TSH and T4 levels: HI. I have been on... - Thyroid UK

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TSH and T4 levels

goofball profile image
12 Replies

HI.

I have been on Levothyroxine for about a year. I am on 50 mg dosage. My levels have come back as abnormal, my Serum TSH level is 6.9mu/l and my Serum free T4 level is 23.1pmol/L. I have been told to wait another 8 weeks to be re tested as the doctor cannot understand why the serum free level is high as well as the TSH. I was expecting to move up to 75mg of Levothyroxine, especially as these levels were similar way back in March. Can anyone help, I am kind of new to this and finding it difficult to get my head around. Also would it be why I am putting on a few pounds, despite doing as much exercise as I have ever done!! Thanks very much.

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goofball
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12 Replies
greygoose profile image
greygoose

Oh dear. Well, I would take an educated guess and say that your TSH is high because your FT3 is low, and your FT4 is high because you cannot convert levo (T4) to T3. But, I'm sure that's far too complicated for a GP to work out.

You really do need your FT3 tested to see the whole picture (not to mention your antibodies and nutrients). If your GP/lab refuse to do it, you really should consider getting your FT4 and FT3 tested together privately, to see how well you're converting.

Of course there could be other reasons, like lab error, TSH antibodies (although it would probably be higher if that were the case) or some form of biotin - are you taking any supplements.

If your FT3 is low, that would be why you're gaining weight, yes. And, too much - or too strenuous exercise - can make things worse by negatively impacting your conversion. So, if I were you, I would just do some gentle walking or swimming until all this is sorted out. :)

jgelliss profile image
jgelliss in reply togreygoose

Thank you .You said it exactly the way it is . It needs to be encompassed and see the whole picture to be able to see what needs tweaking . Keeping logs with our symptoms helps along too and having the right nutrients that help with our thyroid meds .

SlowDragon profile image
SlowDragonAdministrator

You have possibly been left too long only on starter dose, then vitamins tend to crash right down, TSH goes low and FT4 high, because conversion gets worse

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

thyroiduk.org.uk/tuk/testin...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Exercise depletes FT3, so lots of exercise may not be helping

Do you know if you have high thyroid antibodies?

Just wondering.......are you taking vitamin B complex, or any supplements containing biotin? If so remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Fifteen profile image
Fifteen in reply toSlowDragon

Thanks for this - now I know to stop vitamins in advance of testing.

How long before testing should I stop taking T3 (Sanofi Thybon 20 Henning?

I did not want to start self-medicating with this but exhaustion means I need a long sleep in the afternoon plus seemingly uncontrollable weight gain gave me no option.

SlowDragon profile image
SlowDragonAdministrator in reply toFifteen

Fifteen

Have you had DIO2 gene test yet?

Managed to get NHS to reinstate your NHS T3 prescription?

You can and should be prescribed on NHS

Testing on T3 /T4 combination, timing of last dose is important

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose exactly 12 hours prior to test

goofball profile image
goofball

Thank you all so much, I am guessing that I will need to get some different tests done. Is it worth asking the doctors for these, or will I get a plain no, and would it be better to just go private like you suggest.

I am not sure that I have been diagnosed, just told that my thyroid isn't producing enough thyroxine, ( my first result was 11.4 mu/L and 17.6pmol/L in October 2017,when I went with odd symptoms, mainly loose bowels. They did many tests on my blood for gluten etc with the results coming back about my thyroid. I don't think that there is any lab error or any other reason as these results have been very similar approximately three other times since March 2018 ( I did have varicose veins removed and had to be tested then in May and August,when I had them removed) . I do not know if I have high thyroid antibodies either.

I am not taking any other supplements

The only symptoms I have are dry skin, and my bowels are still a bit iffy, (sorry) but my family are prone to psoriasis anyway.

If I do go ahead and get tested privately, how would I then use any results to change any new medication, and does anyone know what would be the likely outcome if the results come back as many of you suggest.

Thank you so much for all your help, I would probably have been disgruntled for the next eight weeks, and at least I feel like I am doing something about this.

greygoose profile image
greygoose in reply togoofball

Your results have been off for three consecutive tests and your GP is still just sitting there scratching his head? What is he waiting for? A miracle? Waiting another six weeks or whatever is not going to change anything.

