think I know when I need a blood test to check my levels but I really had to stand my ground to get what I wanted and then it was only granted grudgingly. She said well you had a blood test 9 months ago after an increase in dosage and it was normal!

I am currently taking 150mg of Levothyroxine daily but don't feel at all well. I am really interested in supplementing with T3 but I know I won't get any support from her so am looking for advice on this forum. I can actually source Tiromel very easily and cheaply but would I be better talking to another GP, albeit one abroad and seeing what he thinks, maybe taking the results of the blood test with me when I travel?

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yesilkedi profile image
yesilkedi
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16 Replies
Lalatoot profile image
Lalatoot

Post your results on here and we will let you know what we suggest.

SeasideSusie profile image
SeasideSusieRemembering

Yesilkedi

Welcome to the forum.

Why are you interested in taking T3?

As a start, you could post your latest test results on the forum. We have many experienced members who can interpret them, and many experienced in taking T3.

For a full picture we need to see results and reference ranges (ranges are important as they vary from lab to lab) for the following :

TSH

FT4

FT3

Thyroid antibodies

And because it's important to have optimal nutrient levels before starting T3 :

Vit D

B12

Folate

Ferritin

yesilkedi profile image
yesilkedi in reply toSeasideSusie

Thank you, I will post them when I have had my blood test. I suppose after reading about T3 on here I wondered if it might help as I struggled for so many years to even get diagnosed with hypothyroidism and even now I just don't feel stable. Even when I have had my dosage increased, within a few months I am back to being tired, no energy and achy muscles

SeasideSusie profile image
SeasideSusieRemembering in reply toyesilkedi

When doing thyroid tests we always advise

* Test no later than 9am, this is because TSH is highest early morning and lowers throughout the day. To avoid a reduction in dose or when looking for an increase we need the highest possible TSH.

* Nothing to eat or drink except water before the test. This is because some foods lower TSH and coffee and other caffeine containing drinks affect TSH.

* Last dose of Levo 24 hours before the test. This is because taking Levo before the test means it measures the last dose and gives a false high FT4, any longer and it gives a false low FT4.

* If you take a Biotin supplement or B Complex you should leave this off for up to 7 days before the test as it gives false results when Biotin is used in the testing procedure (which most labs do).

Optimal nutrient levels are needed for thyroid hormone to work properly and low levels or deficiencies can bring their own symptoms too.

If your GP can't or won't do all the above tests, we have recommended private labs that offer fingerprick tests to do at home (or venous blood draw can be arranged at extra cost).

Kowbie profile image
Kowbie in reply toyesilkedi

Hello sorry you feel like you do but I feel exactly the same it would be nice to know if t3 would make a difference I’ve been like it a good 30 years and I really don’t know what normal feels like hope you get sorted kowbie

SlowDragon profile image
SlowDragonAdministrator

GP unlikely to test more than TSH and Ft4

What vitamin supplements are you currently taking, when were vitamin levels last tested

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Do you always get same brand levothyroxine at each prescription

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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)

Is this how you do your tests?

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

List of private testing options

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

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Come back with new post once you get results

PixieElv profile image
PixieElv

Hi yessilkedi

I am sorry to hear that you are not feeling well and that your GP is not listening. Why do they tell us we are depressed when it’s clearly our hormones?

As to T3, it is very tricky and far from the ‘holy grail’ we think it is.

i thought it was the answer to my hypothyroidism problems and it turned out to make it much worse. I’ve learnt through my own experience and through the knowledge of people on the forum, that it is difficult to introduce, dose and tolerate. It can be difficult to source and expensive as well.

I gave up with it after 2 separate attempts because it made me feel very ill.

You might want to try a higher dose of Levo before you try T3.

Best of luck and stand your ground with your GP!

Josephineinamachine profile image
Josephineinamachine in reply toPixieElv

Have you stopped your T3 now? ☹️ I’m so sorry it didn’t work for you. Have you ever tried NDT? I keep thinking about that but it seems very confusing and complicated to me.

PixieElv profile image
PixieElv in reply toJosephineinamachine

HiyaYes I have. I know I may not have given it enough time but after 4 weeks, 7lbs weight gain, total all day exhaustion, joint pain and complete brain fog I’ve stopped.

I’m back to Levo and I’m feeling loads better. I’m trying to take my Levo dose distributed across the day to see if that helps with the afternoon exhaustion.

Fingers crossed.

I’ve not tried NDT. Does that work for you? X

Josephineinamachine profile image
Josephineinamachine in reply toPixieElv

Good to try splitting the T4. I may end up going back to that alone. Not sure yet but have a hunch… I’ve not tried NDT but it seems a lot of people get on well with it. Am worried about supplies though (and changing meds yet again because changing meds and doses causes so many problems!). So fed up with this thing. Glad you’re feeling better for now though 😊

Batty1 profile image
Batty1

Your appointment sounds just like mine yesterday… I wonder why are Endo's and GPs so hell bent keeping us ill and then calling us depressed.

PixieElv profile image
PixieElv in reply toBatty1

It’s crazy, right?! It’s almost like they get a bonus for handing out AD?! Depression is debilitating, but it’s so different from hypothyroidism. I had to explain it to my GP.

JAmanda profile image
JAmanda

I guess this is why some of us just take matters into our own hands and get tested privately then self source meds to supplement nhs meds… get tested then you’ll know how things are and you can decide what to do. I needed my T3 over 6.

yesilkedi profile image
yesilkedi

That's why I was thinking of consulting a GP in Cyprus and discussing the possibility of taking Tiromel which is freely available in the Northern part without a prescription, it's cheap too. I am just so fed up of feeling unwell all the time and being told basically it's all because I am depressed.

Mistydeb01 profile image
Mistydeb01 in reply toyesilkedi

If you need to travel there, I would give their drs a try, you might get more sense out of them…let’s face it they can’t get much worse than the UK’s. A lot of ours are terrible for a lot of things, most things are blamed on depression. Wish you luck x

Cup-cake7 profile image
Cup-cake7

Hi yes very similar circumstances sadly gp doesnt have the training and my thinking is if they dont test t3 at the same time how can they get a full picture of how you convert?, some may say RT3 should also be assessed at same time? My blood numbers are finally ‘good’ on paper but i feel like you however im unsure of my supplement results as not had a private test for a while so this is first point of call. I am seeing doc next week and hoping i can persuade for the supplements to also be regularly tested lots of Good wishes

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