I’m due a blood test tomorrow (they will only test tsh & t4). I’ve spend the past two months arguing with my gp saying I want to stay on my current dosage as I feel great been on it nearly a year but my last test tsh was 0.01 under range and t4 50%, she’s insisting I’m over medicated. So she agreed to test again after christmas but if tsh is still under she’s going to lower my dose.
I know it’ll be low as it always has been (and never been an issue until now). So how do I convince her to keep me as I am, I’m so scared a dose change with bring my symptoms flooding back.
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Kh1979
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I'm sorry you have also had to have an operation and it is surprising how many GPs think the same way, i.e. that a very low TSH means (to them) that the patient has become hypERthyroid but that's not the case.
We, the patient, might well do better and relieve clinical symptoms if the GPs tested the Free T4 and Free T3 and ensure that yhe TSH is 1 or lower (not somewhere in the range).
Do you follow this method when having a blood test?
It is a fasting test but you can drink water.
Don't take thyroid hormones before test - but afterwards.
The fact that you feel great indicates that your dose must be relieving your clinical symptoms.
It is a great pity that some (maybe the majority) of doctors seem to think that if we have a low TSH they 'assume' the patient has become hypERthyroid but that's untrue.
When you had your last blood test, did you take your thyroid hormones after the blood draw?
Hiya, yes always bloods first thing, meds after & just water etc. I’ve argued all of your points with her over and over again, I said I’d pay for private tests to check T3 as she refuses to test that because t4 is in range. But she said she wouldn’t be looking at them only the nhs and that she’s “following guidelines”!
I just don’t know where to go from here if the tsh come back under range this week!
I think she’s just pee’d off I’m challenging her (and seems that I know more than she does about my condition) x
I am surprised they don't check both 'frees' i.e. FT4 and FT3 but the fact seems to be that they're poorly educaated and most seem to put the emphasis upon the TSH alone and wrongly think if it is low that we may be taking too much thyroid hormones.
Monitor My Health are an NHS hospital i Devon that offers private thyroid testing, it's £29 for thyroid profile, TSH, FT4 and FT3. But you can get a 10% discount code from Thyroid UK. Making it £26.10. I used it just before Xmas and got my results the next day. As they are an NHS lab that uses exactly the same testing procedures and ranges as any other hospital then your GP wil not be able to dismiss them.
Yes it’s taken a year to get vitamin levels all optimal. Tests done first thing this morning fasting/no Levo etc and stopped biotin over a week ago (learnt all of this info/advice from this group 😃).
As they are an NHS lab that uses exactly the same testing procedures and ranges as any other hospital
Not wishing to be pendantic but I feel that I must point out that they do not use the same ranges as any other hospital.
As ranges vary from lab to lab so do they with the various hospitals. For example, the hospital lab which carries out my GP's test uses an FT4 range of 7-17. Someone yesterday shared their results and their hospital lab's range was 9-19.1 and we do see others too.
It seems that all the private labs use 12-22 for FT4, which MonitorMyHealth does, and although there may be some NHS hospial which use 12-22 there will be as many, possibly more, that use a different range. This is where showing percentage of range to compare results becomes a valuable tool.
Sorry I thought most NHS labs used the same ranges, that said the OP's GP will still find it harder to refute her test seeing as its an accredited NHS lab, if she uses MMH, rather than a private one.
I initially thought you meant your last TSH was 0.01 , but i now see you mean it's '0.01 under range ' ..
TSH 0.34[ 0.35 -5] ... this makes you argument much easier than TSH 0.01 would have.
fT4 was 15.5 [9 -22] .. less than 50% through range , also helpful to your argument .
So it's barely under range, certainly not enough to be any sort of a problem...... and certainly not enough to consider reducing the dose of someone who feels well , and who's fT4 and fT3 are well within range.
Show your GP this study , it's a large ,long term study of people on Levothyroxine , looking at risks for heart and bone problems . It found the risks for people with TSH 0.04 to 0.4 (low but not supressed) were NO GREATER than the risks for TH 0.4 to 4 (in range)
"Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).
Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH ....... and patients with a suppressed TSH ........ when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes ....... "
"Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration."
post for links to lots more posts with further evidence and discussing the 'risks' (or not ) of low TSH, and putting them into perspective Vs Quality of life .
hopefully you 'll have time to get your head round it before you have to speak to GP about dose .
When ft3 was last tested in April 2021 it was only 4.2 [2.4 -6]
.. These suggest your fT3 is highly unlikely to be anywhere near the top of the range now , and since they refuse to test it , they can't prove otherwise .... So if they say "your TSH is showing your thyroid hormone levels are too high" , use these results to show them that they are not too high , in fact your last fT4 was lower than this one, so it's quite likely your fT3 is lower too.
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. "
...... Remind them of this paragraph , if they seem to have forgotten about it .
If they still insist on a reduction ,, then at least get them to make it as small a reduction as possible ...... don't agree to 75mcg , say you might be prepared to 'trial' lowering it to 87.5mcg ( by taking 75mcg /100mcg alternate days or similar) to see if you still felt well on that dose .
If all else fails you could always say "if you insist on reducing my dose against my wishes ,i will have no alternative but to source some extra Levothyroxine without prescription from the internet ... " That prospect might scare them more than the idea of your slightly low TSH does , and so they might agree to leave you alone on 100mcg.. but think carefully before you threaten this (even of you don't mean it ) .. it will get their backs up and it may damage your relationship with them, and make them suspicious about what you are taking in the future , so it's better to get what you need with calm but firm presentation of facts if at all possible.
This is great & so helpful, will have a good read through before speaking to the gp. It’s so frustrating!!!
Thank you so much for taking the time to reply with so much information xxx
Hi Kh1979: I went through the exact same merry-go-round with my GP - becoming severely symptomatic after Levo reductions until I eventually saw consultant Endo privately . Nothing has changed with GPs in 20 years it seems.The information provided here is invaluable in helping your speak to your GP: I know it’s difficult and I never wanted my GP relationship to become adversarial.
Earlier this year I had a conversation with a new GP (telephone) who told me I was ‘hyper’ and needed to reduce my meds . I said I cannot be hyper - I have hypothyroidism - you mean ‘overmedicated’. She agreed. I said if you look at my history I have had suppressed TSH for around 15 years and never yet presented with a physical symptom of being overmedicated, therefore, can I please have an Endo referral before any change is made to my prescribing which I know will result in my becoming symptomatic.
She huffily agreed with the comment “I’ll do a referral but don’t see what good it will do you”.
So I have since seen the Endo which has added T3 to my prescribing and I am 6 months into the change and not yet handed back to GP for prescribing .
The only thing I would say is that don’t agree to a reduction but instead request a referral as you know from experience that a reduction results in a return of symptoms .
‘My body is not a spreadsheet of formulaic numbers’ I said to my Endo - what the numbers say do not always represent a true picture of my quality of life - and therefore require a more considers interpretation than ‘in range’.
Thank you for replying! Trust me I will not agree to a reduction unless my hand is forced! It’s so frustrating when it’s taken me nearly a year to feel this good and one narrow minded gp can take that away because she’s not prepared to listen or accept that I know my own body! X
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