Visited GP regarding ongoing long standing back problems, only to ... once again get embroiled in my Thyroid issues, I didnt have any issues, anyway net result,blood test taken and and what do you know, TSH 0.05 ().4 - 5) and T4 15 (9-19) sooo, that has been the case for so long now, I have been taking 125mcg 4 days a week and 150mcg 3days a week I have felt pretty normal on this but oh no, he can't leave it alone, told me T3 has no bearing on anything???? and net result has reduced my thyroxine to 100mcg!! I had no problems with GPs whilst we lived in Wales but since moving here to Kent have had a long running battle to just be left alone feeling reasonably well on what was my usual dose. Any advice please on where I can go from here? 100mcg when you have no Thyroid seems low to me, he had already reduced me to 125mcg since August, have put on about 7lbs in weight and have beyond cold feet and legs and have definitely lower energy levels. GP won't test T3. I have to say my TSH has been out of normal range for past 22 years since Thyrodectomy. Do I go with the flow, file him in the Numpty file or kick up a fuss. ... thoughts would be welcome.
AArrg: Visited GP regarding ongoing long standing... - Thyroid UK
AArrg
Well your FT4 is only 60% of the range so definitely not hyper.
Sometimes low vitamin levels can affect how our thyroid hormone is used so are you taking any supplements at the moment and have you had blood levels of ferritin, folate, B12 & D3 checked?
Very few people manage to get FT3 checked on the NHS and members of this group take that responsibility so that they can help themselves to be well. I suggest you could pay for private blood tests to help your case with the GP.
See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
We do need to become our own health advocates as thyroid patients. Refuse to change dose until they check your fT3.
Have a read through this post which has evidence about keeping TSH lower.
healthunlocked.com/thyroidu...
Also, the NICE guidelines state that you can take responsibility for your results:
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
Try a different GP at the same practice if the one you are seeing is not cooperative.
Hi mumellis,
what Jaydee1507 says plus look at pinned posts on TSH by tattybogle and one I did on NICE, NHS guidelines (the bits that give us leverage). I would point blank refuse to have a dose drop. The your GP is treating the lab work not you.
The NICE guidelines also have a dosing guide of 1.6 ug per kg for Levothyroxine or 10ug per stone in ‘old money ’. Note - it is a guide not an edict. Getting symptom free is the goal.**
I’m 15 stone 5’8” and reached symptom free state when I hit 150ug levothyroxine.
My TSH has never been high - only just over range when diagnosed and was under range long before I was on a full replacement dose.
Start reading up 🤗 Seriously, you need to be able to tie them up in knots. Have a read of my bio - a case study that covers many of the common misconceptions GPs (and many endocrinologists) have. Also there are some posts that map my journey to recovery. I hope they will help and be relatable.
Fuss making needs to start. Utterly ridiculous and going to make you sicker. I’m appalled. Your FT4 is already lower than optimal.
Refuse to reduce dose
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
The most important results are always FT3 followed by Ft4
in appropriate reduction of levothyroxine already likely caused low vitamin levels
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
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
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/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
See detailed reply by SeasideSusie
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
Timings of testing
healthunlocked.com/thyroidu...
what vitamin supplements are you taking
When were vitamin levels last tested
told me T3 has no bearing on anything????
This is absolute rubbish. Full stop!
This "belief" is causing untold misery for so many thyroid patients.
TSH is now quoted as being "the gold standard test"....it is fool's gold!
Research shows that TSH is not a reliable marker yet diagnoses are made on that belief ...not on the scientific facts surrounding T3
You will not be overmedicated so long as FT3 is within, or close to, the reference range
T3 plays an important role in the body's control of metabolism...the many processes that control the rate of activity in cells and tissues.
If (cellular) T3 is low health suffers.
But there are no tests to measure cellular T3, so without numbers medics flounder in their ignorance and spew out nonsense excuses to escape further investigation.
This was all better understood long before tests were devised.. when clinical evaluation was still a skill and thyroid hormone resistance was considered
However FT3 can be measured and for most patients this is adequate...if FT3 is low the patient suffers.
Ignoring FT3 is irresponsible...and lazy.
There is a difference between glandular hypothyroidism when the gland produces insufficient hormone and cellular hypothyroidism when insufficient T3 reaches the cell's nuclei, from the serum.
The latter is fairly rare and hugely misunderstood...or denied. This turned out to be my problem....but I had to discover it myself
One cannot live in the long term without T3....the body will eventually start to shut down
The body needs what the body needs to achieve the T3 it needs....be that by T4 , T4/T3 or T3-only. We cannot be medicated solely on a list of numbers.... our symptoms and signs are also vital.
If you feel well your dose is working...refuse to alter it. Any change is supposed to be by mutual agreement between doctor and patient....it's called Patient Autonomy!
So....don't let any medic opine that, "T3 has no bearing on anything"
If they do...find another medic!
Just to echo the othders: refuse to reduce. You are being treated by your TSH level which is a nonsense. He should really be putting you back to where you were before he started meddling.
He clearly knows nought. As its the thyroid hormone levels that really count!! The tosh that GPs expel is breath taking at times.
