Do I need thyroxine?: I have exhaustion and... - Thyroid UK

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Do I need thyroxine?

Flower222 profile image
16 Replies

I have exhaustion and results a bit like someone else but my GP says my thyroid is normal. I saw your post a few weeks ago. I don't want to feel worse.TSH 6.22 (0.27 - 4.2) and I am also worried that I can never stop.

FT4 14.5 (12 - 22)

FT3 4.7 (3.1 - 6.8)

What shall I do?

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Flower222
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

TSH of 6 is not normal

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

You should have thyroid levels retested 6-8 weeks after first abnormal test

With two separate tests with TSH over 5 and symptoms you should be offered trial on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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 TPO and/or high TG 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.

NHS won’t test TG antibodies unless TPO are high

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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

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 BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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

support.medichecks.com/hc/e...

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

Flower222 profile image
Flower222 in reply toSlowDragon

Thank you SO much for this detailed reply

Jaydee1507 profile image
Jaydee1507Administrator

Is this the first time you have had results like this?

You need 2 TSH results above normal 3 months apart, taken by the NHS to begin treatment. This is stated in the NICE guidelines.

nice.org.uk/guidance/ng145

Some doctors are more conservative than others so do see a different doctor.

When you have a blood test, book it for 9am or earlier when TSH is highest. Do the test fasting, only drinking water before the test. This gives consistency in your results.

Can I ask what is worrying you about taking Levo for the rest of your life?

Flower222 profile image
Flower222 in reply toJaydee1507

I have virtually never seen a doctor and don't like the idea of taking tablets at all. I am tired but ok. I think.

I have only done the one blood test so will repeat in 3 months and hope it was a mistake as the ft3 and ft4 are normal and most posts here seem to dismiss the TSH. That was the only abnormal thing. I am working long hours which is possibly why I am so tired

Jaydee1507 profile image
Jaydee1507Administrator in reply toFlower222

Levothyroxine might be a tablet but at the end of the day its not a drug as such but a hormone. It directly replaces what your own body can't do anymore.

The TSH is often dismissed by patients once we are on replacement hormones. Its actually a fairly good marker (most of the time) of if your body is getting enough thyroid hormone. So for diagnosis its a good thing to take note of it.

Every cell in your body needs thyroid hormones. Symptoms can stack up over time and include many body systems.

It would be really good to get your vitamin levels tested as when we are hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3?

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Flower222 profile image
Flower222 in reply toJaydee1507

Thank you SO much for taking the time to write. I am very grateful

greygoose profile image
greygoose

I am also worried that I can never stop.

You won't ever be able to stop thyroid hormone replacement. Not because you started it but because you are actually pretty hypo and that doesn't go away. It's for life. Thyroids cannot regenerate or recover. And you cannot live without thyroid hormones so you have to take them exogenously.

Levo is not meant to cure the thyroid, you can't do that. It is thyroid hormone replacement. Taking thyroid hormones will make you feel better, but it won't cure anything. So, what you should be worrying about right now is the fact that your ignorant doctor is saying your thyroid is 'normal' when it so obviously isn't. Ask him what he thinks the range is for if he's going to ignore it? :)

Flower222 profile image
Flower222 in reply togreygoose

It is probably me wishful thinking as well as my doctor. My GP is very nice and she (not he) is probably saying what I want to hear

greygoose profile image
greygoose in reply toFlower222

Your GP is doing you a great diservice. She's not there to tell you what you want to hear, she's there to tell you the truth about your health. Your results are far from 'normal' and you are hypo.

I have only done the one blood test so will repeat in 3 months and hope it was a mistake as the ft3 and ft4 are normal and most posts here seem to dismiss the TSH.

I have the impression you don't really know much about thyroid, do you.

TSH is a message from the pituitary to the thyroid to tell it when to make more thyroid hormone.

The thyroid hormones themselves are T4 and T3.

TSH 6.22 (0.27 - 4.2)

FT4 14.5 (12 - 22) 25.00%

FT3 4.7 (3.1 - 6.8) 43.24%

So your TSH is well over-range, which is telling us that the pituitary is not happy with the levels of T4/3.

Your FT4 is only 25% through the range. If it were 'normal' (euthyroid) it would be about 50%, with the FT3 just slightly lower.

But your FT3, whilst low, is higher than the FT4, which is not 'normal', and is a sure sign of a failing thyroid.

