Can you help me with results ahead of appointme... - Thyroid UK

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Can you help me with results ahead of appointment please? I need ammunition....

Tiredofthis77 profile image
8 Replies

Hello all,

Further to my last post healthunlocked.com/thyroidu... I'd appreciate it very much if you could give your thoughts on my recent blood test results. I have an appointment with my doctor tomorrow and I would really appreciate your help in ideas on how to approach it cause I'm not getting any better. I was on 100mcg of thyroxine when I had the bloods taken and didn't take medication on the day before I took them.

I've recently had a 24-hour urine test due to stretch marks appearing on my abdomen but I'm told this is fine. Was wondering if lack of improvement could be down to low corsitol though...

TSH - 3.04 (0.55-4.78)

T4 - 16 (10-25)

T3 - 4.2 (4-7)

My main symptoms are:

Weight gain in abdomen and thighs

No appetite

Fast heart rate

Waking up in the middle of the night and not getting back to sleep

Breathlessness (sometimes sore to breath - windpipe and back)

Pins and needles all down left side (arm, hand, leg and foot)

Swelling in right foot

Hairloss

Low mood

Thanks in advance,

Tired

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Tiredofthis77
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8 Replies
greygoose profile image
greygoose

Lack of improvement is doubtless down to the fact that you're under-medicated. The whole point of thyroid hormone replacement is to bring your TSH down to 1 or under, and your Frees up to a point in the upper third of the range that makes you well. With a TSH of over 3, you are still hypo.

Doctors just don't understand that being inside the 'normal' range, doesn't automatically make your results 'normal'. The ranges are too wide. It's where in the range that the result falls that counts.

That said, some of your symptoms could be down to low nutrients. Have you had your vit D, vit B12, folate and ferritin tested?

Tiredofthis77 profile image
Tiredofthis77 in reply to greygoose

Hi Greygoose, thanks for your response. I haven’t had nutrients tested recently but I’ll request this. I was recently on 150mcg thyroxine but was clearly on too much so they put me down to 100mcg. I can’t get my free t3 up either so going to raise this too. Presume I’ll be ignored though and told I’m fine

greygoose profile image
greygoose in reply to Tiredofthis77

50 mcg in one go is much to much to drop the dose by. Changes in dose should only be 25 mcg at a time. But, in what way was it clearly too much? YOu're only over-medicated if your FT3 is over-range.

didn't take medication on the day before I took them.

So, how long was the gap between your last dose of levo and the blood draw?

I can’t get my free t3 up either so going to raise this too.

Are you taking T3 as well as levo? How much?

SlowDragon profile image
SlowDragonAdministrator

Your results suggest you are under medicated and need 25mcg dose increase in levothyroxine

TSH is too high...Ft4 and Ft3 too low

When were vitamin levels last tested

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

Do you have Hashimoto’s?

Ask GP to test vitamin levels

Pins and needles- low B12

Insomnia- low Ft3 and low vitamin D

Hair loss and Breathlessness - linked to low ferritin

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, best not mentioned to GP or phlebotomist)

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...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

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

bluehorizonbloodtests.co.uk...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Tiredofthis77 profile image
Tiredofthis77 in reply to SlowDragon

Thank you for your help, SlowDragon. I’ve been trying to find the right dose for more than 20 years and it seems the more thyroxine I take the more weight I gain - so, as well as nutrients, I’m going to raise potential adrenal issues too. That’s going to go down like a lead balloon.

SlowDragon profile image
SlowDragonAdministrator in reply to Tiredofthis77

Yes ...I gained 5 stone over 25 years on just levothyroxine

Lost over 2 stone once strictly gluten free, all vitamins optimal and prescribed small dose T3 alongside levothyroxine...more on my profile

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

Tiredofthis77 profile image
Tiredofthis77 in reply to SlowDragon

Thank you. Will take a look. It’s appreciated, as always

SlowDragon profile image
SlowDragonAdministrator

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

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