High TSH and No Thyroid.

[Devonlaraa]

Hi all, for the last year all my blood test results have come back with normal thyroid functions but my tsh is high. I don't have a thyroid at all. So could this be the problem? The doctors and my surgeon don't seem to think there is anything else they can do as I'm on 200mcg and they think that's a high dose anyway and are reluctant to put it up any more and they says it's just my TSH that's high. Has anyone else experienced this ?

[shaws Administrator]

I think you are dealing with professional idiots (to be polite) as someone whose thyroid gland has been removed and is complaining to them about symptoms.

On this forum we self-educate through others awful experiences which is completely unnecessary if professionals had any education at all of the after-effects.

I have my gland, but for those whose has had to be removed I doubt they are warned about the aftermath - this occurs afterwards if they aren't prescribed a replacement which will restore their health.

A high TSH is a red glag that insufficient thyroid hormones are the reason.

We have private labs that will do all of the necessary blood tests that will give a bigger picture.

If you decide to do this as the NHS seems to have cut right back to the TSH and T4 only.

There are two thyroid hormones, i.e. T4 and T3. T4 is inactive and has to convert to T3. T3 is the Active Thyriod Hormone and is needed in our billions of T3 receptor cells in order for us to function as a normal human being with no symptoms.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) . Allow a gap of 24 hours between last dose and levo.

This procedure gives the most accurate results.

You need a Full Thyroid Function Test which is:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

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

Everything has to be optimal. I am assuming both your frees will be low.

Get a print-out and post your results on a new post for comments. Ranges should always be given as labs differ and so do the ranges. The Frees are important.

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

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

[MaisieGray]

If you have no thyroid, you don't have any thyroid function, never mind normal thyroid function. It's like having beautiful hair when you are totally bald ..... impossible. But for members to comment, can you post the results of your blood tests, with their reference ranges, as "just my TSH is high" doesn't tell us anything.

[MissGrace]

Shocking. It’s high but they think you’re on a lot of meds? Did they actually ask you how you felt and if you have any symptoms? They are trying to make you ill and keep you ill. Have they checked your T3 and T4 levels? OMG we cannot win. Low TSH they refuse to raise the dose and try to reduce it. High TSH and they refuse to raise the dose and say you are on a high dose already. Don’t they get that using TSH is NOT WORKING? Don’t be fobbed off with this unmitigated c**p. Insist on another opinion.

[SlowDragon Administrator]

Poor absorption or low vitamins are often a problem

Can you add your actual results and ranges

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

Essential to test FT3 and vitamins

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Did you have Graves before thyroidectomy?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many. Otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

note especially his comments on current inadequate treatment following thyroidectomy

rcpe.ac.uk/sites/default/fi...

DIO2 gene variation is common in thyroid patients

DIO2 gene test article

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

[Muffy]

Before the days if the TSH blood Test, patients used to be given between 200 - 400 mcg per day.