You cannot just look at these three result as three separate entities. You have to look at how they fit together, and what that is telling you - not that a doctor would know that! So, although the thyroid hormone levels are within the range, they are only within the range because of the high stimulation the TSH (Thyroid Stimulating Hormone) is putting on the thyroid. And, even so, they are much too low to make you well.

I very much doubt if there could be any mistake because the three numbers fit together to tell the tale of a sick thyroid.

As for the TSH, no, we don't give much credence to the TSH, not when it is tested on it's own. As I've explained above, you need the three numbers to get the full story. So, what we don't like is doctors that only test the TSH and diagnose/dose by that alone.

TSH is a pituitary hormone, and doctors assume that everyone has a perfectly functioning pituitary. Which is not true. Just as the thyroid can fail, so can the pituitary, which makes the TSH unreliable when tested alone. Doctors assume that if the TSH is under-range/suppressed then you are taking too much thyroid hormone. Which again, is not necessarily true. Because the cells of the pituitary do not act like the cells in the rest of your body, so the pituitary can be satisfied with the levels of thyroid hormone, and stop producing TSH, but the rest of your body can still be hypo, with not enough thyroid hormone. So, that's why we dismiss the TSH.

However, with your labs, the TSH is doing its job, and responding to thyroid hormone levels correctly. There is no mistake, I'm afraid.

Flower222 profile image
Flower222 in reply togreygoose

This has been so helpful. TSH thyroid stimulating hormone. So I have 6.22 stimulating my thyroid because of my fantastic pituitary and it is this pushing my thyroid to make enough thyroxine. My fear is that if I take thyroxine that my TSH will crash and then I will feel worse and also my thyroid will be stimulated less. Although tired I'm not stuck in bed and this has been a bit of a wake up call so I'm going to do better diet wise and get some exercise and heal myself.Many thanks for all your support

greygoose profile image
greygoose in reply toFlower222

My fear is that if I take thyroxine that my TSH will crash and then I will feel worse and also my thyroid will be stimulated less.

Well, yes, that's what it's supposed to do. And your thyroid will 'go to sleep'. That's how it works. No point in flogging a dead horse, you thyroid is incapable of making enough hormone to keep you well, so you need to take Thyroid Hormone Replacement - not thyroid hormone top-up. But you shouldn't feel worse, not long-term, anyway (there will possibly be teething problems) because TSH doesn't make you feel anything, good or bad.

It's the T3 that causes symptoms when it's too high or too low. So, if the thyroid hormone replacement brings your FT3 up to optimal levels, you will feel much better.

so I'm going to do better diet wise and get some exercise and heal myself.

You do know you cannot 'heal' a failing thyroid, don't you? No amount of excercising or changing diets is going to make your thyroid function correctly again. And you cannot live without thyroid hormone. So, unless you take the thyroid hormone replacement, your health is just going to get worse and worse, because it will affect every part of your body.

Sunflower64 profile image
Sunflower64 in reply toFlower222

Just some friendly advice: listen to Greygoose. She is very knowledgeable, and happy to share her knowledge with others. She has learned from experience, unlike doctors.

A TSH above 2 tells us the thyroid is struggling. A healthy person has a TSH closer to 1.

When the thyroid is failing, as in autoimmune thyroiditis, the body will struggle to maintain normal FT3 levels for as long as it can as T3 is the active hormone. That is why T3 levels are usually the last ones to drop below range.

As greygoose points out, you cannot heal your damaged thyroid back to health. You need to replace the missing hormones.

serenfach profile image
serenfach

Your pituitary is desperately telling your thyroid to produce more (high TSH). Your thyroid is doing its best but is struggling.

Wait until your second test to see if this is a blip, but it looks like your thyroid is in trouble. You may be one of the 80% who are fine just taking one pill a day, and you will notice the difference over a few weeks, and not be constantly exhausted. We know that feeling!

Come back when you have the results of your second test and we will help further. I know it seems scary at first, but we are here to help you find your mojo again! Hug.

Flower222 profile image
Flower222 in reply toserenfach

Thanks very much.

Flower222 profile image
Flower222 in reply toserenfach

I have had my second blood test and TSH is 3.1, so it looks like the previously high TSH has worked and I am normal. Thanks very much all for your help and advice.

shaws profile image
shawsAdministrator

Few GPs have sufficient knowledge to diagnose a patient who has now developed hypothyroidism.

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