Confused again!: Hello everyone Im feeling very... - Thyroid UK

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Confused again!

Kooks profile image

Hello everyone

Im feeling very ill with fatigue, weight gain and flu like pains in my muscles all over my body. I have an under active thyroid and taking 75mcg Levothyroxine daily. I phoned my Doctors surgery to check on my thyroid blood results from a month ago. My TSH has went from 0.02 to 0.08 and my T4 is 19. Do you think Im still over medicated as I used to be on 100mcg of Levothyroxine but theyve been reduced to 75mcg over the past 6 months.

Thank you for any advice x

22 Replies
shaws profile image

If you felt o.k. on 100mcg of levo, your doctor shouldn't have reduced it. Maybe you didn't get the very earliest blood test or allowed a gap of 24 hours between your last dose of levo and the test and take it afterwards?

TSH and T4 results are not sufficient tests, especially if we feel worse than before being diagnosed.

All blood tests for thyroid hormones have to be at the very earliest appointment, made weeks before as it is difficult to get an early blood draw. You also leave a gap of 24 hours between your last dose of levo and the test and take it afterwards. This helps keep the TSH at its highest as that's all doctors seem to look at and it reduces throughout the day and could mean the difference between an increase in dose or not.

Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. You can - if doctor wont do all - get them privately and they are home finger-prick tests and make sure hands/arms are warm.

GP should test Vit B12, Vit D, iron, ferritin and folate.

Everything has to be optimal.

TSH is not a thyroid hormone, it is from the pituitary gland and rises if our body needs more hormones.

Read the second half of the following link:

Doctors should treat symptoms and not prescribe due to the result of a blood test.

Kooks profile image
Kooks in reply to shaws

Thank you. My T4 increased from 23 to 32 just over a year ago. The spike caused the GP to decrease my thyroxine to 50mcg but I wouldnt accept this and we decided on 75mcg.

I have made a GP app for Friday

greygoose profile image
greygoose in reply to Kooks

How much levo were you taking when your FT4 went up to 32? I very much doubt you were taking enough to raise your FT4 that much! That is pretty certain to be Hashi's, no matter what your antibody tests said.

You cannot rule out Hashi's on the basis of one negative blood test, because antibodies fluctuate. The true test is when FT4 and FT3 levels increase like that without apparent reason.

Kooks profile image
Kooks in reply to greygoose

I was taking 100mcg and had been for 12 years. I had no symptoms, this reading was found with my yearly thyroid blood test.

greygoose profile image
greygoose in reply to Kooks

OK, so, have you been tested since? I think your doctor should have repeated those tests before reducing your levo. They're rather suspicious.

Do you take any B vits? Biotine or a B complex?

in reply to greygoose

"The true test is when FT4 and FT3 levels increase like that without apparent reason."

Do you mean what is called a flare - when high antibodies cause thyroid cells to disintegrate and dump extra thyroxine into the bloodstream?

greygoose profile image
greygoose in reply to

A flare, yes. But, it's not the high antibodies that cause the cells to die (I don't think they actually disintegrate, just die off). The antibodies don't attack the thyroid, they just clean up the mess after the attack. :)

in reply to greygoose

I thought they killed the thyroid cells and the white blood cells clear up afterwards

Anyway, whatever actually happens, it causes high thyroid levels for a while, then they drop again, probably lower than before

greygoose profile image
greygoose in reply to

I think it's a question of terminology. :) But, yes, the thyroid hormone levels shoot up and then come down again.

in reply to greygoose

I asked the practice pharmacist who is dealing with my medication if that might be the reason for my low TSH last time, but she said no. Pity, because she's one of the more enlightened ones :-O

She might possibly be correct, but...

greygoose profile image
greygoose in reply to

Sorry, you've lost me, there. If what might be the reason for your low TSH?

in reply to greygoose

Sorry, been out.

She didn't use that example, but you know that if someone takes too many painkillers - such as for a headache - it can eventually GIVE them a headache. She seemed to be talking about a similar effect of too much Levo - that it can give you hypothyroid-like symptoms.

But I just thought!!! What if that is due to the excess T4 causing production of rT3???

That might happen if the problem was poor conversion - mightn't it? The more Levo you took, the more rT3. So instead of more T3 being produced you would get the same amount, or even less

greygoose profile image
greygoose in reply to

Yes, you're right, too much T4 will cause you to convert to more rT3 than T3. But rT3 does not cause symptoms, and does not affect TSH.

So, I'm having difficulty following this thread, now. lol But, are you suggesting that having a Hashi's flare, which causes levels of FT4 and FT3 to rise sharply, will cause the T4 to convert to more rT3 than T3? Yes, it probably will. But, it's the high levels of FT4 and FT3 that cause the TSH to drop, not the high rT3. And, then, the levels of high FT4 and FT3 will drop, and so will the rT3, and you'll be back where you started - or even lower.

When you have high rT3 because of high FT4, the symptoms - if symptoms there are - are due to the low FT3, not the rT3.

in reply to greygoose

Maybe best start another thread on this! Or I can PM you? It doesn't take much to confuse me either, lol.

Tired at the moment though. Maybe when my brain is working a bit better...

greygoose profile image
greygoose in reply to

No, it's not the subject that confuses me, it's the long gaps in the conversation, during which I forget everything that's been said before! lol

If you can phrase your question more precisely, then start a new thread. But, didn't I address your concerns in the answer above?

Oh, just noticed something I didn't address. No, too much T4 does not give you hypo-like symptoms, but may give you hyper-like symptoms, which are often the same as hypo symptoms. But, usually, it doesn't give you any symptoms at all if it's not being converted to T3.

in reply to greygoose

Righto. Sorry for gatecrashing your thread, Kooks

greygoose profile image
greygoose in reply to

Oh! Didn't realise it wasn't your thread! Sorry, Kooks. Hope this discussion has at least been of some interest to you. :)

SlowDragon profile image

Just testing TSH and FT4 is completely inadequate

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 Thyroid antibodies are raised

Low vitamins can lower TSH and conversion of FT4 to FT3 can get worse

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

Link about antibodies and Hashimoto's

List of hypothyroid symptoms

Kooks profile image
Kooks in reply to SlowDragon

Thank you. Iv had my B12, iron and Vitamin D checked along with my blood count and a host of immune based blood checks they all came back ok.

SlowDragon profile image
SlowDragonAdministrator in reply to Kooks

Can you add the actual results and ranges on these.

Vitamin D




TPO antibodies

TG antibodies




Many have to test privately to get full testing

Im going to request I get my T3 checked. I cant be left to feel as badly as I do ☹

Hey there,

you might want to watch your diet. i would strongly recommend you to eat more eggs, bananas and sardines. These will help.

Right now what you need is more natural remedies such as herbs and vitamins. For example, Selenium and Ashwagandha. These have proved for centuries to be very effective to improve thyroid health

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