As part of the ongoing investigations into my balance issue my GP has ordered a raft of blood tests, B12, ferritin, estimated GFR, folate, liver function, bone profile, electrolytes, which I have no issue with, however he's stuck TSH in as well, I've managed to dodge GP scrutiny for 7 months but it's finally caught up.
I privately tested TFT in December, my TSH was 0.03, this was on 125mcg of Levo. I upped it to 150mcg in February as my FT4 and FT3 were well in range. And I tried to test privately in April but the test failed. Not enough blood, I found 150mcg a bit too much so following Tattyboogle's advice I'm on 137.5mcg and feel better so far but of course I can't retest myself until June.
My question is I don't think my dizziness is thyroid related, they are only testing TSH and it's highly doubtful my actual thyroid hormones will be tested. If my TSH is still very low they'll try and reduce Levo and assume my dizziness is that.
I know they shouldn't dose on TSH alone. So can I get out of this test and if so how? I did think about lying and saying I'm taking biotin, and therefore the test will be invalid.
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Sparklingsunshine
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I did think about lying and saying I'm taking biotin, and therefore the test will be invalid.
The problem with that is taking a biotin supplement can affect any blood test if biotin is used in the testing procedure, so it can't be used as an excuse to refuse TSH alone because some or all of the other tests could be affected too.
I have refused thyroid function tests at times. I have to have other tests regularly for other reasons so I always ask the nurse what tests are being done. If she says thyroid and I don't want it I just say "Not thyroid this time, I've taken my Levo this morning as I didn't know thyroid was being included and I've been told to not take it before the test, always take it after the test". But I know my test wont be TSH alone, it includes FT4 and often FT3 as well so that might not work for you if it's just TSH they're testing.
You can try just refusing the TSH test, they have to have your informed consent to any medical procedure so if you refuse and they do it then they have breached medical ethics and your human rights.
Assuming you do want the rest of the bloods done ?...then don't try to get out of the TSH or start talking about biotin , . they will probably still send it off anyway ... and you will just raise a lot of suspicion about what you might be up to with your thyroid hormone dose .
take the TSH test , but just tell them you are taking the 150mcg they prescribed in October... (which was evidently too big an increase from 100mcg )and if when they get the results a reduction is suggested.... only agree to a slight 'reduction' on your prescription to 137.5mcg (which is what you are taking anyway ).. or perhaps you should consider agreeing to try 125mcg (again) ... who knows , it might be that you ARE now a bit overmedicated even on 137.5mcg ? .
But don't let them put it back down to 100mcg , because your TSH went too high on that dose .
The fact that lowering from 150 to 137.5mcg has already made you feel a bit better is a pretty clear indication that overmedication might be the problem , and you would be wise not to rule this explanation out completely .
Thank you both, I've got a neck X Ray booked for next week, I'm going to have that and hopefully get the results and see if it's a neck issue. If so then that makes the blood tests redundant anyway. I'm not going to start on the propranolol either. What I've read isn't exactly encouraging.
I'm not ruling out overmedication as nothing is off the plate but if they just test TSH it won't tell me if that was the issue. Its a shame they aren't doing FT4 and 3. I might be more up for it if they were.
the thing with the NHS is you can never really be 100% sure they won't do an ft4, (or even very occasionally an fT3.. i've had 5 over the years without asking , and for no particularly obvious reason). Depending on whether the lab uses a 'reflex' protocol . eg for 'TSH with Reflex' , then if TSH is under range, the fT4 may then be done on same sample even if it wasn't initially asked for by GP.
Hi. My tests for TFT have always had T4 included even when I was in range before becoming hypo. Maybe it depends on the labs where you live. Never T3 though unfortunately.
Being on Levo only I'm obliged to play ball unfortunately 😂 otherwise they can get hissy and refuse my meds. But unless they test my thyroid hormones I'm not going to accept a dose reduction.