So here a little tail. I was unfortunately given a drug that was contrary indicated for people with Hypothyroidism. Though it's been stopped a while now it has a exceedingly long life. It's effect part blocks thyroid hormones. So my thyroid levels are in free fall downwards. But guess what TSH is exactly the same hasnt nudged a nano bit. GP whose a bit more on it.... Had training from me over the years..... Said your TSH is never going to move is it... It's stuck broke. I said spot on. Let it be a lesson to all the GPs here.... We both smiled!! I've had a few run ins over the years with this GP but finally the penny's dropped ' it seems he has respect for me as I now do for him. Sadly he's retiring!!
So don't accept the bull!! Your GP is just making you ill!! He hasn't a clue!
Unfortunately the deed is done by text! I haven't been given any choice in the matter. My TSH has ALWAYS been very low, it has been much the same for the past 22 years. My theory has always been that why would it bother there is no thyroid so no point in producing TSH. Previous practice before we moved here to Kent took this on board and took notice of how I felt, not about matching up with supposed figures.
I also had a Levothyroxine reduction by text with no consultation. I wrote a letter to the GP (handed it in at reception) stating how dissatisfied I was, how my TSH would not budge on a lower dose anyway, and how I would take responsibility for any problems that might follow from staying on the previous dose.
On receipt of the letter the GP offered me a face to face appointment with another doctor who instantly reinstated my dose.
I will never understand the hypocrisy when doctors freak out and start preaching doom, gloom & certain death when your TSH is only sniffing the bottom of the range. Yet, when TSH is consistently over range, they're like "Yeah, that's nothing, it's all in your head. You can't possibly have symptoms until TSH is least 10"
Hello Mumellis :
Well you can file him away as a ' numpty ' but will need to find another doctor better able to help you -
but while the NHS believe the TSH and an occassional T4 reading are the only blood tests needing to be run to assess your ' wellness ' - you are on an uphill struggle -
Going with the flow is at a cost to you and your health-
Is there another doctor at this sugery that you could see - who might just know more than TSH readings - this might be the easiest first option to consider ?
The TSH is the least important reading once on any form of thyroid hormone replacement and we should be dosed and monitored on our Free T3 and Free T4 readings to be in hormonal balance at around a 1/4 ratio T3/T4.
We generally feel best when the T4 is up in the top quadrant of it's range as this should in theory then give us a decent level of T3 - the active hormone -
to supply the energy to our body to function physically, mentally, emotional and spiritually and to recharge our inner central heating system and kick start our metabilism.
When metabolism is slowed - the body struggles to extract key nutrients through food - and for T4 to work well and convert well to T3 - we do need optimal levels of ferritin, folate, B12 and vitamin D - so it reads as though these may now need some supplementation so suggest you ask for these blood tests to run as well a TSH, Free T3 and Free T4 -
and if the answer is a negative you can run the tests yourself - and then present your findings - but you might be making your own situation worse as having knowledge is not well received by some - and this happened to me - so now I self medicate and stay away.
Thyroid uk - the charity who supports this forum have page detailing the private blood companies who can run the necessary blood tests for you - and admin also hold a list of specialist endos and thyroid consultants - both NHS and private - who you might like to be referred to if you find yourself up against a brick wall. thyroiduk.org
There are very many of us n the TSH 0.01 club - welcome -
especially when with no thyroid - as the HPT axis - the Hypothalamus -Pituitary - Thyroid feedback loop - on which the TSH relies on working well - simply does not work - as there is no thyroid there to stimulate - and this feedback loop now open ended - and not closed - as the body intended.
Yes that's my theory, it won't change, it isn't working any more, its always been low for 22 years, i'm still here I haven't fallen apart, I have fallen about 4 times in the past 3 years, I have a dodgy balance issue, I was told some time ago I would fall apart with Osteoporosis, one fall was a complete back flip down a flight of uncovered wooden stairs, did I break anything nope, lots of bruises, its amazing what they will come up with!
Just to add to everyone else’s excellent comments. I have ‘slightly’ hyper mobile joints. Never bad enough to even think of a diagnosis. However my sacroiliac is always worse when my thyroid levels are ‘disturbed’. This gives me lower back pain as well as very weak proximal muscles, painful on standing for any length of time. E.g. trying to do food preparation. Folding laundry for some reason makes everything scream.
I would think with the drastic reductions your medical helper? has been forcing on you, your back will not be doing well.
Yes I did wonder if it had any bearing, I hsd denervation of the S1 joint in February, but the pain started to return just 3months later this last week has been grim with sciatica on both sides, I also have 3 bulging discs in the lower back all I wanted was a rereferral back to Spine man!
100mg of Levo seems to be the standard dose for us thyroid less people …. Drives me bananas as if somehow all of us without a thyroid are the same .. I still don’t understand why they are bent on TSH when we have no thyroid… move on bunch of freaks! Frustrating
T3 taken away, looking for a new source please :)
Advice on blood test results 
Endocrinologist Phoning Tomorrow
Dose changes advice please 
Results including free T3
