Natural thyroid? They keep changing my dose :( - Thyroid UK

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Natural thyroid? They keep changing my dose :(

williamsad19 profile image
7 Replies

Hi all,

me again!

I just wondered would it be worth trying an NDT?

As discussed in my last post my first TSH was 7 (0.4 -4.2) put on 50mcg.

Then next one was 4.9 and T4 16 (13-24) so put up to 75mcg.

Now the last one last week was TSH 0.01 and T4 20.9 (range 13-24) so he dropped me to 50mcg 8 days ago. I FEEL TERRIBLE NOW!!

A lot of members suggested testing T3 in 6 weeks which I will do incase im not converting. But would anyone recommend NDT and if so which one and where from?

Its been 7 months now and i'm totally fed up! I'm 32 with children and a full time job, payed tax since I was 16 and I feel its unfair that they aren't bothered!

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7 Replies
shaws profile image
shawsAdministrator

Tell GP that you need your dose back to 75mcg as you feel absolutely terrible with the reduction. That you have enquired on a NHS help line and we can have a TSH of 1 or lower and the Free T4 and Free T3 should be in the upper part of the range.

We have to be pro-active as many doctors are unaware how to actually treat someone with hypothyroidism and 'hypo' means everything in our body slows i.e. heart and everything else.

If you are on an optimum dose of levothyroxine symptoms can be relieved - and the word 'optimum' is essential.

T4 i.e. levothyroxine is an inactive hormone and it has to convert to T3 - the only active thyroid hormone and if you are given insufficient levothyroxine you cannot convert to optimum T3 and doses of levo can be over 100 to 200+ whichever relieves the symptoms.

Also, you have to follow the procedures below when having a blood test:-

The test has to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This may prevent the doctor adjusting your dose.

Ask him for a new test and follow procedure and hopefully he increases your dose until you are symptom free.

The usual doses of levo used to be between 100mcg and 200mcg plus and some may have needed more but the professionals have become fixated with the TSH which is from the pituitary gland anyway. 50mcg is a starting dose.

Before you consider self-medicating wait till you've given levothyroxine a proper chance. You can tell your doctor you don't want to self-medicate but might have to if it will allow you to recover your health. The aim is relief of all symptoms not to get the TSH 'in range'. After all people who've had thyroid cancer for instance have to be given suppressive doses and they don't seem to suffer the consequences of a high dose.

SeasideSusie profile image
SeasideSusieRemembering

There was no reason for your dose to be reduced to 50mcg. Your TSH was below range and your GP panicked, but your FT4 was well within range so there was no way you were overmedicated. If you felt well on that dose you should have been kept on it. What your doctor has achieved now is to make you more hypothyroid again.

Have a look at thyroiduk.org.uk/tuk/about_... > Treatment Options

"Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

Email Dionne at tukadmin@thyroiduk.org for a copy of the article and highlight question 6 to show your GP and ask for your dose to be increased to 75mcg then retest in 6 weeks.

There is every chance that Levo can work for you, maybe with the addition of some T3, but you need to be on a decent dose and not be messed around by a doctor who twitches at the sight of a low TSH.

williamsad19 profile image
williamsad19

thankyou both, I have just rang the surgery to ask about this and suddenly I have t3 result, strange!!!

My t3 was 6 (3.1-6.8)

any thoughts?

Clutter profile image
Clutter in reply towilliamsad19

Williamsad19,

T3 6 is excellent, you are a very good converter. TSH 0.01 is suppressed but you were not overmedicated with FT4 20.9 and T3 6 as both are within range.

williamsad19 profile image
williamsad19 in reply toClutter

Why do you think my TSH would be so low on 75mcg when it was 4.9 on 50mcg?

Clutter profile image
Clutter in reply towilliamsad19

Williamsad19,

Because 50mcg wasn't enough and 75mcg is plenty. As 50mcg wasn't previously enough your GP could have prescribed 50mcg/75mcg alternate days.

williamsad19 profile image
williamsad19 in reply toClutter

Thankyou I will try 😬

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