Do I need T3?

[Jojozo]

Hi everyone, I’m feeling confused and after some advice. I went to see an NHS endocrinologist in January who took me off T3. He is the third NHS endo who has insisted I don’t need it. I was previously put on it by two separate (private) functional nutritionists because tests have showed that I don’t convert well. The last endo did a series of tests, concluded that I had a small thyroid gland, and discharged me via letter 🤷🏼‍♀️

I am 46 and peri-menopausal. I was diagnosed with an under-active thyroid in my early 20s and Hashimoto’s (again, privately) seven years ago. My TSH level has been 0.01 since I started taking the T3 seven years ago (I was on 12.5mg every morning). Before that my TSH levels were slightly higher.

I currently take 125mg of Levothyroxine per day. I have attached my blood test results from January.

I keep having terrible flare ups of symptoms, around once a month, which could be due to peri or Hashimoto’s, or a lovely combination of both!

It begins with bad pelvic/gut pains and ends up with me being bed bound for days/weeks on end with a sore throat, sinus issues, headaches, anxiety, low mood, terrible nausea, muscle aches and chronic fatigue. I may be clutching at straws but I’m wondering if T3 could help? I did still have these flare ups while I was taking it, but maybe I wasn’t taking enough?

Another functional nutritionist (a friend of a friend!) told me the other day that taking Armour Thyroid would make a huge difference to me, but obviously it’s not prescribed in the UK. I’m wondering whether I need to try and track some down independently.

Thanks so much in advance for any help!

[SlowDragon Administrator]

Just testing TSH is completely inadequate

First step is to get full thyroid and vitamin testing

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

As you have Hashimoto’s are you on strictly gluten free diet?

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 as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 did this test above

If/when also back on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

[SlowDragon Administrator]

Assuming test was done as advised

These results show

Ft4 at 80% through range

Ft3 at 56% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Improving low vitamin levels can significantly improve symptoms and conversion rate of Ft4 to Ft3

[Jojozo in reply to SlowDragon]

Thanks so much for your reply. I totally forgot (I have terrible brain fog at the moment too!) that I had a private test done in March. I’ve amended my original post with those results. I take pretty much every vitamin going. I’ve had several negative results from celiac tests, but should I still go gluten free? Thanks again.

[Lalatoot in reply to Jojozo]

We may not be allergic to gluten but we can still have an intolerance - it is a question of degree - so I would give gluten free a try.

[Jojozo in reply to Lalatoot]

Ah-ha, thank you. I do avoid it as much as possible but I’m definitely not gluten free.

[SlowDragon Administrator in reply to Jojozo]

It does need to be absolutely strictly gluten free

Watching out for cross contamination. No shared butter, jam, separate cutting mat.

If toasting GF bread use a separate toaster or get a toaster bag from Coeliac UK

Tricky eating out with friends or family.

Eating at restaurants etc getting increasingly easy as Gluten intolerance becomes more accepted

[greygoose]

Another functional nutritionist (a friend of a friend!) told me the other day that taking Armour Thyroid would make a huge difference to me,

That's only a guess on her part. Armour doesn't suit everyone, and she has no way of knowing if it would suit you.

[Harlech]

Hi. Sorry I am not the right person to give advice, as at present I myself am struggling to get help from my gp, she will only allow me 25mg levo daily. I have tried to explain that the tsh ideally be around 1 she just says no increase in levo this being now the 4th surgery I have tried am stuck & this virus hasn't helped due to no face to face appointments. I have read that you peri menopausal, & having monthly flare ups, would hrt be of help.

[Harlech]

From what I have read people are finding it very difficult to impossible to obtain ndt presently

[momindenver]

You mentioned your thyroid gland is small? Thyroid gland shrinkage is associated with a different autoimmune disease called atrophic thyroiditis.( You can have both Hashimoto's and atrophic thyroiditis at the same time.) Atrophic thyroiditis is associated with antibodies to the TSH receptor, which block the action of TSH (the opposite of Grave's disease.) These antibodies block the conversion of T4 to T3 inside the cells. Maybe this explains why you have episodes when you develop symptoms of hypothyroidism.

[Jojozo in reply to momindenver]

Apologies, I missed your reply. This is really interesting, thank you. I’m seeing another specialist so I’ll mention this to them.

[abirose311]

I take Armour prescribed by a private Endo in London. It's not impossible to get, only impossible to get on the NHS, or so it seems. I spend £21 a week but to me it's worth going without other things. I had no life at all for 20 years on Levothyroxine

[Jojozo in reply to abirose311]

Thanks for letting me know, I'm so glad it's helping you. I'm getting a blood test next week, and if my T3 is still an issue I'm going to look into getting it privately.