Hypothyroid tests: I had Graves disease and after... - Thyroid UK

Thyroid UK
109,010 members126,590 posts

Hypothyroid tests

Hypogirl50
Hypogirl50

I had Graves disease and after 6 months on medication my liver function tests went through the roof, I was having palpitations and was generally exhausted. I was then given radio-iodine treatment and as warned became hypothyroid - my liver function tests also immediately returned to normal. This was all diagnosed and treated while working abroad. For the past 13 years I have been treated back in Uk but have never had a T3 test as the doctor says it isn't required. However, at practically every 6 monthly blood test my dosage is changed - usually between 75 and 100 mg. I am now on a 75mg dose but have put myself back up to 100mg as I was feeling awful on 75mg. I have never been referred to an endocrinologist in this country - should I be asking to see one - perhaps privately - or carry on this see saw.

11 Replies
oldestnewest
SlowDragon
SlowDragonAdministrator

First step is to get full testing done

What supplements do you take?

For full Thyroid evaluation you need TSH, FT4, TT4, 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

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, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have test results and members can advise on next step

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-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, it is best to make sure to only get that one at each prescription.

Thanks. My doctor tells me not necessary to fast plus I have never been told to stop,taking levothyroxine 24 hours before blood test. Depressing!

I take B12 and magnesium in spray form. Also fish oil for Omega 3 and glucosamine, chondroitin tablets. I don't take vitamin D as I spend winter in sun and am always out when in uk.

SlowDragon
SlowDragonAdministrator
in reply to Hypogirl50

You still need to test vitamin D. £29

vitamindtest.org.uk

In part because we tend to be too clean and likely wash off vitamin D

vitamindcouncil.org/washing...

articles.mercola.com/sites/...

Also because when have Thyroid problems we need or use more than average person

holtorfmed.com/vitamin-d-au...

As to testing advice.

There is currently ridiculous over reliance on many medics wanting TSH within range, (virtually impossible if on adequate Thyroid replacement) so anything that keeps TSH as high as possible when testing is advised

There is pronounced diurnal variation in TSH, so testing as early as possible in morning gives highest TSH. There is some controversy as to wether fasting or not increases TSH, but having delayed taking Levo until immediately after test, you need empty stomach for taking Levo anyway.

Graph showing TSH daily variation

healthunlocked.com/thyroidu...

No Levo in 24 hours prior to test gives lowest FT4. If you normally take Levo in morning just delay until immediately after test. If normally take Levo at bedtime, still delay until after test. You can still take next dose that evening.

If you are supplementing B12 you may benefit from a good quality daily vitamin B complex. One with folate in. This helps keep all B vitamins in balance

If you are taking vitamin B complex, or any supplements containing biotin, 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...

Thanks, will do as you suggest, relieved to get some constructive advice.

SlowDragon
SlowDragonAdministrator

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, especially after RAI.

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Really grateful for the time you have taken over my query. I now aim to do as you recommend and get tested privately, though it may have to wait until end of summer as house full of children and grandchildren and no time to myself!!

SlowDragon
SlowDragonAdministrator
in reply to Hypogirl50

Would suggest you just test vitamin D now - extremely easy - just four spots of blood on a card. Can do at any time of day, pop in post and they email you the results

Getting vitamins optimal through summer

Vitamin D need some to be at least 80nmol. Many find around 100nmol is better

Then do full thyroid and vitamin check in 6-8 weeks after improving vitamins

Remember to stop taking any supplements with biotin in 3-5 days prior any blood tests

Awaiting arrival of vit d test kit as advised then once life returns to normal will do full testing as suggested. Thanks

SlowDragon
SlowDragonAdministrator
in reply to Hypogirl50

Come back with your vitamin D result once you get it on a new post

I am only now getting round to trying to organise a full private thyroid test - my results this week were

Serum TSH level 0.08 mU/L (range 0.27-4.20) Low

Serum free T4 level 24.4 pmol?L (11.0 - 25.0)

Nothing else was tested. To get a private one I am confused by the various tests on offer - what is recommended I should have. My Vit D has been tested and is good.

You may also like...