I had a full thyroidectomy in August 2024 and have been taking 125 levothyroxine ever since. I feel OK but the GP doesn’t seem to be able to answer my questions or order the correct blood tests. Most recently when I asked for tests she only ordered serum TSH which was 0.21. Three months ago it was 0.23 but she also did other tests which were all OK - free T3 was 4.3 and vit D was 55.
Am I lucky that my dose is working OK? I just don’t know if my medication is correct but I do feel OK.
welcome to the forum
please add range on Ft3 result
No Ft4 result?
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you taking
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once for autoimmune disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
VERY important to test TSH, Ft4 and Ft3 together
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
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
This is all really helpful. I need to digest it all and make an appointment with my GP to discuss. My T4 has never been tested. I’m not sure what you mean about T3 range?
I have been receiving different brands of Levothyroxin so don’t know if that is a problem or not for me yet. It does concern me though.
My T4 has never been tested.
Normally Ft4 is tested (levothyroxine)
This is to check if you are taking correct dose levothyroxine
Different brands of levothyroxine can give different results
I’m not sure what you mean about T3 range?
Blood test results have a range of
Different labs have different ranges
Most common range on Ft3 is 3.1-6.8
But it could be different
The range should be shown in brackets after the result
Eg
Ft4 14.8 (12-22)
Ft3 4.3 (3.1-6.8)
Thanks, yes I now understand. I also realise that my GP isn’t organising the correct tests so thank you for all this information, and I will request that the correct tests are done and make sure I don’t take my medication just before them as I had been doing!
Very helpful; thank you.
and I will request that the correct tests are done
GP may not agree to all tests…..or lab often doesn’t test Ft4 and/or Ft3 even if GP requests
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
So I ought to be taking vitamin D? I was taking it briefly prior to my surgery but was then told to stop and never told to start taking it again.
I feel like the surgeons to their bit and then you are abandoned into the hands of GP’s who don’t have adequate expertise!
This is exactly the experience of many unfortunately. The NHS is also increasingly only testing TSH when carrying out thyroid bloods, completely inadequate. You might get FT4 if you are lucky but rarely FT3. Its why so many of us resort to private testing.
Hello Grbca and welcome to the forum :
The thyroid is a major gland responsible for the full synchronisation of the body from your physical ability and stamina through to you mental, emotional, psychological and spiritual well being, your inner central hearing system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T3 is the active hormone that the body ' runs on ' and T4 is a pro-hormone that needs to be converted in your body, as and when needed into T3 - to give you the energy to get through the day - do all you need to do - sleep well - and recover and restore o/night your brain and body ready for the next day and all that is to do do and enjoy in your life.
Not everybody can convert the T4 well into T3 - and when Primary Hypothyroid and without a thyroid you have lost that ' little bit ' of T3 you once had to kick start your metabolism -
Conversion of the T4 into T3 in your liver can be compromised by non optimal levels of core strength vitamin and minerals - so these are ferritin, folate, B12 and vitamin D - so these should be tested - and conversion can also be compromised by inflammation, thyroid antibodies, any long term chronic health condition, any psychological stress ( physical or emotional ) depression, dieting and ageing -and as we age the goal posts may move somewhat.
So it is important we check the ratio and levels of T3 and T4 in your blood stream to ensure your T3 is maintained at a good level and that you have no symptoms of hypothyroidism - which is an insidious, multi layered, chronic, debilitating long term health issue.
Without a thyroid your HPT axis - the Hypothalamus - Pituitary - Thyroid internal feedback loop - on which the TSH relies on as working well and giving accurate reading - is now open ended as there is no thyroid in situ to complete this circuit loop - and why running T3 and T4 gives a much more accurate result / reading :
There are no special guidelines for Primary Hypothyroid patients - we are all lumped together irrespective of whether we have a thyroid in situ or not - and currently in primary care the TSH is seen as the most reliable reading for treating hypothyroidism and once in a while you may get a T4 reading - and the only treatment available in primary care is T4 - thyroid hormone replacement.
We generally feel best when the T4 is up in the top quadrant of its range at around 80% through the range as this should then give us a good level of T3 at around 70% through its range and running at around a 1/4 ratio T3/T4.
Some people can get by on T4 only - Levothyroxine.
Others find that at some point in time T4 seems to not work as well it once did - and that by adding in a little T3 - Liothyronine - their thyroid hormonal balance is restored better and they feel better.
Some can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3 :
Whilst others find their health improved better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids and the original treatment for hypothyroidism and successfully used to treat hypothyroidism for over 100 years before Big Pharma launched synthetic, cheaper treatment options on the back of NDT in around the middle of the last century.
Usually people find a forum when they find themselves unwell, not listened to, or wanting to learn more as confused by the lack of information imparted by the medical profession.
If well and happy on T4 - this is the easiest and cheapest treatment option and works very well for around 80% of the many thousands of people who take it.
Sadly mainstream medical seems focused on the 80% - and why many forum members have been forced to look further than a TSH reading,
and now research for themselves and run their own Private blood tests to ascertain what is going in their body and work to get themselves back to better health -
and why Thyroid UK - the charity who supports this patients to patient forum exists - and where you will find much more information about ' all things thyroid ' and the implications when not optimally medicated - whether with or without a thyroid :
You've got some great information here, plenty for you to read! You'll certainly get to see the limitations of the NHS when it comes to this sort of thing, although it's a real postcode lottery.
I would add:
(1). Consider the Randox Everywoman blood and urine test - it's not cheap but it covers pretty much every parameter mentioned here and the sticker price looks high because it covers two tests - you take the first and then choose a date within 12 months and take the second. The price also includes the phlebotomy which many other postal tests don't.
randoxhealth.com/en-GB/in-c...
(2). Read The Thyroid Patients Manual by Paul Robinson - lots of good information and quite readable. It's the best book I have found on the subject.
Tests should also be relevant to why you had your Thyroid removed. For example, for Thyroid cancer, the surgeon should also be keeping an eye on you for the first few years and wish to see the results of a full range and include Thyroblobulin. Otherwise 6 monthly tests to check your dose are usual procedure. This can sometimes be a fight because those taking the blood don't always understand but it should be on your notes.
GPs generally follow NICE guidelines or at least should regarding all healthcare issues- you can point out and ask why this isn’t so if the care is different to this … some GPs will follow the advice of your endocrinologist which might slightly differ from these guidelines due to individual differences or circumstances, but prescribing various medications eg Liothyronine becomes a lottery which area you are in and if CCGs allow…if that consultant has written to your GP regarding the after care from the operation it may go back in the hands of the consultant to provide, if GPs surgery can’t.
My experience re testing thyroid has been TSH and only but added FT4 when first diagnosed due to such high TSH reading …there after TSH was done until I saw Endocrinologist decade or so after and he requested my other tests… they included FT4 & FT3 but all other antibody tests were done by endocrinologist… my Endocrinologist wrote to GP for Liothyronine but I was declined, I paid privately for the medication via endocrinologist writing these prescriptions for a year but regardless I ended up just on higher dose of Levothyroxine further down the line as my FT3 bloods were still low but endocrinologist wasn’t risking my TSH going any lower to prescribe more…I am under 1 in TSH and medicated to that with levothyroxine now but without increasing that Liothyronine we will never know if my FT3 would been able to get mid range, it’s always low end and endocrinologist suspects it’s due to other things eg Autoimmune conditions.
Which tests need to be done
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