I don't know what the out-come will be if you get the tests done privately and the results are as we expect. It depends on the level of your GP's intelligence. Will he accept that a low FT3 is the reason for the high TSH? There's no knowing. But, if you don't try, you'll never know, will you. :)

SlowDragon profile image
SlowDragonAdministrator in reply togoofball

Go and see GP

Ask for thyroid antibodies tested plus vitamin D, folate, ferritin and B12

You can say you have taken advice from NHS recommended thyroid support group

Gut symptoms are extremely common when hypothyroid, especially if you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies

As you have psoriasis an autoimmune disease, it's likely thyroid is also autoimmune

With Hashimoto's gluten intolerance is extremely common. Presumably you have tested negative for coeliac already. However that doesn't test for gluten intolerance, you just have to try it

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP never mentions gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

If GP is unhelpful then private testing is next option.

Literally thousands on here forced to do this to get diagnosed or adequately treated

Come back with new post once you have results and ranges for advice on next steps

50mcg Levothyroxine is only a starter dose. It should have been tested after 6-8 weeks and dose increased in 25mcg steps

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Low B12 can get worse after general anaesthetic

Low vitamin levels are extremely common problem when hypothyroid

goofball profile image
goofball

Thank you so much SlowDragon and greygoose what a great help you have been.

If I try to avoid gluten I am guessing it would get rid of that horrible bloated feeling that I have in my stomach, I can see from the attached article that intolerance is difficult to diagnose even with a test.

I am thinking now with hindsight when I also notice that headaches and migraines can be a result of Hashimoto's mine suddenly got worse a couple of years ago before I realized that my thyroid was a problem, also my 'pile' symptoms ( sorry again) have got much worse. I now have to have Propanalol to stop my migraines, but am wondering if my thyroid levels were correct that I could knock this on the head in the future?

I will call the GP next week and try to get some more tests.

Thank you again for the time that you have both taken to help me.

SlowDragon profile image
SlowDragonAdministrator in reply togoofball

Propranolol is used for hyperthyroid patients and likely not helping.

It can slow Thyroid hormones and affect adrenals

You can NOT just stop propranolol, it must be weened off incredibly slowly.

I was stuck on propranolol for 20 years. See my profile for more info

Perhaps ask GP for an alternative for headaches or just try paracetamol

Headaches are actually a classic hypothyroid symptom

goofball profile image
goofball

Thank you , I didn't know that Propanolol was used for hyperthyroid or that it slowed thyroid hormones.

Unfortunately my migraines took me out, I was sick the entire day and night, not even able to keep liquid down, or the anti sickness tablet that dissolved under my lip. So needed something that didn't affect my job once a month. Preventative migraine tablets just came straight up, as well as Paracetamol, ibuprofen and co-codamol.

Anyway this is all forming some sort of picture where obviously one thing affects another, no doctor has really mentioned this, so thank you again all. (fifteen too, sorry!)

goofball profile image
goofball

Hello all,

Saw a lovely Doctor who sent me for all the tests that you recommended that I have.

I hope they make sense, here they are with the reference levels.

Serum TSH level 6.5mu/L (0.27-4.2)

Serum Free T4 level 21.2pmol/L (12.0-22.0)

Serum free triiodothyronine level 3.3pmol/L (3.1-6.8)

Thyroid peroxidase ab's 107ku/L (<60)

Serum vitamin B12 level 335ug/L (180.0-914.0)

Serum folate level 30ug/L (10.0-307.0)

Serumtotal 25 hydroxy vitamin D level 33.9nmol/L

<30-50nmol/L Vitamin D insufficiency, consider replacement

Am guessing my antibodies are outside the range and are positive and I have a lowish amount of Vitamin D, and the T3 is just within range.

Quite a quick turnaround from a sample given on Saturday!

I am hoping to see her again on Thursday or Friday.

Am guessing she will tell me to take Vitamin D supplements but not sure what else, she did talk about an Endocrinologist.

Thank you in advance

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