If you have been diagnosed as hypo then replacement hormone medication is for life!Hissy or not, for medics to withdraw your medication would be to put your health at risk.
Do your medics want to be responsible for that!!
Different if one makes a choice to self medicate, as I do, but you are under their care.
It sounds as if they are investigating/testing fairly widely regarding your symptoms.
I wouldn't complicate things by introducing biotin as a reason not to test...I'd have the tests as arranged then deal with the results.
You may very well still be overmedicated ...wait for results.
These articles might help you state a case against reliance on TSH labs!
i'm probably missing something here , so apologies in advance ... but if resistance to thyroid hormones is the issue for you , why is hypothalamus / pituitary not also resistant too ?
ie. why was TSH also low ?
if T3 and /or T4 isn't working on a cellular level , why did hypothalamus respond as though it is ?
..... or do you mean a different sort of 'RTH', to the genetic kinds i'm thinking of ?
Shall i shut up now ? ( i realise it's probably the very thing you've had to argue about with doctors for years ... but i still don't really get it .... )
or is your RTH in the "i can't explain it scientifically , but i got myself better anyway " box.
I've no idea if my RTH falls into the "genetic kind" because I have never had TRa and TRb tests for genetic defects.
Some years ago I found a link to these tests,( somewhere abroad to be precise!!) .....now lost the link and should really try to find it again.
However my labs don't/didn't fit the typical genetic RTH results so the rather useless endo I saw refused to consider RTH.
.There are various theories which distinguish between RTH and Pituitary Resistance...and more generalised RTH, for example Aquired Resistance to Thyroid Hormone (ARTH)
I do know that I have a very rare inherited genetic deletion - passed on to one son and one grandson - which the geneticist at the time did not think was related to RTH.
He did say that there may be an as yet unknown genetic variants that may be responsible
Basically..."we just don't know"!!
I've recently sent off a DNA sample to Ancestry, for genealogy purposes, but I doubt that will reveal RTH!!
I was convinced that my problem lay in this area so I just kept digging until I discovered that I need a supraphysiological dose of T3-only to function.
Self medication was my only hope...
I learned that the only reason I could tolerate a dose that may kill other people was the existence of some form of RTH.
I have had to talk my way round this in order to convince medics that I wasn't killing myself and I'm now guilty of ranting about those reasons here because I think there may be forms of RTH that are more common than medics realise.
It would help if they listened to the scientists instead of sticking their heads in the sand
My bio explains my journey....
I'm no expert, much of this is above my head.
Basically I'm just a bloody minded old woman who was driven by desperation to find out why over many years I slowly became barely able to function.
A lot of damage has been done over (possibly a lifetime) by the Cellular Hypothyroidism this RTH has caused ( that, to the best of my understanding) but high dose T3 has resolved or improved most of my symptoms.
Had I discovered this years ago recovery may have been even better.
I don't suppose this helps answer your initial question but it agrees with the last one!
Ranting again!
There are a lot of other people who don't "get it"....join the club! But thankfully it works for me... and that's good enough for me...
Sadly, a vast fortune and a TUK Foundation can only be a dream!!
tattybogle ...do you suspect that you may have a form of RTH?
No , i just have bog standard "my immune system ate my thyroid disease"..
.... it worked just fine before that happened.
I was just trying to get my head round how your thyroid cogs work (or rather .... don't work) after reading some stuff about the congenital forms of RTH on that complicated thing diogenes posted the other day.... have forgotten which paper it was now ..... think it was that one about "other potential markers for measuring tissue hypothyroidism " It's just that RTH is not something i've ever tried very hard to understand before .. so was curious.
But am quite happy to accept the "stubborn old bint finds own cure" explanation you can't argue with a bit of 'real world' evidence .
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you can't argue with a bit of 'real world' evidence .
Can NHS test for the DIO2 gene?
Surgery refused due to low TSH
Major difference with medichecks and nhs tsh same day test 
Endo refuses to treat me on nhs
