ADVICE PLEASE: I am 64 yrs old & having had... - Thyroid UK

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ADVICE PLEASE

lmoore profile image
8 Replies

I am 64 yrs old & having had partial removal of my thyroid gland over 40 years ago have been on various doses of Levothyroxine for over 30 years.

My latest dose of 300mcg was reduced to 125mcg approximately 2years ago when I began having heart palpitations & prescribed 2.5mg of Bisoprolol Fumarate.

I am still taking this dose of both today as well as 1.25mcg of Alfacalcidol due to a calcium & Vitamin D deficiency.

I went to my Doctor because -

I was having issues with weight gain that I was trying to address without success,

I was having frequent episodes of extreme tiredness & overwhelming weariness,

I was experiencing painful episodes of extremely cold hands, especially my fingers

I was experiencing regular disturbed sleep patterns

I was still experiencing infrequent heart palpitations

I was sent for a blood test & the results were -

Serum TSH level – (KS) reading of 0.86 mmol/mol

My GP will not listen to me & insists that my levels are 'normal'

I am still experiencing all of the above symptoms & would welcome some advice before I return to see my Doctor please.

Kind Regards,

Linda Moore

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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

Hi Linda

Unfortunately, just TSH is not enough to tell us anything and I really don't know how doctors don't understand this. TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

So all your TSH result tells us is that the pituitary is doing it's job and recognises that you are taking T4 in some form.

What we really need to know is the level of our thyroid hormones - T4 and T3 and the best measure of this are FreeT4 and FreeT3. T4 is a storage hormone which converts to T3 which is the active hormone that every cell in our bodies need. So there we can see that FT3 is the most important of all the tests, and the one that is never done!

Have you had your nutrient levels tested lately? It would be a good idea to see where they lie as they need to be optimal for us Hypos and they help thyroid hormone to work.

What you really need is

TSH

FT4

FT3

Vit D

B12

Folate

Ferritin

If your GP wont do these then I would suggest you do a private test with one of our recommended labs, either fingerprick or venous blood draw at extra cost.

Best value at the moment as there is £20 until the end of this month is

medichecks.com/thyroid-func...

Alternatively bluehorizonmedicals.co.uk/t...

It's the same test and both companies use accredited labs, same as NHS.

Do you take your Levo well away from other medication?

I assume your GP is keeping an eye on your calcium level?

Heathersue profile image
Heathersue in reply toSeasideSusie

Excellent advice! Since taking B12 I've felt much better and finally started to loose weight. TSH gives you a small glimp of the problem but most GPs don't understand the condition fully. I've gone in with medical articles before now to question their diagnosis. Works like a charm. I agree, get the additional tests if you can.

lmoore profile image
lmoore in reply toHeathersue

Thank you for taking the time to reply x

lmoore profile image
lmoore in reply toSeasideSusie

Thank you for taking the time to reply x

SlowDragon profile image
SlowDragonAdministrator

There's has been recent medical obsession to lower doses of Levothyroxine, often with these results

Medics like the test results......but patients feel dreadful

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

tukadmin@thyroiduk.org

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

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

lmoore profile image
lmoore in reply toSlowDragon

Thank you for taking the time to reply x

bantam12 profile image
bantam12

As well as the tests SeasideSusie has listed you should have calcium checked, very easy for it to go to high when supplementing and high calcium is never good. If it does come back high you need a Parathyroid test.

lmoore profile image
lmoore

Thank you for taking the time to reply x

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