Feeling relieved: After never feeling great since... - Thyroid UK

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Feeling relieved

66olives profile image
8 Replies

After never feeling great since before starting on levothyroxine, I had a endo apt yesterday. I feel really confident moving forward. She has prescribed liothyronine, going on my private tests, and ordered blood tests, including one for my adrenal levels I believe.

She even asked if I'd taken my levo, because it gives a better base line reading if you have not. Unfortunately, there was no lab where I was, and the first test before mid-day I could book is Tuesday. She has writing to GP to prescribe T3, and said if GP cannot/will not prescribe it, I will have to collect from the hospital pharmacy.

Blood tests seems to include everything but T3. But she said she really wants to rule out adrenal insufficiency. I'll be having a look at trusted sites to see exactly what that is.

Just want to say thanks to all the support I receive on here.

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66olives
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8 Replies
HealthStarDust profile image
HealthStarDust

I am pleased for you that you may have found a decent endocrinologist 🫶🏽

66olives profile image
66olives in reply to HealthStarDust

NHS too. My appointment with a member of her team was postponed and she took over. :-)

HealthStarDust profile image
HealthStarDust in reply to 66olives

Gosh! We all should have access to this person.

TiggerMe profile image
TiggerMe

👏👏👏🤗

Excellent! Is she on the TUK list of good ones?

DippyDame profile image
DippyDame

This may seem like good news but you need to consider the following...

Your labs 3 months ago taking 75mcg levo

FT3 3.1 pmol/L (range 3.1 - 6.8 pmol/L) 0%

FT4 15.3 pmol/L (range 12 - 22 pmol/L) 33%

TSH 1.5mu/L (range 0.27 - 4.2 mu/L)

Vit D 64 nmol/L

She even asked if I'd taken my levo, because it gives a better base line reading if you have not.

That is not incidental, it's important.

For an acccurate reading we are advised to test 24 hrs after last levo dose so that it has settled in the system.

Blood tests seems to include everything but T3. ...strange!

FT3 is the most important test, followed by FT4!

For good health every cell in the body needs to be flooded with T3 in a constant and adequate supply...

Initially this is by T4 to T3 conversion in body tissues, supported by optimal vit D, vitB12, folate and ferritin.

We usually raise FT4 closer to the top of range before adding T3....and we must optimise supporting nutrients.

With FT4 at 33% through ref range you had room to raise Levo dose

I suspect TSH fixation got in the way

thyroidpatients.ca/2021/07/...

That is likely to initially be the easier route re supply/ prescriptions, than obtaining and retaining a T3 supply

Your vit D is far too low

Have vit B12, folate and ferritin been tested? Vital these are optimal to support T4 to T3.conversion

You mention adrenal insufficiency....has this endo suggested a short synachten test?

gloshospitals.nhs.uk/our-se....

yourhormones.info/hormones/....

She has writing to GP to prescribe T3

The endo should be prescribing T3 for a 3 month trial period before asking GP to take over prescribing. It all sounds rather vague.

I don't agree with all in this but it explains how the system works and what you may encounter...

england.nhs.uk/long-read/li....

I need high doseT3-only to function so have experience of T3 use. I'm not trying to "burst your bubble" but I don't think this endo is fully conversant with thyroid hormones ...probably a diabetic specialist. But, I hope she can help you.

Hopefully you will feel better with the new protocol.....how much combo T4 / T3 is she prescribing?

Good luck..

66olives profile image
66olives in reply to DippyDame

The consultant is aware of when the last bloods were taken, and whst dose I was on. I have rechecked and FT3 has been requested. This is to do with my brain fog and tiredness.

NHS have never tested TF3, or thyroid peroxidase Ab. She is testing everything. I have two sheets of tests. This has never been done by GP. My vit D will be nice and high. Spent two weeks in Egypt, during September. Normally I struggle to get it above 55. But the under tongue spray is helping.

I am aware it is three month trial, but she is confident it will help. I have a phone number to request my 3 month prescription. So it is OK.

DippyDame profile image
DippyDame in reply to 66olives

Ah.....that is much clearer now...thank you.

Fingers crossed you make good progress once your Frees are at therapeutic levels.

Marianne0915 profile image
Marianne0915

Very helpful information from DippyDame, best of luck going forward.

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