Levothyroxine dosage and no thyroid : I have had... - Thyroid UK

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Levothyroxine dosage and no thyroid

MrsBargirl profile image
13 Replies

I have had a tt, my dose is 175mcg levothyroxine daily.

My question is does that dose just last for the day or does it build up and be stored somewhere?

Sorry if this sounds silly!!

Thanks Sarah

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MrsBargirl profile image
MrsBargirl
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13 Replies
shaws profile image
shawsAdministrator

I'm sorry you've had a TT and the first thing I will ask you is "how do you feel on this dose?"

It's not a silly question, especially if you don't feel very well.

T4 is a storage hormone and has to convert to the Active Thyroid Hormone which is T3.

T4 is the prescribed hormone replacement but doesn't suit everyone. T4 is also an inactive hormone and it has to convert to the 'Active' thyroid hormone, i.e. T3 and it is T3 that is required in our millions of T3 receptor cells.

Many thousands seem capable of converting levo easily but others have difficulties.

The aim is a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the ranges. Doctors rarely test the Frees.

This is the procedure if you're having a blood test for your thyroid hormones. Blood draw has to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose and the test and take afterwards. This helps keep the TSH at its highest as doctors seem to only take notice of the TSH (thyroid stimulating hormone - which is from the pituitary gland).

The normal way is to take our dose when we awake with one glass of water and wait an hour before eating. Food can interfere with the uptake of the hormones.

Ask GP to also check B12, Vit D, iron, ferritin and folate. All have to be optimal.

Always get a print-out of your results for your own records and post - with the ranges - for comments.

MrsBargirl profile image
MrsBargirl in reply toshaws

Hi, thanks for your reply, I dont feel 'right'. I did phone my gp but because of covid they arent letting me come in to get bloods done and trying to get my test results is like getting blood out of a stone! The dr will begrudgingly tell you the values.

Does that mean I store what I'm taking or does it just last daily, from today I've increased by 25mcg.

SlowDragon profile image
SlowDragonAdministrator in reply toMrsBargirl

You will need to test bloods 6-8 weeks after any dose change (or brand change) in levothyroxine

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

Low vitamin levels are extremely common when taking levothyroxine

What vitamin supplements are you currently taking?

When were vitamin levels last tested?

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...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

Batty1 profile image
Batty1 in reply toMrsBargirl

Hi MrsBargirl, I have no thyroid and all felt horrible on T4 . Im personally a believer that you make NO HORMONES so you must replace them all by taking a combo of T3/ T4.

What issues are you currently having and the Reason for having Thyroidectomy ?

Always get a copy of your test results.

MrsBargirl profile image
MrsBargirl in reply toBatty1

In 2007 I had tt, there was some left and over time grew and was growing pushing into my windpipe. So I had to have another tt in 2019.

During the 1st tt my right vocal chord was paralysed but that was repaired in 2008.

I feel like lead, gained weight (but covid not helping with that one) I get so hot and sweat like a pig! Or I'm cold, never happy medium. Have IBS problems and use eye drops daily for gritty eyes but think that's just allergies.

High dose pain relief for nerve damage caused by the surgeries.

Batty1 profile image
Batty1 in reply toMrsBargirl

I went from fit to fat overnight after my thyroidectomy and developed a variety of other issues, like psoriatic arthritis that has destroyed my body and very high cholesterol (always had this problem) But it has went through the roof after my surgery.

I questioned my current Endo about thyroid tissue growing back (he said no) that what we think is tissue growing back is actually just the remaining tissue after surgery since they cannot possibly get it all and it can become inflamed or in my case cancerous again .... hmm

jimh111 profile image
jimh111

Levothyroxine has a seven day elimination half-life. That means that if you take 100 mcg levothyroxine today there will be 50 mcg of that levothyroxine left in your blood in a week’s time and 25 mcg a week later.

Since you take levothyroxine daily it gradually builds up and reaches a stable level after four to six weeks. Without going into the maths we have about 10.4 days worth of levothyroxine. This is why levothyroxine gives stable hormone levels, it varies by just under 10% each day.

Thyroxine circulates in the blood and is bound to proteins, only a very tiny fraction is unbound or ‘free’. It is the free component that is available for use.

MrsBargirl profile image
MrsBargirl in reply tojimh111

Thank you that makes sense to me now

pennyannie profile image
pennyannie

Hello MrsBargirl

Can I just add a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T4 - Levothyroxine is a storage hormone and the body runs on T3 and I read T3 is about four times more powerful than T4 with the average person using about 50 T3 daily just to function.

Your body needs to be able to convert the T4 into T3 and this can be compromised if you don't maintain your vitamins and minerals, especially ferritin, folate, B12 and vitamin D optimal in range and " not just somewhere " in a NHS range, and you may therefore need to supplement these yourself.

Some people can get by on T4 alone, some people simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring both these essential hormones into balance and to a level acceptable to the patient.

The thyroid is a major gland responsible for full body synchronisation including your mental, physical, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.

As you will see from the above, since you have ' lost ' your thyroid you have lost this little bit of your own natural thyroid hormone production of T3 - it maybe only with a measure of about 10 but this actually equates to about 20% of your overall well being and I think overtime this could compound one's overall health and well being.

MrsBargirl profile image
MrsBargirl

My gp isn't taking anyone in for blood tests due to covid, they dont give print outs of results either, I get all that from my pain dr! Stone ages here! Gp told me to adjust meds myself and see how I feel, upped my dose by 25mcg from yesterday.

SlowDragon profile image
SlowDragonAdministrator in reply toMrsBargirl

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Thousands patients forced to get FULL thyroid and vitamin testing privately

MrsBargirl profile image
MrsBargirl

My practice has an online feature but just to order medication, they had the function to make appointments but that has been removed. A new gp has taken over and has made lots of changes. Each time I try to get my results they just tell me they're normal and when I ask the values, the receptionist says they cant give it out and the drs seem guarded of releasing them. So now I'm just managing my levels on my own. But I will look in to getting private testing done.

Batty1 profile image
Batty1 in reply toMrsBargirl

The desk lady is just lazy and doesn’t want to be bothered to give the results... tell her to email the copy to you I’m sure that’s just one click instead of 2 .

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