levothyroxine not working

[skipsea330]

hi ,I'm sue ,I've been to doctors a few times to ask for a thyroid check as feeling rubbish but he just keeps saying my levels are fine ,what else can I do

[helvella Administrator Thyroid UK]

I think the first step is to get hold of blood tests going back to diagnosis - and before.

Make sure you get the reference intervals (ranges) and post them for opinions.

It's quite possible something be noticed that suggests what you need to do.

It isn't that blood test results must control everything. But without them it is difficult even to get the conversation going.

Also, let us know what makes of levothyroxine you are taking - and whether you have had to switch frequently.

[greygoose]

Hi skipsea330, welcome to the forum.

'Fine' is just his opinion. And doctors' opinions are often wrogn when it come to thyroid. They believe that anything within the range has to be 'fine' but the ranges are too wide. And everyone's 'fine' is different. Unfortunately, they do not give us the freedom to find out exactly what is 'fine' for us.

It's not that the levo isn't working. It's a hormone, not a drug, it will do its thing as best it can. But a) you have to take enough of it - and so, so many of us are under-treated - or b) you have difficulty converting it into the active form of thyroid hormone. Levo (T4) is basically a storage hormone, that doesn't do much until it is converted into the active hormone, T3. But, doctors don't understand any of that.

I agree with helvella, you need to see your blood test results. You need to know exactly what was tested - not all doctors do the right tests - and exactly what the results were, and keep your own records. So, ask the receptionist for print-outs - it's your legal right to have them - and them post results and ranges on here and we'll help you understand them.

[SlowDragon Administrator]

welcome to the forum

First step is get copies of recent results, see exactly what’s been tested

Frequently only TSH tested which is completely inadequate

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you taking

Is you hypothyroidism autoimmune

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Please add any results and ranges if you have them

Or come back with new post once you’ve got full new test results via GP if possible or privately if not

[SYLVIE15]

Hi sue

I have had the same problem. Others on this site will tell you ferritin folate vt d and b12 need to be good for thyroxin to work

I actually started taking some ferritin each day and have beren amazed how much better I feel. The biggest problem is doctors do not check this vitamin level

I used to take a multivitamin but I stopped that and took a ferritin (iron)

Instead I feel so much better in myself have more everything

I have no idea if my ferritin was low but I take a tablet each day and feel good like most of us with this illness we are in the dark and don’t know what to do and it can make you feel awful

At the start I got the thyoxin in creased to 125

But felt no better I am now back to 100 thyroxin and the ferritin tablet and feel 100 % better. It’s worth a try If course you could be low on folate or b12 or Vit d

So it’s trial and error unless you do private bloods on everything

Hope this helps good luck

Sylvia