Advice please: In 2018 my Accord Levothyroxine... - Thyroid UK

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Advice please

nuiq profile image
nuiq
6 Replies

In 2018 my Accord Levothyroxine was increased after quite a fight to 100mcg as I was feeling quite ill with all the usual symptoms tired, cold, depressed, painful joints, hoarse, not eating much but gaining weight and at that time my results were TSH 4.12 / T4 16.80 (the only two tested here.) By April this year I was beginning to feel the same symptoms so not surprised to find my TSH had increased from 0.1 / T4 23.4 to TSH 2.0 / T4 23.7 after 24hour fasting and morning appointment. The hospital ranges are (TSH 0.27 – 4.2) and (T4 10 – 22) and the lab and DR insisted all was ok but after a lot of reasoning that it may be ok for the lab but not for me my Accord Levothyroxine was raised by Teva Levothroxine 0.25mcg My latest blood test was taken unexpectedly in the afternoon with no fasting and the results have come back TSH 0.1 / T4 28.5 so the Dr wants to speak to me and will probably want to lower my Levothyroxine even though I am feeling better than ever. While I do understand the worry about tipping over to hyper through over prescribing I really don’t want to go back to feeling as bad as I did but I'm tired of fighting.

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pennyannie profile image
pennyannie

Hello Nuiq :

The issue could be one of your not converting well the T4 into T3 within your body - hence a low T3 and a higher than usual T4 :

In order to know we need a fasting, early morning blood thyroid blood test for a TSH + Free T3 + Free T4 to check your conversion ratio - which should be around 1/4 ratio T3/T4 :

Conversion of T4 - a pro-hormone - into T3 - the active hormone that runs the body much like fuel runs a car - can be compromised by non optimal levels of your core strength vitamin and minerals - so it's sensible to also get your ferritin, folate, B12 and vitamin D run -

Down regulation of T4 into T3 can also happen if there is inflammation, antibodies - so these 2 biomarkers need to also be included in the blood test -

and conversion also slows when there is any physiological stress ( physical or emotional ) depression, dieting and ageing.

If your doctor is unable to run these tests for you many forum members use one of the Private blood companies as detailed within the Thyroid UK website - thyroiduk.org and post the results and ranges back up in a new post on this forum and forum members talk you through what they all mean and your next best step to better thyroid health.

P.S. Being over medicated and having o/range T4 does not necessarily mean you are hyper - but it does mean you are becoming toxic and taking too much Levothyroxine - and likely, as I wrote above - your ability to covert the T4 into T3 has ' slowed ' for one reason or another.

nuiq profile image
nuiq in reply topennyannie

Thank you for taking the time to read my post and give me advice. unfortunately I have had previous conversations with the Dr and it is only TSH and free T4 they test for. They go with what the lab says and if that is ok then as far as they are concerned the lab is right. This time according to the lab I am over prescribed.

pennyannie profile image
pennyannie in reply tonuiq

Well. yes you will look to be over prescribed because your T4 is over the range -

it looks that simple - but by reducing your T4 you will also be reducing your T3 -

which may well compromise your health further and since you are already dealing with symptoms of hypothyroidism - these are symptoms of too low a T3 for you.

Sadly, routinely, the NHS does not now test T3 - it is a cost cutting exercise that is causing more ill health especially for thyroid health patients - and why you find yourself here rather than getting some resolution from your primary care provider-

Your thyroid blood panel is incomplete - as without a T3 - the results are pretty meaningless and why many other form members before you have been in a similar position -

and have been forced to arrange private blood tests and post the results and ranges back up on this forum for other forum members to advise on as to the next best step back to better health - as detailed in my previous reply -

I was where you are back in 2016 when there were just around 15 K forum members - and so now in 2024 we have 141K forum members - and we see the impact of a cost cutting exercise - saving around £1.00 per blood analysis back in 2018 -

and the growing number of patients looking for help in understanding why they feel no better - with many offered anti depressants - as some sort of consolation prize when primary care doctors are not able to ' look further ' and are working from limited blood test results and computer dogma/ statements.

nuiq profile image
nuiq in reply topennyannie

I have just ordered a private check with Medichecks. I have been trying to get an appointment with the Dr at his request but his diary was closed last week Tuesday when I got the message then it wouldn't open Friday when I phoned so I have to phone on Tuesday now and this is just to get a phone consultation. I give up.

pennyannie profile image
pennyannie in reply tonuiq

I know - your situation is not unique - but all any of us can do is soldier on as if using the NHS the system is totally over whelmed as are the NHS staff trying to be all things to all people :

SlowDragon profile image
SlowDragonAdministrator

Refuse to reduce dose until you have had TSH, Ft4 and Ft3 tested together…and tested early morning Exactly what, last dose levothyroxine 24 hours before test

Plus vitamin D, folate, ferritin and B12

what vitamin supplements are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

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