Hello everyone - I have a new endocrinologist. He is not at all happy that my tsh is still 0.01 as it has been since 2009 !
I have been feeling fine on 100mg Levo and 20mg T3 which I get on the NHS.
he says it’s still too much and has asked me to reduce the T3 again.
When I express that I was told by the thyroid GP I saw privately that this is normal to have the low tsh. He said this is rubbish.
I am not sure what to do!
Thanks 😊
What are your most recent TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12 results
Do you normally split your T3 as 2 or 3 smaller doses spread through the day
Taking T3 almost always results in very low or suppressed TSH
Assuming Ft3 and Ft4 are within range and all four vitamins optimal
Are you on gluten free or dairy free diet
Do you wear a fitness watch to record heart rate ?
If you’re endocrinologist won’t accept low TSH you will need a new endocrinologist
Meanwhile request a Dexa scan
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Have you retested since this post 3 months ago
Please add results
healthunlocked.com/thyroidu...
TSH has diurnal variation and is lowest early afternoon
But on T3 TSH is unlikely to increase even if testing early morning
Many, many members have similar low TSH on T3
Suggest you retest now privately via Medichecks or Blue horizon to see where Ft4, Ft3 and vitamin levels are
Also
TSH isn’t undetectable…..it’s 0.01
Not far to go though 🙈🙈
Not sure what to do? Get a new endocrinologist who understands thyroid issues - and who is not unprofessional and rude about another medical professional.
Slow Dragon has given some good advice. Get a DEXA scan but be aware that it isn’t inevitable or even likely that a very low (or even suppressed TSH) causes osteoporosis.
I was diagnosed with osteoporosis many years before I ever took Thyroid meds.
yes that’s what they are saying . Thanks for all the advice: I might try and get moved to someone else: he is not keen on prescribing t3 at all either.
You and I are identical! We are on the same dose of hormones and have the same TSH which has been the same for the same number of years, in fact mine has been longer. I’ve had the same battle with NHS Endos and had to go private to find ones that agreed the TSH was not important but the hormone results were.
In the end I saw a Endo privately who agreed to put me on his NHS list and actually wrote to GP stating that using TSH results to treat me was not helpful. It’s been a long battle but I’m afraid you will need to change Endos to keep confirming to them that you are not doing yourself any harm.
Please can you add any recent labs including reference ranges....without these it's difficult to comment with accuracy.
If you haven't tested recently then aim to do so after at least 6 weeks on a steady dose. SlowDragon has advised on testing protocol
However...
When I express that I was told by the thyroid GP I saw privately that this is normal to have the low tsh. He said this is rubbish.
Good grief...of course it's normal to have low TSH when taking T3
In any case that is a very unprofessional and arrogant comment!
Until medics get their heads round the following facts little will change and patients will suffer...
TSH is a pituitary, not a thyroid hormone, so has a different function, It reflects the overall thyroid hormone level but does not indicate the individual levels of FT4 and FT3 which are the significant results
T3 lowers TSH and FT4...
and, that so long as FT3 is in range we are unlikely to be overmedicated
Have you optimised vit D, vit B12, folate and ferritin....vital to to support thyroid function.
This endo isn't feeling what you are feeling ...."feeling fine"....they are supposed to factor in your symptoms and how you feel when diagnosing ( I have a link to that somewhere but it's not readily to hand!!)
If you feel well don't be persuaded to change dose based on TSH alone....it is likely to be a retrograde step!
I wouldn't be surprised if he's aiming to withdraw your T3...it happens a lot so be prepared for this.
FT3 is the most important result followed by FT4
TSH is not a reliable marker after medication is introduced....it was designed to diagnose hypothyroidism, not as a diagnostic tool for medicating. It has been tweaked to provide a cheap ( lazy!) way to medicate...and it is causing problems for patients as a consequence.
The following should help you present a case for keeping your current dose
bmcendocrdisord.biomedcentr...
Time for a reassessment of the treatment of hypothyroidism
John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann
*********
thyroidpatients.ca/2021/07/...
********
If this endo continues with his current thought process I'd suggest you see someone else who is more clued up....he's possibly a diabetic specialist, many are!
(I need high dose T3-only to function, my TSH is undetectable. A recent heart scan showed a healthy heart and I have no signs of osteoporosis!)
You know your body better than anyone else....listen to it because it will soon warn you if something is wrong. If you feel fine don't change anything.
Take care!
thank you very much./ Professor Toft was my consultant for years - he was very patient centred in his approach. My bloods have not changed since March in spite of reducing Levo. To 100mg. I think I will ask to see a different consultant.
If your TSH has been suppressed since 2009 It will probably never rise again, even if you stopped levo/T3 completely. With time, the HPT axis becomes down-graded so a suppressed TSH become your norm. He should know that, and not be dosing by the TSH!
Disputing TSH only
Does anyone have 'Central Hypothyroidism'? Where your TSH is undetectable? 
Endo has suggested DEXA scan due to suppressed TSH 
Suppressed TSH
High TSH
