Purpose of taking thyroid medicine and best blood test times?

Are there any "official" documents anywhere stating the purpose of taking thyroid medicine? Based on what I've read on this forum their aim is to reduce TSH to about 1 (just above or just below), but is this written down anywhere in documents the NHS may accept?

Also, similar question for the best time to have blood drawn for testing. I've seen plenty posts saying first thing in the morning on an empty stomach, but is it officially documented anywhere?

I'm also wondering if there's anything official anywhere which refers to flare ups? My symptoms come and go. Most of the time they have no real impact on my day to day life other than when I get up in the morning and have to shuffle round like Charlie Chaplin for 10-20 minutes, but every now and then they all flare up at the same time and the symptoms I usually don't even notice start to impinge on my life. Usually the flare ups last for a week or two, but the current flare up has been ongoing for 9 months now and is the worst I've ever had.

I've searched on various web sites but can't find anything other than posts on this forum.

I ask mainly because all my tests for the last ten years were at random times during the day, often being the last appointment of the day (17:30), and never on an empty stomach. After first diagnosis of hypo and starting on thyroxine (December 2005, TSH 6.12, 25 mcg prescribed) my TSH dropped to 1.26 before slowly climbing over the next seven years back up to 5.66 (December 2012. Still on 25 mcg, but the chemist kept changing the brand they gave me during 2012), at which point my doctor stated I was better, didn't need thyroxine any more and stopped prescribing them. Within two months my symptoms have returned and the TSH count has varied between 3.39 and 4.9 (still had it tested annually) My doctor's diagnoses for my achilles pain have been pulled muscle, trapped nerve, slipped disc etc and all the other symptoms I have are "just coincidence" (in response to my direct question "How does a pulled muscle in my calf affect my digestion and give me dry skin on my forehead?"). He did test for a gazillion other potential problems which all came back negative, but just repeatedly stated there was nothing wrong with my thyroid. The only two occasions my FT4 was tested it was 11.9 (when TSH was 6.12) and 15.8 (when TSH was 5.66) TSH range 0.3 - 5.0, FT4 range 9 - 25. So far as I can see no other Thyroid tests have ever been completed (unless they are recorded with a name which isn't obvious?)

Changed to a new practise now, hence my desire for some form of documentary proof of what I'm telling my new doctor. I'm awaiting a blood test for connective tissue disease that he requested (whatever that is) and my new doctor has stated that if that shows nothing untowards then he'll trial me back on thyroxine for a couple of months to see if it works, based on the fact I was prescribed it for seven years and I've told him it worked fine. He also asked me if I'd ever been shown my test results or had them explained to me. I hadn't, but now have access via PatientAccess and know what they are all the way back to my first ever test in 2012.

6 Replies

  • If we are hypothyroid it means our thyroid gland cannot function properly for some reason. If you have thyroid antibodies you also have an Autoimmune Thyroid Disease called Hashimotos which means you vary between too much hormones or too little.

    If you email louise.warvill@thyroiduk.org.uk for a copy of an article by Dr Toft ex President of the British Thyroid

    Association and read question 6 in particular. Many Endocrinologists/doctors don't know how best to treat hypthyroid patients. We have to read and learn ourselves in order to recover as best we can to lead a normal life.

    This is our 'Mother' website and was begun with Lyn Mynot and we're very fortunate now to have this forum on Healthunlocked who have quite a few illnesses covered.

    You can become a member of Thyroiduk.org.uk for £20 per annum and get 4 quarterly updates and/or petitions to try to raise awareness amoungst the general public. Many have hypothyroidism or thyroid gland dysfunctions and never been diagnosed.

    We have recently filled in a questionnaire which will be forwarded to the Scottish Parliament as one of our members has Petitioned the Parliament about the dire state of affairs regarding being diagnosed/lack of knowledge in the medical profession/lack of thyroid hormones if not betting well on levothyroxine.

    Some countries diagnose when the TSH is around 3. The UK states to wait till the TSH is 10 but some doctors do take account of clinical symptoms and prescribe around 6. Some peoples TSH never rises but are very symptomatic.

  • Achilles_Pain, NHS will usually make a diagnosis of hypothyroidism when TSH is over range or FT4 is below range.

    The goal of Levothyroxine is to restore the patient to euthyroid status. I believe most endocrinologists consider for patients on Levothyroxine TSH 1-2 is euthyroid and most thyroid fora believe euthyroid will be when TSH is just above or below 1.0 with FT4 in the upper quadrant of range, and FT3, if tested, in the top third. Read Dr. Toft's comments in Treatment Options thyroiduk.org.uk/tuk/about_... If you would like the full Pulse article email louise.warvill@thyroiduk.org.uk for a copy.

    TSH fluctuates and is highest in the early hours and drops post-prandially which is why we recommend members have early morning and fasting (water only) tests. See links below. I'm not aware of any 'official' guidance, it is a 'tip' to enable patients to maximise their chance of getting a diagnosis or dose increase and to lessen the chance of dose being reduced.




    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • There isn't an NHS doc I can find recommending that the aim of treatment of those diagnosed with hypoT should be to get TSH around 1. However there is a European Thyroid doc which has two British endos on it which does recommend this as an aim - it says get it down to between .5 and 1.4, from memory. So it is quite a mainstream medical view.

    How is your cholesterol level? Achilles tendonitis is associated with hypercholesterolaemia (sp wrong on this, but if you search Google it will kindly put it right.)

  • Each time I've been tested my good cholesterol has been high and my bad cholesterol has been low. No idea what the ranges or values are without digging round, but the doctor was surprised how high and how low - possibly because I have pretensions to be an athlete and do a bit of this old running lark? In fact of all the tests I've ever had, I've been right at the far end of the good side (high where high is good, low where low is good), except my thyroid tests which have all been within a whisker of straying out of range in the bad direction.

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