hashimotos: hashimotos. can someone tell me why... - Thyroid UK

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hashimotos

hshimama profile image
19 Replies

hashimotos. can someone tell me why they wont do T3 tests in the uk?

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hshimama profile image
hshimama
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19 Replies
helvella profile image
helvellaAdministrator

My view is that they don't appreciate the rationale for doing FT3 tests, don't know what to do with the results, and cannot, therefore, justify (to themselves or their overlords) the relatively high price of FT3 tests. Especially as the labs themselves keep on refusing to do them - so a GP actually getting a test done is an achievement in itself.

puncturedbicycle profile image
puncturedbicycle

So far - and this could change at any time - my gp is managing to get the tests done because I take t3 (they write that on the form), but that doesn't stop the lab refusing sometimes, and then the gp rings the lab and they retest the blood.

I've finally managed to find the gp in the surgery who will support me in taking the t3/t4 combo, and the phlebotomist always goes through a lot of trouble (off her own back really) to make sure the correct test is identified, the correct request is written on the form and enough blood is taken to do the test, so it makes me feel bad for the excellent professionals involved that their efforts are often disregarded. It's infuriating really.

crimple profile image
crimple

My local NHS Endo thinks TSH test is the gold standard and absolutely nothing else is needed. He also thinks that TPO antibodies are of no consequence!!

In the past the local lab has done free T4 when my TSH has been below range but I have never had T3 tested on NHS.

I have readings from the last 3 years from private tests. I have now come round to the view that my T3 is too low and I could do with T4 + T3 combo but since many CCG's are withdrawing presciptions for T3 on grounds of cost I think I will be asking on here for info re buying T3 abroad.

Thank heavens for this site and all the knowledgeable people who have helped me over the last 3 years.

I found going GF and lacto free helped reduce my Hashi symptoms. I also monitored TPO levels which are now down to 12 (range 0-34)

radd profile image
radd

hshimama,

I have always been lucky getting my T3 tested but GP writes that I medicate T3 on the form.

Just a shame they are now withdrawing my T3 ! ! ....

shaws profile image
shaws in reply toradd

How awful they are withdrawing your T3 Radd. You may have to source your own I think.

radd profile image
radd in reply toshaws

shaws,

Yeh, it's a real bummer ! ! ...

I could buy T3 but already have reserves in place and have decided to switch to NDT as need to get off synthetic T4 to see it alleviates this dreadful mouth problem I have.

Have bought WPThyroid (1 grain=65mg) and having bloods tomorrow so will post results and ask for further info re switch & my NDT dosage but ......

Planning to switch straight over & start with half grain am & half a grain pm, raising half grain every two weeks. Holding at two grains & testing at six weeks.

Then continue raising every two weeks until optimal. My present dose is T4 100mcg & T3 20mcg = total about T4 160mcg so presume I will require about 2.5 grains.

Does this sound a good plan ?. I am in good place and functioning well on low thyroid hormone so definately don't want to over shoot my sweet spot.

shaws profile image
shaws in reply toradd

Your plan sounds good but I will say 1 gr of NDT is around 100mcg levo equivalent but you may know this.

getrealthyroid.com/the-real...

I'm glad you're feeling so much better as doctors appear to have no idea how so unwell we can be.

radd profile image
radd in reply toshaws

Arr.. so I'll need less. Gosh.

I don't know a lot about dosing NDT (yet).

I'll get my bloods and check back in. Am a bit brain foggy with stress of switching meds.

Thank you shaws

humanbean profile image
humanbean in reply toradd

There are differences of opinion on the equivalence of NDT and levo.

My personal experience suggests 1 grain of NDT is approximately equivalent to 75mcg levo, and I don't think my experience is terribly unusual.

radd profile image
radd in reply tohumanbean

Yes HB, My WPThyroid is in a 65mcg tablet and the accompanying PIL states it is the equivalent to 65mcg levo.

Whatever happens I need to tread cautiously.

Uummm... I will be back ... :o))) ....

Treepie profile image
Treepie

I wrote to MP to pass my letter to Minister on the rip off prices,but given the chaos since the referendum he does not expect a response any time soon!

shaws profile image
shaws in reply toTreepie

At least Treepie you've made your point to your MP and we never know someone may take note of your letter.

Treepie profile image
Treepie in reply toshaws

Well ,its the third letter in two years ,but the first showing the actual disparity in price taken from TPA and Marz.

The Times story has gone quiet. Not got much hope of change even with a woman PM with type 1 diabetes.

LtAngua52 profile image
LtAngua52

My GP doesn't even know about t3. When I mentioned that it should be tested and why. He looked very bewildered and said he was out of his depth. It's all about ignorance.

SusanKay profile image
SusanKay

Would it do any good to pass on a book recommendation to doctors for them to read and learn?

shaws profile image
shaws

Because it is deemed useless and the fact that they are told only to take note of the TSH to decide whether patient is on sufficient thyroid hormone replacements or for diagnosing. We, the forum, know better than that of course. :)

web.archive.org/web/2010103...

Cariad-y-Mor profile image
Cariad-y-Mor

What really makes me angry is even when GPs request TSH , T4 and T3 it is the labs that don't comply. They either just do T4 or just TSH ! ! How can that be acceptable. As the overall functioning of the thyroid can't be properly assessed without all 3 tests is this not a case of negligence and putting patients at risk ? Grŕrrrrr !!!!

linda96 profile image
linda96

Simple answer is we don't know why they don't do it - the absurdity of not testing t3 n t4 takes your breath away!

bantam12 profile image
bantam12

We always get TSH, T4 and T3, no special request needed, it's just done routinely, it seems to be down to where you live.

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